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Yes, if you include in 'et al' all of BACME and their continuing dominance in ME/CFS provision. If FUNCAP were adopted instead of the Tyson PROMs it could still be a problem if it's used to justify ongoing rehab style clinics, though it might be harder to misuse it to pretend the clinics are...

This looks good, but I'm not clear what the status is of Early Day motions.

I am objecting on 3 grounds: The PROMs designed so far show little undestanding of ME/CFS, PEM and the cumulative effect of exertions, so any data from them is likely to be highly misleading, and they are far too long and the options provided for each question often uninterpretable. The...

Their patient group includes Paul Garner, others who recovered from Long Covid and the chair of Recovery Norway, so their response is unsurprising. Similarly their clinician group are fans of their psychobehavioural approach.

I am reminded of Sarah Tyson's response on this thread earlier in this project when we pointed out that pwME have been harmed by the use of questionnaires. Her response: 'Don't be silly'. We are not safe on her hands. The clear purpose of these PROMS is the perpetuation of rehab clinics as the...

I'm taking up Tyson's challenge to examine the methodology in the book and Wikipedia article she recommended to me (to shut me up) about the validity of her methods. I bought the book. It's so heavy I couldn't hold it to read so I took my scissors to it today and cut out the relevant pages. If i...

I notice 3 of the authors are at New Zealand universities, and Chalder is still at King's in London. Does this mean anything?

I doubt the Minister even sees a lot of the replies to written parliamentary questions, let alone choose the wording. I agree the responses are useless, bit they are probably written by junior civil servants, or these days even by AI. My MP recently boasted in a letter to constituents that he...

Go to this thread if you want to discuss Perrin's theories.

Something that puzzles me about exercise interventions. For people with an illness that limits their activity meaning they have had to give up or restrict activities they want and need to do, why is it considered helpful to persuade them to do completely pointless physical activity that will...

As well as really carefully tracking and recording data before during and after trying a particular treatment, I think other changes the person is making and has made recently need to be taken into account in making claims. I make no comment specifically about the two cases described, as I know...

Is it clear which group he's descrbing as 'cult like'? Does he really think the solution to his confusion about which side of the fence to sit on is dialogue between the functional 'cult' and the biomedical 'cult'? That's not how science works.

I agree on a quick read through it does look pretty good. What sort of feedback was ignored? I would like it to say something about severity levels, very severe ME/CFS and most pwME not being able to work or attend education.

It's fine to discuss whatever is in the open access video approved by the speakers. What we need to avoid revealing is material from individual speakers that was in their talks but hasn't been made open access. So people who attended the event and watched the talks aren't allowed to publish...

I have no advice to give except to be very wary of attributing remission to anything specific, since people's lives are complicated, and we are plagued with people claiming they have cured their ME/CFS with brain training, LP, ear seeds, spinach, radical resting, cold bathing, and any number of...

We have a thread on Joshua Leisk's unpublished preprint of his ideas from a few years ago. https://www.s4me.info/threads/the-true-nature-of-an-autoimmune-disease-leisk-and-nocon-2021.19583/ He joined in the discussion for a while and was clearly touting for people to test his protocol. We have...

Unbelievable giving Joshua Leisk top billing on the speaker list. What were they thinking? Last we heard he was a gym instructor peddling a made up protocol that kept changing when the people he was experimenting on found it didn't work, and selling supplements.

I would advise against trying to create any kind of overview based on this discussion. Lives and illnesses are complicated . It's fine for us to share glimpses into how we interpret what may have triggered and what may be helping, but any summary cannot be more than a collecting together of...

Some people find therapy or counselling helps them cope and pace better, which may enable them to reduce the harm caused by over exertion, but that doesn't mean ME/CFS is caused or perpetuated by psychological factors. I'm glad psychological therapy helped you. But not all psychological therapy...

1, Cause: unknown biology. Possible genetic predisposition, given family history. Trigger: onset sudden following a stomach bug, cause not investigated. No psychological association with predisposing, precipating or perpetuating my ME/CFS. 2. Nothing has helped, pacing helps to slow...