I just googled the link to find the TalkHealth post and it doesn't come up so here's the text from the MEA FB page:
Why is GET (graded exercise therapy) such a controversial management issue in ME/CFS?
As this online clinic forum is discussing activity management and exercise I would like to make a personal contribution
As a doc with longstanding personal experience of ME/CFS I have been involved in various aspects of research into muscle problems in ME/CFS - including donating samples of my own leg muscle for research. As a result, this was the first research, published in The Lancet, to demonstrate a clear abnormality in muscle energy dynamics during exercise (= early and excessive acidosis) in someone with ME/CFS
So I am not convinced by the over-simplistic explanation that the exercise induced muscle fatigue that is so characteristic of this condition is always due to deconditioning. Neither is the research that is often quoted to support this model of exercise induced muscle fatigue very convincing.
I have made considerable progress over the years with activity management that is based on pacing - an approach that has consistently achieved extremely high approval rates from people with ME/CFS and which is recommended by all the major patient support charities
As a result I am now able to walk several miles, go swimming (even in Lake Windermere this summer!) and perform physically in a way that many people of my age do - even though the underlying illness continues
I have also tried a more structured approach based on graded exercise and not found it helpful.
The MEA receives constant feedback from people with ME/CFS who say they have been made worse (sometimes much worse) as a result of graded exercise programmes - sometimes because it appears that they have been applied in a very inflexible manner that takes no account of individual circumstances
Under the umbrella of ME/CFS is a complex multisystem disorder with a very wide range of clinical presentations and disease pathways
So activity management - balancing appropriate amounts of activity/exercise with approriate amounts of rest/relaxation - has to take account of the individual circumstances according to the stage and severity of illness as well as the type of clinical presentation
Results from the largest ever patient survey of all approaches to management, which was carried out by The MEA and involved over 4,000 respondents, found that in relation to GET (906 respondents):
3.4% greatly improved
18.7% improved
21.4% reported no change
23.4% reported that they felt slightly worse
33.1% reported they were much worse
With regard to pacing (2137 respondents):
11.6% reported great improvement
59.6% reported improvement
24.1% reported no change
3.5% were made slightly worse
1.2% were made much worse
So while some people under the ME/CFS umbrella, possibly those with chronic fatigue who are deconditioned, may benefit from graded exercise therapy there are others who clearly do not do so and are made worse as a result
This Is why I believe it is wrong to recommend GET as a 'one size fits all' treatment for everyone with mild to moderate ME/CFS - as is currently the case in the NICE guideline on ME/CFS. And this is why The MEA still believes that pacing is the most helpful form of activity management for most people with ME/CFS
The MEA Management Report can be downloaded free from The MEA website:
Research into muscle abnormalies in ME/CFS is summarised and referenced in section 5:3 (Muscle Studies - Research section) of the 2013 MEA purple booklet:
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association