Dangerous exercise: lessons from dysregulated inflammatory responses to exercise 2007

[fingers2022]

ME is defined by exercise making you worse. Ramsay said that exercise can only be used to sort out those with ME from those who seem to have it but don't.

It is maybe just about possible that there is an ME sufferer out there who is doing less than they could be so encouragement to exercise couldlet them realise thye could be doing more but the vast majority including everyone I have ever known tend to do too much rather than too little.

Epidemic or classic Coxsackie B induced ME - never heard of it working in almost forty years of following the research and the patient groups.

I can't think of any way that exercise could be a treatment except for deconditioning and the vast majority of people with ME are not deconditioned. This who are are the severely ill and exercise will not reverse the damage to their systems.

I have long suspected that some people get a long term EBV that isn't actually ME and they are the ones who go from being bedbound to climbing mountains. Once their infection is contained by their bodies exercise may help them recover from the effects of long term illness. They would be in the same position as people recovering from a broken leg.

People with ME or ME/CFS have a continuing ongoing illness and are usually exercising at their limit.

Mithriel

I'd say that sums it up pretty well, Mithriel, thanks......and it might make a pretty good diagnostic if we can measure PEM (I think some have gone some way to doing that?)
F
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[PoetInSF]

In an earlier clarification in this thread, you said: Actually, I'm advocating exercise on the basis that it can improve QOL, not that it can help you recover.

Advocating on that basis, but not dismissing the possibility of rehabilitation/recovery through exercise. Saying things like "if GET helps you, you don't have CFS" only paints CFS patients into corner to stay inert and wait for antiviral solutions for another 25 years when resting/pacing/adapting/exercising appears to be the best/only option.

Bruce Campbells course is more like a pacing program from what Ive seen.

Exercise was the major part of his recovery program along with resting, pacing and adapting.
http://www.recoveryfromcfs.org/chapter11.htm

 

[PoetInSF]

I think this will come out in the wash if/when we ever get to understanding root causes. If we're talking ongoing infection, like a retrovirus, say, then it's unlikely that GET would fix that. If we're back in the Wessley camp of number plates and wonky brain mechanisms, then maybe.

We don't know yet if CFS is an infection or injury. But we do know that antiviral therapies so far offer no more than random chance while exercise offers slightly more than that. What I'm saying is: if exercise within your limit helps you improve your QOL, that's all the reason you need. If it helps you to recover, that's even better.

Sorry, could you tell more about Bruce Campbell, I don't know that one?

http://www.recoveryfromcfs.org

 

[Dolphin]

Personal experiences

Well, given we're sharing personal experiences, I'll give mine. I exercised for years with this illness. I got myself up to swimming 40 lengths of a 25m pool (around 2/3 mile) or a six-mile cycle every second day which I did “religiously” at this level for over a year (only missed a handful of days e.g. when gave blood, wasn’t supposed to exercise for a few days and had one cold which knocked me out for 10 days).
So, even though I had a very healthy lifestyle (was very lean, no alcohol, cigarettes, etc), I wasn’t better – I still had cognitive symptoms, was prone to muscle pains, light sensitive, etc. I eased off a little during the exam period and one exam caused a major relapse. I wasn’t recovered during the exercise and I certainly wasn’t better after the relapse.

As Dr. Bell once says: (paraphrasing) “as you improve, you’ll be able to exercise more rather than as you exercise more, you improve”.

 

[Min]

"
On 13th December 1988 Brynmor John MP died from ME/CFS. His experience of the illness was all too familiar: Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it. He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength. He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS (Perspectives, Summer 1991:28-30). Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness."

(from: "Evidence ignored by NICE by Margaret Williams)

 

[PoetInSF]

Well, given we're sharing personal experiences, I'll give mine

Thanks for sharing that.

As Dr. Bell once says: (paraphrasing) “as you improve, you’ll be able to exercise more rather than as you exercise more, you improve”.

Questions like this should be settled with RCTs and controlled studies. I think it's rather irresponsible for people who should know better to shoot it from their gut feeling.

One possible explanation for the improvement with exercise in the previous studies could be improvement from reconditioning within the limit rather than systematic improvement of the disease. We don't know that till we have more refined and higher quality studies. Till then, all we can say is "exercise shows promise for some patients".

 

[oerganix]

Thanks for sharing that.


Questions like this should be settled with RCTs and controlled studies. I think it's rather irresponsible for people who should know better to shoot it from their gut feeling.

One possible explanation for the improvement with exercise in the previous studies could be improvement from reconditioning within the limit rather than systematic improvement of the disease. We don't know that till we have more refined and higher quality studies. Till then, all we can say is "exercise shows promise for some patients".

Poet, are you a medical doctor, or is this just your gut feeling? Just curious since you dismiss Dr Bell's opinion as "irresponsible", even though he has seen thousands of patients, and there are quite a few high quality studies showing that exercise is harmful to many if not most ME patients.

I, for one, wish I had known how harmful exercise can be in the early days of my illness. I'm quite sure that exercise has harmed me greatly. I have had life-threatening athletic anaphylaxis that emergency room personel did not recognize or understand, nor did I, at the time. Only self-medication with triple doses of antihistimine and lying in a bathtub of cold water for half a night saved me.

 

[PoetInSF]

...even though he has seen thousands of patients, ...
I, for one, wish I had known how harmful exercise can be in the early days of my illness. I'm quite sure that exercise has harmed me greatly.

Weather it's Bell, you or me, it's one person's opinion based on his/her experience. You and I debating on a forum is one thing. People like Bell, Peterson or H Johnson is in position to influence patients for better or worse. They should be extra careful and stick to medical evidences.

 

[Dolphin]

They should be extra careful and stick to medical evidences.

One shouldn't forget that generally subjective outcome measures have been used in trials of GET and CBT based on GET.

So people showed improvements on questionnaires that asked about fatigue and physical functioning.

However, we know there are lot of problems with such measures. In Belgian clinics, where over 600 patients with CFS (Fukuda) did rehabilitation programs, looking at the questionnaire data, they did quite well (although still quite a lot - 20-30% - said they were worse); however, there was negligible change on the exercise test and people actually worked less hours at the end.

Friedberg has found that in some small studies he did which encouraged people to walk (no change in actometer/pedometer readings). Also, a recent review of three Dutch studies (Wiborg, 2010) also found no change in actometer readings.