I am honored to host the third session in my series of interviews for awareness of Fibromyalgia and Chronic Fatigue Syndrome. This is a fantastic day for sure!

Hear Lori Chapo-Kroger explain how the State of Alabama is currently being progressive and moving to establish a Center of Excellence for these diseases.

The state had little care available for people with neuro-immune illnesses. They want to drastically change that reality. Like everyone else, the people in Alabama need good medical care. I hope the state will become a role model for others to follow. Find out how to have that kind of awareness and advocacy for your state, too.

(Today’s podcast is 24 minutes 21 seconds long.)

Hear her explain how these two illnesses affect multiple body systems and how that singular fact makes it that much more difficult to get the best medical care.

Hear Lori Chapo-Kroger tell us the great story of Florence Nightingale and how that famous lady was so important to May 12th being recognized as the day we celebrate Awareness Day.

Considering all that Florence Nightingale did during her lifetime, this week’s interview guests, Celeste Cooper and Lori Chapo-Kroger, are walking bravely forward on their own paths. I am humbled, inspired and happy to be counted among the people who are trying to make our existence and our world better.

Thank you so much for joining me today for the Health Matters Show and the two previous interview sessions. If you want to contact the grassroots, volunteer organization that Lori Chapo-Kroger volunteers for, check out Pandora Org.net. Also, Lori said that anyone can reach her at info@pandoraorg.net.

Now don’t forget to…share, share, Share! These resources are important!

Cinda Crawford, your host
Health Matters Show

The Friday podcast of the Health Matters Show featured Celeste Cooper, Part 1, in the first part of a lengthy interview that she did with me in honor of 2013 Awareness Day for Fibromyalgia and Chronic Fatigue Syndrome. It was fantastic! Today I bring you Part 2, equally fascinating material that broaches additional topics concerning awareness and how you can start to improve your health.

If you need information on who my interview guest is, please go back to “Part 1″ and check out Celeste Cooper’s credentials. This dear lady is well respected in her field!

Now it’s time to click on the audio podcast today (below) and hear her explain how she approaches chronic pain and illness, particularly in how to balance the mental, emotional and spiritual components. By successfully doing this, you and I will be better able to survive the illness while remaining happier, more well-rounded and living with less stress. All equally great goals!

(Today’s podcast is 38 minutes 56 seconds. Enjoy!)

In this, the second part of the longer interview, Celeste Cooper covers all these topics in some detail. There is certainly a lot of material here that you hopefully can relate to. Possibly, something being said and offered may help you or someone you love. That is the goal.

Points covered, such as:

• How to better control your life and not get stuck in depression.
• No one wants to be around someone who is constantly complaining.
• Don’t be afraid of what you don’t know, the unknown. Of course, read the information that you need to know, keep up with the major literature, if you can. But, then shun much of the rest, especially if it is full of doom and gloom. You don’t need that!
• Don’t fear the worst will happen with your cognitive dysfunction symptoms. Yes, it’s important to respect your limits at any time, but know that better days may be ahead. You may function more clearly tomorrow.
• As a part of every day, find things to laugh about in yourself. Keeping a sense of humor is vital!
• If you don’t have it, develop the skill and wisdom of changing how you talk to yourself. What your mind tells your body, it believes!
• And finally, make every effort to develop your spiritual side. Without it, you’re not balanced and stable.

From Cinda…of all the people I’ve encountered in my journey through these illnesses, having an underlying faith and belief in a higher power is critical to getting well and staying well. My belief is in God.

In the end, acceptance of who and what you are is so very important. Believe in yourself and in the power of your body, mind and spirit to heal. In Celeste’s words, “It’s a grieving process.” We don’t all go through it at the same pace or in the same ways. Either way, you cannot afford to get stuck in a downward cycle that is ultimately negative and hurtful.

To find out more about Celeste Cooper, her website and the fantastic books she has written, visit These Three.com. I thank you for joining the Health Matters Show today. Please be sure to return here tomorrow when I feature Lori Chapo-Kroger in the last in this series of interviews and podcasts honoring and informing others about 2013 awareness and the topics so vital to each of us.

If you would do me the courtesy of commenting on the material or on what Celeste Cooper has talked us or “sharing” it on the social media websites, we both would appreciative it so much. This great lady has indeed been a fantastic and knowledgeable guest.

Thanks, Cinda Crawford
Your host for the Health Matters Show

Both Fibromyalgia awareness and Chronic Fatigue Syndrome awareness are incredibly important topics to patients, their loved ones and the medical profession. That statement was never truer than right now.

Today as we all begin celebrating Awareness day and week, I’m bring you some very special interviews. Truly, I am so excited! Today’s Health Matters Show Friday podcast features Celeste Cooper with the part 1 of a two-part series.

Along with covering both Fibromyalgia and Chronic Fatigue Syndrome, both Celeste’s interview and the one that follows (*interview number 3, May 12th) also feature information on neuro-endocrine related illnesses (term: NEID) and the grass roots, volunteer organization known as PANDORA. You’ll hear about this in detail if you listen to all three of the audio podcasts this weekend.

Normally I only offer 1 podcast on Friday of each week. But due to the nature of Awareness day falling on Sunday this year, I decided to do three shows and bring you that much more material.

Celeste Cooper is a retired nurse, originally certified in emergency nursing. She specialized in hospital-wide education and designed programs for the Missouri State Board of Nursing and ran a training center for the American Heart Association.

The author of several books, such as Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain, Celeste is considered a renowned author, lecturer, Fibromyalgia expert and has appeared or contributed to Dr. Oz, Harpo Studios, Jeff Arnold, and Discovery Communications, plus she advocates for all chronic pain patients as a participant in the Pain Alliance. Counting her personal health problems, trials, setbacks and successes, surely Celeste Cooper is a very valid person to speak to us today.

(Today’s podcast is 24 minutes, 37 seconds.)

One nice suggestion that Celeste makes is for us all to use our time, talents and treasure well. Don’t be shy; take action and make a difference. Find several ways to participate in advocacy at her website, TheseThree.com. From writing letters to contacting people who can make a difference with elevating the knowledge and science of these illnesses, there are lots of options.

Another topic covered in the interview is how many rheumatologial and autoimmune illnesses there are (beyond Fibro and CFS) that are celebrated for awareness in the month of May, such as Hashimoto’s Thyroiditis, Lupus, Ankylosing Spondylitis, Ehlers-Danlos syndrome, Osteoporosis, Osteoarthritis, Rheumatoid Arthritis, Gout and allergies.

There are other great topics discussed during the interview. Please take time to listen to it here on the blog, download it to your i-Pod or catch it on i-Tunes.

Then please comment and share the news of this fantastic series of interviews. It is my pleasure to bring each part to you. Thanks so much. Let the celebration begin!

Cinda Crawford, host of the Health Matters Show

Spread the good word: Awareness Day Interviews Are Coming!

Yes that’s right. I’m preparing the files and information now.

If you come back to the blog and podcast this week in particular, you can catch some fantastic information that’s being shared for Awareness Day and Week. As we all celebrate increased awareness for Fibromyalgia and Chronic Fatigue Syndrome and the good that increased exposure can do, know that there are many, many suffering from the illnesses and more.

I vow to increase awareness by sharing the good words and resources that I find. I appreciate you doing likewise by sharing my posts and podcasts to come. Importantly too, many people are going to great lengths to put out great material. My guests are some of the best and you’ll find this out for yourself by returning to the website!

Thanks so much, Cinda Crawford
Your host of the Health Matters Show

*PLEAST SHARE THIS INFORMATION!

The reason why there’s no cure for CFS (Chronic Fatigue Syndrome) is because doctors, scientists and whoever have not nailed down the cause of what is going wrong in the human body. For CFS patients, certainly many abnormalities have been found so far in immune cells, blood cells, organ and system functions and the body’s semi-nebulous, hard-to-pin-down body systems of fatigue and sleep.

However, if no one gets to the root of the underlying problem, then the ultimate cause of CFS (or causes) will not be found, identified and considered for impact on a patient’s body, mind and spirit. That truth goes for absolutely anyone and everyone who is sick with the illness. That truth also applies to many other hard-to-diagnose illnesses. There certainly are many of them. The closest cousin to CFS is Fibromyalgia, lurking in the shadows with a little of some CFS symptoms and a whole lot of just a few. Like I said, kissing cousins, maybe even siblings…still without a cure either.

This last FDA meeting, which began April 25th, focused on symptomatology, not causes of what is wrong. *See the link below.

Of course, every CFS person would like to get rid of all of their symptoms, but at what cost? Fifteen more drugs that you can’t afford and/or may overload your system with an abundance of drug side effects? Symptom relief is good, but it is not the end-all of the problem. We’re starting at the wrong end of this problem!

(Today’s podcast is 7 minutes 39 seconds.)

We, the FDA, HHS, CDC, NIH and more must remember that there has to be one or more reasons why as many as 1 million people (in the US alone; more outside it) suffer with Chronic Fatigue Syndrome. Not only does this illness diminish our quality of life, but it takes wages out of the economy. It takes tax dollars out of the federal and state coffers. It takes money to support us with disability income payments and benefits, like food stamps. And worst of all, it takes money out of our family’s income that is needed for not only everyday needs, but also to educate our children.

In the long run, if enough years go by, it creates a shaky retirement environment. You, the patient, has lived years and years without being robust, feeling well, enjoying life and planning for your future. With the prospect of living more years as a “sick” person, the need to determine the cause of CFS has not been found.

I say that POO! on symptom relief. In this effort, the CFIDS Association of America is wrong. Instead, let’s have the FDA and more find the cause of CFS. That’s all we need right now: the cause of CFS. Give people real, long term hope. Let’s do the necessary research work and investigation to find the root cause of this tremendous health problem!

As I end today’s Health Matters Show, I am grateful to the Kafka Pandemic website and supporters who addressed these issues for the FDA Meeting. May we all continue to have people who aren’t afraid to fight or speak their minds -or- find the cause of CFS.

Thank you, Cinda Crawford
Host of the Health Matters Show

(from Samuel, Kafka Pandemic)…I believe that this meeting is at least in part designed to pacify advocates and help out a few drug companies who want to sell palliatives like stimulants.

I will be happy to be corrected, but I do not welcome apologia from those who profit (or believe that they do) from the status quo.

I implore all people to:

1) Please attend the meeting
2) Please make it plain that we are talking about a DISEASE
3) Please include the [ENTIRE range of severity] in everything related to the disease

You ask the question, “Why am I so tired?” You’d like an answer, even if it means that there is something wrong with your health.

Today, scientists have uncovered a biological breakthrough that offers fresh hope for Chronic Fatigue Syndrome and ME (Myalgic Encephalomyelitis) sufferers. Yippee!

A recent study revealed that the muscle cells of patients suffering from ME (also in some circles known as CFS or ME/CFS) were abnormal. This likely could be the cause of why they are so overwhelmingly tired and cannot cope with prolonged, physical activity.

An analysis of muscle biopsies suggested that the cells had undergone substantial changes making them less able to cope with exertion.

(Audio podcast 9 minutes 9 seconds)

The finding shows that whatever the initial trigger for ME, the condition leads to a cascade of physical changes right down to the cellular level.

Despite a growing body of evidence that ME has real physical symptoms, some patients still report facing stigma due to popular misconceptions that the condition is “all in the mind”.

Professor Julia Newton, dean for clinical medicine at Newcastle University who led the study, said that the latest science was changing the way people view ME.

“You change people’s perception of this terrible symptom,” she said. “…in some cases the patients reported feeling vindicated by the findings which reveal basic biological differences between patients with ME and healthy volunteers.”

Professor Newton presented her findings in London recently at a meeting marking the launch of a UK ME collaboration aimed at generating more high quality research into the disease. This is really good news.

In her study, scientists took muscle biopsies from ten patients and from ten healthy but sedentary volunteers. The muscle cells were grown into small pieces of muscle in culture, and subjected to “exercise” in the form of electrical impulses.

The cells from ME patients produced on average 20 times as much acid when exercised, suggesting an underlying cause for the aching muscles that patients often experience as soon as they begin to exercise.

The cells also showed other abnormalities, such as reproducing more slowly.

“We have found very real abnormalities,” said Professor Newton.

ME (the disease) affects more than 600.000 people in Britain with a quarter of those people unable to perform even basic life activities or look after themselves. In the USA, CFS patient figures are already at the 1,000,000 mark, but some of those are not as sick as the ones with ME. (Note: current treatments for ME from the NHS include talking therapy and exercise. In the USA, treatments vary and resources can be found all over the country. However, rarely is exercise suggested for CFS nor is it considered a psychiatric illness.)

So let’s get back to your question, “Why am I so Tired?” This new data could be an answer for you and surely something your doctor can sink his or her teeth into. I urge you to check out ME and CFS more thoroughly for your research.

Thanks, Cinda Crawford
Host of the Health Matters Show

Are B-Cells to blame for Chronic Fatigue Syndrome (CFS)? According to the following new info, B-cell dysfunction may play an important role and the following information will explain part of what’s going on.

The ravages of chronic fatigue syndrome may be the result of an overlooked but essential part of the body’s own immune system.

The original article that is the basis for this post was written by Jill Neimark of Discover Magazine, April 03, 2013.

For the research into the cause of Chronic Fatigue Syndrome, researchers and doctors have targeted everything from herpes viruses to retroviruses to depression. No clear answer has emerged. But surprisingly, a new explanation suggests that the disorder is an autoimmune disease of the nervous system caused by overactive B-cells, which are normally responsible for churning out pathogen-killing antibodies. Could that explain why people with CFS get so sick and come down with so many, varied illnesses? Possibly so.

In 2011, two Norwegian oncologists, Oystein Fluge and Olav Mella of Haukeland University Hospital in Bergen, along with colleagues, studied 30 people diagnosed with Chronic Fatigue Syndrome, also called CFIDS to note the dysfunction of immune components.

Each subject in the study received either a placebo or a highly specialized chemotherapy drug called rituximab, which rapidly and selectively depletes B-cells. After 12 months, 10 of 15 patients on the drug significantly improved; only two of 15 on the placebo improved.

This study marks just one more step in a growing body of research focusing on the role of B-cells in autoimmune disease. While they’re essential for helping the body fend off attacks, if something goes awry, B-cells can
generate antibodies that attack healthy tissues. With active antibodies flourishing and active, many symptoms including extreme fatigue and pain could be present and, seemingly, never go away. The autoimmune component won’t let them!!!

Until recently, T-cells — cells that activate and regulate the molecules responsible for controlling inflammation and immune response — were considered the great orchestrators of immunity. They were also thought to be the main drivers of autoimmune disorders. In turn, researchers considered B-cells to be the worker bees taking the T-cells’ orders.

‘T-cells were in fashion for a long time,’ says retired rheumatologist and researcher Jonathan Edwards. ‘B-cells were just considered boring.’ But Edwards was never convinced that T-cells were the alpha and omega of immunity.

To get a better picture and understand even more facts, be sure to read the full article. Keep this research info handy. Indeed in the end, the details of CFS (CFIDS) will probably reveal that there is a whole lot more dysfunction going on among T and B-cells than we ever knew about. If this has created an autoimmune condition, it surely explains some of why B-cells may be a significant reason of why Chronic Fatigue Syndrome is so hard to get rid of and/or under control.

Thanks so much, Cinda Crawford
Your host of the Health Matters Show

A bloodspot-based Fibromyalgia test (diagnostic test) for Fibromyalgia symptoms and related disorders has been met with some interesting success. Conducted by Kevin V. Hackshaw, L. E. Rodriguez-Saona, Marcal Plans Pujolras, Lauren Nicole Bell and Tony Buffington, analysts, their accepted manuscript is now in 2013 publication.

The aim of the study they conducted was to investigate the ability of a rapid biomarker-based method for diagnosis of Fibromyalgia Syndrome (a.k.a. FM, FMS, Fibro) using mid-infrared microspectroscopy (IRMS) to differentiate patients with FM from those with osteoarthritis (OA) and rheumatoid arthritis (RA), and to identify molecular species associated with the spectral patterns.

How can this help you? Will there be a Fibromyalgia test soon? Let’s see.

(Today’s audio podcast is 8 minutes 8 seconds.)

Note: This was a fairly small study. Replication in a larger group must be done for these results to be considered significant.

Blood samples were collected from patients diagnosed with either of the three illnesses. Spectra were analyzed using multivariate statistical modeling to differentiate groups. Aliquots of samples also were subjected to
metabolomic analysis.

Analysis revealed that the RA and OA groups were metabolically similar. Conversely, the FM group displayed biochemical differences that were quite distinctive from the other two groups. Yes! Now scientists believe that finding a statistical difference between Fibromyalgia, osteoarthritis and rheumatoid arthritis may be the first step in arriving at the answers we’ve all been looking for and needing.

You know as well as I do that chronic pain is not simply, plain ole’ chronic pain…always the same, never needing to be treated differently. Instead, chronic pain is merely a single symptom that can be indicative of many illnesses requiring lots of different treatments!

When the “causes” of health problems stem from different illnesses, this must prompt us to conduct more detailed study and analysis to get to the root of what is going on with each individual illness. It’s unwise to assume that we’re always dealing with the same one. Instead, we must look for the differences or peculiarities between them, if we are ever to figure this out and what and how this is affecting our health. Then and only then can we be close to discovering the real truths and arriving at the best conclusions.

Additional analysis also identified changes in tryptophan catabolism pathway that differentiated patients with FM from those with RA or OA. A second, measurable difference and characteristic, each one significant in its own right. Two differences are even better!

Does this mean that a lab technician can give you a diagnostic “Fibromyalgia test” and tell you whether you have the illness or not? No, but hopefully future results will be even more helpful in pinpointing the causes of all three of these bothersome and painful chronic illnesses.

Thanks so much for checking in with the Health Matters Show today.
I’m Cinda Crawford, your host

Did you know that viruses can play a big role in ME and Chronic Fatigue Syndrome? They can. Many people who get so sick with the symptoms of ME/CFS may not realize that a viral-related cause could be at play. And no matter whether you have sudden onset or gradual onset of the illness, if your immune system is not performing in an optimal manner, you could fall victim to the effects of such really troublesome viruses.

Take my health, for instance, when I got sick in 1990. I had so many viruses that my doctor quit testing me, quit counting the viruses and told me to go home to bed! Well that was twenty-three years ago when little to no helpful medicines were available and even less research. Only now are physicians learning more about the interaction between two specific, problem viruses that could be causing you big problems: Cytomegalovirus and HHV-6, Human Herpes Virus-6 and tag-along, HHV-7.

Today, I find it so exciting is that a new medicine, Cidofovir or HPMPC/ Vistide is indicating that a a huge improvement is possible in such patients who have these viruses. That is wonderful news because they are fairly common, they’re tough to get rid of and they can make you feel like a Mack truck just ran over you!!

This is exciting to me and surely for so many other folks with viral-related illnesses. Thank you for joining me today for the Health Matters Show today. Continue listening and reading to get more of this potentially explosive information.

Cinda Crawford, your host

(Today’s audio podcast is 9 minutes.)

See the following information is a summary of the from the 8th International Conference on HHV-6 & 7 on April 8-10, 2013 in Paris, France, as reported by the HHV-6 Foundation. (However, you can get a copy of the entire 119 page report by clicking on the link above.)

Treatments

Therapeutic potential of cidofovir (HPMPC, VISTIDE) for the treatment of HHV-6 and/or CMV infections in severely ill patients diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis

Gunnar Gottschalk, Isabel Barao, Daniel Peterson; Sierra Internal Medicine, Incline Village, NV, USA; University of Nevada, Reno, NV, USA

Objective: Herpesvirus infections and natural killer (NK) cell dysfunction may be important in the pathogenesis of Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) in a subset of patients. Cidofovir has broadspectrum activity against many DNA viruses including the Beta-herpesviruses human herpesvirus 6 (HHV-6) and human cytomegalovirus (HCMV). In this study, we proposed: 1) to determine the effect of cidofovir treatment on physical and cognitive functioning and NK cell function in CFS/ME patients with laboratory results suggestive of HHV-6 and HCMV infections; and 2) to evaluate the tolerability and safety of Cidofovir treatment.

Methods: From January 2005 to December 2012, we prospectively evaluated 65 severely ill CFS/ME patients who underwent Cidofovir treatment (intravenous; 5mg/Kg, every other week) in our clinic. Patients were tested for exercise tolerance (time on treadmill and oxygen consumption – VO2 Max) and signs of possible herpesvirus infection in blood via polymerase chain reaction (PCR) and antigenemia assays, before and after treatment. NK cell function was determined by a NK cell lytic unit (LU30) assay. The tolerability of Cidofovir was assessed by standard blood chemistry tests.

Results: 46/65 (70%) patients had a partial or full response to treatment. Of this group 27/46 (56%) presented with a full response to treatment and were able to return to work and/or daily activities. Increases in VO2 and in NK cell function were observed. There were 6/65 (9%) patients who stopped taking the drug due to adverse events, 5/65 (8%) patients who were “lost to follow up,” and 8/65 individuals (12%) who were non-responders to the drug. In general, Cidofovir was well tolerated.

Conclusions: An expanded study is indicated to confirm these initial results and explore new combination therapies for the treatment of this subset of patients diagnosed with CFS/ME.

NOW….PLEASE LEAVE A COMMENT AND SHARE THIS INFORMATION WITH YOUR FRIENDS!

I’m sitting here wondering what you would like to read, listen to and participate in for Awareness Day.

It will be here soon………..MAY 12th!

It is only a few short weeks away and I want to offer you something of real value!

So tell me, what kind of information really appeals to you? Speak up today and reveal exactly “what” you like.

DO YOU PREFER:

1) Audio interviews? (*If so, what topics are important to you?)
2) Video interviews? (Same approach. Please send me the title of your most important topic.)

*Note: the interviewee must have a video webcam for me to make this happen. That’s why it isn’t always possible to record a conversation on video.

3) Who would you like to have interviewed?
4) Do you personally like to participate in webinars? (If so, do you prefer to attend “live” online or catch the sessions after the fact, even though you can’t participate spontaneously?) The material is important, but the timing of when you interact with you is most important.
5) Do you prefer to get your material via email? (Do you open it when you’re ready to engage with it?)
6) Do you prefer to sign up for the blog’s RSS feed and read the material in a “reader” program?
7) Do you prefer to have access to free material?

–and importantly–

8) Do you have a Google + (Google Plus) account? If so, have you ever engaged in a “hangout”?

Right now, pick your top two choices of the eight listed above. Write a comment below. Let me know what form you would like to receive your information. Also, if you have a preference that’s not listed, feel free to send that idea along, too. I’m always open to suggestions.

I, personally, have found out that one of the nicest ways to get together is on a Google + hangout. If you have (or are willing to create) a Google + account, be sure to include me, Cinda Crawford, in a circle of yours. If you do, you could get a special invitation about Awareness Day very soon!

If I proceed with a Google + hangout in the week before Awareness Day (on Sunday) and if you are signed up in either my Chronic Fatigue Syndrome circle or my Fibromyalgia circle, you’ll be notified about events. Be one of the first people to find out about it as soon as its scheduled! So go ahead and include me within your Google + group of friend.

Take action now so that I can determine what kind of interest you have and how to create one or more spectacular events for Awareness Day! I’ll be making my plans accordingly and I hope you will, too.

Thanks so much and bless you in advance for your comments!

Cinda Crawford, your host of the Health Matters Show

What is a caregiver? Who is skilled enough to be a caregiver? Who needs a caregiver? Allow me to introduce Florence Nightingale.

Florence Nightingale was a famous woman who believed in serving others’ health needs and honoring the medical profession that she regarded so highly.

It may seem a strange principle to enunciate as the very first requirement in a hospital that it should do the sick no harm. Florence Nightingale

As a person who has experienced great, long term illness, one of which was Chronic Fatigue Syndrome, I am drawn to the legacy and person of Florence Nightingale. Not only did she dedicate her life to serving others’ medical needs, but she herself also was thought to have suffered with a similar illness, possibly even CFS itself!

Note: Keep reading to get all of today’s incredible information provided by the Health Matters Show blog post and podcast. Namely, 1) A moving, personal account of someone who has been a caregiver, 2) The Florence Nightingale Pledge, and 3) your very own “FREE” copy of “The Caregiver’s Guide”.

(Today’s podcast is 6 minutes 17 seconds.)

…there have been suggestions in recent well-regarded medical journals such as the Lancet and British Medical Journal, that historical figures such as Florence Nightingale,[2] and Charles Darwin[3] may have suffered from a similar illness. In the case of Florence Nightingale, her illness began after she returned from the Crimean War and spent years housebound, too fatigued to talk to more than one visitor at a time (Wessely et al. 1999; Shepherd, 1999; Macintyre, 1998).

In addition to two more things for you today (which you’ll find below), I am brought to tears by a Facebook friend of mine, Corina. When I asked for help in writing this blog post, she quickly stepped up and told me of her 6-year-long period of serving as her grandmother’s caregiver. Her grandmother came down with Alzheimers and needed help.

Corina stepped in and ultimately sacrificed much of her own quality of life. She was a new mother and suffered with Fibromyalgia herself. At first, Corina tried to take care of her grandmother in her apartment, but ultimately, was forced to bring her loved one home. There was no one else to be the needed caregiver. (Paraphrased)

…as a caregiver for someone with Alzheimers, it’s very difficult because you do not know what the persons wants or needs. They no longer know how to tell you. In a way, it’s harder than caring for a child. I would …constantly have to guess and investigate her feelings etc. on a minute to minute basis, making sure she actually swallowed her pills, etc.

I basically bathed her, colored her hair… did all the nail cutting, cleaning dentures and at times had to handle accidents that happened when she wasn’t even aware of what had happened to her. Basically she wore a Depends. ‘I actually cried the first time I had to change her.’ To me that felt like things were turning for the worst. It’s very difficult in my opinion to not just be a caregiver, but the bond you make (whether) it’s family or a stranger. (That’s) because these people are no longer capable of doing things for themselves and this affects them emotionally. In my own opinion it takes a lot of compassion to take care of someone else… period.

Since my family chooses not to acknowledge what I did for my grandmother, I hope someone out there will know what it was like to give up a part of yourself for someone else. Through my story, one can only hope when we get to the age or illness (when) we need care, someone like me will be around to lend a helping hand. God willing.

I feel so much empathy and compassion for this dear lady. I feel blessed to know her. So…today, my readers and followers, I am bringing you two additional items below that are designed to help you decide whether to be a caregiver or not… OR whether to enlist the services of a professional caregiver. These resources are 1) the Florence Nightingale Pledge and 2) The Caregiver’s Guide, a publication that I put together myself. Access both of them below and share at will. Let’s keep the conversation going!

1) The Florence Nightingale Pledge

This modified “Hippocratic Oath” was composed in 1893 by Mrs. Lystra E. Gretter and a Committee for the Farrand Training School for Nurses, Detroit, Michigan. It was called the Florence Nightingale Pledge as a token of esteem for the founder of modern nursing.

I solemnly pledge myself before God and in the presence of this assembly, to pass my life in purity and to practice my profession faithfully. I will abstain from whatever is deleterious and mischievous, and will not take or knowingly administer any harmful drug. I will do all in my power to maintain and elevate the standard of my profession, and will hold in confidence all personal matters committed to my keeping and all family affairs coming to my knowledge in the practice of my calling. With loyalty will I endeavor to aid the physician in his work, and devote myself to the welfare of those committed to my care.

Please, before you click on the link here for this last resource, The Caregiver’s Guide, I would appreciate it if you could leave a comment about this post now. Maybe you could talk about how your life and health have been influenced by either giving care to someone else in need (e.g. a family member, friend, or employer) or how a caregiver affected your life because you were the one in need of help, attention, and ultimately, love.

Sending you all my best today. May we all receive the help that we need “one day”… when we need it. Don’t forget to leave a comment. Thanks so much… .

Cinda Crawford
Your host of the Health Matters Show

One of the toughest symptom challenges with Fibromyalgia or Chronic Fatigue Syndrome is managing chronic pain. (It is a symptom that accompanies certain conditions.) When it comes to information or strategies for managing such chronic pain, the public at-large and the people most affected by horrible pain symptoms on a regular basis (a.k.a. the patients) are pretty much in the dark. Why? What strategies improve symptoms? What medicines help? By now, surely doctors know what works best to manage chronic pain in Fibromyalgia, Chronic Fatigue Syndrome, RSD, Lupus, Lyme disease and Ehlers Danlos Syndrome, don’t they?

It’s time that we knew. Check out the upcoming NIH Pain Consortium Symposium that will be held May 29 – 30, 2013.

The theme of this year’s symposium will be “Integrated Self-Management Strategies for Chronic Pain”. Topics will include:

• Self-Management Strategies in community health care settings
• Tailored self-management strategies for patients and caregivers, plus
• Predictors and indicators of outcomes in integrated self-management strategies.

*See specific details below, plus two important publication links and a very special offer coming up next week!

(Today’s audio podcast is 8 minutes 22 seconds.)

A poster session will include a broad selection of current pain research findings presented by young investigators. Members of the extramural scientific community, the NIH scientific community, health care providers, and the public are invited to attend. The event will be hosted by the NIH Pain Consortium Annual Symposium organizing committee.

The NIH Pain Consortium Symposium website is now open for further information, agenda and registration.

~~~~~~~~

Note: *Self*-*regulatory fatigue often* refers to the temporary depletion of individuals’ capacity for self-control often relating to pain. Questions asked include:

1. “I feel full of energy,”
2. “I find it difficult to exercise as much as I should,”
3. “I can easily keep up with my friendships and relationships.”

Given that patients with ME and CFS are not full of energy unrelated to depression, have to carefully control their activities to avoid relapses and may have difficulty sustaining relationships due to stigma or inability
to attend social gatherings – all of which are unrelated to self-regulatory behaviors – these questions may potentially cause problems with measurement and interpretation.

The study does not state how patients were diagnosed.

SOURCE: J Pain Res. 2013;6:181-8. doi: 10.2147/JPR.S40014. Epub 2013 Mar 6.

Self-regulatory fatigue in chronic multisymptom illnesses: scale development, fatigue, and self-control.

Nes LS, Ehlers SL, Whipple MO, Vincent A.

Department of Psychiatry and Psychology, Mayo Clinic, Rochester, MN, USA; Center for Shared Decision Making and Collaborative Care Research, Oslo, University Hospital, Oslo, Norway.

Abstract

BACKGROUND:

Self-regulatory capacity involves ability to regulate thoughts, emotions, and behavior. Chronic multisymptom illnesses such as fibromyalgia and chronic fatigue syndrome are accompanied by numerous challenges, and have
recently been associated with self-regulatory fatigue (SRF). Chronic multisymptom illnesses are also frequently associated with physical fatigue, and through development of a scale measuring SRF, the current study aimed to examine how SRF can be distinguished from physical fatigue. The study also sought to distinguish SRF from self-control.

METHODS:

Two self-regulation researchers developed 30 items related to self-regulatory capacity. These items were distributed to patients (n = 296) diagnosed with chronic multisymptom illness together with validated
measures of physical fatigue and self-control. A principal factor analysis was employed to examine factor structures, identify inter-item relationships, and aid in scale development.

RESULTS:

The final proposed scale consisted of 18 items measuring self-regulatory capacity (SRF-18) with cognitive, emotional, and behavioral SRF components. Internal consistency and reliability was acceptable (Cronbach’s á = 0.81). The final scale was moderately correlated with self-control (r = -0.48) and highly correlated with physical fatigue (r = 0.75), although more so with emotional (r = 0.72) and mental (r = 0.65) than physical (r = 0.46) fatigue components.

CONCLUSION:

The current study suggests a new scale for measurement of SRF in chronic multisymptom illness. Although cross-validation studies are necessary, such a scale may contribute to a better understanding of the concept of
self-regulation and the role of SRF in chronic illness. Although related to physical fatigue and self-control, the results point to SRF as a distinct construct.
~~~~

Next week I’m preparing a special gift for you, The Caregiver’s Guide. I hope you will check back in to get your own copy and possibly share the info with a friend who suffers with any type of chronic health issues, ones that leave them incapacitated and in need of another person’s help to manage their life and daily needs. Let’s be frank, folks. Any one of us can need a caregiver in the future! The thing to do is be prepared.

Plus, whether you’re the one suffering in chronic pain or with any symptoms that incapacitate you…OR you’re the person offering support, such a guide may help you see the other person’s side of this complicated issue.

Even the best of saints have breaking points and chronic pain has brought many such a person to their knees and kept them there!

Thanks, Cinda Crawford
Your host of the Health Matters Show

Hi folks,

The Health Matters Show is changing, but I only have a small piece of the puzzle in place so far. The process will eventually include an entire revamping of most everything. Stay tuned…more is to come. For now, expect to find blog posts for the “Health Matters Show blog and podcast” coming out at 2:00 PM East Coast time on Fridays. That’s a better time of day for people in the US who have tough mornings and for other folks who will be getting off work soon to begin their weekend. For others in different time zones, the blog and podcast are available, too.

I want to make this service the best it can be for you, the people who need it. I also want to feel as if my effort really pay off for me and the audience who so graciously follows me. Please let me know anything you think I “should change” and how (if you have a hunch)… and anything you’d like me to “add” to what I do. Yes, feel free to send that along, also. All options are on the table.

(Think song lyrics…)
The times they are a-changing,
Cinda Crawford, your host

If your doctor has the new Somatic Symptom Disorder information and doesn’t know what is wrong with you, there’s a possibility that you could be mislabeled and misdiagnosed as mentally ill- in error. Yes, such is the new horrible situation for you and thousands more like you that you could be classed as having a mental illness when that is not what’s wrong at all!

According to the British Medical Journal 2013, the revised listing for Somatic Symptom Disorder according to new DSM-5 guidelines surely will mean that we can expect more confusion than ever between diagnoses of physical and mental symptoms. And surely there was enough already for people with symptoms of Fibromyalgia and Chronic Fatigue Syndrome!

How many times have you heard people say 1) “it’s all in your head“? How many times have people 2) looked at you funny, 3) discounted your memory recall of an event or 4) your opinion because they no longer have faith in you? How many times have you been 5) accused of sounding “out of this world” or crazy? More times than these five examples for sure. Situations like this occur when our family, friends, co-workers or medical doctors don’t know enough about our physical illnesses to understand what we’re going through. They don’t see that there are physical causes in making you appear to be mentally ill.

I urge you to take the time today to read up on this important topic (below) and then leave your own comment. I shudder to think how easily details about Somatic Symptom Disorder cold blow up in our lives and cause a national (if not, international) disaster!

This new condition (a.k.a. Somatic Symptom Disorder) suggested in the bible of mental health diagnoses lacks specificity, says Allen Frances.

(Today’s audio podcast is 5 minutes 38 seconds. Don’t miss it!)

The fuzzy boundary between psychiatry and general medicine is about to experience a seismic shift. The next edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) is scheduled for release this May amid controversy about many of its new disorders. Among these, DSM-5 introduces a poorly tested diagnosis—somatic symptom disorder—which risks mislabeling a sizeable proportion of the population as mentally ill.

The relation between psychiatry and the rest of medicine has been difficult to manage both for mental health practitioners and for primary care doctors, and this is even more problematic for patients caught in-between.

The boundary has never been clear cut or static but has shifted back and forth depending on new findings and fashions. The realm of psychiatry would shrink, and that of medicine would expand, whenever advancing science discovered a cause for a previously poorly understood presentation. The classic example of this is “general paresis of the insane,” which went from psychiatry to neurology as soon as the spirochete was identified as the causal agent.

To me, this last paragraph should speak to the people who thought Lyme disease patients were crazy. Have a spirochete anyone? If history is a precursor to the future, it will be painfully long before we learn what we need to know about Somatic Symptom Disorder. Until then, we have to be prepared and ready to dispute false notions such as…it’s all in your head.

Thanks so much, Cinda Crawford
Health Matters Show

What are the causes of chronic fatigue? They can be many, some subtle, some not. Some are so obvious you wonder why you didn’t consider them in the first place. The more elusive causes of chronic fatigue are ones that you may need help to remember and then overcome and conquer.

Today, let’s first compare the subtle and fairly obvious prompts for chronic fatigue by defining the term. (Later in the post, we’ll investigate many of the unobvious reasons…ones that you may not have considered, but with a little work, could experience great change and more energy!)

Simply stated, chronic fatigue is when the overwhelming symptom of fatigue becomes a chronic body condition. In other words, much of the time, you’re chronically tired, pooped and downright exhausted!

I know this sounds common and in many ways, it is. “Chronic fatigue” is the number one reason why people schedule a doctor visit. *Hang on and check out what is to come. There’s more below and even more in the audio podcast itself. Be sure to listen because it includes facts and figures that you won’t find on the blog.

(Today’s audio podcast is 22 minutes and 21 seconds. Enjoy!)

Theirs is a problem of being chronically tired and thinking something may be medically wrong with them to “cause” such a state. It’s important to remember that this occurrence isn’t the very same thing as suffering with the illness =>Chronic Fatigue Syndrome. (*To be declared and considered to have Chronic Fatigue Syndrome, it takes a medical diagnosis. If you’re curious to learn more, see the page for this topic on this website entitled, “CFS Info”.)

So what causes a person like you to feel chronically tired and fatigued so much of the time? The reasons might be that you:

• Are not getting enough good quality sleep on a regular basis. How much energy do you have if you’re sleep deprived?

Are there other elements intruding on your sleep such as a too cold or too hot room? Sleeping during the day while your family is making noise?

• Are not eating a balanced diet, one that gives your body enough raw materials to manufacture the required energy it needs to function.

Think adequate protein and carbohydrates such as cheese, almonds, green vegetables, raw fruits.

• Are not drinking enough water.

The majority of the human body is water. It takes thought and effort to drink enough water to supply what the body needs. GOAL: to be healthy, hydrated and have an adequate supply of energy. Recent information says that water is now more popular than soft drinks. Wow-ee!

• Are allowing (e.g. having) too much stress in your life. Stress is a huge thief of energy!! Absolutely, amazingly, HUGE! We health pundits may be winning.

If we take the time to decompress with activities such as meditation, mindfulness, getting a massage, getting some daily exercise, prayer and being with the ones we love in a calm environment, we all will be a lot better off and suffer with less stress.

• Are working at an unfulfilling job -or- under the watchful eye of a boss who does not appreciate you and expects you to do the impossible.

This could also include worrying about whether you’re going to lose this “fantastic” job. In today’s economy, few people can afford to simply quit their job without the act severely affecting their budget’s bottom line. However, long term, if you’re not happy in the work you do, staying in it can be harmful to your health, too.

Perhaps the better alternative is to get yourself (e.g. career skills, etc.) into a better situation. You could add to your skills to make you a valuable employee to some other business. You could even consider going into business for yourself. Being self-employed is not unstressful by any means, but it is a different kind of stress. It can provide it’s own great rewards to your ideas and creations come full circle.

• And finally, there may be a medical cause for your chronic fatigue, such as an under-performing thyroid gland or an unbalanced HPS axis (hypothalamus, pituitary, adrenal axis) with crazy swings in the body’s cortisol level. These problems can accompany other illnesses, such as full blown Chronic Fatigue Syndrome, hypothyroid, panic disorder, etc.

Thanks you so much for joining me today. As you work your way through the causes of chronic fatigue, remember that what you decide to allow in your life could be the key to solving the problem. Throw out the bums and nurture the good guys! Plus, be sure to let your friends know the info you found here at the Health Matters Show. See the social networking buttons below.

Cinda Crawford, your host