Trial By Error: Letter to British Journal of Sports Medicine from CPET Experts

Letter to British Journal of Sports Medicine from CPET Experts

Last October, the British Journal of Sports Medicine published a short paper that was essentially a summary of Cochrane’s systematic review of graded exercise for chronic fatigue syndrome (as Cochrane calls the illness).

In response to the BJSM article, the experts on post-exertional malaise from University of the Pacific and the Workwell Foundation wrote a letter to the journal that has not yet been published.

Since the letter makes valuable points and will be useful for those seeking to rebut the BJSM paper’s fallacious claims about exercise, I am happy to post it below.

 

A great letter clearly summarising why aerobic exercise as treatment for ME is contraindicated and why the studies advocating GET are profoundly flawed. It will be useful to give to clinicians advocating GET.

 

Good article, short, precise and accurate.
How do we raise its profile so its read by more experts?

 

That is really the question, isn't it? I can show the letter to my doctor, but it probably won't get any further than that.

I'm convinced the answer (at least in the United States) lies in the federal government reporting on the harms associated with GET.

PACE has been discredited. The CDC has dropped its recommendation for GET. Yet there is still widespread belief (in organizations such as Healthwise and Kaiser Permanente) that graded exercise can help a small subset of ME/CFS patients, and there is little risk in trying it.

The CDC needs to stop sticking their head in the sand and ignoring the growing evidence of GET harms.

The answer to your question? The CDC needs to put on their website a strong statement similar to what the letter says, "graded exercise – particularly aerobic exercise–not only fails to improve function, it is detrimental to the health of patients".

This latest letter adds to the growing condemnations of GET. Last May, the New York State Health Commissioner wrote, "In the past, cognitive behavior therapy (CBT) and a graded exercise therapy (GET) were recommended as treatments. However, these recommendations were based on studies that included patients with other fatiguing conditions. Because of the hallmark intolerance to exertion of ME/CFS, exercise may actually worsen the health of those living with this disease."

 

I do agree with you, but i would like to see her criticism placed in the same journal or baring that one with similar level viewership. Corner of the internet is not enough exposure. Thats the strategy of the CBT/GET cult, to get their lies disseminated far and wide so they are believed over reality. We need to fight at their level.

 

I think we are agreeing from different sides. In my opinion, the message about GET harm now needs to move from academia into clinical practice.

 

Indeed, in another thread in a place far far away i had advised someone on how to approach their disability benefits hearing by focusing on their condition and symptoms and someone mentioned it was different then their advice which was to take on the system at the hearing. In this case i am advising to go after the evil system because they are using it against us and winning so far. Academia does filter to clinical practice, sometimes trailed by decades though in the case of make patient worse or brand new test or treatment it will be quicker.

A biomarker/test/disease mechanism will crush them but we don't have one yet, and no ETA. We can defeat them without it but its much harder, we have made inroads but we have not won yet.

 

Good to see different people raising concerns.

I'm a bit surprised that they didn't focus more on the problems with the Cochrane review itself. I feel unable to assess some of their points, not knowing much about their exercise research, but doesn't it seem possible that lots of exercise could be harmful for CFS patients, yet special GET could still be useful? I don't think that there's any good evidence that it is, but I'm unsure that certain forms of exercise exacerbating symptoms necessarily shows there's a problems with GET.

Some of the problems with the Cochrane exercise review are detailed here: https://sites.google.com/site/mecfs...exercise-therapy-for-chronic-fatigue-syndrome

The most recent version of the review includes those comments, and responses from Larun that utterly fail to address them.

PS: Thanks to these authors for raising their concerns! I tend to only post about the things I'm less sure of, and ignore the good stuff. One of the big problems with CFS research is that there's really not enough to incentivise researchers to spend time criticising other people's research, so good to have those at the Workwell foundation engaging with things like this problematic Cochrane review.

 

@Esther12
If I understand correctly, by definition, the GET protocol recommends aerobic exercise, continuously increasing the amount of exercise, and ignoring any resulting symptoms. It is also based on a presumption that the debility is deconditioning resulting from inactivity.

But using aerobic exercise is contraindicated because people with ME have aerobic energy metabolism impairment that has been objectively demonstrated by the 2-day CPET studies. These studies also demonstrate that this impairment and the lowering of anaerobic threshold on the second day of the two day test is not seen in deconditioning, which discredits the whole rationale behind GET. Pushing the aerobic energy system as GET does results in symptom exacerbation and crashes which are made even worse if someone is trying to convince you to ignore your symptoms and push through them.

I do agree that the study design and conduct issues are a huge problem with Larun and other GET studies and Larun has failed to address those. But I think it's also very useful to bring this clinical/medical perspective in to the discussion - it provides a scientific explanation for how GET might cause harm that could be useful in trying to get med ed providers to reconsider their recommendations

 

I guess I need to look more closely at their research, but I'd not heard of any which really showed that all forms of aerobic exercise were harmful. Maybe I need to look more carefully at what was cited before commenting, but my instinct is that it would be hard to use this sort of research to challenge the efficacy of GET (if the trails claiming to show GET to be effective were of good quality anyway).

 

I'd think it could be used in two ways - GET is claimed to exert its effect by reversing the presumed deconditioning. But deconditoned patients dont exhibit the lowered anaerobic threshold on the 2nd day that ME patients do. GET might help deconditioned patients but that's not the fundamental problem in ME. At the same time, this research demonstrates that aerobic energy metabolism is not working properly - there's no evidence that pushing aerobic exercise can fix a broken aerobic energy metabolism system but there is evidence that doing so causes harm

 

It's a good letter. Though I'd be interested to hear more about:

This would seem to suggest weight training or even HIIT would be acceptable for use in ME/CFS. Has anybody tried this? (I'd give it a go but cowardice requires me to see if anybody else wants to be guinea pig )

 

HIIT in very short bursts is recommended by Dr Myhill when people have reached a certain stage of functioning ( and only then).

 

I have. A Decade ago when I was not as sick as I am now up until I hit a wall around ~2012 when I just could not recover anymore. The gist of it would be: Do only one set of any particular exercise and stop when it gets harder for weights, almost skip the 'active recovery' part of the HIIT (just stand still or walk very very slowly for 90+ secs) and only use short durations (5-15 sec) on the work sets - both to make sure you rely on the aerobic system as little as possible so no PEM is triggered. I had a lot less problems with OI back then, but it did not stop me from becoming more severe over the years (and may have contributed, you never know), so don't get your hopes up

So basically I arrived at what the workwell-link Trish posted says through trial & error, but like I said, unless you are reasonably well and have a good reason to assume that trying this will not set you back for months I would advise against trying it for the time being.

 

I did, strength training with free weights and a rack. Whilst it initially appeared to work, and I got stronger, and faster, over time it took over, and nothing else got done, no resources to eat sensible food, I stopped going out, getting a bath etc. My life was just training, preparation for training or recovering, anything that could impact on the training didn't happen. In short I wasn't doing more activity, I was displacing things that needed to happen in favour of strength training.

It took a long time to realise what had happened, I can be very focussed at times, and this was one of those times.

When I started I could, albeit very slowly, walk 4 miles (took all day and couldn't be done that often but it could be done), this gradually decreased, now I have an absolute range of around a mile in a day (with crutches), but my range without PEM barely gets me out of the front door.

I ascribe this to strength training.

So, if you're considering it, extreme caution is warranted.

 

In relation to saying aerobic exercise is bad for people with ME there are now many studies, including those by the letter's authors indicating that over a period of days that it exepacerbates the functional and physiological symptoms of ME, and surely having demonstrated that it would be very unethical to push forward with an exercise programme to see what happens longer term.

There would be the potential for research into anaerobic exercise to see how that impacted on ME, and I wonder if on occasion GET in the hands of a sympathetic practitioner, who pulls back on the first sign of any negative response becomes a combination of pacing and anaerobic exercise. Certainly I have read comments by people who feel that GET has been positive for them but where they seem to be describing something more akin to pacing.

Researchers like non functional exercise in isolation as it is something that seems easy to measure in isolation in the laboratory. It seems to fit in well with the idea of a tidy experimental design, however I would argue in ME that it is pretty meaningless without a measure of the total activity over the whole day. I would argue that given the technology is now available we need descriptive studies that simply record all activity over weeks at a time to establish what people with ME actually do and to see what daily living activities for each individual trigger crashes.

Personally I see non functional exercise as an irrelevance. I do not have any spare capacity to introduce an activity into my life that does not contribute to my daily living. If I am going to lift weights it would be to put my shopping away, if I am going to walk it will be to the bathroom. Until we have research that looks at these issues any arbitrary exercise (aerobic or anaerobic) programme is profoundly irrelevant to my life.

 

I want to highlight this because I feel that this almost cannot be stressed enough. I encountered the exact same thing during my time with the weights and, frankly, have fuck all to show for all my efforts. Maybe there is some way to work around this (I remember a recent thread about 20mg prednisolone or 80mg hydrocortisone once a week allowing some pwME to exercise without triggering PEM and getting positive effects from that, maybe mostly regarding POTS/OI stuff?) but unless you have found something like that it is very easy to underestimate how much one is sacrificing here.

 

I think this is the most relevant point when it comes to exercise: it's never worthwhile if it comes at the cost of other activities. Maybe some people with the underlying pathology of ME/CFS are mild enough that they have energy to spare for extra activities (beyond what they would normally do for fun or part of their normal life), but it's hard to imagine that such a person would realize there was anything wrong and see a doctor about it.

I really see no point in exercise protocols with this disease, even if they can be done without eliciting a crash. We don't have enough energy by definition, and it doesn't make any sense at all to waste it by running (or walking) around in circles.