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Copied from the link: Post Covid Network Nederland and the Radboud Center for Philosophy and Society are hosting a workshop on Post-COVID ethics. The main language of this event is English. Theme of the workshop Long Covid entails a range of often severely disabling symptoms that persist for...

Discussed on this thread, I assume it's the same version 'Pacing for people with M.E.' Action for ME booklet - revised and updated January 2020.

I started reading the article but found the advertisements so objectionable that I decided not to read on. (objectifying semi naked women). I hate click bait articles. I doubt the article was medically accurate anyway.

I don't want to derail either, so I'll just say I think there are likely to be different categories of material published by the forum, which can include short fact/information sheets and longer articles. If that happens, this sort of article would fit in the latter category.

Has this got any better now Esther Crawley seems to have vanished and her last 2 big studies, MAGENTA and FITNET have reported in publications to be ineffective and even harmful?

I think one of the differences in terms of amounts raised by the charities is that 'the public' understands that Parkinsons Disease and MS are horrible serious diseases with no cure. There is lots of incentive for people who perhaps know someone with one of these diseases to choose their...

Wow, thank you! I am a bit obsessed with getting PEM defined separately from all the other forms of symptoms during and after exertion. The problem is, none of the diagnostic criteria are as explicit, and lots of researchers and clinicians conflate them all into a muddle of 'symptoms after...

A trial of a psychological therapy for children or adults that is based on telling then to ignore their symptoms, or that their wrong thinking is perpetuating their symptoms or other such unevidenced brainwashing is so unethical it should never pass an ethics committee and get approval. If...

I agree it's unhelpful to use confusing language. I was using the term used by the person I was writing to. I think symptom guided pacing might be easier to understand. The comparison is with schedule guided pacing, where you plan ahead when you will do stuff and when you will rest, regardless...

My point is those who do manage to increase activity levels it's likely that improvement came first, then enabled them to do more.

I'm sure you do need a referral. I don't know whether it can be from a GP or has to be from a specialist.

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...