Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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![[Read Rapid Response]](/icons/misc/sectionDOWN.gif)
Put The Rest Cure To Rest -GRADUALLY
- Sherry Salyers (12 August 1998)
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Mild activity and CFS
- David Everitt (21 September 1998)
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More Questions than Answers
- Crawford McKelvey (22 September 1998)
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Poor science
- Mark Savill (10 June 1999)
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Real Risk of Damage
- Andrew W Weaver (1 June 2003)
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Sherry Salyers, IT Consultant Marshall University
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I am a person with CFIDS/Fibromayalgia. I have been diagnosed with this nasty illness for some 3 years now, and after spending the last 3 years attempting to deal with this mystery illness about which much is speculated, but little is actually known, and after watching other people attempt to deal with it, and after spending countless hours reading everything relevant to the subject that I can find, I am beginning to consider myself to be something of an expert on the subject. I too am beginning to believe that the rest cure needs to be put to rest - but with certain reservations. When I was first diagnosed with this illness, my physician recommended an extended period of bed rest. I used every second of sick leave that I had built up on my job of 12 years and spent more than three months "resting". It helped somewhat, but I am beginning to believe that it helped by relieving some everyday stress that was mounting at the time, and by giving me some time to come to terms with the changes, indeed the sudden limitations I was experiencing physically. It also gave me time to "chill out" a bit, since I had spent several months fearing that I had contracted some terrible disease, and was in fact dying. Due mostly to my own stubborness and refusal to "give in", and in part to my sense of responsibility to my then 5 year old daughter to whom I am a single parent, I got out of bed and went back to work. Thank God my employer was understanding enough to allow me the ups and downs that came with this disease. They even allowed me to adjust my work schedule from a 5 day, 40 hour work week to a 4 day 32 hour work week. I am still working those hours, and I won't lie - there are times when it is too much for me. But in contrast to other PWC's I know who have literally quit working, I am doing very well. One lady I know who quit working completely so she could "rest" now has very limited physical capabilities. Her condition seems to deteriorate daily. I too have noticed that when I seek my bed for extended periods of time, my physical capabilities decrease rapidly. It's kind of the "if you don't use it, you lose it" idea. On the other hand, I can look back and see where I was just a while ago and see that I am gradually able to do more than I could in the beginning. I DO NEED more rest than I did before the onslaught of this illness. And when I have a "relapse", rest is absolutely imperative. I sometimes need as much as 2 or 3 days of rest to begin feeling well enough to go on as before. But no amount of rest makes me feel well again. Nothing has given me back the health and energy that I lost 3 years ago. Sometimes I have to force myself to go to work, or take my child to her sports activities. But the truth is that I can lay/sit around at home in pain with my mind focused on that fact, or I can sit at work, or at my daughter's games in pain, and get my mind, at least partially, off the pain and tiredness. I guess the point of all of this has been the idea that forcing myself to be mobile, has made it possible for me continue a certain level of activity. I can only rarely exceed that level without suffering great ill effects, but as long as I keep moving, I seem to be able to keep moving. I may not remember my own phone number some days, and it may hurt like hell. But I'm still living, so I'm not going to spend my life "resting" till I die. If I have to live with this condition, then I may as well at least attempt to have a life with this condition. I think the point is to know your limitations. Know your own body. Rest when you really have to - even if it is for an extended amount of time. But if you gradually (and I mean VERY gradually -it has taken me 3 years to get to where I am today!) increase your activity, you'll find that eventually you'll be able to do more. You may have relapses, and it may still hurt like hell and feel terrible, but you'll be able to do more. overall. I hope my experience helps someone out there. |
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David Everitt, Freelance Arts Admin/artist Various
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This will be a brief response based on my own experience and thoughts. I contracted CFS over five years ago after a virus which was possibly identified as Parvo. The symptoms range from muscle fatigue, memory loss, insomnia and weak attention to feeling 'overloaded' if in a particularly noisy or active environment. I have attempted various approaches from as much rest as I can get, to regular daily excercise that raises my heart rate. Most of the time I feel reasonable, and something between these two extremes has the desired effect. I am wondering if the endorphins released during mild excercise might be sufficient to have a physical effect upon a dysfunctional immune system. There is no doubt that the general sense of well-being following reasonable excercise has a marked imact on my symptoms and, as might be expected, I also sleep more deeply. It's not the rest that counts, but the quality of that rest; and some of the best rest I have comes at the end of a day that has included some physical excercise. Incidentally, during daily rest periods, I often feel refreshed after simply having a brief dream period, and do not need to sleep any deeper until evening. I'd like to know what research, if any, is being done on the excercise-endorphins-immune system-CFS link. |
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Crawford McKelvey, recovering from CDC defined CFS
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Professor Wessely makes contradictory statements about chronic fatigue. In this editorial he writes under the heading "Rest has no place in the treatment of chronic fatigue" but in an article in the New Statesman ("Talking about the M.E. generation" 30th January 1998) he states "consistency in both rest and activity is the cornerstone of treatment". Professor Wessely also claims much credit for getting the medical profession to take chronic fatigue seriously, but in an article in the Lancet (1998 vol 351 issue 9116 30th May) he praises Elaine Showalter- a woman who makes money by claiming that chronic fatigue is related to satanic child abuse. There are questions which Professor Wessely badly needs to answer. What is his true position on rest? Does he still believe in regular, measured doses of rest as he has suggested in the past? Does he still regard chronic fatigue as a genuine illness or does he support Elaine Showalter's views? Patients and the general public need to know. |
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Mark Savill, patient
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Simon Wessely's editorial contains only one reference to a study purporting to show that graded exercise is
better than 'rest' for patients with Chronic Fatigue Syndrome (CFS).- ref 8 Fulcher & White. Close examination of
the paper shows little real Scientific evidence for this claim :
1) The CFS patients in the trial are not representative of the population of CFS sufferers , they are highly selected: 2) The CFS patients only met the 'Oxford' criteria for CFS, not the much stricter CDC criteria used in most of the world. This is a difference between roughly 1 or 2% of the UK population,and 0.1 or 0.2%, meeting the criteria. 3)Patients were self assessed. 4)The actual results of 16 out of 29 rating themselves as better, compared to 8 of 30 controls, could according to the authors own statistical analysis have arisen by pure chance in 1 of 20 trials. These very small numbers are clearly not a guide to treatment policy for 150,000+ , especially given the highly selective nature of the trial. This paper is clearly a clinical paper, on a very small number of patients. Findings may be relevant to the hospital concerned. To pretend there is any wider implication is totally unscientific. Mark Savill |
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Andrew W Weaver, Sufferer None
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Sharpe and Wessely state, on a reference to Fulcher and White: "the evidence indicates that patients with chronic fatigue syndrome can exercise under controlled conditions without risk of damage or relapse". Fulcher and White state: "Only two patients (one in each group) rated themselves worse after treatment; both had developed a major depressive illness." I would state that developing a "major depressive illness" is damage, and that a 3% risk is a risk - none of us would drive down the wrong side of the road if we knew there was only a 1% risk of a car coming the other way. Fulcher and White use a relatively healthy selection of ME sufferers who do not suffer from sleep difficulty and are able to make a significant journey outside the home. These are only expected at the outset to walk for five minutes. This would be so small as to be irrelevant to someone more ill. Many people with ME suffer from a sudden onset and have the symptoms before undergoing rest, so it is not convincing (except to those who want to believe) to suggest that it is rest which causes those symptoms. Competing interests: None declared |
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