Public Appeal For Cheryl Benson Medical Treatment and Human Rights

Short Overview and Your Help Please

noreply@blogger.com (Cheryl Benson) — Sun, 21 Oct 2012 17:01:00 -0400

~ My name is Cheryl Benson click on this to my Blog Profile

I am a Canadian citizen as were my great-grandparents on my mother’s side before me. I got an upper respiratory flu spring 1990 and developed Fibromyalgia and Multiple chemical Sensitivities. The Fibromyalgia was diagnosed by Rheumatologist in 1990. March 16, 1991, I had severe upper respiratory flu with partial paralysis, my ex (husband to be at the time) got it 4-5 days later, on the floor partially paralysed and crying from pain, after saying "it can't be that bad".

I was diagnosed with Myalgic Encephalomyelitis about August 1991 after going through a battery of tests including, viruses, CD counts, my liver by nuclear testing, which was clear of disease by an Infectious Disease Specialist who diagnosed or saw over 400 patients since the Lake Tahoe Breakout. I was given printed information on Myalgic encephalomyelitis from him back to the 1930's. Chronic Fatigue Syndrome was put on my medical records thanks to the CDC I suspect.

By 1993 I listed 40 ME/CFS and FM symptoms to my GP and had to stop working in 1994 on Long Term Disability from the Ontario Provincial Government after trying different hours, short term disability, the effort just made me sicker. I became mostly house and bed confined with fluctuations. Exertion (trying to do household chores, take of myself, walk, laundry, groceries etc) caused all my symptoms to worsen for days, weeks, or months after. The neurological difficulties, and CNS over stimilated were huge problems for me also, as well as pain, hyper insomnia or sleeping mostly for days.

In 1994 I tested positive for Hepatitis C, and was diagnosed with ME/CFS again by another Infectious Disease Specialist while in the Kutapressin Trials which gave me some of my life back. Far from well enough to return to work, even regular part time, my energy was up and I wasn't replasping (called a crash back then - I had never heard of PEM or PENE) nearly as quickly.

In 1996 I was referred to a psychiatrist for neurological problems inherent with ME/CFS, sensory overload, Central Nervous System (CNS), severe insomnia, some depression related to severe PMS cycle that started after ME/CFS and 3 prior adverse reactions to antidepressants, 2 that landed me in ER. The sensory overload was at first focused on with some success, however it got pushed aside.

Over a 8 year period, psychiatric drugging started without 'informed consent" (not told what the side effects/adverse reactions of the drugs, not even told what many of the drugs were), for a neurological illness, at doses far beyond what I could handle, most I did not need, if nutrition and natural alternatives had been tried instead. I went into the black hole of Major Depression caused by the drugs, I had never experienced before in my life.

I belong to a subgroup of ME/CFS survivors that are antidepressant and drug dose sensitive or intolerant, depending on the individual and varies. This is found in Clinical Medical Journals back to 1993.

After years of serious adverse reactions and over 50 psychotropic drugs, many given repeatedly, different doses, different band names, given different groups of drugs I was a mess and had deteriorated starting the first year and continued to. Not one medication was I given informed consent on.

In 2003 I was misdiagnosed yet again, bipolar, and an real absurd misdiagnosis, although both were at almost 50 years old, D.I.D. = Dissociative Identity Disorder, it doesn't mean dissociation caused from psychotropic drugs and unethical psychiatric practices, it means Multiple Personalities, 2 or more in one body taking over with loss of time. I had no alters, and no loss of time. 50 psychotropic drugs and 10 years later, my child hood nick names I used for Inner Child Journal Work since 1992 got put down as alters, much due to a Social Worker and some kind of dissociative, psychosis from years of high doses of psychiatric medications. The diagnosis was not put down as a serious misdiagnosis (absurd misdiagnosis - no offense
meant to those that are diagnosed with it, however, notably it only is diagnosed in North America where psychotropic drugging and labeling are out of control, the rest of the world speculates it even exists) by other doctors which they are supposed to report, and was known to be very shortly after. It was too convenient to have on my medical records, for what was to happen just over 2 weeks later, being brain and body damaged for life, every muscle and ligament in my body repeatedly.

In 3 months on bipolar medication I was damaged for life repeatedly . The first bipolar "Lamictal" cocktail damaged every muscle and ligament in my body shortened and stiff, and affected my speech, with no diagnosis and was refused hospitalization. I was given drugs that shouldn't be mixed together by a doctor who also refused to hospitalize me, who begged me not to go back to ER, he said to reverse the damage that caused lead pipe dystonia (my arms frozen in the air my legs out like lead poles, some noted in the green tinged videos, I had said Neuroleptic Malignant Syndrome as that is what I think happened with the Lamictal cocktail just prior and is life threatening), and left me repeatedly brain and body damaged for life only letter referring to it in some detail by Dr. Saul in late 2003 stating the muscle weakness was tardive dyskensia which is a movement disorder and not the extensive muscle and ligament damage throughout my whole body.

I had another adverse reaction in February 2003 to the second bipolar "valproate" cocktail, similar but not nearly as severe as the on in January 2003 causing my muscles and ligaments to be shortened and stiff again (explained in more detail under the summaries).

The third and last bipolar "tegretol" cocktail caused Acute Dystonia with seizures damaging the trunk of my body in March 2003 which is when the Dystonia full body movements started, although I didn't know what it was at the time - on files as pseudo-seizures involving the trunk of my body. This was the first time I was abused in a hospital or by hospital staff which continued in every hospital after even with family trying to protect me. It was also the first time I saw "several suicide attempts" on my records and I had never tried to kill myself. They didn't believe I needed help dressing, that I was disabled, needed a wheelchair to get home, or that I couldn't push a manual wheelchair, the ligaments under my arms were too damaged, no matter, I couldn't push it. The EMS team had left mine behind and promised an ambulance home which I was refused by the ER doctor. I was partially dragged up by a Taxi Driver to my home. My power-wheelchair loaner was delivered the next month.

I was told the muscle spasms and full body movement disorder was a "weird kind of full body dyskenisa" by the nurse that saw me in my home, who put down on the records, "muscle spasms and purposely controlled movements". Those movements kept reappearing every time I came off medication that was making me more rigid and brought down my CNS. I have been left to wake up to every day since 2004, unless I am already paralyzed from Generalized dystonia.

This is only one occurrence of many that happened and more detailed in the Summaries, although not extensive in detail of everything that happened.

I discontinued the bipolar medications after the 3 months, also on the advice of my GP. The extensive repeated physical damage let me unable to lift more than a book most often, chop my own food, often help changing clothes which became permanent at times, lift pots or pans, prepare my own food, repeatedly affect my speech, the muscles around my mouth were so damaged I couldn't hold most of the food I was eating in my mouth for a long time and it would dribble on to me and the floor. I still have problems, mostly with liquids.

The extensive and repeated physical damage, the movement disorder was left off my medical records (later I have found out they listed the full body slow and rapid jerking as psychiatric, pseudo-seizures, psychogenic, when it started from psychotropic drugging and a nurse had already reported it as ...'a weird kind of full body dyskenisa in 2003), nor did I receive any medical care for extensive treatment, diagnosis, support recovery or care that is afforded to Canadians. No one would hospitalize me. After the first extensive brain and body damage I started being abused in every hospital physically and or verbally, as well as my mother.

I was left on drugs mixed together doing more damage throughout 2003 and causing more rigidity, by summer I couldn't raise my arms above shoulder height and had to have many of my clothes changed and bathed or showered by homecare all the time, not just some of the time. I was bed confined for the most part, the first time I was to loose my calf muscles. The drugs continued to damage the left side of my body that started to drag behind me, and when I came off them in 2004 the extensive damage was worse.

When I started coming off 8 years of medications (one 11 years) the left side of my body paralyzed and remained weak and for the first time my head fell on my chest, like on a string not being able to hold it up which continues today, as well as the trunk of my body giving out and falling forward.

I had seizures, Dystonia on the back of my hips, legs, neck, face, arms which I didn't realize until June 2004 (I had been riddled with it since 2003) and myocolonic movement disorders daily and was left to seize, convulse from the movement disorder often until I paralyzed from the dystonia from the waist down in my bed for months, never given the right medication to stabilize them, which turned into years, leaving me incapacitated most of the time, unable to do anything.

I have Generalized dystonia which is the cramping of groups of muscles, or contracting them, and causes paralysis which recently (2010) has become life threatening, prior I would paralyze from my waist down, now my whole body paralyzes, often unable to speak.

Psychiatric was put on my medical files for serious adverse reactions to antidepressants/psychotropic drugging, and repeated misdiagnosis and unethical practices by psychiatrists and unqualified health-care providers, and it was kept on to cover for the extensive and repetitive muscle and ligament damage done and the seizures I had for years coming off the drugs and the Dystonia. The College of Physicians and Surgeons, said that any misdiagnosis, whether physical, mental or presumed mental is to be reported on medical files, no one did. They also said doctors are supposed to advocate for you and help you if you are being abused by medical and health care staff ... none did. Also 4 suicide attempts were added to my files, I have never tried to kill myself. There is a lot of falsified/incorrect information on the medical records that I have been able to obtain so far, much left out of what really happened, and the human error across the board is horrendous.

A doctor in 2003, said there was nothing I could do to get my medical files corrected. The College of Physicians and Surgeons says there is, however, you have to obtain your medical records first which is costly, especially with 6 hospitals and 3 doctors to have them corrected. The College of Physicians and Surgeons can't force doctors to correct medical records if they refuse, or force them to do anything, nor can the Government.

My main focus is to get me the extensive medical and neurological care I need.

However, I have had to start having some of my medical records corrected as they are affecting me getting health care for years which no one in my condition should be left to do.

We have tried every level of government for help for years to no avail as well as other groups, Amnesty, Police, and Human Rights, Ombudsman, Politicians, individuals, philanthropists, and many others. We were told to get me out of the city, the province, the country and I looked for Sponsors for some time, however I worsened so much after coming off the remaining medications this proved impossible and I was left badly brain and body damaged and convulsing every day from dystonia as well as paralyzing often.

I have several types, generalized dystonia and myocolonic worsened by low blood volume and dysautonomia, that comes with ME/CFS and often FM and worsens everything else, as well as the extensive muscle and ligament damage of January 2003. Many in the medical profession have little to no understanding of ME/CFS often cited as "fatigue" or "chronic fatigue" when there are more than 40 different symptoms affecting every part of your body, let alone dysautonomia that often comes with it, and how it affects the body, or low blood volume and often citing effects from it as psychiatric when they were not.

The Dystonia was on the medical records I have tracked back to July 2003, and left off as diagnosis and I was clearly riddled with it, unable to hold my neck up or the trunk of my body often as well by January 2004. And the severe movement disorders convulsions I endure every day damaging my arm sockets, repeatedly put down as pseudo-seizures, even though a nurse in my home in March 2003 when they started said they were a "weird kind of full body dyskensia" put down on the medical records as muscle spasms and purposely controlled movements, those movements I was left to wake up to every day for the most part and later thought they were   "myocolonic dystonia".

By June 2004 I knew I had tardive dystonia and the movement disorder, I mentioned to a GP who never responded. And the full body movement disorder, slow and rapid jerking or full body muscle spams, was often mixed with seizures it made diagnosis harder.... with the exception of what that nurse told me in 2003, even though she put muscle spasms and purposely controlled movements on the medical records, she would have told the two doctors involved what she told me- "a weird kind of full body dyskenisa", whether via phone or on medical records - the last I have been refused by both doctors.

Dystonia was listed on my medical records repeatedly since Jan-Feb, 2004, noted in medical records back to July 2003 that I have found so far, as said left off as a diagnosis. Why would they want to cover for dystonia, mine is Secondary and caused from prescribed medications, the two dystonic events I had which I didn't know that is what they were called at the time, or the many psychotropic drugs I was given,many that can cause dystonia they don't tell you about: from antidepressants, lithium, buspar, xanax, neuroleptic's, dopamine antagonists, to name a few - no informed consent possibly?

I was cut off doctors and medications that were barely controlling the myocolonic Dystonia, and generalized, (I was left seizing and the movement disorders and paralyzing in my bed from the waist down since 2004) I wake up to every day. I was cut off all medications and doctors and left badly brain and body damage in Fall of 2004 although the doctor had been trying to get rid of me for some time after I was damaged, and I wasn't going along with the "psychiatric theme" to cover for extensive damage and knowing the dystonia, seizures, and full body slow and rapid jerking was anything but "psychiatric" although certainly caused by psychiatric drugging.

My mom or I have had to beg, literally for any medication since. Often left without any medication for long periods of time which caused more damage. The last neurologist prior involved and begged by my mother for medications and the life of her daughter, who faxed in prescription for several years being mostly bed/house confined kept cutting me off one medication that was never enough to control the paralyzing and cramping of the dystonia , or the slow and rapid jerking of my body every day, which I often refer to as convulsions, and putting me into rapid withdrawal and refused to help any more in 2009, even a neck collar to hold my neck up, or supports for the trunk of my body, and cut me off.

Since fall 2004, I was left to find on the internet natural means to help keep me alive and create dopamine in my brain, bring down my over sensitive and very damaged Central Nervous System (CNS), and bring up my low blood volume which lessoned the cramping and paralyzing from the Generalized Dystonia, the muscle ligament damage that caused them to be shortened and stiff and the movement disorders and anything that would relax the spasming and paralysis of the dystonia. I was left fighting for my life with badly falsified and inaccurate medical files so no other doctor would touch me.

The damage is extensive and very complicated. Anyone else with Brain and extensive body Injuries/damage gets top extensive neurological diagnosis, treatment facility, care and extensive recovery programs at paces they can handle as well as support for family members. I have received none.

They say there is no brain damage; all of my body is damaged extensively and repeatedly. Dyskenisa/dystonia does not show up on scans made yet the extensive muscle and ligament damage will, as well as damage from the dystonia throughout my body. I was refused a full body MRI at every turn while a caregiver who was abusing me in my own home had one from her waist to her knees for a problem with her knee in 2003/04. This was intentional to keep the extensive damage and the extent of it off my medical records as long as possible. There is some mention in medical records I have gotten, that my muscles were weakened and/or I was crippled since the first round of bipolar medications in January 2003, a year later noted in 2004 on records, as well as small infarct right side of brain with the doctors initials, written tests said later there was none.

I greatly need the movement disorders stabilized and the generalized dystonia stabilized and mitigated asap, it has been causing paralysis since 2004, and now full body paralysis since September 2010 and is life threatening. Recently we got dystonia listed on hospital records, but they refused to hospitalize me and sent me home still mostly paralyzed and dropped in my bed by ambulance team. They refused to hospitalize me still after all these years, the Toronto Western were I should have been sent in January 2003, and also where I was misdiagnosed. You can read about that experience and others on the blog and under Summaries ONE, and TWO at the top of the blog and side bar.

In total there have been 16 attempts to have me hospitalized even with family and friend present, whether I had a doctor or not and was refused except for one hospital where I endured abuse and who also was doing everything to keep the extensive muscle and ligament damage or care for it, and diagnosed properly and off my medical records as well as the dystonia and seizures.

The malpractice and collusion affected every area of my life including supportive care wheelchair rent to geared housing, Assistive Devices Program, Disability Papers, many items I qualify for from my insurance; all falsified or refused, leaving me without supports as well and thousands of dollars worth of care, treatment and support items I was entitled to back to 2003. My disability papers have to be signed each year by a doctor it is also my pension, life insurance, medical, dental. By 2006 we thought it was over but that was not to be the case.

From 2003 to 2010, 6 hospitals were involved, some repeatedly and 3 doctors in private practice. After the first brain damage I was abused verbally and/or physically in each one, my mom in 2, including assault the police would do nothing because it was the medical field. In total 16 attempts to have me hospitalized for everything guaranteeing honest test, diagnosis results has been made, including through the Ministry of Health in 2005 and the NDP who were reluctant to say the least, and pushed to have me hospitalized but the Ministry of Health backed out and the NDP did nothing, after starting negotiations to have me hospitalized at the Toronto Western neurological hospital which they were refusing.

The Ministry of Health did send a letter later in 2005 saying I had been given every opportunity to receive medical care. Please read Summaries ONE, and TWO, and you will see this was anything but the case. (Summaries ONE and TWO also linked on the side bar at the top left).

Through homecare services from 2003- beginning of 2006 provided by the Care Center who covered for the hospitals and doctors as well, I was badly abused by homecare also and broke every Client Bill of Rights there was, repeatedly. They were cut off   in 2006 temporarily and they cut me off and we discontinued any association with the prior Access Center (which I found out recently was closed) and my mom kept me alive with a fractured spine, and riddled with osteoarthritis.

Another attempt was made in earlier in 2008 to have me hospitalized though the Mt. Sinai, for extensive testing and diagnosis for everything at a pace I can handle (I am mostly bed confined and wake up to convulsions daily and parts of me cramping and paralyzing from the dystonia ) and did not work out, they were going to send an ambulance and have me admitted at the Western neurological hospital where I should have been sent January 2003. They quickly changed their minds when told there was more damage than on the initial letter, posted on site here and the dystonia and full body movement disorders, and that it had progressed and worsened.

I was asked if it would be a "clean slate", I asked for whom, and what about my medical records? I didn't know what they were referring to for "clean slate" as there was nothing I could do about the malpractice and negligence, the time for suing was long over. There is no "clean slate" for Human Rights violations and serious abuse, physical and verbal, that occurred and was allowed to continue. Also the intimidation and abuse allowed to go on, it was made very clear not to call 911 anymore or to attempt to have me hospitalized with honest tests, diagnostics and treatment for everything after 6 hospitals being involved in Toronto, some repeatedly.

No one can force a doctor or hospital to do anything, except the Medical Associations, which is rare indeed, and usually for sexual assault, although we tried through the Ministry of Health in 2005 and did not.

I did look for a Sponsor in 2005 but I worsened to much and was left to paralyze in my bed and/or the daily rapid jerking of my body on almost every part of floor in my home for years, damaging me more, and causing the ME/CFS to worsen drastically as it is the equivalent to extensive exercise. The original muscle and ligament damage of January - March 2003 caused me to "crash" constantly from just walking in my home and kept me more bed confined, unable to use the power-wheelchair I got put through Assistive Devices Program with ME/CFS listed, no physical damage, I wondered why it had to be appealed. My supportive care wheelchair accessible housing also no muscle and ligament damage listed, and I have been on the waiting list for 10 years!

We are hoping another push to the new head of the Ministry of Health and the NDP to hospitalize me in Toronto Western, where they have all the facilities needed for the extensive muscle and ligament damage and dystonia, movement disorders clinic, and is the only hospital in Toronto that does. I can't go back and forth for appointments which has been used against me for years, tests set up I could never get to even prior to the repeated brain and body damage, the ME/CFS was too severe.

Perhaps with a public push, it may happen, the guarantee of honest neurological and medical tests, treatment, and care though as proven impossible so far even by government they have refused to help. I will be requesting again as well as out of country paid hospitalization the OHIP program that does this. You of course need a doctor here for that, I have none and need one in-house that will not interfere with my rights, or having my medical records corrected, as the others did prior. Ontario should be paying and should have taken action years ago.

Also that family doctors are not provided for the bed-houseconfined is a flagrant human rights violation.

I also need a doctor, and am unable to get to one, because of my condition, I am mostly bedconfined, and even when (if) I will be able to, my medical records are so badly falsified and extensive human error, most doctors would not take me on. I am also a high maintenance case with my ME/CFS/FM, etc., prior to the extensive brain and body damage which many doctors and health care discriminate against still in 2010. There is extra billing time for ME/CFS for some time now, I require a doctor with knowledge of it and has time and patience as well as the neurological damage, so the cycle of discrimination stops, prior tests were set up that were impossible for me to get to, many the wrong ones, ones I needed not on, but it looked good on paper and like I wasn't complying.

I also know a lot about my own illness ME/CFS and FM than most doctors and need a doctor that works with you and keeps you informed as to what they are doing, suggestions etc.,, and I want natural/neural path involved as well that heal people. Also informed consent on any medication even considered being given to me, I research them all as well as testing to be discussed prior.

Unfortunately, I need proper medications to stop the Myocolonic Dystonia and Generalized Dystonia that has spread through my body, cramping and increasingly paralyzing all of me now, full body paralysis, which has become life threatening, and damaging my body even more for years, on top of extensive muscle and ligament damage. I have tremors on both arms and a strong one on my right side that often comes with cervical dystonia which I have as well, also seizures. I also need immune support, lungs, pain medications, and viral tests for ME/CFS, XMRV, and others available from the USA. and am hopeful for Amplegin in my future.

I have Hepatitis C and have never had my Geno type or Viral load done and a suspected fibroid under my liver since the later 1990's. My once beautiful teeth crammed together from the dystonia in my left jaw, parts of teeth missing and filled with cavities. I will have to be knocked out for dental restoration, the list goes on, including deformed feet since mid-2003, extensive shoulder socket damage, spine damage, CNS damage, joints giving out and buckling, my knees damaged and buckling, the whole left side of my body that goes weak and often drags behind me on/off since Jan/04 has buckled and collapsed as well as my spinal column, I have lost more 1/2 of my hair . Repeatedly my spine disc's have been herniated, from paralyzing and cramping backwards, or the trunk of my body giving out from the dystonia.

Canadians with this amount of extensive damage, even back to January 2003, would be hospitalized in a neurological medical hospital for as much extensive testing, treatment, physio, supports and care as possible.

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If this can not be done in Canada, there are several Neurological Medical facilities in the USA that have the tests and knowledge needed and are up-to-date on ME/CFS, CNS damage, and extensive neurological damage from prescribed medications, as well as movement disorders, Dystonia, spasmodic Dystonia, dyskensia, myocolonus dystonia/dyskenisa, tremors, seizures, and extensive diagnostic tests and viral tests, some very specific not available in Canada.

The majority of the Sponsorship funds can be left directly at the hospital, my mother Janet Benson has set up a Trust Fund at the Toronto Dominion Bank for any costs incurred, natural alternatives, legal, getting help, home care support (I can not stay alive without it) and/or sponsorship, the donation button goes to it, for full or substantial neurological hospital sponsorship please email for details.

Transportation and care provider or nurse to accompany. I am unable to bath/shower myself, change my clothes or prepare my own food, lift much more than a light book and am mostly bedconfined left like this for years. I can walk very little, can’t push my manual wheelchair the ligaments under my arms were too damaged, and need my power wheelchair. Myocolonic Dystonia convulsions, movement disorders, paralyzing/cramping from dystonia, have to be stabilized long enough for transportation.

I will not see any psychiatrists – full stop.

I need neurologists that specialize in movement disorders and dystonia, dyskenisa, internists, especially those who work with brain, extensive muscle ligament damage and CNS damage, from prescribed medications, , ME/CFS, FM, HepC . There is so much damage and my drug sensitivities, my case is very complicated.

I deserve better than this, there should be a public outrage at what has been done and allowed, and stop gaps put in to stop it from happening to others. Some of the details of what happened and continue are horrendous and are posted on the Blog here, and far from everything that happened.

I never thought that this could happen, be allowed to happen in Canada. Mine is far from an isolated case.

~ Numerous politicians, provincial and federal, media, medical associations, Ombudsman, advocacy groups, government, Amnesty, have been contacted repeatedly for years to no avail, and also prior looking for Sponsors until my condition worsened drastically again, last year, even earlier this year I could barely speak at all, talk on the phone which is worsening, often I can not speak at all and am enduring full body paralysis since October 2010, which again was refused hospitalization, or medical care and treatment at the Toronto Western on December 24, 2010. The hospital I have needed to be in since January 2003 for extensive medical care.

So far the Ontario and Canadian Government has proven incapable of ensuring my rights as a Canadian, both medical rights and human rights violations and have a hands off policy for doctors and hospitals.

I had a bit of improvement in early and mid-2008, the paralyzing from the dystonia greatly lessened and then worsened again, as does the ME/CFS and FM. I had improvement again in mid-2010 for 3 months, the dystonia and myoclonic was not as severe. By October the dystonia progressed to full paralysis, and I am left with out proper medications or care. See the latest update on the last attempt as mentioned above on December 14, 2010 to have me hospitalized.

I am not giving up as slow as it takes, to get the honest neurological medical care I am entitled to by Canadian law, Canadian Human Rights and the Universal Declaration of Human Rights without abuse, coercion, torture, or making deals that I scratch off the human rights violations of abuse, in order to receive medical care I am entitled to.

That I have survived this long is a testament to my courage, and determination to get the care I am entitled to and live an autonomous life as possible and move forward with my life.

I want in-house training for computer programs, making videos, digital art, photography and more to provide some independence financially.

If they do not hospitalize me soon I may die in my bed, or be so damaged, there is no quality of life at all, there is little to none for many years.

I need help with letter campaign to the Ministry and the Neurological Hospital here where I should have been January 2003. Often I can't type or sit up, and need help, and am paralyzed or convulsing from the dystonia, the ME/CFS severe, the Hepatitis C chronic, it is beyond people's comprehension how ill I am let alone the extensive damage.

Please read the Summaries, and How You Can Help listed at the top of the blog, and help to ensure I get the honest neurological medical care, as much as possible in-hospital at a time, as I am 98% bed/house confined for many years, my condition now is often critical.

Thank you

Cheryl Benson

update on paralysing, medical records, staying alive .... and a test post with new feed

noreply@blogger.com (Cheryl Benson) — Wed, 2 Mar 2011 17:28:00 -0500

Yes I am left to fight off, control full body paralysis or cramping and contortions from dystonia every day since October and after being dumped in my bed still mostly paralyzed from dystonia on December 24, 2010, with no proper medications, of course not hospitalized and fighting for my life... I thought I wouldn't live through severe ME/CFS, I did. Keeping on going with the extensive muscle and ligament damage of January 2003 (I think was neuroleptic maligant syndrome), Lead Pipe Dystonia February 2003, February 2003 similar to January 2003 not nears as severe, March2003 acute dystonic reaction involving all of my body mostly the trunk as well as seizures and left with myocolnus movement disorder after, left on drugs doing physical and brain damage for the rest of the year to 2004 including imovane at high doses a doctor knew I was still being given by another doctor and interfered with every other drug I was prescribed and still doing damage and didn't say a word, as well as other medications mixed together by GP from hell that never should have been, and given medications you don't give to someone with dystonia which can cause and make it worse, which they did). I survived, hardly blinked an eye on the first major muscle and ligament damage. Its when the abuse verbal and physical started in the hosptials March 2003 after repeated refusals for the doctors involved to hosptialize me, the intended terrororizing started having the effect they wanted and continued involving 6 hosptials, some repeatedly in Toronto, several times life threatening, as well as abuse in my own home by PSW's from the local CCAC who covered for the abusers, the doctors and the hospitals.

The dystonia although I had it generalized since 2003 and didn't know until June 2004 as I had been told both the muscle ligament damage and the dystonia were tardive dyskensia by the GP from hell, although I suspected earlier including myoclonic dystonia and used "dystonia" to describe the two often confusing people and several specialists although several I said both myolconic dystonia and dystonia and was left to paralyze from the waist down since February 2004, low blood volume POTS/NMH making it worse, which was used against me, left day in day out to paralyze in my bed here, at home. I won't go into details now how I escaped that for several years and what I used.....I will at some point .... after I used natural alternatives to create dopamine and bring down my CNS system, and bring up my low blood volume, didn't stop it but kept the paralysing minimal, the full body movement disorder continued every day, on every part of the floor not covered by furniture for years.

The paralyzing full body is horrific, and constant battle every day to try to keep it under control without proper medications, medical care, and lets not forget I have extensive muscle and ligament damage first throughout my body still not on medical records or care or treatment - nothing, nadda ..........

I started a new feed for this blog, pubicappeal for cheryl, and started a new more simple one called savingcheryl, that I may switch the feeds or start a new one, although the set up is what I wanted on my website for some years, putting in page sorter for me that works with the wordpress theme seems so far beyond his capabilities ....... they are beyond mine, I can barely keep myself alive, that's why I hired a webmaster ........

testing the feed ....... it's been a horrific night and day, I started having full body paralysis 3am, yesterday I woke up paralyzed, it's been a few weeks, near a month maybe, that I have only had constant breakthroughs of paralysis, not waking up to and a constant battle every day. I don't know if I will make it through this .... we all die.... I had no idea that dystonia could kill you or paralyze all of you ..... it was left to worsend and clumps kept arising and started linking together through my body ...... on top of the muscle and ligament damage, on top of the severe ME/CFS, and fibro .....oh yes I have hep c.

it's heart breaking and maddening to read the medical records, the falsification is HEAVY, the human error horrendous, of course no abuse is mentioned. Pain in overload ...... I was so hoping I could be showered today ...... well I got my clothes changed all by myself, a rarity ............ usually has to be done for me or be helped, tried for 2 times a week if I was up to it ..... now it's weeks. with that said it has been over a month prior, even with private homecare - she didn't care and I was too bad off and my shoulders too damaged to even raise my arms to put on a t-shirt from being left to convulse every day

well correcting hospital records still escapes me, I been trying 1 hospital since December 2010, guess we now which that is ...... i too bad off, can't type, can't focus, can't sit up.... or I just want to say the truth, which I can't I will get more of a backlash, as if they haven't done enough damage already, they can say what the hell they want on your records ...... but you ..... well I been abused enough by this SOB's, 6 hospitals, physical and or verbal for staying alive and keeping my ground and refusing their psychiatric bullshit labels to cover for extensive damage from psychiatric drugs....... I so want to speak my mind ....... I am fed up with the intimidation, abuse and corersion

signed: trying to stay alive -> where is everyone to help me
in major pain for days _> thinking the paralysis may be the end of me, and I am not ready to go yet

Woman Paralysing Daily from Dystonia refused hospitalization by Toronto Western Hospital

noreply@blogger.com (Cheryl Benson) — Sun, 9 Jan 2011 14:36:00 -0500

Woman Paralysing Daily from Dystonia refused hospitalization by Toronto Western Hospital

Above is a picture of me, with parts of
my body still paralysed from dystonia, including my spine, hips,legs, neck and arms, in ER December 24, 2010. All my muscles and
ligaments where damaged, causing them to be shortened and stiff in January 2003, the dystonia came after from medications I was told was going to reverse the damage after being begged by my GP not to go back to ER. All this from psychotropic drugging, especially during 2003. I received no proper care treatment or have to this day. It left me unable to lift more than a
book, prepare my own food, chop, lift pots or pans, and have to be
showered and my clothes changed most of the time. I had one doctor
tell me “that's in the past”.

On Christmas Eve Day, I awoke in the
morning to something that has been happening to me since March 2003,
and daily since April 2004 after coming off 8 years of psychotropic
drugging, the slow or fast rapid jerking of my whole body, and parts
of my body cramping and paralysing from dystonia often unable to
speak. I was cut off medications and doctors in fall 2004 and since
then it has been a daily battle to keep the movement disorder under
control and from paralysing, using natural alternatives to create
dopamine, relax my damaged muscles and the dystonia and bring down my
Central Nervous System. Froom 2006 - 2009 I was allotted one medicine on and off for dysotnia - clonzapam that was never enough and the scripts faxed in by the neurologist.

Dystonia is the cramping of groups of
muscles and ligaments, causing rigidity and often stay permanently
cramped in un-natural positions and is extremely painful. I am also
a survivor of severe ME/CFS since 1991, which has kept me mostly
bed and house-confined.

Being refused the extensive
medical care I was and am entitled to for the very complicated
physical damaged, I did what I could to keep myself alive. Over the
years the muscle and ligament damage and dystonia worsened, and I
still awoke to the slow and rapid jerking of my body, parts of me cramping and paralzying often and have been down on almost every part of the floor in my home. I used alternative
medicine to create dopamine and bring down my Central Nervous System
(CNS), however, after a period of time it would back fire and the
dystonia would cramp more.

By October 2010 the dystonia
worsened drastically, often all of me has being paralysed for hours
at a time as soon or very shortly after waking up. Blocks of muscle
on my hips and spine cramp and contract pulling my whole spine
backwards, twisted like a pretzel or pulled up almost in a fetal
position, the variations are getting more extreme. My arms have
become increasingly cramped to my chest, leaving me unable to access
the water jugs kept by my bed or call 911. But then why would I want
to call 911, when all I had endured prior from 2003-2010 was physical
or verbal abuse by healthcare staff, or refusing to hospitalize me.

911 was called this time by
my long time friend of 27 years Joseph Florence, a retired Senior
Airlines Captain. Ambulance attendants arrived, with a gurney that
does not fit in the building elevator. The building and apartments
are not wheelchair accessible either, I have been on the waiting list
for 10 years for wheelchair accessible housing and supportive or
independent care.

The Ambulance team, rolled
me in a sheet and got me out via my own manual wheelchair I can not
push, I have a power-wheelchair I am rarely able to use in my own
home and have been on the housig list for wheelchair accesssable for 10 years. They got me on the gurney in the lobby and into the ambulance,
my long time friend following behind in his car. My body was cramping
and contorting severely from the dystonia with electrical storms up
my spine, and severe tremors with both arms, as well as extensive
muscle and ligament damage underneath from adverse drug reactions in
January 2003 that I have received no care, treatments or support for.
On the way in the ambulance the Ambulance attendant said I had a
seizure as well, it was then the ambulance team turned on the red
warning light and made haste to the Toronto Western Hospital, where
they are known to have one of the best movement disorder clinics and
care for dystonia in Ontario, which I have been trying to get to
since I was first severely damaged from psychotropic drugging and a
misdiagnosis of bipolar in January 2003.

In the ambulance I felt I was verbally
pushed to give information I didn't want to and while under extreme
duress. Upon arrival I was put in an ER stall around 12 noon. I was
left there with no medical care for approximately 4-5 hours. My body
was severely contorting and cramping, with paralysis, my muscles and
ligaments pulled and feeling like they were being ripped apart,
possibly causing more damage to my arm sockets, knee caps and spine
that have already endured much damage over the years. One attendant
in ER told me “you stop doing that” while trying to get a
hospital gown on me and my body contorting and twisting in awkward
potions, my arms often going up and down rapidly from strong tremors
or cramped to my chest. The dystonia continued to progress to being
acute, and a dystonic storm which I have endured repeatedly for
years.

I was finally given saline 4 to 5 hours
later, the first bag of saline I received was about the size you
would give to a baby, and I have low blood volume as most with
Myalgic Encephalomyelitis (ME/CFS) do, some are given IV Saline
several times a week. I also belong to a group of ME/CFS survivors
that are drug dose sensitive, especially to antidepressants, but is
dependant on the medication and the individual. I had to ask for a
catheter, and more saline, and was given 2mg of valumn via IV, and
later 5 mg IV and orally which were amounts given to a child and
already had a prescription for clonzapam 2mg x3 day that has never
been enough for the dystonia or full body movement disorders or
tremors, nor was it when it was 8mg a day. Valium had been written
down prior as a “safe medication” for myself. Prior in ER
situations, full saline, oxygen and much larger amounts of valumn
administered via IV almost immediately when I arrived, once paralysis
set in often a catheter was inserted.

Joesph Florence repeatedly talked to
the ER doctor, the ER doctor would not discuss the situation in front
of me or to me the patient, which has been an ongoing problem since
2004. The ER doctor said the records stated I was to see a
psychiatrist 6 years prior, which l and my mother refused as I needed
a neurologist that specialized in damage from psychotropic drugging,
movement disorders and dystonia, the later I knew I had since June
2004, the full body movement disorders dated back to March 2003.

Mr. Florence kept reiterating that
physical damage be taken care of in any patient regardless of mental
health issues or not, and that none of the psychiatric labels I had
been given were correct. They belong to the psychiatrists that gave
them out so liberally with no factual basis. Later in the evening the
ER doctor said I was going to be released, essentially in almost the
same state I had been brought in, most of me was still cramped badly
and paralysed and no change of medications, leaving me to continue to
cramp and paralyze at home, my knee caps now damaged and often giving
out as well, or keep calling 911. Mr. Florence kept insisting for a
neurologist which I had asked for shortly after we got there, when I
could speak, as often I can not. I was told there were none on duty
by the ER doctor. Mr. Florence persisted and the ER doctor found a
neurologist that saw me around 9pm. I wasn't as acutely dystonic, but
still much of me cramped and paralysed and in horrific pain. I had
brought in some of my hospital files which showed “dystonia” back
as far as January and February 2004 but were left off as a diagnosis.
I found four suicide attempts in my medical records so far, and I
have never tried to kill myself. They already had the letter from a
doctor stating my muscles had been repeatedly damage, or weakened as
he put it from trial (bipolar) medications in 2003 and that I am bed
house-confined 99-98% since the repeated damaged of 2003, prior 85%
house-bed confined from the severe ME/CFS.

The neurologist gave me a minor check
over, my legs, ankles and my left jaw that dislocates from dystonia
and destroyed my once beautiful teeth since 2004. The neurologist
asked about the marked spots I had put on my body, which where the
worst of the dystonia was, and cause daily severe muscle cramping and
contractions that contorted my body, cramped it and paralysed it in
different positions, my arms cramped to my chest my hands often
curled in like claws.

i had been promised a 48 hour EEG with
Video in mid-2004 I was having severe seizures, and full body
movement disorders after coming off 8 years of psychotropic drugging
and 11 years of one medication that affected Gaba I had been on high
doses of since 1992 and I was refused. The neurologist said they
would pick up where they had left off, with the doctor who was to
give the 48 hour EEG with Video. I said I needed a movement disorder
doctor, I still need the 48 hour EEG with Video, however, I need a
doctor present that is also very familiar with dystonia, dyskenisa,
tremors and movement disorders, as I have a mixture, sometimes still
with seizure activity and the underlying extesnive muscle and ligament damage. We were counting on them hospitalizing me and
getting me on proper medications and the dystonia under control, and
the severe muscle spasming and paralysing on my hips and up my spine,
now all of me is paralysing, however. this was not to the be case.

I am also a
high maintenance case which many doctors don't like. I was given the
the family practice clinic information, I have been mostly bed and
house confined since 1994, almost exclusively since 2003 and only out
a few times, and this has been used against me.

I was
told that the movement disorder
clinic now was shorter wait list and I would have an appointment set
up by neurology, and, which eluded me for years, that I needed a
family doctor – repeatedly for years they have been told I need to be hosptialized I an unable to go back and forth for appointments prior to the extensive physical damage, from the severe ME/CFS alone kept me from many specialists appoints prior. I am bed and house confined 99%. However I needed
to be able to get there.

I have no qualms about telling what
happened to the world at large about psychiatric labelling, the repeated
mis-diagnsosis one absurd: Major Depression caused from the drugs,
Dissossative Identity disorder, was the latest lingo for Mulptiple
Personalities, over 40 psychatropic drugs later my child hood nicknames I
used for inner child journal work since 1992 after getting severe ME/CFS were
put down as "alters" 10 years later. That means 2 separate personalites
taking over with loss of time, I had no loss of time and no alters, and no other doctor involved reported as a serious misdiagnosis when many knew. Also bipolar, bipolar rapid cycling, none of which I had. However,
inside most of the healthcare facilities, once psychiatric is put on
your files whether a misdiagnosis or not the care and treatment you
receive can be next to none, and often includes abuse. It's taken all these years to get my files left in the condition I am in to start having them corrected. The human error across the board alone is extensive and frightening, any other business would be out of business.

The extensive medical care has eluded me for years and
continues and is a disability and human rights issue. I needed to be
hospitalized for as much as possible in several sessions which has
been an ongoing struggle since 2003. As I have a history of adverse
drug reactions quickly it makes it even more important that I am
hospitalized for any major medication change.

Mr. Florence, myy friend of 27 years, was then told I was still
being sent home in the condition I was in, still much of me
paralysed, and not stabilized. He said, “what is to be done then,
for her to be left to paralyze in bed every day and call 911 if she
is able”. There was no regard for my life and me being left to
paralyze at home, still after all these years, even more life
threatening now, often I can't get to the water beside my bed for 5-6
hours. Often I wake up and I am already paralysed or it sets in
shortly after my brain fully wakes up as it did in 2004. They could
have reduced the cramping and paralysis within several hours but
chose not to and also hospitalize me until they got the paralysis
under control, observed, assessed, and medications tried in
hospital, often botox is used for the muscle contractions and
paralysis I have, assign me a doctor in their family clinic and send
me home safe

The neurologist said I was still be
discharged in this condition, and no medication change, leaving me to
battle the paralysis at home, and given clinic numbers and a referral
which were impossible for me to get to even if the dystonia was taken
care of most of the time, until my over all health improved, and the severe ME/CFS.
The medications I have are from Med-visit, which refused any for
years citing they only prescribed for colds and flu's. It wasn't
until May 2010 I got some medication back that I had been cut off of
in 2004, not the right medication then, and not now, the amantadine
alone takes almost 5 hours to unparalzye me if I can get it in my
mouth before all of me has paralysed, and it's supposed to be 2 a day
not 1 and often only given for the first 6 months. Med-visit doctors
don't like prescribing the medications I need and it can be a week or
more before I can get one of them in and it's near an argument every
time.. I could only give old scripts to prove what I had been given
prior in 2004, and hope I would be able to speak, pick up the phone
and get to the door at any given time since 2004. Med-visit doesn't
tell you what time they are coming – the range of hours they may
arrive can be 8 to 10 hours later.

The only thing I have been left to unparalze me is alchohol which many dystonic's have had to use = for me beer which has drastically worsened the ME/CFS and Hepatitis C.

Mr. Florence had stood there
dumbfounded that this was being allowed to happen again, as it
happened to me repeatedly since I was first brain damaged in January
2003. An ambulance arrived at the hospital about 1 ½ hours later,
wrapped me in a sheet, delivered to my home and put me on my bed,
left the sheet with me and also with a severe lung infection just
starting and left. I tried to get through to med-visit for days, the
line always busy. I was left digging out old antibiotics from 2004
hoping they would still work to some degree or start calling 911
again, which I will have to do until they get me on the right
medications and the dystonia and paralysis stabilized as much as
possible as well as the “bizarre” slow and rapid jerking of my
whole body which the dopamine antagonist does stop.

I was cut off doctors and medications
in fall of 2004, homecare that was abusive was shut off in early
2006 as well as for other reasons, and my mother kept me alive with a
fractured spine and riddled with osteoporosis-arthritis. My mother
and myself begging to get a few prescriptions to try to stop the
movement disorders and the dystonia for years.

The Golden Door is there finally
waiting for me at the movement disorder clinic and the neurological hosptial in Toronto where I should have been sent January 2003, after 7 years. With the
severe ME/CFS and being mostly bed-house confined ignored, they
could have easily hospitalized me, get me on the right track and
eventually in the future with a good family in-house doctor, be out
in the world again on a regular basis and hopeful for Ampligen in my
future for the severe ME/CFS.

No one should be denied health care,
it's against the Canadian and Human Rights Charters. The College of
Physicians and Surgeons used to make doctors come in-house they
haven't for years, it's up to the doctor and most don't like high
maintenance cases and the discrimination against survivors of ME/CFS
still persist, even though given a Neurological Diagnostic Code 795
by the Ontario Medical Association, with extra billing time #K037 to
try to encourage doctors and health care to stop the discrimination.

I have been through hell and am not out
the door yet and need doctors that are willing to help me heal as
much as possible, Allopothic and natural. In 2008, another attempt
was made to have me hospitalized for everything at the Toronto
Western through the Mt. Sinai, they withdrew, and said if I went to
the Western I would be hospitalized, put on the right medications and
I could go to their clinic after for the medications prescribed for
the dystonia and other illnesses. However I couldn't make clinic
appointments, and clearly the promise of the Toronto Western
hospitalizing me and getting me on the right medications was not the
case either.

What I have had to endure for years,
until this partly shining moment is beyond comprehension. I am still
left with keeping myself un-paralzed every day and the daunting task of finding an
in-house doctor with hospital privileges, or go to a clinic appointmentswhich I
am unable to do since 2004, never knowing until the last minute if my condidtion would be stablized and enough energy to get out. They and will not address the extensive medical care I
have been denied even if I make it there in short order, they will
set up one appointment at a time that I couldn't do prior to being
repeatedly brain and body damaged.. Or take private ambulance until
they get the dystonia spasming and paralysing under control, and of
course I have enough energy, and not in too my pain from the
Fibromyalgia and ME/CFS that has left me mostly bed confined and
greatly worsened over the years as has the Hepatitis C.

Or I keep calling 911 every day when I
paralyse until they hospitalize me, or a in-house doctor appears as soon as possible through health care connect which can take months, and I had to have medical files shut off to any new health care. I don't even know when I can speak or pick up the phone or get to the door, nor I have I since mid-2003. I am able to get the dystonia stablzied for short periods of time and never know when or for how long. I have had short spurts of improvement and others where the dystonia progressed rapidly, all wosening the already severe ME/CFS.

The daunting task of the Canadian Medical system, when one is severely ill for 20 years, and has been repeatedly brain and body damaged, and doctors don't like high maintenance cases. Where is the law written you need a family doctor to be hosptialized first. If I was in a car accident and had this much damage, let alone ill for 20 years, I would have been hosptialized for a period of time with extensive testing, diagnostics, care, and supports to recover

It's long over due the medical profession picked up the peices and give me the extesnive medical care and supports I was and am entitled to since January 2003. That I have survivied this long is beyond belief.

Generalized Dystonia - Arms & Legs

noreply@blogger.com (Cheryl Benson) — Fri, 17 Dec 2010 18:19:00 -0500

Oral Tardive Dyskenisa Lip Smacking from psycotropic drugging

noreply@blogger.com (Cheryl Benson) — Fri, 17 Dec 2010 18:17:00 -0500

FDA CONFIRMS: XMRV- MLV Virus Variants found in 32 of 37 ME/CFS patients- HIV Related Retrovirus

noreply@blogger.com (Cheryl Benson) — Wed, 25 Aug 2010 20:34:00 -0400

the National Institute of Health along with representatives from the FDA and CDC held a telebriefing for the press regarding the possible link between XMRV and ME/CFS. The findings of the FDA and NIH showed that 86.5% of blood samples taken from ME/CFS patients (32 out of 37 samples) were found to be positive for variants of the XMRV virus, a retrovirus that is related to HIV This is in comparison with only 6% of a healthy control group (3 out of
44 samples).

This not only confirms the original findings tying the retrovirus to a large number of cases, it identified a host of infectious agents in the same family, called MLV-related viruses..MLV means "murine-leukemia virus," which is one of the 3 identified human retroviruses. The M in XMRV stands for the same thing, and the R stands for "related." MLV-related viruses all belong to the same family of retroviruses.

This new finding of a diverse virus population is more consistent with what we know of retroviruses -- that they tend to mutate frequently, which makes them harder to eradicate.

This is very big news for the ME/CFS community. It doesn't necessarily prove that the XMRV retrovirus causes ME/CFS, but the strength of this link is now beyond any doubt, and will mean that further studies will be undertaken to see if it is indeed causative. .

http://www.pnas.org/content/early/2010/08/16/1006901107.abstract

Hyperbaric Oxygen Therapy (HBOT) corrects brain-injury.

noreply@blogger.com (Cheryl Benson) — Fri, 16 Jul 2010 14:22:00 -0400

World Map of ME- Chronic Fatigue Syndrome & Fibromyaglia Sufferers - Add Yourself

noreply@blogger.com (Cheryl Benson) — Mon, 21 Jun 2010 12:38:00 -0400

I added myself and left a message on the "World Map of ME/Chronic Fatigue Syndrome & Fibromyalgia" suffers/survivors, when this first got started.

The Map now indicates that the outbreaks, either pandemic or spasmodic, are mostly in the temperate zones of the world, with a few exceptions, and one has to wonder where those people were at "Onset" of illness.

We have not built up some form of immunity from birth as the sub-tropical and tropical climates population have. Other factors presently are how far this map has spread across the world and internet access. Also an often common factor has been ethnicity.

Please forward widely, this is a first "worldwide" attempt of accounting for those with ME/CFS/FM, and trying to identify outbreaks worldwide since the 1934 & 1954 London UK -1984 USA Lake Tahoe outbreaks, and which in itself may explain why so many in North America and the UK and Europe are affected.

You can also leave a message for others on the Map now, a new feature, like online chat.

The map also has information on the XMRV retro virus, which is what prompted the start of the making of the map. As it turns out, some with Fibromyalgia have tested positive, as well as ME/CFS, although far from all.

http://xmrv.me.uk/me-cfs-global-map.php

Action Alert: April 20 Deadline for Comments ME/CFS NOT Mental Diagnosis to APA in USA, links info here

noreply@blogger.com (Cheryl Benson) — Tue, 20 Apr 2010 00:24:00 -0400

IACFS/ME Urges Community Response to Risk that CFS May Become Classified as Psychiatric Diagnosis - from Somatic Disorder to Complex Somatic Disorder March 25, 2010

On March 25, Fred Friedberg, PhD, president of the International Association of CFS/ME, stated: “We are concerned about the possibility of CFS/ME being classified as a psychiatric disorder” in the upcoming revision of the American Psychiatric Association’s Diagnostic and Statistical Manual for Mental Disorders (DSM-5).??Referring to the APA’s newly posted draft revisions for “somatoform disorders”*, Dr. Friedberg has posted two items on the IACFS/ME website at www.iacfsme.org:??• A community call to action. He urges all informed advocates (working professionals in particular - researchers, clinicians, educators) to “submit your comments on this disturbing possibility to the DSM-5 Task Force” (www.dsm5.org - log in to comment, click on somatoform disorders and then complex somatic symptom disorder; comment link at bottom of page). Deadline for comment submission is April 20.??• An open letter to the DSM-5 Task Force on behalf of the 500-plus biomedical and behavioral scientists who make up the IACFS/ME, expressing “deep concern about the possible reclassification of CFS as a somatoform disorder in DSM-5.”??To track all US, UK, and international organizations' submissions and other news regarding the DSM-5 draft proposals, see the DSM-5 and ICD-11 Watch site, maintained by Suzy Chapman.??____?* Roughly defined, somatoform disorders involve symptoms that result largely from mental factors, not physical disease or injury.

http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=15247&B1=EM041410B

Mary Schweitzer letter here on her blog

http://slightlyalive.blogspot.com/2010/04/my-letter-to-apa-on-cssd.html

from Suzy Chapman's ME/CFS DSM-5 Watch, other letters submitted and posted

http://dsm5watch.wordpress.com/dsm-5-proposals/dsm-5-proposals-sub-page-3/

Please write if you, as above if you are a professional that deals with ME/CFS patients, have ME/CFS or a loved one does, or someone you know does, for many our caregivers, for those with severe ME/CFS that can not write for themselves and need to be heard. For those of you that have seen how devastating this illness is. Remember that MS was once considered psychiatric as was was Parkinson's. What would be the out cry from the general public if such were to be listed as psychiatric now.

Personal Note: I haven't been able to sit up or type much & mostly bed-confined as usual, I get some spurts onto the living-room couch for short periods of time. The little I have been able to do is for my website. Dystonia convulsions & paralyzing and spasming has been near non-stop for several weeks and progressing, let alone the severe ME, that it devastatingly worsens. I may try my own letter in the A.M. I don't know if I will be able to. It has been recognized as a Neurological Disorder in Ontario Canada, since 2005/2006 ME/CFS is Neurological Illness Diagnostic code 795 and 'Fibromyalgia/Chronic Fatigue Syndrome care' has now the OHIP time-based billing Code number K037with Extra Time Billing Code 795 which is used for Fibromyalgia (FMS) as well for extra billing from the Ontario Medical Assoc. (OMA). However, this has not stopped doctors, specialists from saying it does not exists here, refuse to treat you and psychiatry still refer to it as a Somatic Disorder, which it is not, even though WHO has declared it a Disease of the Central Nervous System since 1969 and Neurological, has been found in the cells around the spinal cord of several who have died from it, and a very long list of viral, diagnostic and organic testing that show it be an organic, physical illness, not psychiatric, which I was told by the Specialist that diagnosed me in 1991 who had diagnosed over 400 people since the Lake Tahoe Breakout in 1984.

Dr. David S. Bell's XMRV Presentation

noreply@blogger.com (Cheryl Benson) — Sat, 13 Feb 2010 20:02:00 -0500

Dr. David S. Bell's XMRV Presentation - Part 1

XMRV Lecture By Dr. Bell-1st Half in Higher Definition- from Barborka on Vimeo.

Dr. S. Bell's XMRV Presentation Part 2

XMRV Lecture by Dr. Bell-2nd Half in Higher Definition- from Barborka on Vimeo.

Q & A, after Dr. S. Bell's Lecture - Part 3

Q & A After XMRV Lecture By Dr. David Bell from Barborka on Vimeo.

http://vimeo.com/9051294

Dr. Bell was in Toronto, unfotunately I of course couldn't make it. I suspected as well someone would tape it and upload them. Here is one source thank you to the Barborka family,

Correlation between dystonia and fatigue? 18 Hour Day work out, Add that to ME/CFS, FM, paralized and a Mac

noreply@blogger.com (Cheryl Benson) — Sun, 7 Feb 2010 22:43:00 -0500

This is dystonia cramping in my face, and shows in my hand and arm here, as in some videos I have uploaded it shows in both, it is called limb dystonia, I have it in my legs as well, both of them from the knees down. So far nothing has stayed permanent, for many it does. I have realized that it started in the late 1990's now, during the first 4 years of psychiatric drugging and one antidepressant after another, and adverse side effect one after the other, as well as a long list of other drugs thrown in, not told what many were, and never the damage they do.

I have been working on the list of drugs given and looking them up, what many of them were, I was slipped a lot of neuroleptics I was told they were pills for sleep to improve my REM stage for my severe insomnia from my ME/CFS and FM. Fortunately, I couldn't tolerate them for more than a few days, I felt ill and really weird in the head, my thinking, I can't explain it. However, there was one that didn't bother me that way, Nozinan, and I see prescriptions for it for a long time. It is a very long list, I have only started on the adverse reactions that came with them.

I have video's still to edit of the full body muscle spasms and rapid jerking. Since I have been able to sit up again for increasingly longer periods of time that started with 5 - 10 minutes and building up, for almost a month, and in the living-room with my legs up on the coffee table so blood flow doesn't drop to the bottom of my legs and I can sit up longer, the laptop on my lap, I have been, when I can speak, on the phone with Apple Tech for over 3 weeks trying to get their applications (iPhoto, iMovie) and time capsule, sorted out that collapsed and still not finished. I had to rebuild the iPhoto manually, imagine that, you can't in my condition. And there are still imports I had to delete I have to restore now with videos and pictures on them. Of course this is all in and out of bed as able throughout the day if not totally bed ridden and 'crashed'. My old PC laptop is in bed with me still and I find it very frustrating that I got a Mac, it sure was bad timing. I should have gotten a new PC laptop, they are so much easier. And what's on there doesn't work on here.

The constant movement and muscle contractions of dystonia can be compared to working out approximately 18 hours a day if you don't have them under control — and for people whose symptoms don't stop during sleep, 24 hours a day. This definitely results in more severe fatigue and diminished stamina. Fatigue may be confused with lack of energy or motivation which may be a sign of depression or other medical conditions, the same with ME/CFS and FM, although depression often comes with all of these.

Stress is not the cause of dystonia, but it can make it worse. Adequate rest and supplementing sleep (if you can get it and are not in hyper-insomnia OR hyper sleep mode with ME/CFS/FM) with restorative practices such as meditation or relaxation techniques are a mainstay of coping with illness as with life, keeping your sanity, and taking mental breaks from your body, the reality around you, and into the expansion of the universe of your soul if you can quiet your mind enough to make it there.

So if you don't get the movements under control, your body is, well it's not exactly exercising, it is very distressing, full body spasms, rapid jerks slow or fast every day when or shortly after you wake up, often during the night as well, it's another form of generalized dystonia and for me, movement makes it worse as well. Then there is the spasmodic dystonia, for most parts of your body there is another name for it, until it has affected almost all of your body then it segmental or generalized (all or almost all of your body - see links on right hand side to dystoia sites), that has spread through my body causing muscle groups to cramp and contract often in opposite directions and go as hard as a rock, often paralyzing me back wards as it is in my spine.

The picture is a lump that built up (and goes down, as with other areas that cramp) on my spine where it gives out, and was giving out a lot a few months back, as was my neck (this started January 2004 with a GP in my home who said nothing and knew I had dystonia), and I would just land on what ever was in front on me or beside me which ever way I went. I started being able to direct my landing, after smashing into the Mac several times and smashing it, and my face into the coffee table, my knees buckling, my whole left side the weak side what a nightmare. Then my muscles and ligaments would go rigid and paralyze and I couldn't move. My caregiver couldn't move me either for a bit, we had to use beer, which we do only when it gets so severe as I have been left with nothing else to uncramp it. She finally got me up by holding her hand across my forehead, and one arm around my chest and heaved me backwards in a sitting up position on the couch, although it took several tries and a beer.

I have lumps of dystonia across the back of my hips causing them to lock often and cutting off more blood and oxygen to my lower half and sometimes paralyzing, the increase in size the long full body movement disorders and/or seizures are out of control. As I have low blood volume from my ME/CFS and POTS , this makes it worse. In the hospital's were the abuse occurred and saying it was all psychiatric to keep me out of the hospital and the extensive muscle and ligament damage off the records and me from suing, when family tried to force them to hospitalize me and I was in ICU, they said the paralyzing was from low blood volume and oxygen levels, not one doctor knows about the dystonia on my back hips, nor have they cared. The paralyzing used to be almost daily for quite some time, and was severe for several years after coming off years of prescribed medication, 12 years in 2 months which was negligence. I had already been repeatedly brain and body damaged minimum 3 times the prior year in 2003, only to be damaged more coming off.

I still paralyze, not as often from the waist down, it has spread up my spine, so I am often paralyzed backwards while convulsing at the same time. I don't know if you can picture that in your mind, a video in the near future will help you to see it.

I was left convulsing until I paralyzed with a bucket and female urinal by my bed, if I could reach it.

The water jugs are kept beside my bed that I can barely lift the ligaments under my arms are so damaged, as well as the weakness of th damage to all the muscles, and from my ME/CFS and FM. I have my audio books and head set, reading has been difficult for me sine I got ME/CFS/FM, especially books. The internet seems to help becaue of the light on the screen I think.. For a long time, I ate, urinated, sometimes defecated, and tried to brush my teeth all in

this little space beside my bed.

I haven't had a heart attack yet, although my medical records say I may have had a small one some time back , and I may have had a stroke January 2004 right side of brain, when the left side of my body paralyzed and then collapsed, which remains damaged and drags around on and off. The medical records keep changing regarding "small right infarct" (stroke, ambulsim) of brain .

Oh let's not forget I have HepC, positive blood test in 1993/94. I think from surgery I had and lost a lot of blood, or my room mate who had it, we discovered after the autopsy after he died and bled to death in my arms in a moving car. He had been my best friend, I had known him since I was 16 and lived together as roommates 3 times. Oh yes, they say you can't have ME/CFS if you have HepC. I will tell you that is not true. My liver tests and scans were fine and clear of chronic disease in 1991 when I went through a battery of tests to be diagnosed with ME/CFS after the flu from hell in March 1991, and , I was diagnosed with FM the same year although it had started the year prior. Some of the doctors involved changed the history of my HepC on my medical records as well as well as my ME/CFS, of course, ME/CFS didn't exist in their minds, they had no idea what it was or to survive with it. It certainly would if they had it.

Oddly enough, the dystonia is on the records, so far that I have found in the ER records, who every he was he knew right away, the movement disorders on the records after the Acute dystonia of March 2003, that kept coming out again every time I came off Celexa, although I have now tracked them back to 2002 possibly 2001. The spasmodic dystonia as well, in the ER records of January 2004 ( at the Toronto East General Hospital). The GP who was seeing me in my home, covering for the other doctors and hospitals involved, she told me it was "psychological" including the paralyzing when I started coming off the drugs too fast, same with the left side of my body dragging around, and the possible stroke right side of brain. My mom was very scared, I had already been so damaged, and said my life was in danger, so did several other people. The GP seeing me in my home never said the word 'dystonia', but has it written all through her falsified records, who left me seizing, convulsing and paralyzing for months, day after day. Why cover for dystonia? Why cover for the seizures? The GP in my home told me that my extensive muscle and ligament damage "was in the past, it's over with" refusing full body MRI or any tests for muscle ligament damage, to keep it off the records. Of course her records say otherwise. If one was revealed, then the extensive muscle and ligament damage would be too. Then I would be treated for it, and I would have been able to continue my with my malpractice and negligence suite. Wow, the compensation I would have gotten for the amount of damage done and premeditated much of it as well. She has written in her records, the GP, that I was on drugs for dystonia, not by her, by my ME/CFS doctor. Sure enough 2 of them did work on dystonia and movement disorders, but I was told for seizures, so was she.

I was cut off doctors and medications in the fall of 2004 saying all the damage ,
seizures and movement disorders were psychiatric, and to keep me out of the hospitals and me from suing. Taking a high risk chance of me having a heart attack or stroke
(I may have already had one), and more damage or death. ME/CFS survivors are at high risk for heart attacks and stroke and a leading cause of death, so are suicides. That's premeditated, any one elsewould be in jail.
.
My spirit must be strong because through all of this, I AM, still here.

Kay Gilderdale cleared of attempting to murder daughter with ME

noreply@blogger.com (Cheryl Benson) — Mon, 25 Jan 2010 11:35:00 -0500

A “loving and devoted mother” who gave her acutely ill daughter a cocktail of drugs after handing her a morphine overdose was today cleared of attempted murder.
During a week long trial, Kay Gilderdale, 55, had admitted assisting her daughter, Lynn, in her suicide bid as part of a so-called mercy killing. She was handed a 12 month conditional discharge for her role in the death - against a maximum term of 14 years for the offence - and was allowed to walk free from court.
Amid dramatic scenes at Lewes Crown Court, the jury of six men and six women took under four hours to return their unanimous verdict.
It was greeted by a round of applause from the public gallery, which included Gilderdale's ex-husband Richard, 56, and her son Stephen. When the judge handed down his sentence there was another spontaneous round of applause.
Mr Gilderdale, who has stood by his ex-wife and gave evidence in her defence, wept as she was released from the dock.
Her 31-year-old daughter was said to have suffered an “unimaginably wretched existence” after contracting ME, a post-viral fatigue syndrome, 17 years before her death.
In December 2008, she persuaded her mother to help kill her because she could not take any more pain and her “body was broken”. Gilderdale gave her double her normal daily morphine dose which her daughter administered herself.
But when she awoke distressed, Gilderdale, a former nurse, ground up sleeping pills and anti-depressants and administered them to her youngest child. She also injected her with three boluses of air in an attempt to cause an embolism.
During the 28 hours it took Miss Gilderdale to die she researched suicide techniques, including visiting a website run by a euthanasia specialist. Telephone records showed that at this time she also contacted Exit, the right to die organisation. It was those actions that led the Crown Prosecution to bring an attempted murder charge. The pure murder charge was not pursued because toxicology tests could not prove whether the drugs or air injection contributed to her death from morphine.
The case has once again highlighted the complex issues surrounding mercy killings and terminally ill people’s right to die. The Times can now reveal how a judge felt that the Crown Prosecution’s decision not to accept Gilderdale’s guilty plea for assisted suicide and continue with the attempted murder charge was not in the public interest and “mumbo jumbo”.
Judge Richard Brown invited the lawyers to drop two charges in light of Mrs Gilderdale’s guilty plea, adding that he felt a trial would “not be in the public interest”.
Referring to her guilty plea to assisting attempted suicide, he said: “It is a serious charge that appears to address exactly what happened.

“Wouldn’t it be better to accept it now rather than let this defendant get tangled up in a messy trial for the sake of some legal mumbo-jumbo?”
The subsequent trial judge, Mr Justice Bean, then ruled that the charge of aiding and abetting an “attempted” suicide be dropped as it was “technical to a baffling extent”.
Even after the first day of the case, the jury was bewildered by the attempted murder charge – the only remaining charge – and sent a note asking for clarification.
Miss Gilderdale had been a healthy and happy child, who excelled at school as a musician and in sports. But in 1991, when she was just 14, she was struck by a viral illness which left her severely ill and bed-ridden at her home in Stonegate, East Sussex.
The ME became so severe that she even had to communicate through a special sign language with her parents, who had divorced. She went through the menopause at 20, lost half her bone density from osteoporosis and, on the few occasions she left her bed, was taken to hospital to be treated for potentially fatal infections. She came to rely on her mother’s round the clock care at their home.
Food and liquids were given to her through a naso-gastric tube and morphine for pain management was given by a timer-controlled syringe delivering around 210mg of morphine a day.
In 2005, a surgical procedure led to her nearly dying when both her lungs filled with blood. She was left unconscious for three weeks and in intensive care for a further three months.
Her family GP, Dr Jane Woodgate, said that episode led to her feeling her “body was broken” and she wished she had died.
In a “living will” drawn up by a solicitor she asked not to be resuscitated, adding: “I wish it to be understood I fear degeneration and indignity far more than I fear death.” It was at this time that she researched into the Dignitas clinic in Switzerland. Her first suicide attempt from a morphine overdose failed after her father, a retired policeman, revived her.
On December 3, 2008, Miss Gilderdale summoned her mother to her room and begged her to help her commit suicide. She had already injected a syringe of morphine but, because she had developed a tolerance to the drug, pleaded for more.
For an hour, Gilderdale remonstrated with, saying: “This is not the time.” Her daughter was said to have replied: “I want the pain to go away. I don’t want to go on.” Eventually Gilderdale gave her daughter the morphine which her daughter injected.
Simon Clements, head of the CPS special crime division, said: “The decision to charge Mrs Gilderdale was made before the guidelines [more lenient rules for assisted suicide introduced by director of DPP in April 2009] were published. When the guidelines came into force the CPS lawyer considered whether they applied to this case and came to the view that they didn’t.

“Our case has always been that Mrs Gilderdale tried to kill her daughter. The state of the scientific evidence has always been unclear and we have never been in any position and are still not in a position to prove conclusively that she did kill her.
“The case has gone to the jury. The test which we applied in looking at whether it was proper or not to bring a case is if the judge withdraws the case halfway through, which he did not. As Justice Barker said last week, mercy killing has no place in law in this country.”

Letter to Keir Starmer QC: Not in Public Interest to Prosecute Kay Gilderdale

noreply@blogger.com (Cheryl Benson) — Fri, 8 Jan 2010 15:03:00 -0500

OPEN LETTER - Kay Gilderdale Trial
emailed & original being sent by caregiver

January 8, 2010
Keir Starmer QC,
Director of Public Prosecutions,
50 Ludgate Hill, London
EC4M 7EX.

Dear Mr Starmer:

As a victim of Myalgic Encephalomyelitis (M.E.) since 1991 and being mostly bed and house confined, mostly bed, and require caregiver services to keep me alive, and a concerned fellow human being, I am writing to state and request that it is not in the public interest to prosecute Kay Gilderdale and I am pleading with you to please intervene and drop the case.

I have kept a copy of the book ‘The Final Exit” in my top drawer for many years. Not all can travel to Oregon in the USA, or Switzerland to make a choice that is theirs, not a governments, as to whether to end their lives or not. Governments as do Religions have no place in governing someone’s personal choice in ending their life in most cases, and such as this one, or assisted. You do not own our bodies, and it is clear to me, that most governments make this decision on religious dogma engraved with guilt etc., for eons, while sending thousands off to illegal wars to kill others and call it legal.

Again, I ask you to please intervene on Kay Gilderdale’s behalf and drop the case. It does not serve the public interest in any way.

While I understand what the CPS does and they can't discuss the case, I would like a response please that the Director of Public Prosecutions has indeed read and noted my plea on Kay Gilderdale’s behalf.

Thank you.

Sincerely,

Cheryl Benson
cc: Public Correspondence Unit
enquiries@cps.gsi.gov.uk

original sent by mail

____________________________________________________________________________

Kay Gilderdale is accused of Attempted Murder, in the assisted suicide of her daughter Lynn who had severe M.E. for 17 years and paralyzed and confined to bed. Her mother took care of her to keep her alive 24/7. Lynn had tried to take her life several times prior without success.

Her mother kept her alive for years, Lynn had M.E. for 17 years. Kay has suffered enough, to have to go through this, the loss of her daughter, and a government that gives little to no care for M.E. survivors, deem many of them as psychiatric for a Neurological illnesses defined by WHO since 1969, but can find the money to prosecute her for attempted murder no less, not even assisted suicide.

Please email and send original letter to the above on Kay Gilderdale's behalf if you are so inclined.

For further information please visit the following sites:

Facebook Group:

Prosecuting Kay Gilderdale is NOT in the PUBLIC interest

The latest details I have are on Sophia Mirza's site here:

www.sophiaandme.org.uk

Some History of the case:

http://meagenda.wordpress.com/2009/04/17/kathleen-kay-gilderdale-case-media-coverage-17-april-2009/

______________________________________________________________________________
RESPONSE FROM CROWN PROSECUTION

---------- Forwarded message ----------
From: Enquiries
Date: Mon, Jan 11, 2010 at 9:47 AM
Subject: RE: Keir Starmer, QC: Appeal on behalf of Kay Gilderdale
To: Cheryl Benson

Dear Ms Benson,

Thank you for your e-mail of 8 January 2010 addressed to Mr Keir Starmer, the Director of Public Prosecutions.

The Crown Prosecution Service (CPS) is responsible for reviewing and, where appropriate, prosecuting most criminal cases in England and Wales following an investigation by the police and the receipt of a file of evidence. Crown prosecutors make the decision to prosecute, applying the Code for Crown Prosecutors. I attach a copy of the Code for your information.

As the case is currently before the courts, it would not be appropriate for the CPS to discuss the evidence in the case. The prosecutor who advised the police did, however, consider whether an offence of assisted suicide was more appropriate; however, they concluded that a charge of attempted murder more accurately reflected Mrs Gilderdale’s actions and intentions.

I am passing your correspondence to Mr Simon Clements, the Head of our Special Crime Division, for his information.

Yours sincerely,

Correspondence Unit

Crown Prosecution Service

NOTE: They discussed the case, although the tell people they are not allowed to.
They have charged Kay Gilderdale with attempted murder, even though she pleaded guilty to assisted suicide. How can you charge someone with attempted murder for someone who passed on. How can you charge someone for attempted murder for assisted suicide.

ME/CFS, Joints body parts giving out from generalized dystonia and muscle ligament damage

noreply@blogger.com (Cheryl Benson) — Tue, 17 Nov 2009 09:25:00 -0500

i figured some out. all muscles weak with ME/CFS since 1991. all muscles and ligaments shorted and stiff damaged since 2003 ongoing to 2004. dystonia started march 2003 ,, 3 types, mycolonic dystonia and generalized dystonia (which has spread through my body - cramping of groups of muscles often in opposite directions) and acute dystonia.

I was told by a psych nurse brought in for to cover for the psychiatrist I had been wheelchaired up to for 2 months stiff as a board who refused to hospitalize me from end Jan-March 2003, that the full body muscle spams and rapid jerking, was a "werid kind of full body dyskensia" the last Tardive dyskensia got me confused for a long time, I would say I had TD with extensive muscle ligament damage often,, as well as it being put on as diagnosis for all the extensive muscle and ligament damage in the only letter I have attesting to in from Jan/03 and the acute dysotnia in March/03 by Dr. Saul which it was not, who have course covered as well. The only reason I got that letter out of him in Nov/03 was because I was going for malpractice and negligence and he was playing both sides, and falsifying everything else behind my back, all supports I needed that anyone with brain damage would get all faslified. (UPDATE GOING THROUGH RECORDS - I AM REPEATEDLY TYPING DYSTONIA IN EMAILS TO FREINDSIN 2004 AND 2005 AND THAT I WAS LEFT PARALYZED IN BED FROM IT)

The psych nurse put on the records "muscle spasms and purposely controlled movements", no 'full body dyskensia" or the Parksinsonium which may be partly seizures as well. I wasn't on drugs that cause tardive dyskensia although I have some lip smacking so do some seizures (UPDATE I WAS GIVEN NEUROLEPTICS AND TOLD THEY WERE SLEEPING PILLS - THAT IS WHERE THE LIP SMACKING COMES FROM) I was on a load of drugs that cause dystonia's, and had acute dystonia with seizures in March 2003. May be it is full body dyskenisa, although I wasn't on drugs that cause TD I was on years of drugs that cause dystonia, almost all antidepressants do, lithium, tegretol, buspar, xanax, the Amantadine, long list people don't know about cause they don't want you to know. I did have acute dystonia and drug induced parkisonium x2 from drugs, she put that down as purposely controlled movement in the records I have gotten. I still endure both every day.

i have the myocolonis dystonia, generalized dystonia (means affecting most of your body parts and not just one side or one area) ongoing daily (as well I have seizures, ), wherever the dystonia (groups of muscles cramping twisting severely in awkward positions, spread on top of the muscle ligament damage twisted forcing my body parts cramped in other directions is where the joints are giving out. my neck and waist fist gave out when I came off the drugs in 2004, the affected first in march 2003 of course both were ignored.

I have it down lower legs from knees pushing inward both sides, that explains my knees giving out now. it has gone down the whole weak left side of my body that drags around, cramping it to the right, my whole left side has just buckled in and collapsed as well.

I have it in my arms as well, are my wrists and elbows going to go next, my shoulder sockets are badly damaged from th edaily convulsions. I have it both sides of my neck. My neck and waist joints gave out early 2004 when coming off everything, now gives out all the time now, daily, can't hold head up or waist and my knees are almost daily now they gave out 3x yesterday I tried to get to the kitchen. I been left convulsing on floors for years, and prior with severe seizures, if couldn;t make it to bed or was already in it, that more damage.

why it is more rapid, maybe just wearing of time left like this and no medication to stop it or relax it, causing more damage to already severely weakened and damaged muscles and ligaments. I thought, wow, what if I have MS too, and last night, wow, the fibroid under my liver since the 1990's that nobody has check, maybe that will be cancer and this nightmare will just be over, oh yes and then I will get so much support and understanding, and medical care because society "gets it", while ME/CFS those who are severely affected quality of life is worse than someone with cancer going through chemo, and HIV/AIDS, except the last several weeks of life, sometimes it is compared to that, let alone the physical body damage I have sustained on top and the daily dystonia and slow and rapid jerking convulsions, my arm sockets are so damaged I don't know if much is left, there isn't of my arm muscles.

Dystonia gets little to no recognition either and few treatments, the dystonia sites that advocate for more research, funding etc. sadly most of them only list neuroleptic's as the cause or heriditary - gene, not all antidepressants and a long list of other drugs people take. And they are advocating and supposed to be giving information to the public at large .

dystonia wont show on brain scan, the joints weakened damaged muscles will which I kept saying and was repeatedly refused full body MRI, to keep the damage off my records, it finally got put on I was disabled in 2004 after giving Dr. Sauls ltr to a GP seeing me in my home who told me I was faking all the damage and everything was psychological to cover for the damage and isolate me more, but in 2005 I was still abused and kicked out of Sunnybrook hospital, so was my mom, after being in ICU several weeks prior with family trying to force them to hospitalize, me, and they said they didn;t believe I couldn't push my manual wheelchair, my mom was assaulted, the police would do nothing.

I have gotten afew more of my falsified medical records and am heart broken, that they cover for this not help they call themselves doctors, several should be in jail, this not misdiagnosis, this purposely done to cover for the damage and isolate me.

The extent of the damage, diagnosis, and how severe and how it affected my body has never been done, as in unable to lift much more than a book usually..

I worsening rapidly more more, dystonia getting worse in spots and cramping and paralyzing me and clumps of it are spreading, and movement convulsions daily, walking make ME/CFS worse and crash in bed, mostly bed confined for years, almost totally since the muscle ligament damage and daily dystonia convulsions, fight to keep walking keep my calf muscles I loose repeatedly.

I still almost total bed confined for some weeks now. it's been months before. I have to stay positive that I am going to pull out of this severe crash and have some improvement and get back into the living room, even prior was in and out of bed all day when able, I could only sit up for short periods of time which was very painful my spine is so damaged, and has been since my teens, I have been in several accidents, and of course left convulsing and seizing on floors for years doesn't help.

However, I have to believe that which I don't, I think it has all be left to go to far.

I can only sit up for very short periods of time in bed and it is worsening. the pain in my damaged spine that damaged since my teens and 20's quite badly, is gruesome, it has been since my 30's, my last x-ray was in 1993.

I got some on video yesterday in bed when neck gave out repeatedly I can't find it on computer, and blogger used to have an upload for videos I only see pictures, although older videos show.

I can sit up for a bit, I could barely yesterday. try type letters for help, was working on petition, I go on and on, and petitions take too long. People have no idea how severely ill and damaged I am, they never do with ME/CFS, even caregivers that care for you, most don't get it. I get ignorant but well meaning remarks from youtube that I look so good and doing so well, because I not convulsing at the time, can speak, sit up, not in too much pain, or so fatigued like lead I am not bedcofnined with flu like symptoms and increased neurological problem, can tolerate sound, light touch, and my private caregiver managed to bath me and change my friggen clothes which I live in. same with ME/CFS, oh but you don't look sick and you feel near death, limbs like lead often. I worried about my hep C, it's chronic I wonder if it gone too far as well.

Well I've looked and beseeched help from everywhere for years, only a few would help behind the scenes. The government refused to help, it was then backed out x2. My mom called McGinty's office in 2008, the last try to get me hosptialized for everything, his officice has years of emails and faxes from me, as did Smitherman, Layton, Churley, Ombudsman, 2 Prime Ministers, Police, Amensty, College of Pyscicians and Surgerons - no response, she even wrote Harper for God's sake. Desparation and fighting for the life and quality of life of your daughter against all odds, you'll write to everyone for help.

I have been up against the ministry of health repeatedly who covered for the hosptials and doctors, and my medical records badly falsified so they would believe the medical records - and the access center and the abuse going on in my own home by caregivers and every Client Bill of Rights broken reducing them to meaningless unless you can afford a large law firm, they have tax payers money to get lawyers which is exactualy what they did. \

The College of Physicians and Surgeons can't force doctors to do anything or hosptialize you and I don't have a family doctor and I need on inhouse. And the Ministry of Health who is supposed to have power over the hosptials, finally copped out in 2005 when they said they were going to have me hosptialized for everything after a push through the NDP who was reluctant to say the least, saying the hospitals are self owned and administered, they have no power over them. So then WHO DOES?

LINKS TO DYSTONIA SITES MORE ON THE LEFT HAND SIDE BAR:

http://www.dystoniacanada.org/about-dystonia

http://www.dystonia-foundation.org/

http://www.wemove.org/dys/dys.html

ME/CFS Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) - Day 2 - 420 min Video

noreply@blogger.com (Cheryl Benson) — Wed, 4 Nov 2009 13:43:00 -0500

Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) - Day 2

Air date: Friday, October 30, 2009, 9:00:00 AM

Time displayed is Eastern Time, Washington DC Local

Category: Advisory Boards

Description: The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).

Wanda K. Jones, DrPH

CFSAC Designated Federal Official

Deputy Assistant Secretary for Health – Women’s Health

For more information, visit http://www.hhs.gov/advcomcfs

Author: HHS Office on Women's Health (OWH)

Runtime: 420 minutes

CIT File ID: 15409

CIT Live ID: 7909

Permanent link: http://videocast.nih.gov/launch.asp?15409

ME/CFS Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) - Day 1 - Video Link 480 minutes

noreply@blogger.com (Cheryl Benson) — Wed, 4 Nov 2009 13:39:00 -0500

Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) - Day 1

Air date: Thursday, October 29, 2009, 9:00:00 AM

Time displayed is Eastern Time, Washington DC Local

Category: Advisory Boards

Description: The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).

Wanda K. Jones, DrPH

CFSAC Designated Federal Official

Deputy Assistant Secretary for Health – Women’s Health

For more information, visit http://www.hhs.gov/advcomcfs

Author: HHS Office on Women's Health (OWH)

Runtime: 480 minutes

CIT File ID: 15408

CIT Live ID: 7908

Permanent link: http://videocast.nih.gov/launch.asp?15408

ME/CFS Fuctioning and Energy Index Tables take to your Doc

noreply@blogger.com (Cheryl Benson) — Wed, 4 Nov 2009 13:17:00 -0500

For fuctioning charts, you can down load a PDF and take to your doctor,a nd keep one yourself, here is a link to one, I have seen others, that I felt worked better as many of us fluctuate between levels, some are permanent.

http://www.cfsviraltreatment.com/energy_index_score/index.html

http://notdoneliving.net/foothold/scales/david-bell#high_2

ME/CFS LATEST NEWS: XMRV Retrovirus TESTING is Available

noreply@blogger.com (Cheryl Benson) — Wed, 4 Nov 2009 13:09:00 -0500

http://www.krnv.com/Global/story.asp?S=11429556

Reno laboratory offers diagnostic testing for retrovirus

Last month scientists at Reno'sWhittemore Peterson Institute and the Cleveland Clinic published the results of a study that found the retrovirus XMRV present in more than 95 percent of chronic fatigue patients.

Though it has not been proven that XMRV causes the neuro-immune disease, scientists say there is a direct link.

Following the announcement of the discovery the institute received an outpouring of requests of testing for the retrovirus, according to a publicist.

Now, a state certified labratory in Reno is offering diagnostic testing for XMRV in cooperation with the institute.

Visit http://www.vipdx.com// for more information on the tests.

VIP Dx Viral Immune Pathology

LATEST NEWS: XMRV TESTING

Dr. Vincent Lombardi, the primary investigator and first author on a paper that appeared in the 8 October 2009 issue of "Science", is the Director of Operations for the licensing and development of the XAND test assays used by VIP Dx for the detection of XMRV.

The landmark research publication, "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome", appeared in the October issue of the prestigious journal Science (www.sciencemag.org).

We are also pleased to announce that VIP Dx has licensed this technology allowing us to offer the most accurate and sensitive testing available for XAND (XMRV associated neuro-immune disease).

TO ORDER XAND TEST KITS, CONTACT VIP Dx.: http://www.vipdx.com/contact_us/

To learn more about our XMRV tests, Click here: http://www.blogger.com/goog_1257357919895
..

ME/CFS Crashed = Bedconfined or almost - The Computer is my bedmate

noreply@blogger.com (Cheryl Benson) — Wed, 4 Nov 2009 12:57:00 -0500

Although my functioning level is a 0-3 on ME/CFS scales, , which means I can get to the bathroom most often and kitchen, and varying times be able to sit up at computer in livingroom, that doesn't including all the muscle liagment damage in my body, my left side dragging around, dystonia convulsions daily which take energy and cause me to crash more daily as dies walking in my home not and the spasmodic dystonia spreading through my body that has become generalzied and forced to walk in my home as I am not in wheelchair accessable home. I have increasingly worsened over the years left like this

However, the laptop was moved into the bedroom last week, I have been holding off for some time as that is where I have mostly existed since 1994, and extensively, sometimes totally since 2003, yes totally, not being able to get to the bathroom. . I am declining again as those do with ME/CFS and FM, however I have the extensive muscle and ligament damage as well as all the rest, oh did I mention Hep C too?.

I will add that prior to the brain/body damage and dystonia's, my fuctioning level was higher but the flucations were so severe that any of the ME/CFS scales I have seen still don't fit, then or now for severity based on how much you can fuction. It seems to ranged between the scales then and now.

The bag I wear around my neck has the little medication (1 - clonzapam) afforded to me and begged for from a neurologist involed for they dystonia's. It's not enough. Fortunatley I have old muscle relaxants to stop the severe spasming throughout my body, especially my spine, dopamine or dopamine antagonist stopped the myocolnus dystonia I have endured for years, and relaxed the muscle and ligmaent damage however, I was cut off that and all doctors in 2004.

However, since I got ME/CFS I don't tolerate flexeral very well, and take 1/4 - 1/2 a pill. Alcohol will uncramp the spasmodic dystonia's but I am intolerant and suffer tremdously when it has to be used, after, some times nothing else will uncramp it, especially my neck and my sometimes my spine. As for the Norflex that has been put away, it caused my neck and waist to give out repeatedly landing my head on what ever was nearest. My waist gave out today and I haven't taken any muscle relaxants, just the clonazapam.

This is a severe crash from my ME/CFS, although I am crashed every day and have been mostly bedconfined for years, sometimes loosing my calf musles which is extremely painful. The first time was mid-2003. So I keep walking in home abit, but it sets off movement disorders as well and I regularly land on the floor convulsings from dystonia, having a seizure (rare now), or part of my muscles spasmed so badly from the generalized dystonia it lands me on the floor often with convulsions.

Which brings to mind videos to edit. I actually wrote most of this the other day. Yesteday was my first day able to sit up, been showered and clothes changed by private caregiver. It has been a gruesome go and look to be pulling up abit more each day and back out in the living room, even then I am in and out of bed most days.

For fuctioning charts, you can down load a PDF and take to your doctor,a nd keep one yourself, here is a link to one, I have seen others, that I felt worked better as many of us fluctuate between levels, some are permanent.

http://www.cfsviraltreatment.com/energy_index_score/index.html

http://notdoneliving.net/foothold/scales/david-bell#high_2

Readers Ask: A Virus Linked to Chronic Fatigue Syndrome - Consults Blog - NYTimes.com

noreply@blogger.com (Cheryl Benson) — Mon, 26 Oct 2009 17:33:00 -0400

Readers Ask: A Virus Linked to Chronic Fatigue Syndrome - Consults Blog - NYTimes.com

Denise Grady, a science writer for The New York Times, recently explored the link between a recently discovered virus called XMRV and chronic fatigue syndrome, in “Is a Virus the Cause of Fatigue Syndrome?” On the Consults blog, scientists and doctors from the International Association for Chronic Fatigue Syndrome, a society of 500 biomedical and behavioral professionals, took readers’ questions on chronic fatigue syndrome.

Here, Dr. Nancy G. Klimas, who serves on the board of directors of the organization, answers questions on the recently discovered retrovirus and clinical care of chronic fatigue syndrome. Dr. Klimas is a director of the department of immunology of the University of Miami School of Medicine and director of research for clinical AIDS/H.I.V. research at the Miami Veterans Affairs Medical Center. Also read Fred Friedberg’s responses to behavior-related questions in “Behavioral Treatments for Chronic Fatigue Syndrome.”

There is a list of questions and answers, also on behavior therapy, there is often a lot of ruckus over the last, I previewed at bit and seems more sensible than the outrageous graded exercise. take a look at both articles and have your say, just log in first.

Also of great interest is reference to Osler's Web and a former biotech Dr. Elaine DeFreitas who discovered a retrovirus related to ME/CFS in the early 1990's and the CDC shut her down and out, The National Institutes of Health intentionally destroyed her reputation because it did not mesh with their vigorous assertions that C.F.I.D.S. was psychoneurosis (psychiatric) .

http://www.oslersweb.com/

They also stated as I have already posted on site, of availability for tests for XMRV, although this article seems abit behind and were you can order it, if it ready that I put in a prior blog post.

Now for me I'm back to bed. My energy is up a notch and the dystonia spasms down,convulsions are not, and I am still very weak to say the least, and still can't do more work on more editing, letters or petitions. may take a few more day to recoup, just being showered and my clothes changed by some else puts me in bed for a period of time after. Also my speech isn't back yet, so no phone calls. :(

http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

Saving Cheryl

noreply@blogger.com (Cheryl Benson) — Mon, 26 Oct 2009 14:41:00 -0400

I was doing abit better when I first did my first youtube videos, I had months in between not being able to do any.

I really got off track to many times, thinking it was a permanent improvement, nothing ever is with ME/CFS, rare let alone the rest of my illnesses and damage

I sure named this blog wrong and contimplating a change, although my main focus is the main website as able and finding help for copy editing and getting documetns ups , it's going to be too much for me, I can do on blogger it's easier, may link to the main site, not look as professional, however I was worsened so much again that even getting them on blogger is now difficult, I don;t have the energy to SIT UP.

I am worsening more rapidly. save cheryl indeed.

yesterday neck and waist gave out and then spasmodic dystonia

noreply@blogger.com (Cheryl Benson) — Wed, 21 Oct 2009 12:31:00 -0400

yesterday neck and waist gave out and landed on coffee table and just missed the pc laptop (not the first time, this increasing, it has already smashed my mac which it landed on twice, since coming back from being fixed I keep it away from me and use the old pc laptop) my left side of my body hadn't gone weak yet and I was just able to slighting move it while going down face side ways with glasses on. The the opposite occured and the spasmodic dystonia in my neck started to cramp paralzing it. So in a very short time, it went from being to weak the muscles and ligaments and then being too stiff. The pain from the spasmodic dystonia is gruesome to say the least, the levels of gruesome depend on which body part, and also how hard I landed on what every I landed on at the time. Usually it's the floor.

This wasn't letting up, and I wear a bag around my neck of the little medication afforded to me and begged for from a neurologist involved who refuses to give any to stop the myoclonic dystonia or the spasmodic. I only have 1, I got out of him the clozapam. If I can't reach the bag around my neck, well that speaks for itself.

Usually`I have to be given some form of alchol and I have been left like this for years, and the extensive damage, my dystonia's are alcohol responsive. Go figure as my ME/CFS and Hep C are not. I do have old prescrubed muscle relaxants from years ago Flexeral before they cut me off I have tried and still do and OTC Norflex, but then the next day, my neck gives out and my waist even more.

My private caregiver was coming, she found a way to get in and get medication in my mouth and some beer. Still didn't work, had to take more, this was really bad one. They increasingly are, the spasmodic dystonia down my spine is every day now, shortening the muscles and liagments, and I go backwards in a bow.

I told her make sure my glassed were ok, I had been able to shove the pc over about an inch after I hit landing, and I told her to go get the camera, it has video. The camera wouldn't go on. Having problems with the batteries. Some of this I need on video, so the neurologists can see what is going on, so they can't pull the same crap they have prior, saying it doesn;t exist, or "it's not happening now", well it's nothing something you do on command.

It took quite a bit of time, a few beers, she couldnt even get me pulled up for some time the spasms were so bad for a while. Finally she had to put one hand on my forehead, and the other around the front of my body and push me backwards so I would be sitting up on the couch.

from there I still managed to dictate my shopping list which I was just in the process of starting to type when it happend for her, she got me to bed before she left, and by then the left side of my body was dragging.

Needless to say I didn't get showered yesterday or my clothes changed. I was able to delete emails that weren't personal in nature, or have no interest in for the next while, and sent 2 brief ones out in the evening, and back to bed.

about this morning, same as every morning since I came off the drugs in 2004, waking up to mycolonic dystonia (used to be always with seizures, now sometimes, or separate), with the extra delight of having the dystonia cramp down my spine every day now .............next ............. on ward

actually I have a video where my neck is cramped and my spine, I was editiing it last week for my youtube channel(s), I was going to upload it here but I can't find it on the computer. when I do I will post it.

What did I wake up to this morning

noreply@blogger.com (Cheryl Benson) — Mon, 19 Oct 2009 09:53:00 -0400

the left side of my body, which is often weak, totally gave out, from the knees, my neck and I went down on the floor - no dystonia convulsions. This has happened before, but is increasing and different parts of my body. I am wondering is this all the extensive damage, or is MS involved as well. Many with ME/CFS have problems with movement, it is classified as along side motor neuron diseases and disease of the central nervous system by WHO since 1969.

However, I have the extensive ligament damage from the repeated brain and body damage from 2003-2004, including the left side of my body that paralyzed and then remained weak and often drags around.

I made it to bed shortly after going down on the living room floor, only to have the myoclonic dystonia start, as usual shortly after, it starts right away or shortly after I wake up. And then the gruesome spasmodic dystonia down my spine arching me paralized backwards in a bow like shape, often with the convulsions included.

That has been my morning. On with the day and more writing and editing for my website, I have put out calls for help. I keep writing everything that happened over and over, obviously still traumatized and left like this. I worked on petitions, I have not been able to get the over view under 5 pages. I feel I can't leave anything out. Have that all clearly displayed on a website will help.

onward -

Secondary Dystonia Causes, What Choices Am I to make when caused by Drugs in the first place

noreply@blogger.com (Cheryl Benson) — Mon, 19 Oct 2009 09:46:00 -0400

Dystonia, as is ME/CFS is little known neurological illness or damage, and there are many forms of dystonia, usually involving parts of your body or groups, cramping muscles and ligaments together, sometimes on and off, sometimes they stay permaent, others are movement disorders, some very severe in nature like mine that involveds all the muscles and ligaments spamsing in your body at the same time, or rapid jerks that look then often look like seizures, notably you can talk though most of these, sometimes, for me they are mixed with seizures, i was left to endure for years with no medication to stop them, the seizuure medication used for misdiagnosis for bipolar and on them for only 3 months not only damaged every muscle and liagemtn in my body, but the Tegretol started the Acute Dystonia as well and seizures.

Dysknisa (TD) if often caused by neurolpetic's but many other drugs do, as they also do with Dystonia.

What I find frustrating, and maddening, is that most of the Dystonia/Dyskenisa sites, only list neuroleptics as the cause still in 2008 and 2009, which is anything but the case. And that many of the drugs prescribed to treat them are cause of dystonia and dysensia's.

Some of the drugs that can cause dystonia and dyskenisa's most notably dystonia are:

- neuroleptic's, lithium, antidepressans (SRRI's and SRNI'S are notorious for causing and worsening dystonias's), tegretol, buspar, xanax, dopamine antagonists, dopamine depeleting drugs, here is a short list:

The list of drugs causing drug induced dystonic reactions is long but includes:

* antidepressants (amitriptyline, Amoxapine (Asendis), bupropion, clomipramine (eg Anafranil), doxepin (eg Sinequan), fluoxetine (eg Prozac), imipramine, nortriptyline (Allegron), trimipramine (Surmontil) and trazodone (eg Molipaxin)).

* anti-anxiety agents (alprazolam (Xanax), buspirone (eg Buspar))

* anti-nausea/vomiting agents (metoclopramide (eg Maxolon), prochlorperazine (eg Stemetil)).

* neuroleptics (chlorpromazine (eg Largactil), clozapine (eg Clozaril), fluphenazine (eg Moditen), haloperidol (eg Haldol), perphenazine (Fentazin), promazine, trifluoperazine (eg Stelazine)). The dystonia associated with neuroleptics is often called tardive dystonia.

* other drugs include the psychiatric drug lithium (eg Priadel), midazolam used in anaesthetics, phenytoin (eg Epanutin) an anticonvulsant, promethazine (eg Phenergan) an anti-allergy drug

There are many types of dystonia, some are herditary, many are Secondary, meaning they are caused by other factors. Some involve movement disorders while others cause cramping of muscles and ligmanets of parts of your body, and in many cases, causes the spasmodic dystonia to spread through your body.

Causes, included but not limited to:

- there is a heritatory Dystonia, which can be checked for through gene study and rules in/out
- neurological illnesses can cause or contribute
- damage from drugs or perscribed medication that damage the basil gaglia of the brain. Note the studies have shown this had already may have occured in many with ME/CFS.
- any tramua's to the brain, tramatic and aquired
- lack of oxygen to the brain
- others

(see links at end)

There is no cure for dystonia's, there is no cure for dyskenisa's. These, with the exception of hereditary, are often human made, as in prescribed medications, or human error.

Not so oddly enough, many of the drugs prescribed for dystonia, dyksenisa, parkisons, parkinsomium, cause dystonia and dyskensia and parkinsonium,

So what do you do when yours is caused from medications and neurological illeness that has been mostly ignored by the world although worse than HIV/AIDS and MS, unless the last few weeks of living?

Do you take those drugs, do you let them experiment with drugs again to find out the right ones or groups that may help control the dystonia's? There is brain surgery and TMS stimulatatin as well. While many of these help, many have caused more damage, including stroke, and no help or improvment whatsoever.

Some of the treatments for Dystonia's:

- if you can get out, psychical therapy, meditation, muscle realaxtion
- oral medications, some which cause dystonia' themselves (see end links)
- Brain surgery or TMS ie, brain stimulation, they also use this for medication intolerance depressants, often used in Parkinsom's notably with more success and also epileptics, although few use the procedure, and keep prescripting drugs.

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20090515/wfive_epilepsy_090516/20090516/

Notably, the 2nd part of that video shows the 48 hour EEG with video I was denied at the Western, I needed for seizures and also to determine how much was seizures and dystonia, as I was having both, which I was denied, while others were not.

I have so far, been left to endure dystonia, 2 types, the myoclonic - and and the spasmodic since March 2003 when I had acute dystonia and seizures, and non-stop since about Febuary/March 2004. my arms sockets are giving out.

With psychatry in the picture where it does not belong, as these are neurological, many people get pshychatrized saying the dystonia's are psychatric, even ICU nurses. Where have I heard that before, oh yes my ME/CFS. For many it takes years of getting proper diagnosis, especially myoclonic dystonia (looks like seizures to you but you can talk through them), as well as the spasmodic. Why because they don't know the answer and are arrogant, do not listen, and many don;t want to be disproved by sending you to a neurolgoist that only deals with dystonia's. And then there is psychatry that wants behavorial control, and wants to psychatrize everything. Even your morning cup of coffee.

Also to be noted that many people with dystonia;s, their dystonia's are alcohol responsive. Meaning they stop or reduce the dystonia's. However, in the long run, they can worsen them. Many people left untreated, even those getting treatment from neurolgists use some form of alchohol.

My ME/CFS often are alcohol intolerant, it has varied over the years. My Hep C is intolerant and only does more damage. My dystonia's are alcohol responsive and I have had to rely on some form of alchol of and on to try to control them, when cut off medications to do so, or even on 1 I was prescrbied. Oddly enough the Amantadine, a dopamine antagnoist, stopped the dystonia, but make by POTS worse which then worsened the dystonia. Such is the life of many drugs from Big Pharma.

here are some links to some organiztins, unfortunately as mentioned many who say there are leading in the field of advacacy only have neuroleptics mentioned as cause of medications. Not only poor information but what kind of Advacocy is that?

http://www.lhsc.on.ca/Health_Professionals/CCTC/edubriefs/motorfnc.htm

http://www.dystonia-foundation.org/

http://www.wegohealth.com//

http://www.dystoniacanada.org/

http://www.cmdg.org/

XMRV retrovirus found in 67% of 101 ME/CFS patients, test available and Testing for other viruses related

noreply@blogger.com (Cheryl Benson) — Thu, 15 Oct 2009 12:05:00 -0400

There is a big buzz about the XMRV retrovirus , although many viruses have been found and related to ME/CFS, several I have tested positive for. there is quite the list now most of the testing is in the USA so of course is the latest one. This latest retro-virus the ME/CFS community is excited for several reasons.

Firstly, that it proves without a doubt that it is a disease, and pushes psychiatry and non-believers out the door and also a lot of the criteria set by the CDC, which psychiatrizes ME/CFS quite a bit as well as some of their other criteria. Although not everyone will test positive, and as mentioned there are other virus related, HH6-A and; B, HH7, RNase L, Coxscackle, EBV, Herpes zoster (Varicella Zoster is also now suspect which I have tested positive for as well as HHV-6 and EBV Canada doesn't have the other tests), and another virus was discovered several years back, I can't remember the name and will update when I find it. There is a more comprehensive list at the end of this posting.

As this may be treatable with HIV and antiviral drugs, and is a subset from prostrate cancer, the community is very excited. I was on antivirals or immune modulators Immuvoir,I was cut off from I did have improvement, and I have Herpes zoster as well. I still have some old medication left for that, however my body doesn't like it very much. I wonder if Ampligen will have any effect on this and the antivirals, they telling people to wait until more research is done. And drugs that actually kill it, not just control or subdue them is another factor.

THE TESTING: There is a test out or will be soon in the USA, you have to have doctor sign for it, which I don't have still. And I haven't called to see if they will shipped to the Canada, I will when I get a doctor.

VIP lab in Reno, NV has test kits for PCR test for the XMRV virus itself. Another test kit recommend by Dr. Paul Cheney is the NKCP & LYEA test. Your doctor

can call the lab for information and can order the test kit(s) sent to

directly to you. You can also call for pricing, which has been postponed

until the release of the paper. VIP Lab: 775-351-1890, call from 11am-7pm

(CST) M-F.

If you want to be tested call the lab at the above number and they will ship out a kit to you. Your doctor has to sign , then take it to a local lab to get the test done and then it gets shipped overnight back to VIP Labs. It takes about two weeks to get the results.

FROM WHITTEMORE

http://www.wpinstitute.org/news/news_current.html

Other labs and viral and other tests for ME/CFS are located at:

Specialty Laboratories, REDLABS USA, currently are your best choice for the other viruses and tests need if you are Canadian or in the USA. Not covered by Canada and not available here, and is expensive. Health Canada really needs to get up to date.

* Health Genetic Center [Canada] http://www.dna-human.com/

* REDLABS [USA] http://www.redlabsusa.com/

* RED Laboratories [Belgium] http://www.redlabs.com/

* Immunosciences Lab [USA] http://www.immuno-sci-lab.com/

Here is one of the articles, there is a PDF as well from Whittemore.

In today's issue of Science Express, researchers at the

Whittemore-Peterson Institute (WPI), the Cleveland Clinic and the

National Cancer Institute report that 67% of 101 chronic fatigue

syndrome (CFS) patients tested positive for infection with xenobiotic

murine retrovirus (XMRV), a gammaretrovirus associated with a subset of

prostate cancer. Only 3.7% of 218 healthy subjects tested were positive

for the virus.

Read the joint press release issued today at

http://capwiz.com/cfids/utr/1/BIILLKJMEJ/HHUOLKJOAR/4054859476.

An abstract of the article will be available later

today at

http://capwiz.com/cfids/utr/1/BIILLKJMEJ/ERPLLKJOAS/4054859476.

The full article text is available to Science

subscribers, American Association for the Advancement of Science

members; one-day access to the AAAS site can be purchased for $15.00.

These important results provide evidence of the association of at least

a subset of CFS cases with retroviruses, a hypothesis formed in the

mid-1980s and pursued by several independent research groups. XMRV was

recently discovered in a subset of prostate cancer patients' tumor

cells and the finding by Lombardi et al may be the first documentation

of XMRV infection in women.

The authors raise questions about this discovery at the end of the

article, including "Is XMRV infection a causal factor in the

pathogenesis of CFS or a passenger virus in the immunosuppressed CFS

patient population?" This question and others warrant additional

investigation and the replication of this study's findings in other

patient cohorts should be a priority for the field. There is currently

no commercial test available for XMRV and studies of antiviral and

antiretroviral treatments must be conducted to test their efficacy

against XMRV infection.

The CFIDS Association of America congratulates Dr. Mikovits and her

team at the Whittemore-Peterson Institute and their collaborators at

the Cleveland Clinic and National Cancer Institute for this landmark

discovery. The findings themselves and publication of them in a journal

of the stature and circulation of Science is a highly significant

contribution to the field. This study and the high-profile publication

are important validation of the reality and seriousness of CFS and

those who suffer and have been stigmatized too long.

Citation:

Detection of an infectious retrovirus, XMRV, in blood cells of patients

with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Gupta JD,

Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski

C, Gold B, Dean M, Silverman RH, Mikovits JA. Science 8 October 2009.

1179052.

OTHER TESTS FROM REDLABS FOR ME/CFS:

Here is a list of other tests from Redlabs, I don't agree with the CDC definitions of whether you have ME/CFS or not, many have already been proven wrong and are still listed on Redlabs sites. Many people get depressed having ME/CFS/FM, some can drink, some can't. I have been alcohol intolerant on and off since I got ME/CFS, especially the first few years.

CHLP Chlamydia Pneumoniae - Qualitative: 87486

CISP Panel Chronic Infection Screen

CHLP Chlamydia Pneumoniae - Qualitative: 87486

CMVD Cytomegalovirus -Qualitative: 87496

EBVD Epstein Barr Virus - Qualitative: 87798

HHV6 Human Herpes Virus 6 - Qualitative includes A & B determination: 87532 x2

HHV7 Human Herpes Virus 7 - Qualitative: 87798

MYFM Mycoplasma Fermentans: 87798

MYPN Mycoplasma Pneumoniae: 87581

VZV Varicella Zoster- Qualitative: 87798

CMCP Panel Complete Chronic Fatigue Panel

ELAS Elastase: 82657

NKCP Natural Killer Cell Enumeration & Functional Assay (LU30) Panel: 88230 x2; 85032; 82397; 86357)

NOAS Nitric Oxide Synthase: 88184

RNAA RNase Activity Assay: 82657; 82664; 83912

RNAP RNase L Protein Quantitation: 84238; 84166; 83912

CMVD Cytomegalovirus -Qualitative: 87496

CYT1 Panel Cytokine Profile

GM-CSF GM-CSF, circulating levels: 88185

IFN gamma - Serum Interferon Gamma, circ levels: 88185 - Serum

IL1 beta - Serum Interleukin 1 Beta: 88185 - Serum

IL10 - Serum Interleukin 10, circulating levels: 88185 - Serum

IL12p70 - Serum Interleukin 12, circulating levels: 88185 - Serum

IL2 - Serum Interleukin 2, circulating levels: 88185 - Serum

IL4 - Serum Interleukin 4, circulating levels: 88185 - Serum

IL6 - Serum Interleukin 6, circulating levels: 88185 - Serum

IL8 - Serum Interleukin 8, circulating levels: 88185 - Serum

TNF alpha - Serum TNF alpha, circulating levels: 88184 - Serum

TNF beta TNF Beta, circulating levels: 88185

EBVD Epstein Barr Virus - Qualitative: 87798

ELAS Elastase: 82657

HHV6 Human Herpes Virus 6 - qualitative with A & B determination: 87532 x2

HHV7 Human Herpes Virus 7 - Qualitative: 87798

HHV8 Human Herpes Virus 8 - Qualitative: 87798

HHVP Panel Herpes Infection Panel

CMV Cytomegalovirus - Qualitative: 87496

EBV Epstein Barr Virus - Qualitative: 87798

CMV Cytomegalovirus - Qualitative: 87496

HHV6 Human Herpes Virus 6 with A & B determination - Qualitative: 87532 x 2

HHV7 Human Herpes Virus 7 -Qualitative: 87798

HHV8 Human Herpes Virus 8 - Qualitative: 87798

HLP1 Heavy Metals Lymphocyte Proliferation Assay: 86353 x10

HLP2 Heavy Metals Lymphocyte Proliferation Assay: 86353 x10

HTLV Panel T-cell Lymphotrophic Virus Profile

HTLV 1 T-cell Lymphotrophic Virus 1: 86687

HTLV II T-cell Lymphotrophic Virus II: 86688

IMO1 Immunobilan: IgA & IgM intestinal pathogen assay: 86317

INFP Panel Inflammation Panel

CRP1 C-Reactive Protein, High Sensitivity: 86141

ELAS Elastase: 82657

NOAS Nitric Oxide Synthase: 88184

RAF1 Rheumatoid Factor (Rheumatoid Arthritis): 86430

INSP Panel Infection Screen Panel

CHLP Chlamydia Pneumoniae: 87486

MAPD Mycoplasma Avium Paratuberculosis: 87561

MYFM Mycoplasma Fermentans: 87551

MYHM Mycoplasma Hominis: 87551

MYPN Mycoplasma Pneumoniae: 87581

TPGD Toxoplasma gondii: 87798

LYEA CD4/CD8 Lymphocyte Enumeration Assay: CD3, CD4, CD8, CD19, CD45: 86359 x2; 86360 x2

MCP1 Panel Mini Chronic Fatigue Panel

ELAS Elastase: 82657

NOAS Nitric Oxide Synthase: 88184

RNAA RNase Activity Assay: 82657; 82664; 83912

RNAP RNase L Protein Quantitation: 84238; 84166; 83912

MYCP Panel Mycoplasma+ Panel - Qualitative

MAPD Mycoplasma Avium Paratuberculosis: 87561

MYFM Mycoplasma Fermentans: 87551

MYHM Mycoplasma Hominis: 87551

MYPN Mycoplasma Pneumoniae: 87581

MYFM Mycoplasma Fermentans: 87551

MYPN Mycoplasma Pneumoniae: 87581

NKCP Natural Killer Cell Enumeration & Functional Assay (LU30) Panel: 88230 x2; 85032; 82397; 86357

NKEA Natural Killer Cell Enumeration Assay: 86357; 85032; 82397; 88230

NKFA Natural Killer Cell Functional Assay - Lytic Unit 30% (LU30): 85032; 82397; 88230

NOAS Nitric Oxide Synthase Assay: 88184

Cytokine - Spinal Fluid Cytokine Profile - Spinal Fluid

IFN gamma Spinal Fluid Interferon Gamma, circ levels: 88185 - Spinal Fluid

IL1 beta - Spinal Fluid Interleukin 1 beta: 88185 - Spinal Fluid

IFN gamma Spinal Fluid Interferon Gamma, circ levels: 88185 - Spinal Fluid

IL10 - Spinal Fluid Interleukin 10, circulating levels: 88185 - Spinal Fluid

IL12p70 - Spinal Fluid Interleukin 12, circulating levels: 88185 - Spinal Fluid

IL2 - Spinal Fluid Interleukin 2, circulating levels: 88185 - Spinal Fluid

IL4 - Spinal Fluid Interleukin 4, circulating levels: 88185 - Spinal Fluid

IL6 - Spinal Fluid Interleukin 6, circulating levels: 88185 - Spinal Fluid

IL8 - Spinal Fluid Interleukin 8, circulating levels: 88185 - Spinal Fluid

TNF alpha - Spinal Fluid TNF alpha, circulating levels: 88184 - Spinal Fluid

RNAL Panel RNase L Panel

RNAA RNase Activity Assay: 82657; 82664; 83912

RNAP RNase L Protein Quantitation: 84238; 84166; 83912

VZVD Varicella Zoster- Qualitative: 87798

Public Appeal For Cheryl Benson Medical Treatment and Human Rights

Short Overview and Your Help Please

update on paralysing, medical records, staying alive .... and a test post with new feed

Woman Paralysing Daily from Dystonia refused hospitalization by Toronto Western Hospital

Generalized Dystonia - Arms & Legs

Oral Tardive Dyskenisa Lip Smacking from psycotropic drugging

FDA CONFIRMS: XMRV- MLV Virus Variants found in 32 of 37 ME/CFS patients- HIV Related Retrovirus

Hyperbaric Oxygen Therapy (HBOT) corrects brain-injury.

World Map of ME- Chronic Fatigue Syndrome & Fibromyaglia Sufferers - Add Yourself

Action Alert: April 20 Deadline for Comments ME/CFS NOT Mental Diagnosis to APA in USA, links info here

Dr. David S. Bell's XMRV Presentation

Correlation between dystonia and fatigue? 18 Hour Day work out, Add that to ME/CFS, FM, paralized and a Mac

Kay Gilderdale cleared of attempting to murder daughter with ME

Related Links

Related Links

Letter to Keir Starmer QC: Not in Public Interest to Prosecute Kay Gilderdale

ME/CFS, Joints body parts giving out from generalized dystonia and muscle ligament damage

ME/CFS Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) - Day 2 - 420 min Video

ME/CFS Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) - Day 1 - Video Link 480 minutes

ME/CFS Fuctioning and Energy Index Tables take to your Doc

ME/CFS LATEST NEWS: XMRV Retrovirus TESTING is Available

ME/CFS Crashed = Bedconfined or almost - The Computer is my bedmate

Readers Ask: A Virus Linked to Chronic Fatigue Syndrome - Consults Blog - NYTimes.com

Saving Cheryl

yesterday neck and waist gave out and then spasmodic dystonia

What did I wake up to this morning

Secondary Dystonia Causes, What Choices Am I to make when caused by Drugs in the first place

XMRV retrovirus found in 67% of 101 ME/CFS patients, test available and Testing for other viruses related