I've heard that people who are pro science on the Internet regarding CFS allegedly can get censored by certain UK charities on Facebook etc. I thus tend to leave well alone which any charity because I find the idea of arguing with these people terribly stressful, primarily as they are healthy people are not tormented by symptoms as we are. They thus will 'win' an argument through careful positioning every time and do not react adversely as we do, to even minor emotional conflict.
Yes the exercise myth is rarely challenged by not offering up an alternative view, but ultimately one's voice isn't heard anyway short of suing the NHS, which cannot come yet. It will in time with a group legal action, including suing the people who created the NICE guidelines which are unfit for purpose. It's best to leave our very real complaints of selling of psychobabble as science (to the British public) for then I think.
We certainly live in a bizarre world, where referring to scientific studies soon leads to a 'heated debate'. This can apparently get your posts deleted or worse, because the message you convey (scientific) is at odds with BPS and what the UK's Department of Health prefers the public to see. A message of disease denial (CBT/GE works message). Cleary, thousands of CFS published biomedical studies demonstrate that CBT/GE could never work, ever.
Proponents of exercise don't like this, they don't want people to know that research demonstrates exercise is physically impossible for many people with long term life-limiting CFS, due to many having an underlying disease process first described by Ramsay as ME.
I guess it wouldn't be cynical to think, that if all CFS charities in the UK took the approach the 25% group and Invest in ME do (biomedical), then they might not get the funding or the 'position' to influence research. Logically this would be why 'spin' takes the forefront of headlines. Hyperbole and spin.
I notice UK CFS charities tend to be extremely cautious at criticising anyone in the psychiatric field, and I imagine this is to make sure they are invited back to working party reports on CFS/ME, rather than not at all. An 'acceptance' of the view of BPS view of ME by certain charities could reflect some charity heads own experience of their CFS. E.g. that they may personally believe themselves that ME is CFS, and CFS is a mind-body problem, as is promoted by the MRC who funded the PACE trial but refuse to fund a Rituximab trial in comparison.
Until we have a biomarker for subsets of CFS or ME, I would imagine everyone has to tread on egg shells, and most bizarrely, the patients! Still, I sense some hope on the horizon in 2015.
Keeping to the topic of challenging the false information that exercise is beneficial to CFS (for those who have ME), If people want to test themselves, they can demonstrate a few things 'wrong' with themselves at rest if they can find reliable specialist labs, afford private testing costs, and arrange home phlebotomy!
Immune activation markers
Oxidative stress markers
Vitamin and mineral deficiencies
Inflammatory markers
Cardiac risk markers
Combined, if one has significantly abnormal levels of the above, it would be physically impossible to benefit from exercise, because the body would already be in a state of inflammation, and oxidative injury at rest before exercise. Because these tests are mostly 'specialist', the patient never has them, and so never knows they have 'proof' all along that GET is harmful.
