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May 12
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benefits, cfs, Chronic Fatigue Syndrome, disability, health, me, Myalgic Encephalopathy, Post Viral Fatigue Syndrome, pvfs, welfare
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It's ME/CFS Awareness Day!
May is the official awareness month for Myalgic Encephalopathy and Chronic Fatigue Syndrome (ME/CFS), and May 12th (today) is the international awareness day. ME/CFS is a debilitating condition that I have suffered with since 2002. I don’t make any secret of my condition, but I don’t spend much time writing on the subject either. Therefore, it seems like a good time to join in with my fellow sufferers and tell you all about it. As well as describing what it feels like, I will also tell you how both the government and the media have made sufferers feel like malingerers.
Without further ado, here is my ME/CFS story …
What is ME/CFS?
There are several acronyms which refer to the same general condition: Myalgic Encephalopathy (ME), Chronic Fatigue Syndrome (CFS), and Post Viral Fatigue Syndrome (PVFS). Technically, I and many others can be classed as having PVFS, but most of us avoid using such a relatively unknown term. This range of names highlights how little knowledge there is about this condition. It’s my suspicion that there are many similar conditions, thus we get this group of umbrella terms. There is still debate over how to refer to ourselves. For the purposes of this post, I’ll stick with “ME/CFS”.
ME/CFS is a debilitating condition where sufferers experience any combination of the following symptoms:
- Persistent ‘crushing’ fatigue
- Little or no physical stamina
- Neurological pain
- Muscular pain
- Twitching muscles
- Poor concentration
- Poor short term memory
- Impaired balance
- Low quality of sleep
- Poor temperature control
- Irritable Bowel Syndrome
Each ME/CFS sufferer you speak to will experience a different combination of symptoms, and have differing severities of each. However, the characteristic feature that links them all is the ‘pay back’ after any period of activity. Some of us can feel ‘okay’ while we’re doing something, but the severe debilitating symptoms will arise after we’ve been active for a while. This is why one the most widely recommended coping strategies for us is ‘Pacing’. The idea is to try to find an equilibrium of rest and activity, avoiding the ‘boom and bust’ pattern that leave many of us bed ridden. Some say that the amount of activity should be slowly stepped up to aid recovery, also known as Graded Exercise Therapy (GET). However, I have yet to hear of a significant number of people actually recovering by using GET – it is clearly not a magic bullet. Even with pacing, the condition is unpredictable, which means trying to hold down a regular nine to five job is difficult.
Video Interlude
How I became ill
In 2002, I was nearing the end of the first year of a PhD course. It was a position I was excited, and stressed, to be in. As well as doing academic research under the guidance of academics I admired and respected, I was taking on as much teaching work as I could to top up my income. My weekly routine consisted of rushing around, giving maths tutorials to undergraduate students, and marking their homework. In addition to that, I was doing outreach work with two local schools, giving advanced maths classes. If I was lucky, I had a day or so in my week to concentrate on learning the material I needed to know, for the research I’d be doing the following year. It was a gruelling routine, but I loved it.
In May 2002, I fell ill with a virus. Nothing extraordinary, just a snuffly nose and a cough, but I didn’t recover. As my fatigue worsened, I had to give up my teaching duties, and start doing my PhD work from home. Doing a PhD in any subject requires a lot of concentration and focus. As time went on, my ability to do just that was getting worse, and I couldn’t think clearly enough to carry on with my work. Meanwhile, I saw my GP a few times, but all he could find wrong with me was a vitamin B12 shortage. This was corrected by injections, but my condition didn’t improve. Therefore, I had to intercalate from my PhD, year after year.
ME on a bad day
My GP tried to attribute my persistent symptoms to depression, as many doctors do with ME/CFS. This is a subtlety that many doctors seem to miss. Of course people with ME/CFS are depressed, it’s a demoralising state to be in. Most of the time though, sufferers weren’t depressed before they got ill. In most cases, any depression is actually a symptom, rather than the cause.
The transition of stepping down from what I’d aspired to do since I was a school boy was difficult. My routine was gone, I was stuck at home everyday without a social life, and I had to claim benefits. However, the crushing fatigue, and deep-rooted, persistent pain in my muscles, made looking after myself a rather big distraction! As with any chronic condition, you have to work at getting through a day at a time.
Video interlude
The people who make living with ME/CFS worse
Unfortunately, actions by sceptical doctors, uncaring government departments, and sensationalist journalists, can have a massively detrimental effect on what is already a physically, and emotionally, devastating condition.
Doctors
Once it became clear I couldn’t return to university, I had to ask my GP for sick notes. He refused, telling me that I was a “clever guy” and that I could “work out why” he wasn’t giving me sick notes. My interpretation of this is that he didn’t believe there was anything wrong with me, and thought I was trying to commit fraud. I fought my corner, and by going through my local patient liaison service, he was forced to issue me with sick notes. Later on, a new surgery opened in my area. I left my old GP, and I’ve been much happier with the Primary Care Trust (PCT) practice I’m now with. Dear Mr. Cameron, please don’t screw up the PCT, it actually works.
Finally, I got to see an immunologist at a private clinic (BUPA), after some friends suggested I might have ME/CFS. Sure enough, the consultant confirmed I was a text book case and referred me to his NHS clinic. After being passed around several more consultants, it soon became clear there was no medical help for my condition. The only available ‘therapy’ was to go on a course of Cognitive Behavioural Therapy (CBT). During my first session, the therapist was at great pains to emphasise that CBT was not counselling, so I consented to embark on a full course, as I was open to anything that might help me. In short though, the course made no difference to me, and it WAS counselling, just by another name.
The problem is that many in the medical profession treat ME/CFS as a psychological condition, when in actual fact it is a biomedical condition, and therefore psychological treatment is inappropriate. In my case, the only effect of CBT was to cause me even more fatigue by travelling to and from the sessions. In many other cases, patients are given exercises to do, which cause a great deal more harm than good, as described in these studies.
The government
Applying for financial aid has been a consistently demoralising experience. I shall remain politically neutral by saying that both New Labour, and the Conservative Liberal Democrat coalition, have been clueless at how to help sick and disabled people. Sick and disabled people need help, encouragement, straight forward and fair rules, and a sense of self-worth. However, the exact opposite is achieved by the UK incapacity system, and its proposed reforms.
Benefit claim forms have questions about what you are mechanically capable of doing, along with a SHORT section where you can talk about your mental health. Nowhere in any of these extensive questions are there questions about one’s ability to maintain a certain level of activity. Certainly, someone with moderate ME/CFS can lift a bag of shopping, or get up from a chair without help. However, there’s no where to formally state that once you’ve carried a few heavy bags of shopping back home, that you’ll be recovering for several days afterwards!
Benefit claims are regularly reviewed, claimants have to attend a medical interview, and complete a renewal form. The UK Department of Works and Pensions employs a company called ATOS to conduct medical interviews. Read this distressing post on the “Where’s the Benefit?” blog about the treatment benefit claimants can expect from an ATOS interview.
In my own experience, prior to ATOS, I received poor service from my local interview centre. At my second review, I was assessed by a Chinese doctor, who could barely speak English. In short, I failed the interview. I appealed against the decision, and as part of the process, I received copies of the reports written about me. I was shocked to see how my answers had been taken out of context at every opportunity.
The mood at the tribunal was intriguing; there was almost a sense of knowing, both from my welfare rights representative, and the appeals board. It suggested to me that the appeals board were seeing a great many cases where people should not have been considered capable of work. They certainly didn’t take long to decide I wasn’t, and so I won the appeal.
Indeed, the more the government makes the work capability assessment (WCA) into a blunt, insensitive tool, the more people will have to justly appeal, and win. In turn, that process causes claimants a great deal of upset and stress, and costs the tax payer even more money.
Once you are in receipt of benefits, the rules make it somewhat impossible to get back into work. As things stand, people who are on Incapacity Benefit (IB), Income Support (IS), or Employment and Support Allowance (ESA), are allowed to do 16 hours of work a week, and can keep a mere £20 of anything they earn. Anything declared beyond £20 is deducted from the benefit for that week. What’s more, once you announce you are trying to work, it will trigger a summons for you to take part in ‘back to work’ interviews. These conditions provide a disincentive to anyone who wants to try getting back into work. Most of the time, for people who are tired and find it difficult to concentrate, just the paper work involved isn’t worth the £20.
For people who are too poorly to leave their house, the idea of being sent on courses is just overwhelming, and ironically unhelpful. In my view, the system is far too inflexible to help sick and disabled people do any work, nor do the above conditions reflect reality. When someone who is sick or disabled tries working, they don’t know how they will be able to cope. There is no reason for the DWP to assume it’s okay to immediately cut them off. What’s more, the idea of losing one’s security by simply TRYING to work, is enough to scare them away from doing so. The reforms I’d like to see to the UK system would have the DWP taking a personal approach by actually listening to the needs of individuals.
The media
Via an all to keen media machine, the government regularly misrepresents the sick and disabled. The public are presented with a stereotype that everyone who is in receipt of benefits is some sort of fraudster. Figures presented in the media focus on how much money is lost due to “fraud and error”, with the emphasis firmly placed on the fraud part of the equation. In actual fact, benefit fraud only accounts for 0.8% of the total welfare bill (see the link below), while official error accounts 1.8%. However, the story you never see in the news, is how much the DWP under pays the sick and disabled, by error.
For an fantastically detailed and well researched article on the real cost of benefit fraud and error, please read What Has Happened to Welfare?
Below, are a two illuminating charts from that post, showing the real proportion of the cost of benefits and fraud to the tax payer.
Comparative cost of welfare
Fraud Within the Public Sector
Furthermore, sensationalist newspapers take great joy in frequently reporting about the benefit cheats who have been caught out. We can all agree that the proverbial window cleaner shouldn’t be claiming for a bad back. Then again, how many windows can that window cleaner clean at once? However, the repeated ranting in newspapers about “Welfare Britain” doesn’t help anyone (apart from those selling the papers). Claiming that the sick and disabled are somehow sucking the country dry doesn’t reflect reality. The end result is that newspapers inflame public opinion and make the already vulnerable sick and disabled people of the country feel worthless. Making someone feel worthless is not a good way to get them back into some degree of employment. For those who aren’t capable of doing any work, such a public mood could lead them to feeling suicidal.
Sadly, it would not be an exaggeration to say that the government and the media, just make the lives of ME/CFS sufferers worse. The NHS means well, but has nothing meaningful to offer. ME/CFS is thought to affect around 250,000 people in the UK, and there is an astoundingly little amount of money spent on medical research into ME/CFS. Therefore, I would be very grateful if you wrote to your MP, and asked for them to raise the subject in parliament.
Please help to spread the word about the plight of ME/CFS sufferers!
The people who make ME better
Fortunately though, I’d just like to give thanks to the people around me, who know me, and know I’m not a “feckless scrounger” just because I’m too fatigued to go out to work nine to five. My friends and loved ones have all been accepting of my condition, and have done their best to understand. Simple understanding, and just keeping in touch with an ME/CFS sufferer goes a very long way. If someone can’t get out of the house to see you, it means a lot for you to just keep in touch and say ‘Hi’ once in a while.
The Internet and social networks have are fantastic ways for ME/CFS sufferers to reach out and find each other. Particularly searching Twitter for the following hashtags will yield hundreds of fellow sufferers: #MECFS, #CFS, #ME, #Fibro.
Useful links
- The ME Association
- The ME Association Facebook Page
- Action for ME
- Action for ME Facebook Page
- ME Research
- ME/CFS Parents
- SupportME
- Sleepy Dust
For even more ME/CFS resources, see this list compiled by the wonderful Marja Ernst.
50 articles
May 12, 2011 @ 11:16:15
It’s strange to see how similar the problems that ME/CFS has brought to our lifes. Only strange in that, ME/CFS is very isolating, so it is too easy forget how many people are going through the same or very similar experience.
Great post David.
May 12, 2011 @ 12:37:13
Hi Andy,
Thanks for your comment.
You are spot on about the isolating effect of this illness, which is why I’m very grateful for the Internet, and especially Twitter.
David
May 12, 2011 @ 12:34:04
Great post David – I’ve shared it via facebook.
Phil
May 12, 2011 @ 12:36:25
Hi Phil,
Great to hear from you!
Thank you for passing it on!
David
May 12, 2011 @ 15:41:03
This is a fascinating story David, as much as it is tragic in a way of course.
Thanks for sharing your way through this. It is great how you are not simply succumbing to it, but standing up and trying to find cures as well as support from the government. I think, even thought I am not experienced in this, it is a great way to find strength when dealing with an illness.
Buffered it twice David!
May 12, 2011 @ 15:43:52
Thanks for your support, Leo!
May 12, 2011 @ 17:38:50
Thanks for posting this. I suffer from FM/CFS and Osteoarthritis. My Fm symptoms began in childhood and got worse the older I got. I had a bout with Mono in the mid eighties and never really got better. Then all the FM symptoms got worse after each pregnancy, and I was told by a Cardiologist that I had “exercise intolerance”, so , even though I had formerly spent 6 days a week in dance studio and after that worked out regularly(though it was extremely difficult, I forced myself, dragged my feet, stumbled and feel into bed as soon as I got home), I could barely get out of bed and do daily things. I’ve steadily become worse, and after more than a few falls, near car accidents and even once passing out at a red light, had to give up driving(and working). I struggled for several yrs. working even part time, trying to keep from passing out, and having great trouble with the bright lights, noises, smells, in the places I worked,and serious concentration and memory(mostly short-term), daily migraines and cluster headaches, extreme exhaustion, irregular heartbeat,sever muscle and joint pain,stomach problems, among other things. I was *finally* diagnosed with Fibromyalgia, but as* severe*(extreme more often than not) as the pain is, it’s the severe, debilitating exhaustion that keeps me from doing what needs to get done.(Pain is such a part of me now that I’m able to push through it if something really has to get done, but the extreme fatigue is a losing battle) I struggle just to shower(finally gave in to a seat and also using canes, but not always), get dressed and eat, but then I need a nap, but with 4 kids that’s not possible until later in the day. I’ve often had to choose between having lunch or sneaking in a nap before the kids get home. Usually, i’ll set the timer on the stove and lie down on the couch(with my heating pads) and have a late lunch(whatever I can find easiest, it’s a big effort for me). I went to an event with my husband on Monday and am still recovering from it. Having been a former dancer, I pushed myself for many years thinking it would get easier and that I was just out of shape, but I was always worse and it never got easier, always worse. Though the pain management /neurologist Dr. I see for my Fibro had never formerly diagnosed me with the CFS, it’s been strongly suggested , because of the severity and nature of my symptoms,and they gave me more pills to take saying that’s how they treat it(besides what they do for my Fibro, which 4 Drs. *did* diagnose me with after over 20 yrs. of being laughed at, refused to be treated, told it was all in my head,etc., dozens of tests and several Drs. later,etc.( They originally ruled out a brain tumor and MS, and have since done another MRI to check for MS again.) The pills for the CFS are supposed to help with energy, but since I have stomach problems(GERD, IBS), I had to go back on RX stomach meds and greatly reduce the dosage of the medicine, but my stomach is still bad). I almost missed my pain management appt,. today because I couldn’t get out of bed. I slept most of yesterday away and even though it was hot outside(I was unaware until my kids came home, changed into shorts and opened windows, etc), I had all the windows closed and was huddled under 5 blankets trying to get warm. I tried to do some stretches and lite exercise to try to warm up and loosen up the stiff joints from the arthritis, etc. but could no longer keep my eyes open and had to crash (I slept for 3 hours, normally the pain makes it too hard to get comfortable, but since going out for a few short hours Monday, clapping and using the stairs, my body still hasn’t recovered(the vibrations and noise (it was concert) ripped through my body and by the time I got home I could barely walk, even with a cane and my face and muscles were having such horrible spasms/tremors that my teeth chattered uncontrollably, I was up for hours before the muscle relaxers and pain meds finally offered enough(though minimal) relief to get some sleep(after using tons of muscle cream too); but the next morning I couldn’t even get out of bed. My husband had to go into work late to get the kids off to school. And yet, when people see me sitting in my back yard or on my porch, i’m told how “lucky” I am that I can stay home(yeah I love being broke, alone and sick) (ignorant jerks). It’s incredibly draining on me to be out in the sun, and summer is sheer h*ll for me, b/c I can’t drive, so my kids are trapped home with me and I have no choice but to let them have friends over , which makes noise , distraction , headaches,stress and muscle tremors much worse, but I can’t let them miss out on life because of me. And In summer, naps or even lying down resting(which I AM NOT doing while supervising children) when I need to is rare, it takes a* great toll *on body, family,my marriage, as I fall asleep on the couch by 8-9pm and am not really there like I need/would like to be. It took well over 20 yrs. to get a proper FM diagnosis and my Drs. say there’s no real “test” for CFS/ME, though they know how severe my symptoms are, so I get treated for it the way that they do, but I’d like to know for sure if it’s really CFS or the combination of the severe FM and Osteoarthritis. I’m supposed to see a sleep specialist and other specialists, but am too tired to even choose a Dr. from the lists and have to work around my husbands work schedule, which puts more pressure on him(and more guilt and anxiety on me). The stairs keep getting harder and my husband is doing much more housework and cooking(as are the kids), even though I mainly worked part-time(though just short of full-time hrs.) after having kids, I feel ads if I’ve lost my “job”, b/c I don’t even have the part-time check(which came in handy), and I can barely do the basic work that needs to be done here at home, when for years I pushed through it and baked and was much more active even though I suffered in silence, my body can’t do it anymore, yet, I keep trying to do the things I love, even though it takes several days, even weeks to recover. (I had to take a nap after visiting a neighbor recently. Just sitting up, talking and trying to think and remember what i’m saying is so incredibly draining and even very painful. I need to write my grocery list, but it’s killing me to type this, even though I had my shots today. Sorry this is so long, but it’s so hard having “invisible” illnesses(aren’t most?? I mean unless you have a cast on or stitches or something, how can anyone possibly tell how anyone else feels or what they’re experiencing, it’s so ridiculous, the lack of support and rude comments we endure). We’re not injured, we are sick. Thanks for listening.
May 21, 2011 @ 20:06:54
Dear Karen,
Thank you for your amazing reply. I’ve only just now had the time and energy to return to my comments.
I read yours through several times, and my heart really goes out to you. Thank you again for taking the time and energy to share your story here. I’ve been trying to get this post tweeted as much as I can, and so your story will have been seen too. I believe this post has been viewed around 350 times.
May 21, 2011 @ 21:21:20
Thanks.
May 12, 2011 @ 16:18:45
Thanks for writing this David, its a great article, I’ve added to my facebook account hopefully it will help people understand how debilitating this illness is x
May 21, 2011 @ 20:09:33
Hi Elaine,
Have only just managed the time and energy to reply to all of these comments.
Really pleased you read through, and thank you for posting on Facebook.
Hope you’re coping! *hugs*
May 12, 2011 @ 17:26:40
David,
This is a wonderfully well-written post about how difficult it can be to live with ME/CFS. Thank you for sharing your story. I hope that as more people share their experiences in this way, the public opinion will start to shift. When the public starts seeing the true causes of your fatigue, maybe doctors will be more vigilant in proper diagnosis and more money will fund research into treatments.
Good luck!
Lauren
May 21, 2011 @ 20:11:13
Hi Lauren,
Thank you for your very kind words.
I hope public opinion starts to shift too. It currently feels like we’re a silent and ignored majority (compared to other illnesses).
Thanks for your support!
May 12, 2011 @ 17:27:28
Found you via Michelle Roy’s twitter. Great post! -Jocelyn
May 21, 2011 @ 20:11:51
Hey,
Thanks for stopping by!
May 13, 2011 @ 10:32:02
Hi David, brilliant post! I have severe ME so I know what it’s like. I also share your views and disgust at the government and press treatment of us and all others who are ill and disabled. It is a double whammy for those of us with ME as they are particularly bent on denying it is a biomedical illness. Can I offer a few more links for you to add to your list – I have found them excellent. Invest in ME have their 6th Conference on ME happening in London on 20th May – see here -
http://www.investinme.org/IIME%20Conference%202011/IiME%202011%20International%20ME%20Conference.htm
Take care, stay strong and keep up the brilliant work!
http://www.investinme.org/index.html
- brilliant site campaigning for funding and research into biomedical causes of ME
http://www.facebook.com/home.php?sk=group_123305257746194#!/home.php?sk=group_123305257746194
– ME. Welfare benefits campaigning and support group
http://www.ahummingbirdsguide.com/
An Australian sufferer’s site
May 21, 2011 @ 20:14:11
Hi Sam,
Thank you very much for your kind words and support.
The links are great, and glad you’ve added them to my post, I’ll keep trying to get more people reading this, so anything posted in the comments will be picked up too, as well as by Google.
Keep fighting!
May 15, 2011 @ 16:52:17
Hello David,
very good article indeed, I totally agree with you on ALL points touched. The situation is very similar in Switzerland and it is a worrying situation – regrettable actually, living the one of the most “advanced” countries.
I was a little perplexed reading your list of symptoms, I see myself qualifying for at least 6 of them… but I still manage – I hope that I am not paranoid!
May 21, 2011 @ 20:17:03
Hey Michael,
Good to ‘see’ you
There are varying degrees of ME/CFS, but I’d say you’re alright unless you get the “post exertional malaise” too.
Unfortunately though, it’s difficult to get an ME/CFS diagnosis, it tends to be more of a diagnosis by exclusion. So you’d need lots of tests.
May 16, 2011 @ 17:45:02
An informative post David. As a Twitter follower, I was aware of your condition, but didn’t have much insight into the condition, so Thank You.
As you say, many of the NHS/Government forms are totally inadequate to handle the situations they’re supposed to be dealing with. In a similar (but rather more trivial) vein, after a brain haemorrhage left my mum mostly paralysed down her left side (similar to a stroke victim), she was catheterised for many months as she slowly but surely regained some measure of mobility. After she refused a new catheter one day, one of the things we applied for was incontinence pads. All of the questions on the form related directly to her bladder control. Nothing even came close to allowing her to mention that she is simply physically unable to even get to the loo or remove her own knickers unaided. As it happens, there must have been something else in the form that allowed her to qualify for them. Luckily, she still has my dad to care for her full time, so the pads are really about dealing with potential accidents and making her feel more confident in case circumstances conspire against help getting to the loo in time. In other ways, she is actually very well provided for by Social Services, but isn’t it about time all such forms at least had a box where there is an opportunity to simply add miscellaneous information relevant to your claim, whatever that claim may be?
As to the benefits / work dilemma, it seems blindingly obvious that what is needed is the same sort of phased (or partial) return to work for disabled people as the government has already introduced for those returning to work after “short term” sickness, i.e. the “Fit note”-style analysis of what they CAN do, and facilitating that, rather than taking an all-or-nothing approach, which – as you say – is not only demoralising, but also will put many people off even trying to get back to whatever level of paid work they can manage. It may not be perfect, but it’s a step in the right direction from an all-or-nothing approach.
“Radical” (aka just plain sensible/obvious) idea: Assume that the benefit is paid in lieu of a normal 5-day “working” week. Pay benefit pro-rata for each day of that week on which the claimant can’t work. So, if you can manage 1 day per week paid employment, you should be able to claim 80% of your benefit. (Or work one day per fortnight and get 90% benefit.) Of course, to be financially advantageous, the salary from your 1 day of work would be worth more than the benefit that you’re giving up in order to improve your self-esteem and hopefully your standard of living. And maybe, just maybe if you’re one of the lucky few for whom GET is effective, it could be the stepping stone to more days of work and fewer days off work and on benefit.
A total nightmare for small employers of course, but then most government legislation is!
May 21, 2011 @ 20:21:27
Hi Julie,
Thanks for coming to comment and taking an interest, it’s really appreciated.
Similarly I was aware you were involved with looking after a poorly Mum, but I wasn’t quite clear what was going on. So sorry to hear all that though
I agree with all of your points, there does need to be a phased return to work, without being forced onto course that one is not fit to attend.
May 23, 2011 @ 15:28:48
Great Blog!! It made me cry. We can all relate to the almost unceasing doubt, ignorant remarks and scorn that we live with daily with this illness. Many thanks for your statement, “Claiming that the sick and disabled are somehow sucking the country dry doesn’t reflect reality. The end result is that newspapers inflame public opinion and make the already vulnerable sick and disabled people of the country feel worthless. Making someone feel worthless is not a good way to get them back into some degree of employment.”
I would give ANYTHING to go back to work.
May 23, 2011 @ 15:50:48
Must mention that I loved your challenging tweets about the dubious claims of Mickel Therapy by@beeeeth @davidmickel1.
Bravo!
Jun 19, 2011 @ 22:21:49
Great article and hopefully this will help spread some understanding of this crushing medical problem.
Hope you all the best with the road ahead and I’m always available on Skype for a chat
Jun 20, 2011 @ 08:50:01
Thank you David for such an excellent description of your personal experience with ME, which I know resonates so much with me and with tens of thousands of others. Best wishes to you!
Jun 20, 2011 @ 10:10:49
What a suberb article! I’ve recently been confirmed with ME/CFS/FM after years of being treated for depression!! I’m struggling to accept this diagnosis at the moment as I’ve always been able to do so much and just thought the fatigue afterwards was because id hit 40 and my body was slowing down!!! I’m stubborn and am finding myself over doing it all to often which then results in days such as to today where I haven’t got out of my bed yet and when I do it will be only to move to the sofa!!
I am also finding that those closest to me can’t accept my illness as the are so used to me just getting on with stuff, this is now leading to petty arguments because I feel they perceive me as lazy!!!!
Oh I could go on… My arms are aching and so is my head… More later maybe.
Thank u once again