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I also don't agree, as I've said, with the nows the time - it was before - or the window will shut talk. I don't think #MEAction have any intention of the patient movement doing anything but becoming louder until our aims are reached.

NICE doesn't require PEM , it requires PEM or PEF, PEF could be a deconditioning response and doesn't correlate with the global exacerbation of symptoms most experience Previously Holgate with charity support wanted NICE criteria to form the basis of MEGA so this will be a big question for me...

I actually think it's a cheek to even raise the Ricky gervsais thing and say he should give us an apology, it's irrelevant. It's not HIM I want an apology from or action from and then the minister proceeded to mainly defend the [[appalling]] status quo whilst jarringly quoting unrest as if he...

Yes Stephen pound was so caring and persuasive but had the name wrong and then throwed in it could be psychosomatic WTF, not Helpful. And yes FITNET & magenta, LP Research wasn't even mentioned which was a big error, talking about PACE and kids but not the Behavioural research on kids which Is...

Today should really have been about action.

Some of the speakers including Carol & Ed davey were absolutely great , especially in following iimes £20m call for research but the minister has largely just defended the status quo, peppered rather ironically with quotes about "unrest" which was all about challenging the status quo and yet...

The doctor probably reflected typical NHS gp, i.e. Only superficial understanding. Doesn't seem to have checked out for example the bmj info which is actually quite good on current scientific knowledge. There was a question she asked at the start regarding Emma's reaction to the stigma which I...

I think it's generally pretty good. The psychological was only raised as the basis for pace, which it kind of was, although Jonathan's right it's easy for wesselyites to step in and say that's a simplistic misrepresentation. The BPS model isn't saying "it's in your head" it's saying that...

Yes as I wrote it I had the sense of "been here before". I didn't search up the PR thread , I searched Carol head and then saw the thread and then it all CAme back. Im sorry if I'm misrepresenting you again but how you write including on the other thread the view that it's not the states job...

The question on why the millions affected haven't to date in any way been mobilised is an interesting one. Why money isn't coming in from the millions affected and their loved ones is obviously debatable, like any issue there will be different opinions, but an interesting one. Perhaps a survey...

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.