Welcome to Phoenix Rising!
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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Pleased to see you here.
I thought a lot of your talk was good, thanks, especially emphasising the point this is not fatigue to an audience where sone reduce it to that. but I didn't see why you criticised pace trial headlines but not the research itself - trudie chalder et al did a paper and press releases whereby supposedly the main thing is to reduce our fear of exercise. Also I don't see how you can work with Esther Crawley and mega, given that Crawley frequently does reduce our ghastly illness to fatigue, is totally irresponsible in the media and a nice guidelines criteria biobank isn't really a research priority is it? Maybe you feel best to be involved than not but I personally feel an alternative collaborative should be set up with people on the same page that this is systemic disease and bring in sympathetic journalists instead of the CFS bashing SMC reps. Etc.
I do thank you as someone recovered for caring enough to devote time to furthering progress. We need more healthy advocates who can actually travel and devote energy etc and ofcourse for you advocacy isn't in self interest so,
Rest assured NO-ONE on MEGA (if funded of course) will NOT have properly defined PEM. All the PAG are passionately behind this.
MEGA does seem to be contentious, but we are exerting as much influence as we can - and if we weren't, and it got funded, yikes!!! Best to have some involvement than no involvement - which means no patient voice - no influence, which was something that, at the CMRC conference, was being pushed as a VERY. GOOD. THING.
That says they'll define it themselves. Why not use an accepted definition which already exists? We've repeatedly seen that the MEGA lead generally omits PEM or redefines it inappropriately, while disingenuously claiming to use NICE criteria. Esther Crawley has completely destroyed any right she might have to get the benefit of the doubt in that regard.Rest assured NO-ONE on MEGA (if funded of course) will NOT have properly defined PEM. All the PAG are passionately behind this. See the FAQ page here - item 3. http://www.megaresearch.me.uk/qanda/
You called?OMG! Does this mean I'm in "SMILE denial" ?
OK, Hold on. Hold on. You know how to deal with this... "SPOT!"
Damn! Why isn't this working???
Maybe we are all a bit wiser and in the end things will come right. It is good to have people playing things different ways because nobody ever knows quite which way is the most helpful and just a pantomime slanging match almost certainly isn't.
Isn't it simpler to have a 'zero tolerance' stance? 'Playing things different ways' gives far too much latitude to EC and her cronies imo.
No, you have it all wrong. The magic word is TOPS!OK, Hold on. Hold on. You know how to deal with this... "SPOT!"
Damn! Why isn't this working???
We keep crediting them with good intentions because it is hard to believe that evidence will not make them change their minds but it has never happened. People get ME and think that all that is needed is proof and everything will be fine but it has never happened.