Name: Ruth Country: Ireland
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: Matthew* Country: UK
Exercise - handle with extreme care- ruined my life.
Before becoming ill, I was extremely sporty. Initially, after not being able to rest when having a virus on a school trip at an adventure centre and made do all the activities and never recovering, I was only very mildly affected. This I put down to giving up sport because of the muscle problems I developed so for the early years, I was able to go to school and then college full-time although I had to make cut-backs in most other areas of my life and, as my brain didn't work as well, struggled.
Anyway, my condition suddenly got much worse in the middle of my second year exams (a few hours after a tough 3-hour maths exam where I pushed myself hard to do questions (got a first, by the way), my throat swelled up and I felt feverish). Kept trying to exercise during the summer but developed more and more muscle problems - the physios said they never saw anything like it and x-rays of my back showed inflammation along my spine. I took a year out of college as felt I wouldn't have been able for my finals with the health problems I had and set about trying to get back to normal health by gradually trying to build up the exercise.
Instead of improving, I kept getting worse and worse until I virtually collapsed and have been chronically and severely affected ever since and need a wheelchair to go distances more than 50 metres.
As nobody went to bed when they were sick in my house, neither did I so my symptoms in the early years could not have been put down to deconditioning.
I get so annoyed reading all the rubbish that is written about exercise and M.E./Chronic Fatigue Syndrome. Drugs which make a significant percentage of people worse are usually banned or have big warnings yet exercise ruins the lives of lots of people with ME/Chronic Fatigue Syndrome, like it has done mine, yet most medical people often aren't told by the people advocating the approach how dangerous it can be for patients. It really is unbelievable.
As I am so ill, even too much activity in my life (which is lived in the ground floor of my parents' house) can cause my glands to swell and my throat to get sore and generally feel malaised so I simply can't do this treatment now. I went to all this trouble to warn others - patients shouldn't have to wait until they are harmed by a treatment to learn it is a potentially dangerous treatment - they should be able to learn from other patients. If I had come across this information years ago, I might now be living a more normal life, rather than the life of a very disabled person.
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.
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.
Betrayal of the Severely Ill? Appendix 12: Letter from QLD ME/CFS Society to the RACP Working Group
‘A young woman who had been hospitalised due to the severity of her illness (she was having difficulty remaining upright due to her blood pressure collapsing) was removed to a psychiatric ward against the wishes of her treating physician. The physician was actually threatened with the loss of his visiting rights to the hospital if he did not consent to the move. The young woman had a copy of the draft placed in her face with the "exercise bits" highlighted. She was told by an infectious diseases physician that she could expect to faint several times, but it was only through exercising that she would get better.
The staff have been saying to her that she is just a "naughty girl" (she's 26 and a qualified physiotherapist) and "doesn't want to get better". Her mother is currently sleeping on the floor of her room to prevent psychiatric patients invading it at night, or staff members verbally criticising her or attempting to make her do physical tasks beyond her capacity.’
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
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.
I believe any CFS patient forced into doing those treatments [exercise therapies] against their better judgement could be endangering their health mentally and physically.
Name: S.M. Country: UK (from the RiME website)
Over 13 years ago my brother contracted an unknown illness rendering him bed bound and hospitalised at the age of 18. In hospital he underwent tests and was put on a program of graded exercise which left him flat out, bedridden, hardly able to speak or feed himself and unbelievably in the geriatric ward, a totally unsatisfactory and inhumane treatment.
My parents took him out of hospital and have cared for him at home, trying to understand this illness. Until 18 months ago he had made progress and had reached a level where for short periods of time he could watch TV, use the Internet and get around the house in a motorised wheelchair. But after trying to get better to everyone's disbelief he deteriorated to a condition even worse than before.
He is now lying in bed in a darkened room, again unable to stand light and sound, unable to sit up in bed or even roll over. He can only move his forearms and speak for extremely short periods of time. He is being cared for, spoon fed and toileted by my parents and has absolutely no quality of life. This leaves my parents with a life of hard work and stress beyond belief and no rest.
I believe the only way forward with this illness is for the medical research council to fund proper research as stated on the petition. Everyone is entitled to some quality of life.
I tried GET. However, I did it myself so people might not consider me a proper example, assuming I over did it when I had my relapse. However, I followed the accepted protocol very carefully. I increased my activity by only the tiniest amount and I then kept that level of activity up until I was sure it didn't have any detrimental effects before I attempted to increase again. It took me 6 months to walk to the end of my road (26 terraced houses) and a further six months to get to my local shop. I wore a pedometer to make sure I inadvertently didn't do more on good days. However, 1 and three quarter years after I'd started, I was at the shops and I suddenly realised I could walk no more. I used my mobile to get a neighbour to pick me up and that was almost exactly three years ago and I've been housebound since with no improvement at all.
I have a huge concern about how long any studies using GET follow up patients. If I'd been part of a study that had followed me up 18 months after I'd started GET I would've been a total success. However, two years later a different story. I feel very strongly that and GET study should follow up people 5 or even 10 years later.
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. It is only when the true physical cause for M.E. is found that the psychiatric dominance will disappear, just as happened with Multiple Sclerosis and even Asthma, once the truth was revealed. 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.
It made the condition far worse.
Despite about 8 attempts over 5 years, graded exercise hasn't ever worked for me. At one point, it did help me regain a little muscle strength and make me feel better about my body. I always stretched before exercising, began at 2 minutes on the treadmill, or 1 rep at whatever machine, rested between and worked up VERY slowly (adding a minute every 2 weeks). I was only ever able to get to 12 minutes walking on the treadmill without crashing. The first few tries, I kept at it, resting up after the crash and doggedly starting all over again.
But I found that I feel worse overall when I exercise than when I don't, so now I stick to stretching and an occasional tai chi workout on tape for elderly people. Side effects of graded exercise were excruciating. It was difficult at best, and the longer I kept at it, the worse I felt.
From the 25% Group, by an anonymous sufferer:
‘Governments, researchers and the medical profession in general need to realise that it is not just about saving lives but quality of life and that with severe ME, this quality is zero. Society would not let animals go through such suffering and incapacity but ME sufferers are left to exist in a "living death" state for years; sustained only by the distant ray of hope of recovery and a positive attitude that keeps you fighting and thinking that it’s got to get better soon even after years of disappointments.
Insult is added to injury by the fact that some people still believe a bit of graded exercise and some positive thinking is all that stops sufferers getting well. I used these methods to recover from an accident when I received 25% burns but with ME this form of "treatment" only results in deterioration rather than increasing your capacity! If only that was the answer I’d never have been in this hell. I’d have been well years ago enjoying the wonderful life I led before ME.’
A sufferer recounts the often horrifying impact of this "treatment" [CBT and GET] regime on those with severe ME:
"All of my ‘help’ is useless:
I am offered anti-depressants (I am not depressed)
I am offered ‘Behavioural Therapy’ (I have no incorrect illness beliefs).
I am offered ‘Graded Exercise’ (Which even in small moderation, relapses me).
EVEN WHEN I DO THESE ALL AGAINST MY WILL. As an inpatient in Hospital, my medical records are falsified, and it claims I am ‘obstructive’ to my own recovery, as these psychosomatic principles have no effect on me. This is then claimed to be MY fault, not the fact that I am not mentally ill, and therefore do not ‘recover’ from M.E via mental illness interventions".
The same sufferer goes on to tell how:
"I was refused medical drugs for chest pain and orthostatic intolerance (a feature of M.E) unless I agreed to be LOCKED in a mental institution in LONDON (National Hospital For Neurology & Neurosurgery) Summer 2004.
I participated in ALL activities I was asked to do, despite being mostly bed-bound.
I was not given food, and had to resort to hiding food in bags, and urinating in water bottles and hiding them under the bed (as I was refused to be pushed to the toilet).
Despite this treatment, I continued my ‘Behavioural Therapy’ at this Hospital and did everything they asked. On reading my medical records, it stated ‘had not engaged with the treatment protocol, and ‘self-discharged’. All lies and fabrication of the truth
This is what ‘Behavioural Therapy’ is for an M.E patient in 2004 in the NHS".
From the 25% Group, A carer's story by Greg Crowhurst (Commenting on the MRC report.)
I have got about an hour. It’s an early Thursday morning and a world away people are going to work, grabbing breakfast, starting a new day. My wife Linda is asleep. In about an hour I will do my best to help ease her agony. For if the last eleven years are anything to go by she will awaken in a darkened room paralysed and totally in pain. Her face will be drawn and palsied down the left side. She will shake and gasp in awful thirst. Very gently, in whispers - for any noise is devastating, I will try to help her. I will probably get it wrong because even now, after eleven years of it, I don’t really understand the full extent of her suffering; how even the softest, most loving touch hurts.
Did I say eleven years? That’s a lot of mornings. That’s a lot of time with no treatment, no relief. That’s a big chunk out of a career. That’s a quite a bit of time surviving on benefits, living in isolation, fighting for just to be acknowledged for God’s sake. Somewhere out there a whole bunch of psychiatrists are probably climbing into their BMW Series 5’s as they too begin this new day. Me and Linda, we’ve spent the last eleven years surviving; because that’s the best you can do with Severe ME at the moment.
Professor This and That meanwhile have spent the time building a nice little career thank you very much, cheekily suggesting that if only people like Linda could change their beliefs that they are ill, then.....I am searching for an analogy here, you know when you can’t get rid of a particularly annoying pest; something loathsome that crawls out of woodwork ... I don’t know, but I hope you get the picture, for that is how this carer - and I suspect I’m not the only one, views the Cognitive Behaviour boys. It wouldn’t be so bad if they’d just gracefully admit "it’s a fair cop guv!" Okay you’ve done alright on the back of the likes of Linda with your mad ideas and theories, now just go away and leave us alone ! Will they heck!! Those blighters have only gone and grabbed for themselves £11 million quid. Eleven million pounds of our money!! £2.5 million for the Mighty Rich Con (Medical Research Council) scam and the rest for a hoary horde of psychiatrists to staff those ME treatment centres. If you and I had eleven million pounds, I wonder what we’d spend it on:
It wouldn’t be our first thought to spend it on someone to come out and put our loved one through their paces with 90 minutes of Graded Exercise "Therapy".· It just wouldn’t occur to us to send for a psychiatrist anymore than we’d expect a shrink to turn up and ask us if we’re sure, if we’ve broken down by the side of the road.
We would say "you’re having a laugh" if a man in white coat asked us to spend £2.5 million on a Missed Real Chance; that specifically excludes those suffering from ME !You and I , we wouldn’t waste time faffing around. We have the overwhelming evidence of our own eyes to go on.
We’d blinking do something so revolutionary it would be shocking. We’d spend a penny on physical research. And another and another.....we’d make some progress wouldn’t we ?
Controversially it might just be worth our while funding a CBT - Cut-out the Bollocks Therapy for those deluded behaviourists to attend, while the rest of the world wakes up. Ah well, More Rubbish and Confusion. Another day wasted.
Name: Mark* Country: UK
I became ill in February 1993, just a few days after receiving a tetanus booster. The original diagnosis (no one noticed the tetanus booster at the time, or if they did, they didn't mention it - and no one's mentioned it since) was "acute stress". To this was later added "anxiety" and "depression".
My GP recommended I take longer and longer walks every day. This I did - until I literally dropped. After a very worrying struggle to get home again I realised this was not such a good idea. I kept trying to exercise, however, and it made me worse and worse, till it got to the point where I had no choice in the matter any more: I was bedridden most of the time. When I *was* able to go out, I couldn't do so without using a walking stick.
I also received a series of counselling sessions. The relaxation and visualisation exercises were fine, but the attempts at juggling disorientated and exhausted me. I never did learn.
In 1995 I was persuaded that I should stop using my walking stick and "think positively" and not "buy into" my condition. I struggled for about two months, but eventually had to go back to using the stick, as not only was my balance dangerously bad, but also the sheer physical strain of trying to walk unaided was making me worse generally.
That year I also followed a course of CBT. It did help me come to terms with the fact that I might never be well enough to work again (not a joyous realisation at the age of 40) and helped me cope with my handicaps, but I also eventually noticed that I was overdoing things physically - because I was trying to ignore my limitations, of course. To me, that is the worst danger of CBT when it comes to illnesses like M.E.
A couple of years later I managed to get a prescription from my GP which allowed me to have a discount when paying for a block booking of sessions at the local Fitness Centre. The first stage of the regime was using a treadmill and exercise bike. Total disaster. I had to give up, it was making me so bad. (I lost my money, including what I paid for the compulsory trainers, which were no use to me otherwise!)
The routines I have been taught over the years by physiotherapists (who were cognisant with the effects of M.E.) have been useful - but these involve very gentle exercises and stretching - nothing like Graded Exercise.
I know from hard experience how damaging pushing oneself both mentally and physically can be. I still overdo things, because, when I'm "well" enough, I keep trying. I still hope that eventually it will help, but after 12 years, common sense tells me that this is wishful thinking.
I tried a weekly water exercise class starting at 15 minutes. The chemicals in the pool made me violently ill (nausea and vomiting) and the exercise made my ME symptoms worse. The muscle pain, weakness, sore throat/glands grew every week and although I stopped and started at an easier level it was impossible to continue.
I find the sea a better option but I am too weak to do this safely without help.
Name: SG Country: Australia
When I was severely ill, and when I am in relapse mode, I can do little more than move from the bed to the couch. But on days when I can, I have to do some exercise, very carefully being aware of the signals that tell me to stop.
Interestingly, I've found that the type of exercise I can do is extremely limited. I can walk slowly for a varying length of time with rest breaks, and I can swim slowly. I've also tried yoga and pilates, but both send me into relapse.
Name: Rose* Country: Australia
Many years ago, when I was only moderately ill with ME/CFS I tried a series of graded exercise therapy at a highly regarded private hospital down here.
The first time I was inpatient for 4 weeks and then an outpatient for about 6 months. This occurred directly after a long series of debilitating infections had finished, and I did indeed appear to get somewhat better. At the time I was very excited and positive about it all and thrilled at what seemed like it could be the start of getting my life back. I gave it all I had and the practitioners were supportive and helpful most of the time.
Unfortunately, after that first success I kept sliding back down the slippery ME/CFS slope to illness and four further attempts gave me ZERO further relief.
My personal theory is that I was debilitated after the infections to a greater degree that the ME/CFS was acting, and it was this short-term weakness that I overcame with the GET. Certainly when I tried again and again afterwards, working just as hard and with just as much enthusiasm (after all - it had seemed to work the first time!), nothing at all happened.
Actually, after it became obvious that I *wasn't* improving on subsequent visits the staff at the facility got quite nasty, telling me I needed to have "a good hard think about my motivation" and similar idiotic bull**** implying and flat-out stating that I wasn't trying hard enough, basically.
I have walked for years and continue to try to walk now but the side effects are not worth it at this point. Hopefully, someday, I can enjoy it again.
Name: [Name supplied] [Online]
I am writing to tell you what 1 know about Dr Trudie Chalder. She was consulted about the treatment of my son whilst he was in hospital. My son, who is 20 now, was admitted to a hospital in the District for rehabilitation with his ME. He was severely affected and bedbound and unable to care for himself. Since his discharge I have obtained the medical records and I can see that the consultant in charge wrote to Dr Simon Wessely for advice. I presume he referred the request to his colleague Dr Chalder. On my son's hospital file is a document, dated 07-03-01, a ‘Draft Action Plan Proposal following consultation with Trudie Chalder’ which I attach. I find the action plan shocking, and I was particularly disturbed by the penultimate paragraph which states:
"We expect (name) to protest as well as the activity causing him a lot of pain. This may result in screams. .. . it may feel punitive. "
What I witnessed in the hospital was certainly punitive and I often saw him handled roughly and his skin marked.
This plan has never been discussed with me. I was unaware of it's existence, in fact when I spoke to the consultant asking where he was getting his advice about treatment for ME he refused to tell me. I never gave my consent to this action plan.
There was a parental meeting about physiotherapy being painful, and I was specifically asked whether I consented to this. At the time I understood the question to concern normal physiotherapy, and did not realise that I was being asked to consent to a painful psychological action plan, in the file is a note by the physiotherapist stating that pushing into my son's contracted hamstring would cause pain. He was told "that is the point".
I believe this explains why my son was never offered pain relief; and although 1 asked for it several times I received no response, There were a number of painful incidents; he was found bleeding from the stomach in February 2001 and duodenal ulcers were detected in September 2001. He also had surgery in September 2001.
On 18 April 2001 I wrote to the consultant about the pain my son must experience in having a naso-gastric tube frequently inserted. I reported that it had been reinserted 11 times in the previous 7 weeks and asked if steps could he taken to avoid the frequency of such an invasive procedure. 1 have no record of receiving a reply.
The Action Plan also accounts far the diagnosis of "elective mutism" which was then applied to my son. This in itself has caused him great harm both before and after his discharge as everyone treats him as though he is refusing to speak. Community speech therapists have refused to work with him on the basis that he might "not be compliant or not in the mood". After three referrals one did visit him once but she appeared to have been warned by her medical director not to put anything in writing, for fear of challenging that diagnosis.
During his time in hospital all the other young people on the ward were continually told that my son could speak, and could move, but was choosing not to. They would frequently ask me why he chose not to speak. The nurses would say, "It's a lovely day, what a pity you're not out there", as though he could be if he wished. Day after day he was treated this way.
He was admitted to the hospital on 14 December 2000, initially for a three-month assessment. At the family meeting on 25 January 2001 it was stated that the final review would be on March 15 2001 and if there was no progress towards free communication a discharge plan would be agreed with the family. My son's lack of speech was clearly seen as the most serious of his disabilities.
In the file is the occupational therapy review dated 15 March 2001 recommending, "Team to debate the approach following recent consultation with ME specialist", which I presume refers to Dr Chalder. The occupational therapist then appeared to take on the role as lead therapist. There is a record of a confidential meeting on 31 May 2001, which agreed to continue with the behaviour programme. It states that, "The Chronic Fatigue Service believe that this (exercise programme) is not to prevent contractures as (name) is moving and being moved enough to otherwise prevent this, but to pursue exercise to the point where he resists." The service referred to above is the one at Kings College Hospital.
At a team meeting on 28 June 2001 a provisional discharge date was set for August. In the event he was not discharged until 10 January 2002.
Until discharge the behaviour programme continued to be increased and I attempted to resist this. I wrote to the consultant and eventually complained that it was too much for my son. The response was to increase the programme further. The consultant stopped speaking to me on the unit. I then discovered that he had behaved unprofessionally because in a referral letter he stated my son was suffering from "pervasive refusal syndrome", which had never been said to me. I then realised I had been completely left out of the loop identifying my son's illness and his treatment, l complained to the Chief Executive of the hospital Trust. An investigation was promised but this never happened.
The hospital did not want to discharge my son home. They tried to refer him to two brain damage units who would not accept him, as they were not appropriate referrals. Finally a letter was written to the consultant from the House of Lords, urging him to allow my son home. Coincidentally he was discharged home soon after.
The issue of my son's consent is frequently referred to in the notes, and it is clear throughout that they did not have his consent.
This unfortunate history is a case study of what can happen when diagnosis and treatment are not discussed with the patient and his family. There was no consent to the "treatment" which caused pain and suffering. I believe that the action plan had the effect of making staff who carried it out indifferent to my son's pain and safety. He was treated with less and less respect the longer he was on the unit, not least because he failed to respond. The longer this went on the harder they tried to make him respond. By the end he was not being treated with any respect. I believe therefore that the action plan devised by Trudie Chalder was harmful and posed unacceptable risks.
There was no appraisal of evidence as to whether or not the programme was working. It is not in dispute that my son made no improvement at all during the 12 months spent in that hospital I believe Dr Chalder has stated that
" parents... hold physical illness attributions resulting in them searching for a specific physical cause"
The implication is that to do so is both unhelpful and wrong. She must be asked to what she attributes the illness.
The approach of Dr Chalder and the Chronic Fatigue Service is diverging from Department of Health policies, like the expert patient programme, and the Report of the CFS/ME Working Group to the chief medical officer, which recommended that management should be undertaken in partnership with the patient, and should be applied flexibly in the light of their clinical course. Please note that she resigned early from the working group, as she did not agree with the findings.
An action plan, such as the one attached, is not respectful of the patient, could not be discussed with the patient, or carried out in partnership. It is not good practice to cause patients "a lot of pain", I question whether it is ethical, indeed it may be unlawful.
May I draw your attention to the controversy raging at which Dr Chalder is at the heart. She and colleagues published an article in the BMJ in September 2003, "Epidemiology of chronic fatigue syndrome and self reported myalgic encephalomyelitis in 5-15 year olds". This has been followed by a stream of incandescent correspondence. (bmj.bmjjournals.com/cgi/eletters/327/7416/654#36770).
Articles in the press, such as the recent one in the Times "Chronic Fatigue Syndrome : Tired or emotional?" September 27 2003, echo the row going an in the field, Dr Chalder's position is extreme and I hope the Department of Health will consider carefully whether it wishes the Chronic Fatigue Service, of which Dr Chalder is a member, to have any role in proposals for new services for patients with ME.
Name: On behalf of EAN PROCTER [Online] Country: UK
‘Without ever having spoken to his parents, social workers supported by psychiatrists and armed with a Court Order specially signed by a magistrate on a Sunday, removed the child under police presence from his distraught and disbelieving parents and placed him into "care" because psychiatrists believed his illness was psychological and was being maintained by an "over-protective mother". Everything possible was done to censor communication between the child and his parents, who did not even know if their son knew why they were not allowed to visit him.
In this "care", the sick child was forcibly thrown into a hospital swimming pool with no floating aids because psychiatrists wanted to prove that he could use his limbs and that he would be forced to do so to save himself from drowning. He could not save himself and sank to the bottom of the pool. The terrified child was also dragged out of the hospital ward and taken on a ghost train because psychiatrists were determined to prove that he could speak and they believed he would cry out in fear and panic and this would prove them right. Another part of this "care" included keeping the boy alone in a side-ward and leaving him intentionally unattended for over seven hours at a time with no means of communication because the call bell had been deliberately disconnected.
The side-ward was next to the lavatories and the staff believed he would take himself to the lavatory when he was desperate enough. He was unable to do so and wet himself but was left for many hours at a time sitting in urine-soaked clothes in a wet chair. Another part of the "care" involved the child being raced in his wheelchair up and down corridors by a male nurse who would stop abruptly without warning, supposedly to make the boy hold on to the chair sides to prevent himself from being tipped out; he was unable to do so and was projected out of the wheelchair onto the floor, which on one occasion resulted in injury to his back. This was regarded as a huge joke by the staff.
In a further medical report dated 5th August 1988 for Messrs Simcocks, Wessely expressed a diametric opinion from that of Dr Morgan-Hughes, writing: " A label does not matter so long as the correct treatment is instituted. It may assist the Court to point out that I am the co-author of several scientific papers concerning the topic of "ME"….I have considerable experience of both (it) and child and adult psychiatry (and) submit that mutism cannot occur (in ME). I disagree that active rehabilitation should wait until recovery has taken place, and submit that recovery will not occur until such rehabilitation has commenced……..it may help the Court to emphasise that…active management, which takes both a physical and psychological approach, is the most successful treatment available. It is now in everyone’s interests that rehabilitation proceeds as quickly as possible. I am sure that everyone, including Ean, is now anxious for a way out of this dilemma with dignity".
Ean Proctor was kept in "care" and away from his parents for over five months. Although this took place in 1988, such brutality is still happening in the UK: the continued barbaric "treatment" of sick children by certain psychiatrists who profess to specialise in ME was the subject of a Panorama programme transmitted on 8th November 1999 and was profoundly disturbing (a videotape recording is available).
Nothing seems to have been learnt from the appalling case of Ean Proctor and there is no question that children with ME continue to be forcibly removed from their parents and home; this issue was raised by Dr Nigel Speight, a consultant paediatrician at the University Hospital of North Durham with 20 years experience of children with ME, who in April 1999 reported to the Chief Medical Officer’s Working Group on "CFS/ME" that the frequency of psychiatrists diagnosing the parents of children with ME as having Munchausen’s Syndrome by Proxy now amounted to an epidemic. Jane Colby, Executive Director of The Young ME Sufferers Trust (TYMES Trust) says "To have your sick child taken from you, to be suspected of damaging them yourself, just when they most need your care, is an appalling experience".
The Ean Proctor Story
Ean's Story by Barbara Proctor, Ean's mother
Ean's case is also mentioned in:
To set the record straight about Ean Proctor from the Isle of Man By Eileen Marshall and Margaret Williams, 20th July, 2005
Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base. Comment by Professor Malcolm Hooper & Horace Reid, January 2006
Another Meadow? by Eileen Marshall and Margaret Williams, 16th July 2005
Considerations of some issues relating to the published views of Psychiatrists of the Wessely School in relation to their beliefs about the nature, cause and treatment of myalgic encephalomyelitis (ME) by Margaret Williams et al. 16th January 2003
Name: A.H. Country: UK (from the RiME website)
Before March 1994 I was fit and healthy and employed as a Head of Year and PE / Maths teacher who led a full and active sports life. On 8th March 1994 I suffered a strange debilitating virus which eventually became so bad I was unable to work, (incidentally, there was a cluster of cases of M.E, affecting to varying degrees, a number of pupils at the school.) I paid for tests to be undertaken privately and these proved that I was suffering from Post Viral Syndrome, following Glandular fever. The NHS solution was that nothing could be done but it probably go within two years, which I refused to accept and set out to find the solutions privately.
During the following three years I deteriorated until in 1997 I was reduced to crawling to the toilet, being carried downstairs and spending the day lying as still as possible due to severe agonizing headaches. In addition 1 suffered from terrible weakness, muscle aches, severe dizziness, blurred vision, sore throats, sweating and shivering, swollen glands, highly light and noise sensitive and digestive problems. I was barely able to sit up to eat, unable to watch TV or even converse for more than about 5 minutes,...
Every day, seems like eternity, spent enduring pain, feeling so ill, like your blood has been poisoned, with the frustration of being trapped inside a useless body, unable to concentrate and needing assistance to do the most basic tasks. For a couple of months I suffered the humiliation of being unable to feed myself. Whilst I am able to do this now I still need help to get to the toilet, to wash and dress etc.
it is like the seasickness adage. First you feel so ill that you are afraid your going to die and then it gets worse and you are afraid you are not going to die. I and most other sufferers, adopt a determined, positive and proactive attitude, which no doubt contributed to ME in the first place. Merely surviving these eight years of hell has been a far greater achievement than any of my academic qualifications, sporting achievements or job promotions.
Over eight years I have spent thousands of pounds, in vain, seeking a solution from many sources including ME Consultants, Acupuncture, Osteopathy, Homeopathy, Herbal medicine, Nutritional therapy, Kineseology, Hypnotherapy, various healers, very many nutritional supplements. Immunogiobin, B12 and magnesium injections with little or no help from the NHS.
Governments, researchers and fundraisers need to realize that it's not just about saving lives but quality of life and that with severe ME this is zero. Society would not let animals go through such suffering and incapacity but ME sufferers are left to exist in a "living death" state for years sustained only by the distant ray of hope of recovery and a positive attitude that keeps you fighting and thinking that it's got to get better soon even after 8 years of disappointments.
Insult is added to injury by the fact that some people still believe a bit of graded exercise and some positive thinking is all that stops sufferers getting well. I used these methods to recover from an accident when 1 received 25% bums but with ME this results in deterioration rather than increasing my capacity If only that was the answer I'd never be in this hell I'd have been well years ago enjoying a wonderful life that 1 had before ME.
It is a disgrace that there is no government funding research into aetiology of ME, (the only fundmg is provided through charities and donations, for an illness, which affects an increasing number of people of all ages, usually the very active) I urge you to ensure that this criminal neglect is ended now with desperately needed funded research into Neurology, Immunology, and other areas of dysfunction Severely affected sufferers must be included in any study, not just those well enough to attend the trials.
Name: N.B. Country: UK (from the RiME website)
When first ill, after two and a half years in bed, I spent six and a half months in a psychiatric ward - the only help they offered on the NHS, I did graduated exercise and CBT, It did not cure me, I am still badly disabled with ME after 12 years and use a wheelchair,
Name: J.W. Country: UK (from the RiME website)
I am writing in great despair. 1 have been a M.E sufferer (Myalgic Encephalomyelitis) now for 14 years. I have had this since the age of 16, I am now 30 and have had my life ruined and taken away by this very misunderstood illness. I live day to day trying to cope with an array of symptoms and as there are no doctors who really know how to help or even all the symptoms you can suffer from.
1 know there are many people worse off than myself, but that does not give the Government the right to make no effort in funding any sort of medical research, to find a cure for M.E sufferers and for us to be treated like second class malingerers by the doctors We all need help to find a cure for this covered up illness now. Why should we have to suffer in silence alone'
Many M.E. sufferers have taken their own lives through sheer despair and I have the lost a wonderful friend to this and do not want to lose any more before you realise how awful this illness is. I suffer from breathing difficulties, heart irregularities, confusion, pain, muscle weakness, head pain, swollen lymph nodes, fevers, sickness, dizziness, severe unreality, shaking, have to use a wheelchair when I'm out and am pretty much housebound, This is some of the symptoms I suffer I want medical funding for research. It is my right and I want it before the next 15 years of my life are ruined.
Name: R.I. Country: UK (from the RiME website)
The exclusion clause, " ... but with the exception of psychiatry . " in your petition, appealing for a co-ordinated research progamme into the aetiology (underlying causes) ofME. begs the question why psychiatrists should be involved in the treatment of people with M E , unless they have a history of, or a concomitant, psychiatric illness. It is understandable that people with M.E. are fed up with the loss of career (or interruption of education in children), reduced standard of living, social isolation and fractured relationships, sometimes compounded by disbelief & derision, on top of the discomfort of the illness, but this is not the same experience as clinical depression, which is not thus explicable.
Of course, some people with M.E. may have depression, or some other psychiatric illness, but the one is not a prerequisite for the other.
Since M.E is classified as a neurological, not a psychiatric or mental illness, it may, at first, appear hard to see why psychiatry has taken such a dominant role in research and treatment.
A significant reason for this may be the influence of the report from the Royal colleges of Physicians, Psychiatrists and General Practitioners in 1996, since when Chrome Fatigue Syndrome has been widely thought of as the official name. Why CFS should be the preferred term has never been made clear by those who said it should be so.
Chronic Fatigue Syndrome is an umbrella term, under which a number of illnesses, in which chronic fatigue is but one symptom, are contained, ME. is much more than mere tiredness The terms are not interchangeable as putting a / between them suggests.
Since we are not talking about the Same illness, there ought to be different research strategies and the treatments suggested by findings as suitable for one condition, for example graded exercise or cognitive behavioural therapy, may not be suitable may even be harmful - for the other.
Thanks for your initiative [RiME], from all with ME but in particular on behalf of those who are so severely affected that they remain isolated, invisible, without a voice and, in spite of receiving particular mention in the CMO's Report, are still neglected
Name: P.L. Country: UK (from the RiME website)
As a social worker, I have met several people with this illness, I was very surprised to hear that the Government is funding no research into its underlying physical causes.
In addition to the human suffering there is the question of cost. ME currently costs the country over £4 Billion pounds per year The state has a duty to investigate. What is behind this much misunderstood illness and enable people to improve / recover so they can resume a useful role in society.
The small sums of money which up to now have been spent on psychiatric models of treatment are not working and are inappropriate.
Name: Clair Coult
I was diagnosed with ME when I was 15 years old. I am now 30 years old. When I was 21 years old I saw a doctor at my local hospital's Pain Clinic. He did a brief examination and declared that I didn't have ME anymore and that I was unfit. The only way I was going to recover was if I did a course of physiotherapy. I knew he would label me a fraud if I didn't attempt it so against my better judgement I agreed.
At this time I was using a wheelchair outdoors and a walking stick indoors. My symptoms were quite severe and fluctuated a lot. The course of physio involved going the to the local hospital (using volunteer transport) twice a week to do a set of exercises. The transport arrangements were not well organised and I was often waiting up to an hour to be picked up or taken home.
I was given two pages of exercises to do. They were apparently the simplest and easiest they did. At my request I was supervised by an assistant physio, I would have been expected to complete all of the exercises on my own.
The exercises comprised of:
Sitting with 1KG weights on my ankles, raising and extending my legs for 10 repetitions.
Raising my arms above my head for 10 repetitions.
Raising and lowering my shoulders for 10 repetitions.
Holding a stick with both hands, extending arms and raising it over and behind my head.
Sitting on a wobble board and rotating my hips for 2 minutes
Standing at the wall bars and raising each leg behind me and to the side, for 10 repetitions of each.
Plus quite a few more exercises I can't remember the details of at the moment.
I was expected to complete all of the these exercises in the first sessions and increase the number of repetitions each session after that. In the first session I was unable to complete all of the exercises, I had to do the standing exercises laying down as I could not stand for that long. when I was taken home I collapsed through the door. I managed to crawl across the floor to the telephone to call my mother for help. This happened after each session.
The volunteer driver who took me to the hospital asked me one day what they were doing to me because they were making me worse not better. Over the 5 weeks that I did the physio my ME became much worse. I had no quality of life, I was just eating, sleeping and doing physio. I [was too ill] to do anything else. My pain had significantly increased and my mobility decreased. After 5 weeks my husband wrote a letter to the hospital telling them how ill I had become and that I would not be going to do physio anymore.
I saw the doctor at the pain clinic a couple of months after that for a follow up appointment. He mentioned the physio and his only comment was "I'm surprised you lasted that long".
Since then I have learned to pace myself and limit my activity and even though I am still quite severely affected by ME I have been stable for several years.
Name: Ken Country: Australia
I'm trained as an Occupational Therapist, so I was skilled in using graded exercise (or activity) therapy. However, even with my skilled background, it took me seven years of trial and error to get my activity balance close to right. Even now, it is a tightrope as precarious as any I have walked, and there is no safety net.
For me the critical issue is recovery time, both on the micro and macro levels. I dare not do the same activity (i.e. walking) every day. I am less prone to crashes and flare ups if I use a variety of different exercises (walking, swimming, weights and bouncing on a swiss ball). I do better if I break my exercise and activity into small chunks (10 minutes) with rest in between. I am severely affected by the total amount of activity I do in a set period. I can do a full days work once a week with almost no ill effects. Two days pushes me to the edge. If I am foolish enough to do three, my wife begs me to stop, and a relapse lasting 2-3 weeks is assured.
I cope with "sedentary" activity much better if I take 3-5 15 minute absolute rest breaks spread throughout the day. From watching and working with others with CFS, I know I am actually a "lucky one".
There is good CBT and bad CBT. The critical difference between the two is the issue is control. In spite of what many esteemed professionals think, most PWC's know their condition better than anyone else. Most tend to overestimate their capacity. CBT or GET that pushes a PWC is likely to fail, through relapse, withdrawal or refusal. Sensitive, responsive therapy may help, but lets be realistic here. Any gains made are likely to be modest at best - if you doubt it, look at the research.
Scientists get excited about "statistical significance", but the actual size of this difference is always small, if it is found at all.
Name: Sue Country: UK
I'm Sue, mum to Lauren 19. who has been ill for 8 years. Lauren isn't well enough to write herself so I hope you don't mind a second-hand account.
Lauren was disbelieved by the first paediatrician she was referred to at age 12. This woman told her to do as much as she could, to get up at her normal waking time for school and then to go to school as normal. The second consultation a year later saw us berated as a family for "giving in" to Lauren and the implication was that she was school phobic or being bullied.
We were told to increase the activities she was doing and she would soon get better. I guess this isn't classic GET but the effects were the same – a total and utter " crash" which means that Lauren is now mostly bed bound, housebound and has to be helped to bathe (and sometimes to eat). I enclose an extract from a letter of complaint we sent for illustration:
"During that meeting our whole family was distressed by the inferences that Dr. xxxxx chose to draw in order that she might explain Lauren's illness. We were told that Lauren, being an only child and attending a fee-paying school, meant that she "was under a lot of pressure to succeed" and that anxiety could be manifesting itself as these physical symptoms. She went on to say that if Lauren failed to "progress" with encouragement to do things and get on with life, then a spell on a ward for some psychological therapy would be suggested. We felt this was extremely intimidating and unhelpful.
Lauren was diagnosed two weeks later as having M.E., after our GP agreed to refer her to a paediatric specialist in Myalgic Encephalomyelitis. He recognised the very real and very physical symptoms for what they were and are. Over the seven years in which she has been ill, her health has deteriorated to the point where she has to use a wheelchair if she leaves the house. She receives Disability benefits and is very limited by her illness."
I know of other cases similar to Lauren but don't know whether their parents are up to writing.
Name: Rhonda Country: Australia
When i first got sick with me/cfs in 1992, after a flu type virus, (and I was painting) i did try to do walking, as i had been doing it before i got sick. each time i would do it, i would get sicker. and i did not make improvement until i stopped. and actually did less. i was able to go into 100% remission from this illness, after two years, taking nothing but antihisitmines. and i don't think they helped. i think the rest did.
i got a tummy bug in 1998, after christmas, me.cfs came and grabbed me again on the 28th December. i tried to push on this time as i had got well before. i kept getting sicker and sicker. i tried walking, to the corner. And further. but i had to get my husband to come and get me.
I have improved quite a lot since a few years ago, but that was done through medication, pacing, and management. I am active now & I cannot see that it is has helped me in anyway at all. i still have a sore throat, am limited in what i do, suffer huge set backs, in actual fact, i find that the more i do, on any day, i actually feel worse i am still in the process of cutting back on what i do.
most people want to do more, not less.
A person not knowing anything about ME/CFS should never be allowed to put [treatments] into place. if someone does not realise that sitting in a chair, is the first step, and does not realise how hard this is, and may even make things worse, then they do not know what cfs is. it must be considered and accepted that this illness is unique, in that post exertional malaise is a symptom. and that some people are severely bed ridden.
Name: [Name supplied] Country: US
Exercise intolerance means just that.
Name: Jodi Country: Australia
If exercise helps, you never had M.E. I had a mild/moderate case of ME initially....if only I had known to rest instead of to being advised to exercise as much as possible that might still be the case. Or I might even have improved somewhat, or even be leading a somewhat normal healthy life.
As it is I now have extremely severe ME. I haven't been able to leave my house in a year (except for a trip to the emergency room for what turned out to be potentially life-threatening cardiac problems) and I have been almost completely bedbound now for the last 5 years and need carers to help me with the tasks of basic living - I'm only 29 and life for me now is just a living hell.
Whatever you do if you have ME DO NOT exercise past your limits, particularly in the early stages. There is evidence that if you do you can cause yourself serious and permanent damage (damage to the heart for example).
If exercise helps then you never had ME in the first place as a complete intolerance to even mild exercise IS WHAT ME IS. So any claims that exercise can improve the condition of a person with ME are fatally flawed. All of them. Studies showing improvements patients who increased their exercise levels DO NOT CONTAIN ANYONE WHO ACTUALLY HAS THE ILLNESS MYALGIC ENCEPHALOMYELITIS. Many researchers, looking at how patient populations are chosen for these studies agree such studies are on those with chronic fatigue and not ME - in other words they have a completely different illness. No study has ever shown CBT or GET to be in any way helpful – or even safe – for patients with ME – NOT ONE. A large body of evidence also exists which shows how harmful or useless these approaches are for ME.
Please, if you have ME, rest - it's your best chance to get at least some of your life back.
It is bad enough any lives have been devastated as mine has been (or worse) by ignorant advice to exercise, but it kills me this is still happening despite so much evidence contradicts these very poorly designed and flawed studies on tired people who do not have ME. Nobody seem to care how utterly unscientific this ‘science’ is and people with ME are paying the price for that; a horrific price all just to save the Government and others a few dollars. It makes me sick.
Name: [Name supplied] [Online]
"I was in the prime of my young life when I became ill. I had a successful career, relationship, active social and sporting life. It was all lost at a promising point in my life. Now over 14 years later I am still too ill to regain any of it.
I was referred to take part in the CFS clinical trial (they didn’t believe in the term ME, or that a distinct illness of ME existed) at Withington hospital in the early 1990’s after I had experienced almost two years of continuing ill health following a sudden viral illness.
I first saw Dr. Richard Morriss (who was a senior registrar in psychiatry at that time - now a Professor at Liverpool University I think) who took my history and a number of blood tests.
He was very interested in the ‘mental’ symptoms and dismissed others that I felt were important which he obviously did not. I was subsequently enrolled in their study of antidepressants and Graded Exercise Therapy (GET).
Dr. Pearson passed through the room during this initial consultation and was very derisory about Clare Francis, the ME charities and the term ME itself. (Clare Francis is the Round The World Woman Yachtsman, an ME sufferer herself.) This was the only time I saw or had any contact with Dr. Pearson.
I was led to believe that fluoxetine was a drug that would only be available to me if I took part in the study. I was never told at that time that I could have it (Prozac!) from my G.P. on ordinary prescription if I so wished at any time.
Because of this, I agreed to take part in the trial. I attended the clinic for 5 months at weekly and then monthly intervals. During this time I only ever saw Ricky Mullis (physiotherapist) and Alison Wearden (psychology post-graduate student).
I was given what I eventually discovered was a placebo and I was ‘encouraged’ to do more than I felt well enough to do. At each assessment I was required to go on an exercise bike for as long as I could. This did nothing for my state of health! Over three months I deteriorated considerably, became very frightened and eventually depressed (I wasn’t when I entered the study!).
I expressed this to Alison Wearden each time I saw her yet I was never referred to see any of the doctors despite my repeated requests for this to happen.
Eventually a relative of mine demanded we see a doctor and I said I no longer wished to participate in the study, as I was getting worse not better. Ricky Mullis (physiotherapist) vigorously tried to persuade me to stay on the trial regardless of my deteriorating physical and mental condition. I refused to do this and again demanded to see a doctor. I eventually saw a senior registrar in medicine. Only the second medical consultation I had received since initially attending.
I felt so ill and was so frightened and depressed that I was admitted to the hospital. The ward staff told me that only I could make myself better and ‘to get a grip’. On the ward I saw a senior registrar in psychiatry who prescribed a tricyclic anti-depressant, which he assured me gave me great hope of a recovery.
Whilst staying on this ward, I met two other people who had been diagnosed as having ME prior to attending the hospital, and they were told that if they did not take part in the trial, they would receive no other treatment, and so felt they had to take part to be able to do anything to feel better.
It was at this point I began to question the ethics and motivation of the study. After a few days in the ward, I had seen and heard enough and decided to go home!
A close friend at that time said all along the doctors and students running the trial were more interested in their research than they were in the welfare of the patients. I had not been depressed before I was ill or during the time I was ill until I attended the Manchester hospital. My own doctors would confirm this. I took the anti-depressants still believing that they would make me better. I returned to the outpatient clinic 6 weeks later, waited three and a half hours to see a house officer, who told me all my tests were normal and that there was nothing wrong with me.
As you can imagine, I was rather taken aback by this. I asked to see Dr. Pearson or one of the senior doctors. The house officer went off presumably to confer with someone else (Dr. Pearson I presumed), and returned to say that I could not see anyone else as I had chosen to withdraw from the study, so no further treatment was available to me.
I was given no further appointments, despite my insistence of how ill I still felt. The antidepressants did eventually lift the depression, but all my ME symptoms still remained. (I have not had any need for anti-depressants since this time and actually feel much better without them!)
In fact, my mobility was much reduced after attending this trial. Previously my mobility had been better than it was subsequent to my treatment in this Manchester Hospital and this condition continued for many years. (I now practice "pacing" proper and manage much better!)
So their ‘treatment’ left me worse and more debilitated than I was before I entered the study! I felt there was no concern for me as a human being and there was no further contact with me to see how I was doing, except a request some years later for me to take part in further research, which as you can imagine I quickly declined!
After this I began to hear from others their experiences of this same research team and became increasingly alarmed about what was occurring. I began to see many flaws in their trial. People enrolled in the trial were allowed to continue to take other treatments and to have other therapies, such as acupuncture and homeopathy independently, during the trial period. The doctors knew about the patients having other treatments independently during the trial period and yet these patients still remained in and were part of the trial and its results.
This negates the whole purpose and the validity of a randomised, double-blind, placebo controlled trial and therefore the results. I am therefore astonished when I see that the results have been published in a reputable journal * and are frequently quoted in other work.
I also became aware that there were a broad range of patients and conditions being enrolled in the study. It was clear that people with ME were being enrolled, but also others with other "fatigue" states of a variety of aetiologies. The CFS trial appeared to be an ‘umbrella’ including anyone who reported "unexplained fatigue" or "an absence of any signs of physical illness" (their words not mine).
I became aware of people with ME who were being prescribed 20 minutes exercise three times a week and who were also getting worse not better. My own doctor was amazed at what I reported to him about what was happening at this Centre. He stated that if he had known, he would never have referred others there. My own doctor was outraged at what had occurred. He has remained adamant that I had a genuine physical illness and that I was never ill through psychological problems or depression.
I never complained at the time, as I was so ill. It is only with hindsight that I can see what was happening was not helpful or useful and indeed damaging to some people including myself.
This was a teaching hospital and a so-called Centre of Excellence. It is therefore a scandal that this trial was conducted as it was and that the results were published and taken seriously by others in the medical profession when there was so many flaws within it and extremely poor and disrespectful treatment of patients. It was poor scientific research with no concern for the patients involved.
As patients, many people place their trust in doctors to help them recover. They do not expect disrespect or for the treatments to make them worse. A sick patient probably never contemplates that a doctor or their prescribed treatments will do them more harm than good!
As a result of this trial, I would be reluctant to take part in any other clinical trials and would advice others to proceed with caution. This trial has done a disservice to medicine as a whole and to patients.
I am therefore annoyed every time I see this trial quoted as published research as I know that what went on was not good quality research. It had many flaws.
With regard to their published findings, so much for their commentary (regarding high drop-out rates) that "Of the 21 drop-outs assessed at 26 weeks, there was no worsening of fatigue, functional work capacity, MOS health perception or depression" and "graded activity may provide patients with reassurance that exercise at a controlled rate need not exacerbate fatigue"!
I know of at least three others who were in the exercise group that were made so much worse!"
Wearden, AJ., Morriss, RK., Mullis, R., Strickland, PL., Pearson, DJ., Appleby, L., Campbell, IT and Morriss, JA. Randomised, double-blind, placebo-controlled treatment trial of fluoxetine and graded exercise for chronic fatigue syndrome. British Journal of Psychiatry, 1998, 172, 485-490.
Name: Karen Country: Australia
i have had CFS since late 97 which became worse after a bad flu and pneaumonia in early 99. i was also nursing my mother who was dying of multi system atrophy. I was diagnosed with FMS later that year and was told to see a phisiotherapist, she started me on 10 sets of 10 basic stretch exercises.
after 1 week I was in so much pain that i would grit my teeth and cry after exercise every morning and have to go back to bed for most of the day. after 2 weeks i cut the exercises to 5 reps and found that i
couldn't do anything else during the day, i was showering twice a week with help and had trouble even getting to the toilet.
i stopped exercising totally for a week just so i could get to my appointment, when i got there she told me no pain no gain and she wanted me to continue and then to start gym work in a fortnight or I'd never
get better. I never went back.
it took me months to recover enough to do a few things for myself and my pain has spread to most of my body now instead of just my back,shoulders and head.
Name: Brooke Country: Australia
If it weren't so expensive, it would be laughable when doctors tell you that there's really nothing that they can do for you (except to recommend plenty of rest and pacing of activity) and then in their next breath turn around and schedule another appointment for you to come back and see them! As if you're going to pay another $100+ to be told the obvious?
It is ironic that doctors think that someone with M.E. needs to be TOLD to rest and not engage in too much activity; that we need this golden piece of professional advice (as if it hadn't already occurred to us ourselves!)! For someone with severe M.E, isn't it kind of obvious that even if they wanted to, they COULDN'T do anything but rest! And the notion of 'pacing' your 'activity' levels! It's absurd. When I was at my most ill with M.E. my activity level was limited to things like sitting up and brushing my teeth- even then I couldn't do that without rest breaks! Pace my activity levels? "Gee doc, thanks for that great advice, I would never have known..."
What do doctors really think 'pacing' 'activity' levels is for a person with M.E (in as much as, that they feel that they need to TELL us to do these things)? Do doctors think that we have to be TOLD not to engage in 'too much' activity?! It's not like you can pace activity when your body won't let you engage in activity in the first place! It's not like we're small children who need to be told to "slow down, don't eat too much or you'll make yourself sick". Our bodies have already put in place a mechanism that makes it physically impossible for the severely ill to do too much in the first place! We can't pace that marathon in order that we get to the finish line, because we can't even stumble up to the starting line!
When I was at my worst with M.E, all that my body would allow me to do was rest.
Name: Erik* Country: Switzerland
I am writing in behalf of my son (16 since 2 weeks), ill since december 2003 (eg. almost 18 months now), just got a week ago a diagnosis from a brave pediatrician, not yet acquainted very much with cfs/me and ready to read through all this documentations (canadian guidelines, etc. etc.). My son still being in danger of being harassed by schooldirector and child protection authorities and psychiatric clinic.
Was recommended a GET and behavioural therapy by the chief of a departement of children hospital. My son is homebound ever since he got november last a yeast treatment from a doctor (Perenterol), as of his most serious additional belly problems.
He does not think at all that this form of therapy will help him at all, as he sees already without this how little it takes to overexert himself (eg. the visit at home of a kind doctor), he does suffer serious post exertional malaise and eating is getting always a problem.
I am writing you from Switzerland, where just a short time ago a professor published in the swiss medical weekly an article saying that cfs/me is a psychiatric disorder and closely relied to fear traumata, fear denial, depression and other crap.
I do know after seeing the condition and the changes therein for such a long time now and after running from doctor to doctor first, that the medical personal are to a big extent a very strange kind. (I am really so sorry to say!)
My son would state here that you also could treat a broken leg with psychiatry if you would not know better.
And that never a doctor would get the idea to send somebody with a broken leg on a marathon; something which seems to him would be a good comparision of what was asked of him sometimes!
He just was not taken serious till we were lucky to find this pediatrician now.
And what my son does not know, the authorities are still seeming to go on... I really hope they will understand!!!
Name: [Name supplied]
Aggressive exercise at pain center in Cleveland. Forced myself to follow their program. Exhausted, all pain & symptoms exacerbated. Never got back to my formerly low level.
GET: disaster for me. Despite tests indicating muscle metabolism abnormalities I was treated with this whilst an inpatient. Like others I was told I had to work through the pain and increased malaise. As a result I became more severely ill and disabled, pain levels went through the roof and ironically ended up with even weaker not stronger muscles. The muscles I use the most are the ones losing bulk and strength.
I was diagnosed in 1988 by someone who was studying CFS. He warned me back then already that exercise while the virus was active was not beneficial. I proved it to myself that if I did a little too much, even just once, I would get worse.
In 2001-2003, I saw a doctor who clearly knows nothing about CFS. I was assured that if I would exercise I would "feel better" and "have more energy". I tried it for a couple days, and again, felt worse. This guy is now petulantly telling disability that I'm still sick because I won't follow doctor's orders -- he can't accept that I am following some OTHER doctor's orders, not his.
Paul Cheney was interviewed in 2004 about a recent study showing 100% of disabled CFS patients have cardiomyopathy, apparently from the virus settling in the heart, and he made it clear that *fibro* patients improve with exercise (because they don't have this heart condition), but that CFS patients cannot exercise.
In googling to see what (if any) mainstream media exposure that research got, I found a 1998 article saying that Dr. Martin Lerner also found cardiomyopathy, and advises "resting the heart ... to prevent the death of cardiac tissue". This study "explains why patients relapse with exertion".
Just recently, after being reassured by one of the doctors that I'm suing that regular exercise would give me more energy, I decided to try it again, to document the results. Nearly a month later, I'm still in more pain, and instead of having more energy at the end of a week, I had to spend the weekend in bed.
Name: Cindy Country: US
I too was strongly encouraged by physiotherapists to exercise and insurance doctors said worse things to me about malingering etc. I am having serious heart problems now likely due to the excess exercise for a person who has severe illnesses that worsen on exercise. I am housebound and bedbound a lot with worsening conditions.
Name: Douglas [from Invest in ME]
I thought I'd give you an interesting update about what's been going on when I've visited the local ME centre. Last time I was at the centre the doctor was concerned about my heart rate, and thought I may have an underlying condition. He referred me back to my GP, and wrote a letter to ask the GP do some tests to rule out any heart condition. He said I would be seen again in three months for treatment for ME.
I went back to my GP, and he booked me in for a resting ECG, with a nurse (although I use that term loosely, as she didn't seem to know what she was doing!) from the practice. As you may know a resting ECG (especially with no input from a cardiologist) is prone to missing most heart conditions, and only lasts less than a minute. The ECG, as you can imagine, came back fine. I should mention that I am glad that nothing has shown up, as I don't need anything to add to my problems. However, the lack of proper investigation has shown the level of interest my GP has in my health!
I have been back to the ME centre now, and looked forward to some treatment for my ME. The doctor checked my heart again, and listened to my updated condition. He then offered me some treatments, saying: '...we take a pragmatic approach to treatments...and offer three...'
I decided to list the treatments for him, and said I wanted something that would actually work, or at least not make me any worse. As you know the centres offer CBT, GET, and adaptive pacing. This is due to the centre working in conjunction with St.Barts hospital in London; being involved in the PACE and FINE trials.
The doctor tried to extol the virtues of GET, at which point I pointed out that he was concerned about my heart rate, and yet he was asking me to increase it through exercise! As you know, there have been many reports, and surveys that point out GET most likely will make ME worse. He did mention that he didn't think I was suitable for psychological treatments, which I thought was a given for anyone suffering with ME.
I did ask the doctor if there was any possibility of seeing a Homeopath, Naturopath, Aromatherapist, Osteopath, Herbalist, or anyone else who could possibly treat my ME. He said that this wouldn't be an option on the NHS.
This is an interesting juxtaposition.
It is common knowledge that CBT and GET are not treatments for ME, and that people with ME learn pacing on their own (pacing is more of a survival technique than a treatment). There is no possibility of receiving any treatments that may do some good (probably because they are natural treatments, and are shunned by the health authorities), and so where does this leave me? I refuse to be subjected to treatments that will make me worse, and I am refused treatments that may ease my symptoms.
So the situation is this: I am (and have been) faced with a GP who is not interested in my health, and is rude and condescending. I have not received proper tests to determine my condition, and any additional complications. I have waited for over a year to be treated, and the only things I have been offered have been proven to be detrimental to my health. I have never been given any support or help by the medical profession, and have had to do their jobs for them; in finding out what I may have, and researching ME and possible treatments. I am left hoping that I may be able to be a test subject for a treatment (funded through charity, and nothing to do with the NHS) that I am so desperate for, I am willing to try anything that may work. If I cannot become involved with any trials that may occur, I am at a loss to know where to turn next. It is clear that hundreds of thousands of people are in the same situation as me, faced with no hope, no help, and uninterested medical professionals (I use the term loosely). It is also abundantly clear that the government has no interest in the people they are supposed to serve.
This is a telling lesson for anyone who thinks that their health is important to anyone but themselves, and that no matter what you do or if you try, no one cares.
Name: jundanj2* [Online]
Graded" Exercise Some days I can do more than others. Sometimes what I did 2 days ago puts me in bed today. I don't feel it's a positive since it only makes PWC's feel worse--mentally and physically.
Name: taxdoc* [Online]
Name: Claire [Online]
I attended a Cognitive Behaviour Therapist on the NHS as I asked about Gradiated Exercise. Sorry did nothing for my physical well being and not much for my mental state. I have always had the determination to go for it and will happily burn out doing exercise for the mental buzz of being back to normal for that instance. Daft idea, don't do it, you only regret it after (for days), listen to your body. No-one else can tell you if you [are well enough] for it at this moment in time. Cognitive Behaviour Therapy got me hooked on an unrealistic exercise dream it didn't take into account needing to walk to the nearby shop for milk (did this count as part my exercise time - I never felt so) or a bad nights sleep. It wasn't for me and while I'd love someone else to be in charge and say do this and all will be well my body does it's best to tell me if only I listened more.
Name: Angie [Online]
I have been working with graded walking as an exercise treatment for my CFS for 18 months now. I do not find it very helpfull at all. It does keep me moving and therefero I suppose keeps my joints from seizing right up but the exhaustion, malaise and worsening of other symptoms from the exercise make me question whether or not it is tryly worth the extrordinary effor needed to actually do it.
Name: Pauline [Online]
Tried a 10 minute walk. Loved the walk, however there is always a price to pay with CFIDS. By the next day, I was in terrible pain, and the additional, extreme exhaustion lasted two weeks.
Increasing exercise, even in times when I was quite well has always had bad effects. Had I only known that I had CFIDS some 20 years ago, I would have been a lot more careful about exercise. I never recovered from my last exercise, February 1998. Thanks to Dear Abby's second publication giving the details of this dreadful syndrome, I finally knew what I had. A little too late to helm me. Never rebounded and with each year becomes noticeably worse.
Name: Suzy [from Invest in ME]
‘A nasty deterioration started to set in quickly. Apart from other worsening problems that Suzy began to experience, she found herself needing to lie down for most of the day since any activity, physical or mental, was becoming impossible.
Less than a year on from the start of this bad deterioration, the illness turned into a nightmare of the worst kind.
The months dragged by. For the first two years they saw Suzanne deteriorating in her bed-bound existence, often unable to communicate (let alone hold a spoon) even by blinking or finger movement.
By the time 8 months had passed Suzanne could only manage to wake up for about 2 or 3 ten minute periods----- if we were lucky ----- out of each of the two separate hours in the day we chose to try and wake her. In order for this to happen Mum or Dad had to spend 3 hours sitting quite still and silent in the cold dark beside her bed.
Eventually (making it sound much simpler than the choice actually was) we decided to reduce this procedure to just once a day instead of twice, and to aim for one hour of time awake for Suzy between 7 and 8 in the evenings.
As before, Suzy would only wake up after Mum or Dad had sat beside her bed for 3 hours gently trying, very occasionally, to coax her out of her comatose state.
We gradually reduced this 3 hour period, but it took over 18 months (until around June 2004) of painfully slow improvement in Suzy's state, for us to dispense with it altogether.
Suzy's motivation for waking had always been that she was desperate to try to eat (even though this wasn't always possible), as she was so fearful of being tube fed as we were told must be the case----- just as she begged us not to let her be hospitalised, as this was also something we were facing.
(It's only by understanding gained from living with this condition that our desperation to keep our daughter at home could be understood.)
Suzy was in a "living death" state for the first two years after her illness became really severe. Many would still regard her as such since her condition remains very sad.
Even up to around October 2004, two people in the room or one person stringing more than three sentences together was too much for her. Thankfully, things in this respect have now improved. Though the two people are still mostly restricted to Mum and Dad, wonderful exceptions have begun to happen recently for 10 - 15 minutes later in the day.
Suzy's life was, and still is (except for her fans no longer being continually on), spent in a perpetually darkened, unheated, noise-free room. There are blankets over the curtains---- despite it being a north facing room; bedside fans are periodically on---- even though she only wears thin short-sleeved T-shirts all year round and; ear plugs in----- even though the room is in a very quiet location). (…)
There is a positive movement---- albeit inconsistent---- undoubtedly happening in Suzy's condition. In fact recently it is happening relatively quickly. We are just so frightened of when and where it might stop.
We feel this improvement has emerged because of our developing confidence in being able to reject [psychiatrically based] medical approaches to Suzy's severe ME, and to the departures we chose to make from these treatments. (…)
2. We were certain that the graded exercise program Suzy followed in the early stages of her ME was a big mistake. We had no hesitation in no longer sticking to any kind of graded exercise routine. Instead we took the approach of letting Suzy do what she felt she could do----- which for nearly two years was nothing at all. This is a second option we are convinced we made the right choice over.
3. Stopping the involvement of psychologists
A third decision we know to have been the right decision, was to stop the involvement of psychologists in an illness we are convinced is not psychological.’
Name: Emma [from Invest in ME]
This was the second paediatrician I had spoken to, the first wanted to repeat all the blood tests from a few weeks before, and was suggesting anti-depressants and a hospital stay before he'd even seen her. Emma was now so noise sensitive that I couldn't listen to the radio at home and the thrice-daily playtime at the nearby school would reduce her to tears. She was also very light sensitive and had the curtains permanently drawn. Bright lights or sunshine made her to weep with pain. Hospital would be agonising.
We borrowed a wheelchair from the Red Cross, bless them, to get to appointments, and to escape from the flat we went out using my new toy, a bat detector. Fortunately there was a roost just up the road that was accessible by wheelchair and bats like it quiet and dark too.
Some time around May or June 2003 I got a letter from social services asking me to contact them. In my innocence I thought it was a follow up to our claim for DLA (Disability Living Allowance), so from the disability team offering support. Not a bit of it, my sister had reported me for suspected Munchausen's by Proxy. The fact that she hadn't seen us for two years hadn't held her back. So to add to the difficulties of dealing with the school, the benefits system, a paediatrician from hell and a sick child, I now had to deal with a social services investigation. Fortunately, I laughed it off and suggested they check their files - we'd been there before when I wouldn't play ball with my dysfunctional family and that social worker had decided that I deserved sympathy: she found my family overbearing. I heard no more about the investigation, just silence. But it meant that I felt as if I couldn't contact Social Services for support in case I reopened that particular can of worms.
We also had a visit from the medical examiner from DLA. I'd read such horror stories of DLA being turned down that I pushed Emma to overdo it the day before so he could see how ill she really was. It was a mistake. She was back to having full body spasms, having to be held down on the bed so that she didn't involuntarily flick herself off on to the floor. It also took weeks to recover.
Another little humiliation was the monthly visit from the Educational Welfare Officer. He was pleasant enough, but the permanent checking up by officialdom was not. It also used energy better spent constructively.
This isn't all doom and gloom. Now, in April 2005, my daughter is much better and is doing her best to "pass as normal" at college. She's attending part time, taking 3 AS levels to add to the 5 GCSEs she passed well last summer. It has taken all this time inching forward to get this far, including over a year using a wheelchair. We passed on the GET (graded exercise therapy) and CBT (cognitive behaviour therapy), which was all that was on offer and relied on pacing and diet as treatment - going it alone.
A Personal Story-Sheila Barry [Online]
‘You will have heard, or you will hear, from people who are very qualified to speak here - I regard myself as an ordinary mother but then nothing is ordinary if you have an ME sufferer in the family. So why have I travelled down from York to speak at this book launch. I am here to tell you of the devastating effect the situation outlined in this book, has on the lives of ME sufferers. Skewed clearly outlines the reasons why many of those suffering from ME feel alone, isolated and have little hope for the future.
I personally regard psychiatry as a growth industry. The number of conditions identified as mental illness has grown tremendously in recent years. MS and Parkinson's, among others, were earlier identified as psychiatric illnesses and recently I read that 'shyness' has been classified as a psychiatric condition. How do they arrive at these decisions.
Psychiatrists classify a condition when a number of them are able to agree a criteria. They have no diagnostic tests. It is simply a matter of opinion.
I believe that the actions of the psychiatric lobby to have ME classified as a psychiatric illness and to prevent research into the cause, and a diagnostic test were the major reason that my daughter chose to end her life.’
NOTE: An * denotes that a name has been changed by request for the protection of privacy
SEVERELY AFFECTED ME (MYALGIC ENCEPHALOMYELITIS) ANALYSIS REPORT ON QUESTIONNAIRE (Word document) ISSUED JANUARY 2004 Analysis Report by 25% ME Group, 1st March 2004
Results of survey:
Graded exercise therapy: 95% found it unhelpful
Cognitive behavioural therapy: 93% found it unhelpful
SOME FACTS AND FIGURES ON CBT, GET AND OTHER APPROACHES Directly from the 'Horses' Mouths: written by Doris M Jones MSc.
In July 1998 the then Chief Medical Officer, Sir Kenneth Calman, announced the setting up of a Working Group on CFS/ME, to include patients, carers, patient group representatives as well as medical experts, including Psychiatrists. The aim was to find out what really worked in treating these conditions and based on findings, to then compile Guidelines on Diagnosis and Treatment for Clinicians and other Health Care Professionals.
Over 80 people took part in this 3 year exercise, including myself. Eventually details were available on 3074 patients, and the summarized results showed very clearly that:
1. The most helpful strategies were:
a) Pacing activity with rest (2300/2568 cases = 90%)
b) Bed rest (2165/2426 cases = 89%)
c) Dietary changes (1496/2226 cases = 67%)
2. The least effective strategy was: CBT
3. The most harmful strategy was: Graded exercise
Surely it is time that psychiatrists took some notice and actually listened to what patients tell them. I have yet to come across a patient who complains about any treatment which works, whether this is allopathic, psychological methods (like CBT) or exercise regimes (like Graded Exercises). If it works, no-one will complain; the problem is these approaches very often don’t, and this is the one and only reason why patients are so persistent in their demands for other options and are determined to get to the real causes of their ill health. One thing is certain: psychiatrists have made things worse for many, in more ways than one.
Comments from Greg Crowhurst of the 25% M.E. Group to the Gibson Enquiry; including comments from 25% members, December 2005
Includes comments from 25% members on CBT, GET and the effect of the ‘psychiatric’ approach to M.E.
"This will be revealed as one of the biggest medical scandals in history" declared a severe ME sufferer. This Report, based on an email survey of sixty- four severely ill, classical, Ramsay-defined ME/CFS sufferers, with a "multiplicity of symptoms" including, muscle phenomena, circulatory impairment and cerebral dysfunction (Ramsay 1988), was conducted at short notice in December 2005 especially for the Parliamentary Inquiry, by the 25% Severe ME Group.
‘When I was first ill (8 years ago) my condition started to improve a little and my GP suggested I get back to exercising. It wasn’t really graded exercise – he said I should "get on my bike and get my heart pumping again." I did this along with some aerobic exercise thinking this would get my fitness back. I then became severely affected and have been for the past 8 years.’
‘After I came home from the hospital where I received CBT/GET therapy, a physio came to see me once a week. The first one was absolutely appalling, and used to drag me up off the bed and hold me upright, even though I was too ill to cope with this, and my body was collapsing under me. It was a 'fight' really, with her believing that if I wasn't allowed to sit down, the muscles in my legs would improve, and I would gradually begin to weight-bear’
Crowhurst comments: Sufferers are far too ill to protest, and too ill to ever undergo the so called behavioural remedies being developed in their name, but will never successfully treat anyone with real ME, as one sufferer explains:
"I have been ill in different phases for 15 years. I have worked it out for myself that you can only "exercise" within very narrow limits. It is simply not the case that you can exercise your way out of this illness. If it were that simple most people with ME who were previously very fit and active, would have long since recovered."
Often the only choice for sufferers is to avoid the medical profession, because of its negative attitudes and inappropriate, negative treatment, as one sufferer describes:
I participated in Graded Exercise therapy via the ‘National M.E Centre’, Romford, Essex. This lead to a relapse, at home, and made me unable to sit upright for 1 year due to pressure in my head, and chest pain. I then relapsed and ended up in my local NHS Hospital in a cardiac care unit.
Another sufferer describes how, despite an "extensive psychiatric evaluation" which resulted in a report saying ‘she is severely physically disabled’, ‘has no mood or behavioural problems’ and ‘is coping remarkably well given very difficult circumstances’, she was still offered "CBT and counselling and my symptoms of severe nerve pain, nausea, difficulties with speaking, sight, swallowing and eating, seizure like brain activity, intermittent paralysis, contractures in hands and feet etc were left un-investigated and untreated."
This sufferer states how: "I could see the sense in graded exercise and how it could help someone to comeback from an illness and aid in their recovery but unfortunately with ME this treatment does not work and just sets you back".
"If you do not respond to Graded Activity, the Benefits Agency seem to think you are either malingering or depressed and benefits are refused. The Agency, and in particular their Medical Examiners, seem oblivious to the problems and symptoms of severe ME and all seem under the impression that everyone with ME recovers in under 5 years. If you are still ill after that it either isn’t ME or you are mentally or behaviourally ill in some way.’
Just how dangerous aerobic exercise can be for the severe ME sufferer is illustrated by this respondent’s tragic story
"I was an in-patient in a psychiatric ward of a London hospital. I was the only patient who did not have a mental health problem, and although my CBT therapist had had plenty of experience of working with M.E. patients, I was the first to be admitted as an in-patient. I only saw my therapist once a week, and the psychiatric nurses had no understanding of my illness at all. There was a huge amount of stress, and I was treated very badly by some of them. I received both CBT and GET, but the graded exercise seemed to be given priority. I worked with a physiotherapist, who also had no experience of M.E. I began to seriously deteriorate, and 4 months in, suffered a major relapse. I had a kind of undiagnosed 'stroke', collapsed, and became incapable of looking after myself.
When I went to the hospital I could walk 100 yd., feed, wash and dress myself. When I left I could not weight bear at all, had no leg muscles to speak of, and needed two people to transfer me on and off the toilet and in and out of bed. I had little use of my hands and was totally bed bound. I could not tolerate sitting upright against the pillows, conversation was beyond me, and I could barely manage to feed myself by picking up food in my hands -- cutlery was out of the question. Nine years later I have improved, but I'm still bed bound".
Another sufferer tells how: "I am not monitored by anyone. I only see my GP if I have an unrelated problem, eg. a chest infection or need an alteration to my existing drugs. I have not been seen by a consultant for 8 years. I have never been seen by anyone specialising in ME, apart from a psychiatrist whom I do not accept as an ME specialist as my illness is not a mental health or behaviour problem."
This report paints a desperate picture. Surely our respondent was right to call this a "medical scandal" of gross proportions.
Despite the real danger of Graded Exercise Therapy being harmful to the severely affected, 44% of respondents were still offered this intervention.
Every survey of sufferers (and this one is no exception) seriously calls into question the efficacy of GET and CBT: 96% and 95% respectively of respondents who tried it said that it had a negative impact upon their symptoms, yet as this report shows, this is often the only "treatment" on offer to sufferers and is the one being vigorously pursued by Government.
Significantly more than half of those offered CBT or GET refused the treatment; that is because, as the study has shown, people are very aware and are simply not willing to be made worse. However the bleak reality is that more than half of sufferers, each one on average experiencing more than 20 severe neurological, autonomic and endocrine symptoms, are just being left to get on with it, with no treatment whatsoever, some for decades.
This report has presented shocking evidence of abuse at the hands of the psychiatric lobby. Our members have reported being locked in secure psychiatric wards or AIDS units and their lack of response to "treatment" being taken as an indication of their misguided thinking.
It is time to acknowledge and address the main issues underlying the reasons for this abuse.
Click here to read the entire document; many more quotes from severe M.E. sufferers are given in the text, as well as some high quality medical information, this text is highly recommended.
While reading these case studies/patient accounts, please be aware of the following facts:
1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research 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 as ‘only relating to ‘CFS’ patients’ (including research which describes 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 and books 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 (etc.) to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.
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. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.
2. The research 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. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting Research and Articles on Myalgic Encephalomyelitis into Context.