Search results

Given that forum threads are open to all members, I welcome people from all nations giving their perspective. It can contribute usefully to the discussion. While I applaud the wish to see more donations, I'm not clear what we as forum members can do towards this that isn't better done by the...

I'm not sure what you mean by us focusing on UK based solutions, @Sasha. What are you envisaging?

It looks to me like they are saying they intend to spend the bulk of their reserves on projects with local health boards on developing their ME/CFS services to be NICE compliant. I think they should be open about what they are actually doing. If it means working with BACME, and aiming to get...

I guess it means they know they have made a mess of their governance and Articles, and are putting a positive spin on needing to get an expert in to help sort out the mess.

The term pacing is fraught with unspoken assumptions on both its meaning and therapists unfounded confidence that: a) they know better than patients how they should do it b) it can't cause harm c) baselines exist and can be controlled by the patient d) any program of activity and rest can be...

Thread here: Antihistamines improve cardiovascular manifestations and other symptoms of long-COVID attributed to mast cell activation, 2023, Salvucci et al

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...