Exercise Vs pacing
Hi Cort and all,
I would have a problem with parts of all of those comments on exercise. I have seen more recent stuff by Cheney making very strong warnings about the problems with exercise.
The problem with promoting exercise is that I don't think it works (based on looking at research and talking to hundreds of patients, maybe more). And most patients are alredy pushing it, and either cannot exercise at all, or cannot exercise and carry out activities such as work, caring for their children and so on. There is also the problem that once you put the idea into patients heads that they can improve through exercise, it tends to be something of a recepie for disaster.
I feel myself that there is a US/UK difference on this issue (I am talking about the good doctors here. Before anyone has a heart attack at what I am about to say, I am not from the UK).
In the UK exercise intolerance was always emphasised as a cardinal sign of ME/CFS. Pacing has generally been recommended by the doctors who are good on ME/CFS. So patients can increase if they feel able, but the idea of exercise in itself as therapuetic treatment is generally not promoted by the good knowledgable doctors. The UK doctors are often more critical of graded exercise and know that the deconditioning stuff is unproven (and that there is evidence against it) and that the push to get patients to exercise to improve originally come from the CBT/Psychiatric school.
But my impression of some US doctors after watching talks and reading some of the literature is that many US doctors who are really good on some issues are quite poor on the exercise ones. They often suggest exercise where the UK doctors would not (and the UK ones would stress pacing.) I think there could be a few reasons for this (some of this is pure speculation on my part).
They might read about Eurpean studies which allegedly found graded exercise to be helpful, but didn't understand that many of these studies use very loose entry criteria (Oxford), for example.
And maybe the doctors in the UK, knowing the characters who are involved in the studies, are more wary of just taking the alleged results at face value and maybe they are inclined to be more questionning and dig deeper, and basically have a closer look??? There are specific people like Ellen Goudsmit PhD (a psychoologist with ME herself) who have done a lot of work in this area. Also some of the more vocal people in the UK are doctors, psychologists and the like who have the illness themselves so that might add to it also. They read a lot of the literature but having the illness also means they have personal experience.
Of course you do have Leonard Jason in the US. But I have not seen a lot of good doctors in the US advocate Pacing and be very good on the exercise issue. I do remember seeing a talk by Chia and he said that one thing he looks for is exercise intolerance in order to help him diagnose. I cannot remember exactly what he said now, but I remember thinking that it was exceptionally strong and good on exercise for a US doctor (he has a son with the condition).
One more thing is a lot of the US doctors seem to think Fibromyalgia and ME are basically the same, or very similar. I think this view is less common in the UK. Fibro patients do not necessarily have exercise intolerance (not the way we do) and some may even benefit from some exercise.
And I have often wondered if many of the US doctors see severe or very severe patients regularly because of the sorts of recommendations they seem to make. I think people were also thinking this about Bateman which is what led to some people asking whether Bateman saw severe patients (and one might have to see them regularly for their experience to impact on one's thinking). It was not a personal attack. It was because people read what was in the CME about severe patients and it just didn't fit their experience or knowledge. I have often wondered this myself from listening to what some (very good in general) US doctors have said.
And just in case I have wounded people in the US, on the other hand I think many US doctors are very interesting on testing for things likely to be abnormal in ME. (This may be partly because the US healthcare system is more privatised and the UK one more public so they are very restriced in the UK).
Anyway, just a few thoughts,
Orla