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".
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.
