A Personal Account Of M.E/Chronic Fatigue Syndrome

A New Discovery

2013-07-09T07:33:00.002-07:00

BetterYou Vitamin B12 Boost

I was reading a magazine recently and this product caught my eye! It's a Vitamin B12 supplement in the form of a spray, which provides a high dosage of Vitamin B12, Chromium and Green Tea Extract when sprayed under the tongue.

Vitamin B12 plays a key role in the normal functioning of the brain and nervous system, as well as energy. Even health people need Vitamin B12 t function properly, but if you have a neurological illness such as M.E, with one of the significant symptoms being overwhelming fatigue, it is even more important.

The information on the website reads:-

B12 has been proven to help reduce tiredness and fatigue as well as aiding concentration and memory. Boost B12 Oral Spray delivers 1200ug of this vital vitamin along with 40ug of chromium and 16mg of green tea extract with every dose (4 sprays).

The combination is delivered orally under the tongue, quickly entering the bloodstream for the ultimate in bio-availability and convenience. Delivering 1,200mcg of vitamin B12 per dose the bottle lasts an impressive 40 days. Ideal for those with an active lifestyle, if you're feeling increasingly tired or for those who travel.

Having recently relapsed, I have been looking further for supplements which might make my day just that little bit more bearable. So I purchased one of these, I have now been using it for a few days and I do feel it has had an effect. Four sprays under the tongue in the morning, and this gives you 48,000% Recommended Daily Allowance of B12, 100% Chromium and 0.5mg of Green Tea. I have already spoken about Green tea in another post, and how much it has helped me since I have been drinking it on a regular basis.

Chromium plays a part in the release of energy, supporting carbohydrate, fat and protein metabolism, and helps maintain healthy blood sugar levels. With hypoglycaemia being suspected in many M.E patients, this appears to be a sensible supplement to take.

I feel this spray would be a great supplement for not only M.E-ers, but I healthy people too who perhaps are feeling a bit burnt out due to lifestyle factors. It has a sweet apricot taste, which is nice as I was expecting it to be bitter, but it tastes fine. I am very happy with it so far, although it is not a miracle cure for fatigue, and by no means is the fatigue less debilitating, but I feel it takes the edge of it slightly. When you have persistent fatigue day-in, day-out, the smallest relief is like a godsend! I would definitely recommend this spray, it can be found online as well as in Holland & Barrett.

BetterYou, who make the spray, have a range of supplements including these sprays with other vitamins - and I will definitely be trying some more!

Green Tea & ME/CFS

2013-02-08T06:56:00.000-08:00

Since becoming unwell i have been on the constant look out for anything which may benefit me health wise, including supplements and vitamins.

My sister is a health freak, and always going on about how beneficial green tea is, whether you are a healthy person or not. I had tried it before but unfortunately it made me very nauseous, but perhaps that was drinking it on an empty stomach!

It isn't the nicest tasting tea, but since i have become unwell i have gone from a coffee freak.. to a green tea freak! If you suffer from the condition yourself you may well know that although caffeine helps perk you up, the 'comedown' off it leaves a lot to be desired! I find i feel great when i have a cup of coffee, but now when it wears off, it makes my crashes a lot more difficult to handle.

Green tea contains natural antioxidants and there is compelling evidence that it may help reduce the risk of heart disease, cancers and Alzheimers. It is loaded with polyphenols and flavanoids, which studies suggest seek out cell damaging free radicals and destroy them.

So where does this help with CFS/ME patients? Green tea helps indigestion (IBS is very common in patients suffering from the condition), boosts the immune system, helps brain function and prevents fatigue - all of which are relevant to the diagnosis.

Since drinking it, it has had a noticeable effect on my levels of energy throughout the day. It also seems to suppress my hunger which is great when i am trying to lose weight. As with most ME patients, exercise is a no-go, so anything that helps here is a must in my book! I drink mine with a little milk, and i find this stops the nausea, this may just be something that i experience, as i used to get this before becoming ill.

I have now discovered a new product called Tetley Blend of Both, and it is PERFECT! It is a blend of green, and standard black tea - it tastes and looks just like normal tea, and you add milk to it as normal, but it has all of the benefits of green tea! I am now addicted to the stuff, and can honestly not tell the difference. I would definitely recommend trying green tea in some form, and i hope it benefits you as it does me!

My personal experience of claiming for DLA

2012-11-19T06:57:00.002-08:00

I applied for DLA (Disability Living Allowance) back in March, and after a long winded road of fighting for it i have finally been awarded it. Here i tell you my experiences of claiming it, and my tips from application stage through to tribunal, but hopefully if you have decided to claim for it, with the right knowledge you won't have to go through that!

Initial Application Stage

Okay, so as you know i was diagnosed with M.E last May, and i had to leave my job on medical grounds in July. The next few months were an uphill struggle, and by March this year my health has progressed far enough for me having to have someone round every day to assist me with my daily living activities.

It became clear that i was entitled to DLA, which is a non means tested benefit payable to cover the extra costs of living that arise from your illness or disability. For example, the mobility allowance covers the cost of running a car, parking and petrol if you are unable to walk far. The care element covers the cost of someone caring for you, however you do NOT need to be receiving the care to qualify, i, however, was anyway.

So i sent off my application form, at this stage i wasn't aware of how tough they are, and did not get any advice on filling it out, nevertheless after showing the form to my support worker from Dorset ME Support group i was told i had filled it out very well. I soon received a letter to say i had been rejected, as i 'did not meet the criteria'. Their statement of reasons completely contradicted what i had stated in my application, it was almost as if it was about a different person.

So of course i got the wheels in motion to appeal the decision. At this stage i had support from my support worker, who went through my papers with me and sent off the appeal form on my behalf. At the same time i requested a copy of my GP's report. After some questionable comments from him during my visits for medication i had a feeling that this was something to do with it. Lo and behold - it was! When he received the form, he did not contact me to ask me any of the questions about my daily living etc, and based his response purely on the fact i 'seemed okay' when i went into the surgery. I am sure we all know that with ME we can easily 'seem okay' - if only they could experience a fraction of how we feel on a daily basis i think they would soon think otherwise!

So following a complaint to the practice manager i moved surgeries. It was clear this GP has little knowledge or understanding of the condition, and was actually quite rude at times. After putting up with it for a while i decided that i deserved better. My new GP is lovely, and so understanding - it just goes to show how much ignorance there still is of the disease. I now had even more determination to prove how unwell i was, how dare they disbelieve me????

Preparing for appeal

After sending off my appeal forms the wheels were in motion, and i set about preparing for my appeal/tribunal. I was aware that the process could take months, however whenever i felt well enough i researched it from top to bottom so that when they day come, i was prepared for what i was going to be asked, and how i wanted to explain how the illness affects me to someone who had little, or perhaps no knowledge of it.

I found some brilliant websites, which i will list at the end of this post. I soon discovered that i was far from being the only one who was going through the same, it seems far too common these days in this current climate!!

I prepared paperwork in my file, which consisted of:

Initial diagnosis letter from my consultant at Wareham ME Clinic
Letter from my occupational therapist briefly outlining my difficulties with pain, fatigue and cognitive functions, and how these affected my daily life, plus the added impact of post-exertional malaise.
A diary of a typical day for me, focusing on the help i needed or the difficulties i came across. (For me it was, burning toast under the grill / unable to wash my hair as i was too tired / being reminded to take my medication etc)
I also prepared for myself some notes on how i would explain my illness, and the keys points that i felt entitled me to DLA. For me these were things like, i have very little energy and ever thing i do, takes away another chunk of it, and makes me feel worse. And once that energy is gone and i crash, there is no going back and i am good for nothing. I noted down how i have to choose between tasks, as i do not have the stamina to do them all, and how i cannot sustain anything. These are very key points i believe for explaining an illness like M.E. I noted how i would be completely housebound without having my car, and that it was a lifeline to me.

As you can see i took a lot of time to research and prepare, i think the more info you have the better. All i had to do now was wait for my tribunal date!

Tribunal Day

Well after a long and stressful wait, i had a date for my tribunal. Although i felt fully prepared, from the masses of research i had done, i was understandably nervous. My support worker met me there at the magistrates courts and i was shaking like a leaf!! We were called in and were met by a panel of three people all sat at a desk opposite. All i could think was that it was like being on X Factor, but much scarier!!!!

The panel consisted of a judge (Usually an acting or retired solicitor) who takes the view from a point of law. A GP who focuses on the medical side of things, usually the mobility, and someone who is experienced in caring for disabled people, who focuses on your care n needs.

I was told how the hearing would work, and all of the formal bits and pieces. Firstly, the GP asked me questions about my mobility. This included how far i could walk 'before experiencing significant pain, fatigue or discomfort. With DLA you can only qualify for being physically unable to walk, but if you are also 'virtually' unable to walk. The decision on whether you are virtually unable to walk takes into consideration your walking distance, walking speed, walking manner and the time it takes you to recover from walking that distance. I explained that on a bad day, i would be unable to leave the house, and some days confined to bed if the fatigue or pain is particularly bad. I explained the variation of my condition, and the fact that you can do anything 'once' - including jumping off a cliff!! I detailed how even when on a good day when i am able to do more, i will usually pay for it the day after and this is then a knock on effect. I explained that my mobility problems arise from pain, fatigue, breathlessness and muscle weakness.

The hearing then moved on to my care needs, and the lady who was experienced in this then asked me questions about my day to day living. This included, housework, shopping, cooking, and personal care such as washing and dressing. I explained that usually my friend who cares for me gets my shopping, or i order online. The 'cooking test' focuses on whether you would be unable to prepare and cook a meal from scratch, this consist of a pork chop and a potato. This includes the peeling and chopping. I explained that i tend to crash badly in the evenings, and that it is rare that i feel well enough at the end of the day to cook, and if i do then it is a ready meal. I explained that on the rare occasion i have cooked a meal, my friend helps me with all of the things like peeling and chopping and i do 'the easy parts'!! I also made sure i gave examples of previous accidents in the kitchen, like near misses with knives and forgetting about something under the grill and not realising until the smoke alarm went off. I advised that the pain and fatigue impacts on these kinds of things, and that i had very limited concentration, and poor cognitive function.

She also asked about washing and dressing. I advised that i am able to dress myself, but if i am experiencing a particularly dreadful day symptom wise then i would stay in my night clothes. The same with taking a bath or washing my hair, if i am too tired or in pain then it simply won't get done. There is no question of 'trying' - i know when i feel like that anything else i do is just going to make me feel worse. I also gave examples of how i regularly forget to take my medication, and need reminding. This can cause big problems if i forget my anti-depressant, which has happened too often.

So after being grilled for around an hour i was told they had all they needed, and was told to leave the room. At this point i burst into tears, as it was so in depth, and i found it quite demoralising going into the ins and outs and the nasty parts of my illness. I was told by my support worker that i couldn't have done any better. I was convinced by this point that i had failed, as the panel were very stern and it almost feels like they are cross examining you. By this point i had crashed, and was completely frazzled, and absolutely exhausted, so i was actually past caring!!

I was called back in, and i was told that i had been awarded Higher rate mobility and lower rate care for 18 months!!! The mobility element was because they classed me as 'virtually unable to walk' and the care was because i needed help for a significant portion of the day, and i need encouragement with some things.

Well as you can imagine i was over the moon, but it took a while to sink in as my head was like mush by that point, and my brain had given up. I received by backpay within around 2 weeks, which was pretty quick judging by some stories online, and my first 4-weekly payment is just before Xmas.

It was a long, hard and extremely stressful process, but i got there in the end, and was prepared to fight as long as my body would let me to prove that i was ill. I do believe my GP's report was the spanner in the works, and i really would advise if you are going to apply, to contact your GP and ask them to contact you when they get the form so you can complete it together. It depends on how supportive your GP is, but the judge made it clear that if i havent improved or have (god forbid) got worse then solid medical evidence should ensure i don't need to go through this again.

I hope that this has been useful to anyone applying or thinking of applying, if you would like any advice then i am more than happy to help. I have included links to some really good websites regarding DLA which helped me.

Fight on.... Do not let them win!!!!!!!!!!!!

http://www.benefitsandwork.co.uk/
This is a fantastic website which provides info on DLA and ESA. It is by subscription, but well worth it and they also send free tips by email, so well worth having a look.

http://forum.chronicfatiguesyndrome.me.uk/
This forum is a must have for any ME sufferer. It has sections on all aspects of the illness, and some really good benefits advice categories. It has lots of posts regarding DLA and gave me some valuable info.

2012-10-25T06:11:00.003-07:00

ThePrizeFinder - UK Competitions

2012-10-25T06:09:00.001-07:00

Competition Time <3

Starting from 26th October, we have a new competition running to win a Redken Colour Extend Sun Mousse worth £16.50!

Enter by following the blog and commenting on the competition post, using the Rafflecopter below,to let me know you have done so. Winner will be chosen at random on or after 01/12/2012.

Good luck! x

a Rafflecopter giveaway

My personal experience of the ESA ATOS Medical

2012-08-26T10:25:00.000-07:00

I had my ESA medical recently and thought i would share my experience of it with those of you who may have one coming up. I had it in Bournemouth and was seen by a male doctor. I had my benefits advisor with me from an M.E support group.

The assessment started with factual info, questions such as:
What is your condition(s)?
How long have you been unwell for?
What was your last job and when/why did you leave?
What medications are you on - and any side effects?
What kind of house do you live in, what floor and is there a lift?

Then it moved on to your daily life -
How do you get on with cooking meals?
How do you get on in the bathroom?
How well do you sleep at night?
Do you go shopping? If so do you go on your own?
Do you drive and how often, and when was the last time?
How well do you move about the house?
What do you do during the day?
Do you watch tv/read/use facebook/internet?

It wasn't as bad as i thought it would be. You can tell that they try and 'catch you out' by repeating questions, and you really must clarify things - for example he asked if u use the internet, i said "When i feel well enough, and only for a little while at a time" or, he asjed if i watch television - I told him that i don't really watch tv for it exhausts me, but i do like eastenders, although i record it and watch it when i feel well enough, and if i feel particularly unwell i can sometimes watch it in chunks.

My advice would be that whatever you say, clarify it as they can make assumptions from what you say. So stress the unpredictable nature of the illness and the variability, as well as the fact that whilst you can do some things, you wouldnt be able to do them repeatedly and reliably.

I do feel it went well, but then i have read stories on here of people feeling it went well and then finding out they have been assessed as fit to work. So don't let your guard down, as i think they can appear nice but this may be a shield. I had 5 letters from my consultant/occupational therapist, so as much medical evidence as you can is good. I also wrote a diary over 4 days, with bullet points, so they can see the troubles i have day to day. I also wrote a long list of my symptoms, as i knew i'd forget otherwise - and i've submitted both to send across to the decision maker. I think the more evidence the better.

The physical examination - i could do everything, but only slowly and i made sure that i said if my muscles were tight or it hurt. He didn't seem to be too interested in that but i feel it's best to always clarify and dont give them anything they can make foolish assumptions on.

And two weeks later, i got a letter saying i had passed and was in the work related activity group. Whilst i feel i qualified for the support group, the amount of people who get put into this is few and far between, and i feel it was a very positive result, especially in this current climate of benefits.

A great forum for M.E sufferers

2012-08-26T10:09:00.000-07:00

Since becoming unwell i have been a member of an M.E forum that i stumbled upon one day. Having seen a few i really must say that this is the best i have come across!

It has a lot of useful information on the main site, and the forum itself has loads of categories you can discuss different aspects of M.E in, including symptoms, funny stories and employment and benefit advice. I have found it very helpful many times, and would definitely recommend it if you have been diagnosed with this illness, or even if you are a friend or family member of a sufferer wanting to find out more.

http://forum.chronicfatiguesyndrome.me.uk/

The Prize Finder

2012-08-12T12:48:00.001-07:00

ThePrizeFinder - UK Competitions

Competition time

2012-08-12T12:46:00.001-07:00

Following the success of our MAC Dazzleglass competition we now have another giveaway! To enter simply follow the blog and leave me a comment to confirm you have done so!

Win A Baylis & Harding Gift Set!

2012-08-12T12:44:00.001-07:00

a Rafflecopter giveaway

MAC Dazzleglass Competition

2012-08-05T16:14:00.001-07:00

Unfortunately the original winner of the MAC Lipglass did not come forward in time, so congratulations to our new winner Lorna!

2012-07-27T05:02:00.002-07:00

Congratulations to Donna who won the MAC Dazzleglass Lipgloss! For those of you who didn't win don't forget to come back to the blog for future rafflecopter competitions!

2012-06-29T07:59:00.002-07:00

<a href="http://www.theprizefinder.com" title="ThePrizeFinder.com - home of competitions and prize winning" target="_blank">ThePrizeFinder - UK Competitions</a>

MAC Dazzleglass Competition!

2012-06-29T07:51:00.000-07:00

We all like little treats in life, and this month i am giving away a MAC Dazzleglass lipgloss worth £16!

To enter please complete the rafflecopter below, you must follow my blog and can earn extra entries by liking the blog or tweeting about the giveaway!

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How Do You Explain Chronic Fatigue Syndrome?

2011-08-02T06:06:00.000-07:00

Explaining chronic fatigue syndrome to the people in our lives can be difficult. Get some ideas here for explaining chronic fatigue syndrome better from sufferers around the world.

It's foggy and muddy in here

I have FM/CFS for 11 years.It feels like walking in mud,dragging a ball and chain in the fog.its so hard to work up to anything.It's hard to talk and exhausting to have to repeat anything.God how hard that is!Just let me sleep-night is the enemy.Nobody gets it.I look fine-why do i make everything seem so difficult??cause it is(for me).Just look at me and understand.Stop asking how i am.it doesnt change and it makes me feel as weak and embarrased to say i feel like crap yet again.Your worst day is my best day.don't you get it?AAAAHHHHH

Out With the Bathwater!

It first hit me in 1992 after a very stressful house relocation,and I thought it was just exhaustion.After a week,blood tests showed Epstein Barr and I had 3 months in bed sleeping most of the time.Family couldn't understand and my daughter,aged 21,thought I had somethig contagious,and wouldn't come into the room.Very hurtful! I felt like someone had pulled out the plug while I was standing in the bath and my energy had gone with it. I have had one major relapse,2002,after a flu,but when I feel cold sores developing,and generally feeling run down,I know to start taking a tonic high in Echinacea and vit C.That helps,but it usually means a few days in bed.Like others,I hesitate to pre-book outings as I have had to cancel so many times over the years. Be kind to yourselves,and laugh a lot,it helps.

How I feel about ME

When I smile I feel a hole, a heaviness inside, a place where I am empty, a feeling I cannot hide, I try to smother this sadness, with friendliness and smiles, I fill my heart with gladness, yet secretly all the while, you coil tightly around my heart, I feel your weighty chains, you try to tear me apart, but I will not play your game, so I carry on with smiles, and laughter too and hope, that one day you will loosen, and let me free to cope.

Every chore is like doing a marathon

I've had CFS/ME since 2003 and usually explain the symptoms to friends and family as a "never-ending flu". However, after doing stress exercise testing at the Pacific Fatigue Lab in Stockton California I have discovered a new way to explain it. The testing shows that Post-exertional malaise is so bad that the day after the maximum exercise test day #1 it looks like I had run a marathon, not exercised for 15 minutes. It shows that I don't even produce enough energy per day that is required (on average) to take a shower. That seems to be a good way for others to relate the CFS symptoms to their own lives.

flu bug

At the beginning, the first couple of years was just like that, like having a really really bad flu, and just so weak, dizzy, achy, my brain hurt, eyes always wanted to shut. Now that just happens sometimes, although excitement over things that ask for energy are still low.

Exactly or Ditto

Adrienne - It feels as if you have ESP and have read my thoughts. Everything you have said I have felt. Sometimes even the little things seem so hard to do. One problem I also have is that when I am feeling good (which isn't often enough) I over do things and then I feel like I have been run over by a steam roller. Sometimes it even seems hard to take a deep breath. I had Glandular Fever about 15 years ago and life hasn't been the same since. I would love to hear from anyone who has a similar story. I am so sick and tired of myself being sick and tired. I'm at my wit's end. If I was told I had a fatal disease and had only 6 months to live, it would be a blessing. Everyone take care, Mary-Anne

Like being under anesthesia

My life has not been the same for the last 12 years since I was diagnosed with fibromyalgia and Chronic Fatigue. I feel like someone has injected me with anesthesia and I am about to have surgery. You know when they say count from 10,9 8 etc.... and you feel like you are falling into a deep sleep. That is how I feel all of the time. What a horrible way to live. I hope and pray that someone finds help .

Explaining CFS

I am a veteran when it comes to having CFS acquiring this in 1984 at age 44. I am in the majority as Dr. Paul Cheney once explained to our support group. We get sick and then we keep acquiring all these wierd symptoms. To describe it would be to say it was like a combo of sleep deprivation, flu, hangover, and jetlag all rolled into one. Then, as we age (I am soon to be 70), we acquire new issues and its difficult to separate CFS from aging. To describe in more detail would take more space than what is allotted here.

F.A.Q's by Non Sufferers

2011-08-02T05:56:00.000-07:00

It is very difficult to understand any illness unless you have experienced it yourself, that is why i have researched and compiled a list of 'F.A.Qs' often asked by non sufferers. Hope it is helpful!

What kind of symptoms do people with ME/CFS have, aren’t they just tired?

Cognitive dysfunction, including impaired memory or concentration , post-exertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercis, unrefreshing sleep, joint pain (without redness or swelling), persistent muscle pain , headaches of a new type or severity, tender cervical or axillary lymph nodes, sore throat (and many more) Telling a person you are tired too is the ultimate insult to someone with ME/CFS.

Do people ME/CFS recover?

The disease can be managed, but no cure exists. People with ME/CFS often live in isolation in part because their activity levels do not allow them to leave the house, work, or even get out of bed depending on the severity of their condition. However, isolation also serves as a way to avoid viruses due to an already compromised immune system.

But I’ve seen people with ME/CFS and they look okay? How can that be possible?

People with ME/CFS endeavour to take part in what activities they can. Unlike people who suffer from depression, they have not lost any interest in hobbies, activities or life. In fact, not being able to participate in these things causes patients with ME/CFS an enormous amount of grief. What you see is a person with ME/CFS having a good day. What you will not see is the price they will pay later for that “good day”. People with ME/CFS can become sicker if they do too much. This costs them jobs, friends, and support.

You just said that the only drug for ME/CFS was also for AIDS and Cancer, how can that be possible?

ME/CFS is not chronic fatigue. Chronic Fatigue is feeling tired, as a symptom. ME/CFS is a serious neuroimmune disease without a known cause. ME/CFS patients have been compared to Cancer and AIDS patients in their last two months of life.

Can I catch ME/CFS?

You will not catch ME/CFS from someone by talking to them. However, it has been transmitted by blood transfusion, and there have been outbreaks of it in communities in the past. At this point in time, there have been 5 genes associated with ME/CFS, and most people who have it caught it after having any virus such as chicken pox, mononucleosis, the flu, strep throat et cetera. ME/CFS patients are asked not to donate their organs or blood because of potential undiscovered agents in their blood.

But what if I have a friend with the disease, what can I do for them?

Ask them how they are. Ask them how they are coping. Ask how you can support them. Many patients are living isolated lives. It is painful for them to see so many people do what they cannot do. Many patients cannot use the phone or listen to music because noise and light drains them of energy. They cannot make appointments because they do not know if they will be awake, or strong enough to go. So understand when they cannot see you

Do people die from ME/CFS?

Yes, the most famous case is Sophia Mirza who died at age 32. She was sectioned in the UK because she would not get better, and her subsequent “psychiatric treatment” led to her death. When her body was autopsied, nothing was found, but in an independent medical examination inflammation was found in spinal root ganglia. It was reported around the world that she died of M.E. However, her death certificate read “CFS” because the pathologists who agreed what the disease was argued about the name and CFS was the “modern term”. People with ME/CFS have a lower life expectancy than the normal population and are more likely to die from cancer, heart disease, organ failure and suicide (due to lack of support).

Advice For Friends, Family and Carers Of An Individual Suffering From M.E/Chronic Fatigue Syndrome

2011-07-24T09:56:00.000-07:00

If you are a parent, carer, friend or relative of an M.E sufferer, it can be very tough, especially if you do not know a lot about the disease. This guide i have put together will help you understand the basics, from typical symptoms to advice on how to help the individual as much as possible.

What is CFS/ME?

CFS/ME is a long-term illness with a broad range of symptoms. The prominent symptom for most people is feeling extremely tired (fatigue)and generally unwell (malaise) after minimal effort, which can make it hard to do everyday tasks and activities.

People with CFS/ME can also have headaches, sleep problems, muscle pain and problems concentrating. The pattern of a person’s symptoms, and their severity, can vary from day to day, or even in the same day. Some people have relatively mild symptoms, while others have a serious illness that severely affects their everyday livesand their families. The illness may last a long time.

People with ‘mild’ CFS/ME are generally able to carry on everyday activities, such as their work or education, or housework, but with difficulty. To achieve this, they may have given up hobbies and social activities and need to rest in their spare time.

People with ‘moderate’ CFS/ME can’t move around easily and have problems continuing normal levels of daily activities. They have usually had to give up their work or education, may need to sleep in the afternoon and rest frequently between activities, and have problems sleeping at night.

People with ‘severe’ CFS/ME are only able to do very basic daily tasks such as cleaning their teeth, or may need help even with these. They may be housebound or even bedbound most or all of the time and need a wheelchair to get around. They have problems with learning, memory and concentrating, and are usually very sensitive to noise and light. It may take them a long time to recover from an activity involving extra effort, such as leaving the house or talking for too long.

Symptoms of CFS/ME

The symptoms of CFS/ME are similar to the symptoms of some other illnesses, and to find out what is wrong (make a diagnosis), your doctor will need to do some tests. There is no specific test that can identify CFS/ME, so the diagnosis has to be based on ruling out other conditions that could be causing your symptoms.
Your doctor should consider CFS/ME if you have disabling tiredness (fatigue) that is new or started suddenly, lasts a long time or keeps coming back and cannot be explained by other causes. CFS/ME should be considered if the fatigue means you can’t do the things you used to, if it gets worse after activity or gentle exercise such as a short walk, and if you also have some of the following symptoms:
• sleep problems
• pain in the muscles or joints
• headaches
• sore throat or sore glands that aren’t swollen
• problems thinking, remembering, concentrating or planning
• flu-like symptoms
• feeling dizzy or sick or having palpitations (irregular or fast heartbeats),
• exercising or concentrating on something makes your symptoms worse.

How Can I Help Someone With M.E?

Emotions are harder to control with ME/CFS. People may cry more easily or alternatively they can find laughing exhausting causing brain fog. Heightened emotions may be a sign that a person has exceeded their activity limit.

Household tasks and roles may need to be redistributed. Financial adjustments can be overwhelming. Only a few people with ME/CFS are able to continue working full-time. A parent of a young person with ME/CFS will need to change work arrangements to be at home.

Having less energy means reducing time with others and for most will mean a reduction of 50% or more. Face-to-face contact may need to change to email or telephone. Social outings will need to reduce. Large gatherings may be exhausting. Sensitivity to light, noise and chemicals will lead to further restrictions.

Any stress such as dental work, infections, financial pressures or relationship issues can cause a heightened response.

10 Things I Hate About Living With M.E/Chronic Fatigue Syndrome

2011-06-27T09:50:00.000-07:00

Being a sufferer myself i now understand how hard it is to live with M.E/Chronic Fatigue syndrome. It is one of those illnesses that you really will never understand unless you have experienced it yourself. I thought i would share with you my 10 Top hates about living with CFS/M.E! Some funny, some frustrating.. And not in any particular order. I am sure you have your own so feel free to add them!

1. Tasks that were miniscule before i was ill are now a huge effort. Never did i think that walking down the road or holding a ten minute conversation would exhaust me so much, now i understand that it can and have to keep reminding myself that what used to be a harmless daily task could now be enough to mess me up for hours/days!

2. Even the smallest noises can frustrate me to the point of tears.. If someone had said to me before i was ill that the television being a little too loud, or someone speaking a little too loud or dropping a heavy item could make me feel as though i wanted to cry i would have laughed my head off! Unfortunately that is the case! My ears are now so sensitive to loud or unexpected noises and it seems everything is ten times louder than it actually is.

3. Most painkillers do not relieve the tension headaches/migraines. I have always been one of those people that if i have a headache or a bodily pain i reach for the painkillers, quite simply because they work and provide fast relief. This is now not the case! The awful migraine type headaches i experience on a daily basis are rarely relieved by even the strongest painkillers.. Paracetamol.. Co-codamol.. Ibruprofen.. Even those special tension headache tablets.. They will either provide mild relief or work for an hour and then the headache comes back!

4. A lot of people do not understand how exhausted i am. I have always been a sociable person and before i got really ill i enjoyed going out with my friends and socialising.. However now i often have to decline offers of social events and even 'catch-up's for i just don't have the energy to do this. Even a two hour 'catch up' could make me even worse. But what is more frustrating is the amount of people who just don't seem to understand how ill you are.. "Oh it's only two hours" or "Have an early night and you'll be fine".. What people need to understand more about M.E sufferers is that no amount of sleep or rest is going to magically make us better for a day, and pushing ourselves too far could end up making us worse in the long run.

5. Having to explain to people what M.E or Chronic Fatigue Syndrome is. The few people who i have told about being ill, most of them say straight away 'What's that?!' and having to explain over and over again what it is. I appreciate it is not their fault that they don't know what it is but M.E/CFS is a disease that is as debilitating as most other serious medical conditions in the world, and the fact is that people can, and have died from it. More awareness needs to be raised on this matter!

6. People saying "You look well".. It may be a compliment but the fact is that most M.E/CFS sufferers do 'look well' - however inside they are profoundly ill and you just think 'If only you knew how i FEEL'!

7. Fuzzy/groggy head moments.. These can be ever so frustrating, but also rather funny at times too. Like the time i went to pour the kettle onto my dinner, or brush my teeth with the toothbrush i use for exfoliating my lips.. (Ew!!) Annoying on a daily basis but provides light laughter in times like this!

8. Mixing words up.. So many times i have been half way through a conversation and then as quick as lightning completely forgotten what i was going to say! Or times when i completely get my words confuddled.. Sometimes you wouldn't think i was 24, but 4 haha! However i know this is just part of the illness, as frustrating and embarassing as it is!!

9. People asking how you feel or if you are feeling better.. Obviously you don't always want everyone to know about your illness for fear of having to explain it all over again or people feeling sorry for you, but sometimes people know you are not well but do not know the nature of it. The amount of times people hav asked me 'Are you feeling better now' and i have just replied 'yes thanks' as i can't be bothered to explain it all is unbelievable! Sometimes it is just better to not say anything,

10. Fatigued constantly.. But often you can't sleep! I am sure every sufferer straight away knows what i am taling about here! You spend all day/evening feeling so fatigued you can barely do anything, and all day your eyes are just begging to be closed.. But when you hit the sack in the evening.. Sleep is so hard to come by!! The headache, the grogginess, night sweats and the general feeling of being 'unwell' make it so hard to relax enough to sleep, it's like a catch 22. The way i deal with this now is to literally snatch sleep when i can.. Whether that be 12pm.. 4pm.. or 9pm.. If it means getting some of what is so important to us CFS sufferers then so be it!

So that's my moaning over.. Sorry to moan but sometimes you just needs to let it all out!!

Common Facts About Chronic Fatigue Syndrome/M.E

2011-06-14T09:28:00.000-07:00

Here i have researched some common facts about CFS/M.E that you may or may not already know.. Either way, the more we understand about our condition the better chance we have of beating it!

CFS is sometimes called chronic fatigue and immune dysfunction syndrome (CFIDS) or post viral fatigue syndrome (PVFS)

M.E is recognised as a neurological illness by the World Health Organisation

M.E/CFS also affects children - an estimated 25,000 young people are suffering from the illness

In the UK, M.E/CFS affects 250,000 people - or 1 in 250

Injury, illness and stress (Physical and emotional) can make symptoms worse

Chronic Fatigue Syndrome dates back to the 1700's

No test can accurately diagnose the condition - it is, instead, diagnosed by process of elimination by a medical professional

CFS or M.E can last for months to many years

The Best Websites On Chronic Fatigue Syndrome/M.E

2011-06-09T12:53:00.000-07:00

Since being diagnosed with CFS i have done extensive online research on the condition and come across several sites! Being a sufferer i understand how frustrating it is to have to trawl through search results to find what you are looking for..

Here i have compiled the sites which i have found to be most helpful information and support wise - I hope these can also be of help to you!

http://www.meassociation.org.uk/
This website contains in depth medical knowledge on CFS as well details on fundraising, information and support and complementary treatments.

http://www.meresearch.org.uk/index.html
I found this website very helpful as it contained facts and figures relating to the condition as well as updates on worldwide research and studies.

http://forum.chronicfatiguesyndrome.me.uk/
This is a fantastic forum which i have come across where you can meet fellow sufferers and share your experiences. You can post and reply to a number of topics including symptom management, funny stories and employment issues. If you are looking for general support from people who are suffering from the condition this site is a godsend!

A Personal Account Of M.E/Chronic Fatigue Syndrome

2011-06-07T07:07:00.000-07:00

Having recently been diagnosed with M.E/Chronic Fatigue Syndrome i have been surfing the internet for information. I have of course found plenty of medical websites explaining the typical symptoms, forums to support people like me and medical research blah..

But i have yet to come across a personal account of living with M.E/Chronic Fatigue Syndrome.

It is known that every sufferer has different set of symptoms, so I would like to put across my experience of this condition and how it affects my day to day living, I hope you find it helpful and chances are my symptoms are similar to mine!!

My name is Emma and i have been living with M.E for what i believe to be a few years now. I had a bit of a troubled childhood, experiencing domestic violence at a very young age and self harming from the age of 9.
By fourteen i was smoking cannabis on a daily basis, by fifteen i was using ecstasy heavily which led onto to crack cocaine use, and by eighteen i was clean from illegal drugs but an alcoholic.

By twenty i was clean and free from all of this, only drinking recreationally and had a full time job in the financial services industry. However i had noticed that i had started to feel very tired all of the time, i could sleep for a good ten to twelve hours and wake up feeling knackered. This of course was nothing new to me when i was using drugs and drinking heavily, but i had now been clean for some time and was only a mere twent years old. It is something which i became used to and guessed that it was normal to feel that way, after all i had quite an intense childhood and teens.

However by the time i was 22 i was living very sensibly, i had my own flat and car and a full time job. I did not go out clubbing often and rarely drunk either. I was leading a fairly healthy lifestyle yet constantly felt drained, with regular headaches which at first i put down to working on a computer all day. I also noticed that i would pick up the smallest virus going along with pretty serious viruses. In the space of two years i had developed a severe chest infection and picked up Swine flu, both which left me bedridden and exhausted for weeks.

Over the years i had been to my GP complaining of feeling exhausted constantly along with other various symptoms such as dizziness, only be told i was probably stressed or not getting enough exercise or a healthy diet etc etc.. However i knew something was wrong.. In the end we know our own bodies, right? Several blood tests led to nothing and after a while i accepted the way i was feeling as 'normal', although it wasn't easy when friends couldn't understand why i was too tired to come to social events, or hang out after work for a couple of hours. In fact i put it down to hitting adulthood, and thought that this is how you start to feel in your early twenties!!

However i wasn't to think like this for very long, because this year in March 2011, i come down with a very sore throat, and after a few days i visited my GP, who advised that i had a viral strain tonsillitis. He signed me off work for a week to get better, however after two weeks my throat was still sore and i was still feeling extremely fluey. So back to the doctor i went.. and this time was advised it could be glandular fever - i had a blood test for this which was negative, and was told that it may take a while to recover from the virus so to be patient.

Two months later i'd had enough of 'being patient', i'd never felt so ill in my life - daily headaches which painkillers would not relieve, extreme exhaustion at the point where any free time from work i spent at home sat on the sofa unable to move, strange heart palpitations and muscle aches and stiffness with no logical explanation.

So two weeks ago, i finally found a GP who took the time in listening and seemed genuinly concerned as to how i had been feeling. He sat and took a detailed medical history and a physical examination, asking me very specific questions about my symptoms. He then told me that he very strongly suspects that i am have been suffering from M.E/Chronic Fatigue Syndrome. Now i had heard of this before, i think i read it in a magazing a few years back about a lady being severly disabled - so of course this scared me.

However my GP explained, that although some people are severly affected, most are mild to moderately affected. He advised that the condition can be brought on by possibly, traumatic events or a virus(es), both of which i can say i have had a few of over the years!! I was told that although there is no cure, a healthy diet and rest can relieve the symptoms, as well as symptomatic relief such as painkillers. It was a bit of a shock at first, a little scary to have a 'name' to my condition - but overall very relieving to know that i haven't been 'going mad' and to know what it is!

So here i am, two weeks on - i have learnt a lot in these two weeks from regular research and support forums. I have learnt that stress can really accelerate the condition - a long stressful day at work leaves me with a pounding headache and i end up sat at home like a zombie, unable to do anything.

I've learnt that memory loss is not uncommon, and now those little things i have been forgetting or recent memories 'wiped' from my mind have not been me 'going mad', but a significant symptom of the condition. I have also learnt that if i push myself then i pay for it the next day, even a long days shopping can leave me feeling as though i have been awake for 48 hours, spacey and disorientated.

And i have learnt that M.E/Chronic Fatigue Syndrome is not widely recognised enough. Although i have told few people about the condition, i am constantly having to explain what it is, and people do find it very hard to understand how you can be so tired all of the time, even after a lot if sleep.

That will always be hard, sometimes it feels as though no one understands what you are going through. To be honest before i had the condition i would have found it hard to understand, but now i am one of those people. You are not alone, many others are experiencing the same thing every day. I am now taking each day at a time, full time working is becoming almost impossible so i am looking into part time work and to supplement my income at home self employed. Sometimes life throws things at us that we do not understand, but the way i look at it is that i am one of the lucky ones and it could have been a whole lot worse!!

So for now, i am looking forward to finding out more and learning about my condition, others experiences and most importantly helping to raise awareness to help others understand how debilitating it can be without being judgemental.

This is just my little experience, there are so many others out there who feel the same, and i would personally love to hear from others, so if you are an M.E/CFS sufferer, always remember -

You are not alone!