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I could not agree more, and I hope this is done as soon as possible. It does not seem that difficult compared to the other research and funding challenges. Something on this IDO2 mutation would be really interesting and as you say would spur interest from others. This approach seems to silo the...

"Diagnosis of exclusion" again? :(

I find this idea of not publishing your research - especially if you say you have significant-sounding findings - to be impractical and unscientific. It is self-sabotage, really. I am sure it's just a question of time priorities, but OMF needs to reconsider its strategy both in terms of the...

He's really calling in all the political favours he can these days.

I do continue to think that NICE are extremely unlikely to change the main points of their draft guideline, as they would call into question their own process. I do believe that various parties do know this and are instead interested in buying time (or perhaps concessions around the margins...

Unfortunately Dr Myhill has gotten into increasingly sketchy territory with the things she recommends. In around 2009 (I believe), she did really help me - part of the reason was that she prescribed "normal" things to help me with sleep issues and so on, and was not talking about some of the...

I agree that this is a bad statement. Re: exercise "therapies", seems to give cover to BPS people who wish to operate around the new guidelines, whatever they will be. Not sure what else is being achieved.

"Outcome measures", "rehabilitation", "multidisciplinary"... *shudder*

I remember the broken car stuff from 13 years and years ago in a dubious ME/CFS leaflet that just kept repeating silly metaphors and problematic biopsychosocial venn diagrams for pages and pages. Probably the same repurposed material they are using for Long Covid.

Sometimes I think about how strange it must be for GM to have had a virus, failed to recover in a timely way, and then come across this entire BPS s-show. And then now to be in a back-and-forth of the kind we are seeing here. Being blamed for spreading LC. It must be surreal for him...

Thank-you for your great work. Is it the wrong reaction to be really concerned that this has to be crowd-funded, though? Can't universities prioritize this kind of work and fund it directly? I don't know much about how funding works but this seems so precarious in terms of the things that have...

I really hope we are able to drop "fatigue" altogether sometime. It causes so much damage in perception by the public and medics.

Somewhat off topic but does this include the govt science advisors re: sympathy with BPS agenda? The CMO has made some fairly dubious comments about risk to kids. I am unfamiliar with the orientation of the individuals involved. Obviously there has been a decision not to speak about Long Covid...

Thanks for sharing the survey. I will do it. I had suspected covid (I have had ME/CFS for over a decade) and am now much worse than ever. Been devastating :( xx

Additionally, some physicians may consider patients recovered if they stop coming back to seek treatment whereas it's just that they are still ill and nothing can be done - or, worse, are avoiding harmful pseudo-treatments. If you don't keep coming back, you're usually assumed recovered.

BBC seems very happy to go along with this narrative. How can this ever change?

I take melatonin. It helps me sleep. It helps me fall asleep, specifically. It's been great from that point of view. I had a lot of sleep problems and melatonin was part of the solution in combination with something else, and of course improving sleep helped symptoms. I was really struggling...

Really I despair.

Does this man do anything with his life other than maintaining media relationships?

I agree with the above comment. Who is this helping? I think we can do without more euphemisms and questionable nomenclature - or strings of letters. This way of describing and grouping together the health problems of many disabled people is misleading, and seems to make us even more of a...