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/CFS (strictly defined). 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.
Name:
Naomi
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.
Name:
Annette
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.
Name:
Joe*
GET: More harmful than beneficial for me.
I'm not sure I've ever been able to achieve graded aerobic exercise according to the standards set by some of the clinical studies. I haven't been as systematic at adding to the exercise in small increments over a period of weeks. But in a more limited way - perhaps 3-4 days of incremental increases - I typically found that my body was rebelling at the idea of doing the exercising. I found that it might be ok two days in a row, but more than that and it usually put me over my body's limit and I have a mild setback.
Actually I'd have to rank regular exercise as one of the most damaging treatments I've ever tried. As a stressor to my system it ranks up there with the other no-no's like not sleeping well for 3 or more nights; having an emotionally stressful event; getting chilled; and being exposed to some toxic chemical / substance.
Name:
Jean*
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.
Name:
Ina
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.’
Name: Tim*
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.
Name: Fox
GET is a horrible treatment for sufferers of REAL ME-CFIDS-CFS.
It might work for people with 'chronic fatigue' which is NOT the same as ME-CFIDS-CFS.
For me, it made nearly all my symptoms worse.
Name:
Nicoletta Country: Switzerland
I am suffering from CFS for some years now, severely ill for more than a year, almost full time bedridden. After having tried a lot of alternative therapy I decided to give graded exercise a try-why not, it sounds so logical (to everyone who is not suffering from ME). I tried hard for about 10 weeks in hospital. Looking back I must that it did not help much, it put me under so much stress that I was not able to sleep without sleeping pills anymore. Even though the doctors were quite empathic, they did not notice that I was working above my levels. And after some time I was quite fed up to talk about my activities. I had the impression that doctors did not quite accept my limits and my experiences I had when going over this limits. It did not harm me much I think, but it was just another frustrating experience. In my opinion a bit of exercise, very well adjusted to the situation won't harm, for me it is walking to the mailbox once a day, sitting a bit in a chair outside. But graded exercise as practiced in hospitals is never ever a cure for CFS. My opinion is that those who get better would have gotten better anyway or did not have real CFS.
Money spent on Graded exercise is wasted money, in my opinion most people feel how much they tolerate and make the most of it. A good physiotherapeut who shows some methods of stretching or possibilies of very light exercise might be useful
Name:
Jaomi
GET: useless. i took part in graded exercise for several months as part of combined therapy with CBT. i found that no matter how small the starting amout of exercise, i got worse. it made joint and muscle pains worse. i was also mentally drained. i would say this treatment is useless and best avoided.
Name:
Tim*
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.
Name: Kate
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.
