Perhaps leading CFS charities description of severe ME is similar to the PACE trials authors interpretation of 'recovered'? I have no idea. Certainly 'severe' could mean someone with faulty illness beliefs who is bed ridden with depression leading to 'avoidance'. They too
are severely affected by 'ME',
if ME means to includes those patients who have CFS along the lines of BPS theory types. Sadly, it does.
We now know, comprehensively, Oxford Criteria CFS, is as far removed from Ramsay ME as possible, yet CBT still fails even for generic unexplained fatigue as demonstrated by the apparently tampered with PACE trial results! Ergo CBT shouldn't even be mentioned by any CFS or ME charity as a treatment, it simply doesn't work and if coupled with GE, can be dangerous.
So I can see why Simon Lawrence is a little miffed. He is very ill and almost on his own runs his little charity
with no media exposure or government funding, unlike AFME and others. Is this because the 25% group are staunchly against CBT/GE?
Where are the website pages on AFME's website
not featuring someone who is recovered or significantly improved! Where are the articles on bedridden people with destroyed lives? Where are the housebound people who've been stuck with a permanent flu like condition since they were teens when first diagnosed and are now 40, 50 and divorced, mentally ill and ruined?
If you have a diagnosis of CFS or ME, there isn't a single proven treatment on offer, and the patients are too ill to work, or look after themselves. The patients are thus forced to be poor. Poor people cannot afford to take legal action against their abusers. Additionally, legal aid (granted to others who apply) will not be granted by the state, to sue the state, to set a precedent they must not neglect PWME. So patients are trapped for life, unrepresented and misrepresented.
The situation for the severely affected is an unmitigated disaster globally, especially in the UK. Why is practically no one other than the 25% group and InvestinME letting this be known? It dumbfounds me.
The 25% group aren't scared of featuring it's members or having an obituary on display of deceased members. Sad, but reality for people with severe ME. They die, and die too young.
We want AFME, ME assoc to feature patients or their families caring for them who have been:
Neglected for decades not weeks or months. People utterly rejected by the system.
Misdiagnosed who had potentially fatal conditions or did in fact go on to die. (e.g. cancer).
Had their children stolen from them under accusation they were making the child sick.
Been mistreated by doctors in hospitals for failing to recover with CBT.
The above 'happenings' to PWME are not uncommon, but these experiences of severely affected patients are strangely absent in main stream CFS charities advocacy episodes, who apparently can or have received government grants for supporting CBT. Is this connected?
A complete change is required, a turn around. An official acceptance wrong was done, an apology given, and to move forward with equality and progressive thinking in mind. (E.g. accepting subsets, accepting patients are at risk, vulnerable people, often with little secondary education as they were too ill to complete education).
With access to healthcare in the community the severely affected ME CFS patients
won't need a charity, and will be self sufficient by actually being granted access to doctors and nurses who can help them by monitoring their long term condition and helping when necessary. Not much to ask is it?
