NICE need to take responsibility for their part in the unhelpful framing of this illness. The direct consequence has been lack of research...
I can assure Barts would be the last place I'd want to model good ME Drs on!! The idea would be that NICE would limit GET /CBT recommendations...
I will just add that I want NIVE to either remove GET/CBT or limit its That's interesting. My own CFS service locally gets nothing like this...
Dr bansals severe patients are sad for their loss I've read. Bansal going is pretty much the old wave of experts nearly gone ...
I have severe ME and there really does need to be some guidelines on it Drs can refer to and the severe do really need expert Drs to manage...
It might not have been ME related but financial.. How is it acceptable to not commission services when the NICE guidelines state that they're...
I guess that's what was referred to in the discussion with funders. I think they received £1-200k from a specific donor
What planet is dr shepherd on here He doesn't mention pain in his description- not me, but for many its a huge symptom He talks as if our MRC...
Yes fair enough. The positive is that IIME has quite a lot of money (depending to a part if they can keep their philanthropist donation too) to...
It's a size thing isn't it. If there's a small study originally, a larger study still funding much of the same, with some edges rubbed off is good.
SEID was only supposed to be a temporary name until we could label accurately based on evidence. Currently the states are left with CFS or CFS/ME....
Maybe the difference is some with ME do improve or recover so theoretically tackling something like sleep or pain can help that and...
They might be iffy but I don't think the existence or not of the optimum health clinic has really had much impact on the ME field.
If anyone wants to see ME mystery controversy debate and misery from a different era here's a 1990/1991 Robert Kilroy silk discussion program with...
Julia Newton couldn't see why patients would have concerns at the CMRC etc. I disagreed with her in this recording, almost excusing the bps focus...
This would have been great when I was newly ill. Life saving. However now I'm severe and realiant on care from others I simply can't organise my...
I had thought this was the replication PET scan study as it was published on Facebook !! Very disappointing if it isn't. The same Japanese team...
Also we shouldn't be framing this as ME is a subgroup of Oxford fatigue. ME is a distinct illness, with using strict criteria, a population size...
Analogy If we had a scenario where migraines were just dumped under the term headaches. Then some headache researchers took a cohirt of headache...
I disagree with your position. As far as I'm aware there was concern in the USA that Oxford fatigue studies shouldn't be assumed to apply to...
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