General M.E. Quotes
Quotes by M.E. sufferers
Quotes from M.E. political discussion groups
On so-called 'fatigue' in M.E...
On the supposed role of 'stress' in M.E...
Quotes on the outbreaks (and infectious nature) of M.E.
Quotes from M.E. sufferers on the negative effects of CBT and GET
M.E. vs MS quotes
Quotes on 'Are we just marking time?'
Quotes on the problems with the so-called "Fair name" campaign
Quotes on the problems with the use of 'ME/CFS' by M.E. advocates
Quotes on the topic of 'Who benefits from 'CFS' and 'ME/CFS'?'
Before reading these quotes, please be aware of the following facts:
1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research (and articles) on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research/articles as ‘only relating to ‘CFS’ patients’ (including those which describe those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.
A very small number of ‘CFS’ studies/articles refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research/advocacy.
Note that the inclusion of a quote on this site does not necessarily denote support for all parts of the article it was taken from, or support for the terminology used in this article, nor total support for all articles created by this author.
In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. and that M.E. activism also focuses entirely on M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.
2. The research and articles referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. For more information see A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and the more detailed paper Putting Research and Articles on Myalgic Encephalomyelitis into Context.
Quotes from ME sufferers on cognitive behavioural therapy (CBT)
Name: Andrew Porter Country: UK [Online]
The use of CBT, also known as Reverse Therapy in the UK, was to increase my level of physical exercise, and reduce the amount of sleep I had. Sadly, this caused all my symptoms to intensify, hence I became depressed through feeling so ill. Consequently, I had to be treated for depression after giving up the CBT protocol.
The use of CBT in the UK is dominant in dealing with M.E. as psychiatric medicine dominates, just as happened with Multiple Sclerosis and even Asthma. Sadly, psychiatry dominates in the UK, especially as it makes it a lot cheaper for the National Health Service to remove patients from what would otherwise be difficult and expensive investigations and treatments.
Name: [Name supplied]
I had 6 sessions of CBT, at the time I was severely affected by ME/CFS had difficulty walking and standing for any length of time. My local support group (Susssex ME/CFS Society) heavily promoted CBT as the answer to all our problems. I had to pay privately to see a psychologist £45 per hr and had to travel 25 miles each way. The journey was the worst part.
On the first visit the psychologist claimed he could put me right in about 6 sessions - he gave me false hope. By the end of the third session I was no better and was starting to the notice that the same ground was being covered in each session, we were going round in circles and getting nowhere. By the final session we had both come to the conclusion that CBT wasn't going to make any difference, my psychologist decided it wasn't what I needed after all - shame it took nearly £300 to reach that conclusion. Interesting nearly every Dr I have seen since being ill isn't a great believer in CBT for ME/CFS - so I don’t really understand why it is pushed so much.
Name: Clytie Country: Australia
CBT can be of enormous help to anyone suffering a long-term and profoundly disabling illness like ME. However, it's important to understand up front what it can't do. It can't change the physical realities in any way. The illness remains the same.
My psychologist expected me to concentrate on talking to her for an hour after a long car journey. (I need to lie down for most of the day.) She clearly had no knowledge of M.E., & set me totally unrealistic tasks, then became cross because I hadn't done them. She told me that the pain didn't matter, it wouldn't harm me to complete her set tasks. It struck me that the money she was being paid (by the British national health) could have been much better spent on something helpful.
Name: Julia Country: UK
I had 10 (I think) sessions of CBT at Barts hospital a couple of years ago and am responding to your request for experiences of this. I had had ME nearly 15 years when I started the CBT, and felt strong enough mentally in myself to deal with any 'brain-washing' type stuff that might have come my way, and in fact there wasn’t really any of that. I took up the offer of CBT partly to see what all the controversy was about and I have to say I did not find it a bad experience, but rather irrelevant.
My CBT counsellor was a pleasant woman, and we spent quite a lot of the time talking about the very recent ending of my long-term relationship. Although I ended the relationship and so was not completely devastated, there were issues to clear up, and as my ex-partner was black and so was my counsellor, I found her perspective interesting. She did do some sort of psychological tests on me, but pronounced me 'normal' and then seemed not really to know quite what to do with me.
I can't say I got nothing out of the sessions, but what I got was very minimal and certainly did not improve my ME - which anyway I didn’t expect it would. Oftentimes any sense of support from the sessions was cancelled out by the exertion required to get to the hospital, of course! However, there was a small positive spin-off I think in that I was able to educate the counsellor about ME, recommending 'Stricken' and 'Shattered' for her to read. She was open-minded enough to respond positively, but unfortunately was only on a temporary contract, so if her perspective was changed by the reading it probably wont do PWME much good.
Good mental health is best for everyone including doctors and therapists. The problem with this particular therapy is that the premise doesn't work with organic disease since the assumption is that if you change your thinking you change what is happening to you. The problem is that you cannot think your way out of any organic disease, not even the heartbreak of psoriasis.
Attitude changes can work wonders for most of us, not just our teenagers, but it doesn't cure biological disease. There are many much less expensive therapies that are a great deal more effective in helping people to cope with this devastating illness.
Firstly, It took 8 months to be diagnosed with ME/CFS. I was given counselling which I could barely attend and spent some of my sessions lying on the carpet of the psychologists floor. I had lots of blood tests etc. I was told that people with depression have high cortisol levels, that’s funny I said, I barely have any. Anyway I had to attend just to get some sick pay from work. I was then reffered to Manchester and diagnosed with CFS, since then I have since I private doctor who says I have ME, not CFS, bloody confusing. Anyway I was given no decent advice and told I needed CBT/GET. I attended therapy and was told there was no way I could do GET. I had CBT instead, but it made me worse or no improvement, as I could barely speak. I consider CBT a waste of time for the patient and a waste of money for the NHS. It has not helped me/made me worse. I am bed bound/housebound under care of parents at 32 years old.
I would also like to say that on my health forms for insurance industry it was written anxiety/depression were objective symptoms chronic fatigue syndrome. Work that one out.
CBT/GET for ME patients is like giving psychological therapy to a cancer patient before they have had chemo. Would it not be more appropriate to spend more money on providing care and medications to help recovery and then once better engage patient in neuropsychological therapy.
The fact that people with CFS are referred for CBT, or any other kind of psychotherapy, as a treatment for their CFS makes as much sense as referring a diabetic. Yes, your way of thinking toward your illness can change, but I think the foremost reason people with CFS are referred for psychotherapy is the belief that it's all in the patient's head.
Name: [Name supplied] Country: Australia [Online]
'And it started: instead of being the brave kid who had fought cancer so hard, she was a kid with problems. "So there are problems at school, huh? You're not doing well at school?" the doctors started saying in a very unpleasant way. She was really taken aback. She was extremely good at school and keen on everything. They knew that.
"So there are problems at home, huh? Something wrong in your family?" We couldn't win. If the doctors didn't understand it, then it was the child's fault. This is, I think, the cruellest thing that has happened to her. Her self-esteem was attacked, she was questioned repeatedly about personal things, and told she was sick because she didn't try hard enough, because she wasn't good at school, because she didn't want to be at school, because her family was bad, because she liked being sick. (Click on the link above to read on...)
Name: J.S. Country: UK (from letters to RiME)
Severe ME is not cured by cognitive behavioural therapy anymore than a severe type 1 diabetic would be, who is in need of insulin.
Quotes from ME sufferers on graded exercise therapy (GET)
Graded Exercise: the worst thing for M.E. I have been severely affected by M.E. for the past 14 years, completely bed bound for about 10 of those years, and had between 5% and 10% of my former health for the other 4. When I read headlines saying that an exercise regime was the answer to my ill health I couldn't understand it, as every time I tried to push myself physically even in small incremental steps I would deteriorate significantly. The last time I was able to walk I managed to convince myself that I was heading for a full recovery, and so increased my activity regardless of whether I was able for it, the result of this is that I have been unable to get out of bed for the past 6 1/2 years.
Graded Exercise is the worst possible thing for M.E. This is not to say that anybody with M.E. should not exercise, common sense tell us that it is preferable to be as active as possible, but in my experience it is critical to stay within your limits, whether that is a 20 minute walk or in my case a tightening and relaxing of my muscles 2 or 3 times a day. Having learned the hard way in future I will be allowing my body to dictate the amount of exercise I do even though that is one of the most frustrating things about this illness.
Regarding how exercise has come to be recommended by some medics, all I can assume is that they have not read the research behind the headlines, as even a cursory glance at the methodology reveals a sloppy scientifically lame approach biased towards a psychiatric model. This is wholly inappropriate for many reasons not least because M.E is classified as a neurological disease and upon closer inspection a proportion of these researchers may benefit financially from M.E being "treated" with graded exercise.
Its about time people knew how bad graded exercise is. i was pushed into it by my doctor, against my better judgement. it is recomended by quite a few doctors and 'specialists' so lots of people are trying it and end up more ill.
I have done 2 GE programs under supervision, both were failures. They both left me far worse off than before for a long period. The first program was at a gym and involved low-impact exercises and then second was a walking program. The symptoms got much worse (sore throat, swollen glands, sinus infections, weakness, fainting) grew progressively worse and I had to abandon the exercise. The first one was early on in my illness (ME as per Ramsay) and probably led to the illness becoming permanent.
Name: [Name supplied]
GET: More harmful than beneficial for me.
I'm not sure I've ever been able to achieve graded aerobic exercise according to the standards set by some of the clinical studies. I haven't been as systematic at adding to the exercise in small increments over a period of weeks. But in a more limited way - perhaps 3-4 days of incremental increases - I typically found that my body was rebelling at the idea of doing the exercising. I found that it might be ok two days in a row, but more than that and it usually put me over my body's limit and I have a mild setback.
Actually I'd have to rank regular exercise as one of the most damaging treatments I've ever tried. As a stressor to my system it ranks up there with the other no-no's like not sleeping well for 3 or more nights; having an emotionally stressful event; getting chilled; and being exposed to some toxic chemical / substance.
Name: [Name supplied]
GET: Harmful!!!! In my early years of CFIDS, I was under the mistaken impression that exercise might be helpful, and thus I pushed myself with disastrous results. Please do not exercise! Later, I found that I had tests that matched my profile to that of Dr. Martin Lerner's CFIDS patients with cardiomyopathy (viral heart infection). Cheney's theory that CFIDS can cause mitochondrial damage also asserts that exercise is downright dangerous. Be very, very wary.
Having had this DD for 30 years, nothing set me back so far as graded exercise. I have still not regained the little strength I had prior to this exercise and it has been several years.
Name: M.S. Country: UK (from the RiME website)
When I contracted ME, I was a young student. Doctors were unable to diagnose or treat the illness but they: maintained a professional interest, gave me (The patient) the benefit of the doubt, and were interested in learning more about ME.
The power and influence of the psychiatric lobby changed all this In recent times, I have either been treated as a psychiatric case who needs to be humoured or a difficult case that dues not fit into any medical category and which can be ignored.
I have been put on Graded exercise and CBT programs which have led to a deterioration in my health.
Psychiatric bias and manipulation of the facts has adversely-affected the way that I and others are treated by GP's, Consultants, employers and family, even.
Name: [Name supplied]
I was put on a GET programme, it was similar to the ones being prescribed today. Just like others whose pain, cognitive impairments, and bone crushing exhaustion, got worse I was told I had to push through it because and then things would improve.
Well I didn't improve instead I continued to get worse. GET not only set me back at the time, it left me more severely disabled and ill than I was before, I have never been able to get back to my prior level of physical activity.
My muscles and nervous system are badly effected, GET caused my exercise intolerance level too become even more disabling, so even on my good days the level of activity I can achieve is markedly less than before. The muscles I use most are now in a really bad way, I keep being told this does not happen in ME, but then many doctors now base their understanding of ME on the deliberately misleading descriptions of idiopathic chronic fatigue.
GET is a horrible treatment for sufferers of REAL ME-CFIDS-CFS.
It might work for people with 'chronic fatigue' which is NOT the same as ME-CFIDS-CFS.
For me, it made nearly all my symptoms worse.
Name: Nicoletta Country: Switzerland
I am suffering from CFS for some years now, severely ill for more than a year, almost full time bedridden. After having tried a lot of alternative therapy I decided to give graded exercise a try-why not, it sounds so logical (to everyone who is not suffering from ME). I tried hard for about 10 weeks in hospital. Looking back I must that it did not help much, it put me under so much stress that I was not able to sleep without sleeping pills anymore. Even though the doctors were quite empathic, they did not notice that I was working above my levels. And after some time I was quite fed up to talk about my activities. I had the impression that doctors did not quite accept my limits and my experiences I had when going over this limits. It did not harm me much I think, but it was just another frustrating experience. In my opinion a bit of exercise, very well adjusted to the situation won't harm, for me it is walking to the mailbox once a day, sitting a bit in a chair outside. But graded exercise as practiced in hospitals is never ever a cure for CFS. My opinion is that those who get better would have gotten better anyway or did not have real CFS.
Money spent on Graded exercise is wasted money, in my opinion most people feel how much they tolerate and make the most of it. A good physiotherapeut who shows some methods of stretching or possibilies of very light exercise might be useful
GET: useless. i took part in graded exercise for several months as part of combined therapy with CBT. i found that no matter how small the starting amout of exercise, i got worse. it made joint and muscle pains worse. i was also mentally drained. i would say this treatment is useless and best avoided.
Name: [Name supplied]
I believe any ME patient forced into doing those treatments [exercise therapies] against their better judgement could be endangering their health mentally and physically.
For more information and more quotes see: Smoke and Mirrors