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It’s quite easy to say people who’ve left made mistakes. Sonya joined AFME just after the 2011 MRC one off grant and did nothing to build on her predecessors call for the MRC to give continued ring fencing until the field was more established, so she didn’t do enough to get biological research...

I don’t understand how it’s not a major red flag to the world and establishment that now ALL the charities involved in ME, dealing day in day out with patients real life experience state that they have issues with the PACE trial methodology, it’s underlying model, the way it was reported, that...

Julia newton is AFME advisor and tends to research CFS And fatigue. I think that ive seen A paper where she has said that exercise can potentially help some and harm others and we needed to find out who is which according to tests that could indicate it. This was based on the research paper and...

I agree. I saw someone who commented that they were on the get set trial led by Peter white following pace. I think that they had possibly been given a CFS diagnosis by professor findlay. They said they could do exercise and didn’t feel at risk but they had a sister with an MEdiagnosis which...

Tbh in the context of ME/CFS which will be painted as extreme and illogical as animal rights often is , I don’t think they would have gone to the press unless they thought it was to their advantage. If you don’t understand the bizarre ME world and few do , even patients just Challenging the...

I’m not sure if This is supposed to silence David, re establish the bps lot when they feel under challenge or both

Even the even the astronaut study by nasa, 3 months in bed did not cause ME symptoms or any major symptoms. This directly contradicts Information such as that in the GP document trying to suggest that muscle pain is caused in healthy people if they rest a lot and drawing equivalents to ME...

This is a shame. I think that UK medical profession has quite paternalistic approach stilland we the children supposed to be seen not heard. It’s a worry that this could be spun in a way which will elicit sympathy for them, the scientists, hostility to us the vexatious patients and I hope it...

I’ve managed one skim through, my thoughts.... Basically whilst there’s some welcome sensitivity to many of the challenges caused by severe ME, imo this is undermined by the constant “recovery” focused language even in the context of setting minute goals to people unable to possibly do...

http://www.bbc.co.uk/programmes/m0002687 Sometime after 11

Dr Charles Shepherd is A lot more perky than I Am after thirty years. I feel there’s a limit to the number of these type programs you can listen to. MY HIGHLIGHTS Kay asked some pertinent questions, what Steps versus just “awareness” , what “treatment” versus just management. But the answers...

https://www.leedsandyorkpft.nhs.uk/our-services/wp-content/uploads/sites/2/2017/04/British-association-for-cfs-me-shared-clinical-practice.pdf This is the link you posted on PR @Sly Saint ;-p Was this an early draft ?

The bacme published some severe ME guidance as far as a couple of years back but didn’t put them on their site for some reason. As a severe I really dont want that group launching guidelines on us. There’s been debate on them before maybe on PR, a mixed bag from what I recall.

There’s a difference between fatigueability and fatigue. Many mild-moderate will have periods of not feeling tired until they do something where they raPidly exhaust. They may not feel well though. I intensely dislike the confusion with chronic fatigue and I don’t really understand the point...

" Sounds eerily familiar. No you dont know Simon because you’re a psychiatrist and epidemiologist, but an immunologist or other ologist like klimas might. I’m guessIng the help includes some type of CBT because it works so well in CFS.,

Wow, lots of CFS mention in the offspring too. But the Mod REsponse was pretty final. Has the uk ever done more than ask wessely to look into it. Did it ever get biomedical research?

I agree entirely. Surely the MRC When being informed of a major health problem not progressing should do more than say c’est la vie, there’s no interest, there’s no leads. It’s not all MRC fault, medical education and medical literature out there is either putting off Drs or failing to inform...

Whilst technology is developing certainly I would not accept that ME more than other illness, was totally unresearchable in the past. Especially on severe ME, the tiny Newcastle study showed that with that community they really hadn’t done anything in the past - they didn’t know the numbers...

Its usually compared to balding and hayfever. I think that its Useful to show just how lowly our illness is considered given ME is clearly more disabling and distressing. Then showing what other serious illness gets MS etc it’s put well in perspective. Nancy klimas has used that quote. I think...

In my view The time to invest in research was years ago. We knew the severity years ago, Parliament was discussing it years ago and people have died tragically or lived wasted lives whilst we wait, it’s not a case of people still living but with an inconvenient ailment. There weren’t many leads...