Bob
Senior Member
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- England (south coast)
Please see this link for the most up-to-date version:
https://docs.google.com/open?id=0Bw9CNtVoYI7obnZERmFDY0NCbFk
https://docs.google.com/open?id=0Bw9CNtVoYI7obnZERmFDY0NCbFk
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hi Bob, I agree the PACE trial excluded the severe patients (mostly bedbound), but the definition of moderate used now is "mostly housebound". I suspect it had limited numbers of moderate patients, and was heavy on mild or misdiagnosed patients.
Very severe patients (fully dependent on others) are in a whole other category. Even light movement in bed would be problematic for them, so graded exercise would not be an even remote option.
I will have to read this more carefully a few times. It looks like a nice summary, of potential use to advocates who are wanting something short and to the point.
Bye, Alex
Fantastic work, Bob, and everyone else involved.
Please try to get this published in a scientific journal. It looks like high quality work and deserves publication.
Can it be sent to the ME Association and Action for ME in Britain?
And equivalent organisations on the US?
Should we lobby for the release of the deterioration rates?
Does anyone think our advocacy organisations will have the courage to do this?
Currer, I don't think its about courage. I think we do not have the power to do it. However that doesn't mean we shouldn't try. We would then have it on record that they chose not to release the data, again and again, in response to repeated requests. That has some political value too. Bye, Alex
Very well done, thank you!
the UK government will not listen unless they get caught with their pants down and their hands/members/tentacles/other organs in the cookie jar
Doesn't mean ya shouldn't kep trying, but expecting those scumbags to be honest, helpful...haha!!