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I am very concerned that some ME/CFS clinicians, clinics and charities are recommending various versions of pacing up, and claiming it's NICE guidelines compliant because it's not GET and it is 'symptom contingent' therefore safe. I was asked by someone who recommends pacing up to explain my...

There's a big difference between the MEA and S4ME in this regard. We are just providing an online space for people interested in ME/CFS to discuss things. We don't charge membership fees, are not a registered charity or company which has to abide by charity and company rules, or have paid staff...

This review article might be useful, Biopsychosocial risk factors of persistent fatigue after acute infection: A systematic review to inform interventions It's paywalled and the abstract doesn't spell out what it means by: Consistent risk factors centred around cognitive/behavioural illness...

Those clinical professionals who change their minds about BPS based only on their own experience can be unreliable allies, not just a certain Mr Garner, as they gradually get hooked in to some mind body guff or other and convince themselves that they are among the strong and stable ones who can...

This thread might be a useful source of publications. Simon Wessely Research & Related Quotes particularly posts 3 and 4 with quotes and references on cause and perpetuation

We should also be aware that this discussion has only been running for a couple of days. There may be other forum members who would like to make suggestions before the process is set up who haven't had a chance to join in yet. Let's take a few days to catch our breath.

It's great to see so much enthusiasm for this idea, and I don't want to discourage anyone, but before anyone races ahead with organisation and deciding who does what, I think if this is to be an official forum project producing materials that are published by the forum, the committee will need...

I think that is easily covered by saying someone who had PEM but now doesn't but still has some symptoms has ME/CFS that is in partial remission. My point is that someone who has other ME/CFS symptoms but has never had PEM as part of their symptoms does not fit ME/CFS diagnostic criteria, so by...

Right now in the UK asking, however nicely, for any special provision in hospital is a non starter. They are overflowing with acute infections on top of everything else. A friend's father in law who is very sick and unable to keep food down or walk without falling spent 36 hours on a chair in...

I think we need the initial couple of weeks forum wide discussion, even if it does slow things down. I could, for example, pick my favourite bugbear topic at the moment, defining PEM, gather a few people who agree with me, and spend hours refining a document, only to find wide disagreement when...

Only if they are done one at a time. We could run 2 or 3 in parallel with different writing groups. I don't think we should rush it.

We've already done that in one of our letters. They took no notice.

I agree that at some stage in each document we will need a small group to go to a private space to organise and polish a final version. I think it would be worth at least for a week or two at the start for each document doing a members only thread where anyone can join in and add ideas. The...

The look good, but give a very brief overview and don't cover everything on the list @Jonathan Edwards just posted.

That seems like an even bigger task, as most charities have a lot of resources accumulated over the years. We have reviewed some documents produced by charities when they have come up for discussion and provided them with our suggestions. I think the general view from charities is that they have...

This looks important:

I think we should go for quality rather than quantity. Focus on central issues such as defining PEM including differentiating it from other forms of exertion induced symptoms, explaining pacing and common strategies and problems, and why variations of GET such as pacing up are unevidenced and...

I disagree. We're trying to get away from diagnostic criteria such as Fukuda and Oxford that don't require PEM.

That was the plan, but it was always within strict paramaters directed by Cochrane. The IAG was to advise the review writing group and give feedback on the draft protocol, and the IAG was to set up a public consultation on the draft protocol. As far as we know, the only consultation that...

Perhaps a useful starting point would be to ask members to put forward existing resources that they think are particularly accurate and helpful. No point reinventing the wheel when there is undoubtedly good stuff out there.