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But th But they haven't over thirty years been successful so what are they then doing wrong? Are they not employing the right staff? We can't just say more could be raised privately when it simply isn't being without showing what needs to change. In fact charities, even solve ME CFS who've...

Unfit in middle age: Are you doomed? http://www.bbc.co.uk/news/health-44468755 Mentions "frailty" in middle age as higher risk of early death & says frail people were often found to have MS or CFS. Unfortunately the current recommendations for frailty are identify and treat with exercise :-(...

Anyone think the whole SMC involvement was wierd in the first place, if they're being let go now because of altered definition & independence, what was the original CMRC "terms of reference" and SMC purpose before? are they a media group "for hire", were they involved with the purpose of...

The original PAG did publish the list of names of those who agreed to be known. To be a member you had to be broadly supportive of the MEGA project as it was then proposed and then they were selected. Some names I recognised , some i didn't and about a third then left I think. The new role of...

IF CMRC really wants to claim patient engagement they should cosider holding phone ins like the nih where un selected patients can ask questions and air views. And they engage with cross section of the population, not just their fans. They could also have something similar to the CFSac in...

It is unforgivable to me that funds weren't pitched for after the Gibson report, or after the 2012 one off ring-fenced allocation. We didn't have to just accept slow mo and no funds, that time can't be bought back. I can't look at the current out of the context of the 25 years I've been Ill...

As collaboration is the buzz word, I can see why being able to quote another major body as part of your movement is useful. Of the U.K. Research charities, two of four are now involved. It would look good on paper However it would be by patients very unwelcome with their behavioural leaning. I...

Me too. They can't just act as if the past twenty years haven't bern totally wasted and expect the patients who've lived and suffered through that time to just get behind them with no apology or recognition even If you read the additional supplements a) you'd think the CMRC and right since...

https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf I don't know if this has already been published, it's the April CMRC minutes. I looked it up to see what was most recent. It seems Sonya chowdhurys time and salary is largely devoted to her role and work...

I haven't seen this but think one of the posts is alluding to the stuff probably going on behind the scenes at the moment with MRC on funding and invest in ME theorising how things might be played out.

I agree with sunshind3. The parameters of the ME spectrum are the minority who almost recover to the extent they can live symptom free to the minority who live terrible lives at the very severe end, with death even being possible and the whole range in between. The deaths aren't out of context ...

The ME association had a page for people who wanted to do unrest screenings with tips and advice etc. One part was suggesting people contact the MEA fundraising officer for MEA fundraising material so they were profiting from the showings...

The problem with this for patients is that to us this isn't a matter to be debated, researched and only then proven, once the evidence supports it. That's been part of the issue with this the total discounting of the patient experience until the tests show something. To us, just as if you were...

I'm unsure about that statement, people like Nigel Speight have used that terminology primarily biological or physical , probably in context of refuting the psychological assertions and allowing for recognition that ME can be impacted aggrevated by stress or so on. Equally it is true that...

I think AFME were just given the peter white pain study, if that's what is being referred to, to continue once the group "CFS something or other" folded when their CEO " Anne someone" died a few years ago. They had been funding it and as a group who favoured the CFS name I'm sure AFME were...

I think iimes tone is sometimes unhelpful and they have chosen often (many would say rightly) to stand aside so therefore expecting inclusion is perhaps unmerited. I think they feel pushed out of forward ME in the past or was it the appg. There was very strong fighting over rituximab with MEa &...

Lots to look good about the 2 PhD projects AFME are part funding. Regarding FND my concern is regarding the mark Edwards research ad the idea is for testing before and after treatment, for FND the treatment is essentially behavioural and would involve I assume CBT, rehabilitation, physio get...

IBS fatigue vs ME , not comparable in my view. Trivialises to say we share some of theirs, they some of ours

If the feature is already recognised in cancer and MS has it lead to any treatments especially in MS?

Dr Nina muirhead can be seen on a video on AFMEs page where she attended their Geneva thing and gave a talk. I'm all for medics getting on board as long as they're aware of the history /politics of the illness, The fact many have poorer treatment and outcomes than their own etc. This lady does...