Search results

Well at least that's one way of getting some research on bedridden people which we can apply to the neglected community in me/Cfs. I've been bedridden for years and never had told me anything about insulIn resistance as a consequence or given any advice on diet because of it which surely might...

I disagree. I think Nice criteria were an attempt too keep CFS vague once Oxford was being discredited. It's the criteria of choice for Crawley. The last thing we need is Crawley type studies forming the basis of a NICE guide - bearing in mind as far as NICE are concerned the biggest exciting...

Someone just posted this on the ME association Facebook page which I've copied. (Thanks to long-term campaigner Anita Roddam for this find and transcript) It's a transcript of a speech by an MP 30 YEARS ago calling for a House of Commons debate on this area of neglect. No mention if PACE...

True but they're also strong on the infrastructure, info and advocacy side too but often their posts on Facebook just get a handful of comments, & when you consider the size of America. Maybe, as you say others get attention, unrest more on that front. They're not a support group like uk...

MERUK have had this sort of thing going in some form for some time I think.

Perhaps , and I include myself in this, we should get behind SMCI a bit more as a community too. I tend to focus on changing the negatives, especially as in uk there's so many, rather than supporting the positives, but that charity has become a fantastic thing due in large part to Dr Z N.

A real shock and a real blow. No information given as to why or where he's going. Maybe the field was too frustrating but I thought he was making a real personal difference

Great news, MEaction are a great global force for change. Maybe it will help the #millionsmissing hit harder

Mark Edwards is now quite a big player in the CMRC. I can't remember much about the study, discussed months ago, but I do know @Jonathon Edwards on PR was actually very impressed with it. The PR thread went into depth on it. Neil Harrison is one of its authors who has done talks, quite...

Well if CFS was just chronic fatigue.... I'm not going to say the study will find nothing useful or is bad but I'm not convinced the researchers get ME at least, but they don't need to do they CFS can become fatigue and ME systemic disease can be ignored. The brain may be key though so at least...

NICE need to take responsibility for their part in the unhelpful framing of this illness. The direct consequence has been lack of research interest which ironically Mark Baker has said is a tragedy.This ofcourse has been the vicious circle - no research , no robust single evidence for disease or...

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 appropriately. The CBT model would no longer be such a basis for these clinics and that Drs fully behind the biomedical model would ge the ones running...

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 for the same treatment. They've done patient surveys and many don't improve or get worse, more fifty - fifty I think.

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 complex distressing symptoms in ways GPs might be reluctant eg on sleep, pain, spasms beyond the basics GPs are happy with.. I've never believed in just...

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 needed for complex cases. The severe need access to expert doctors. How is it acceptable to leave pwsevereME or complex without medical care in the way...

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 is doing loads rather than continuing a tradition of virtual neglect - WTH He says uk is making great strides on diagnosing early. Uk isn't really...

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 plough into other British research. It's not like there's not a whole range of other areas needing funding. The problem in UK I'm guessing is who there...

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.