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You are quite right to be upset by such posts in Long Covid communities, Yann. I'm sorry to hear that's not being stopped by moderators. We certainly don't allow such behaviour here, so you should be safe here. I think if I were joining an online community other than this one, I would want to...

As many told us in the Cochrane exercise harms petition, those who started GET when mild often ended up severe after 'treatment'. They are not two different conditions.

Thread here: Cerebral Blood Flow and Cognitive Performance in Postural Tachycardia Syndrome: Insights from Sustained Cognitive Stress Test, Wells et al, 2020

The NICE guideline isn't perfect. Sadly it stll allows for exercise programs for those who 'feel ready', but it does specify that this has to be within limits imposed by PEM, not pushing through them, as GET does. And it does, make it clear they mean symptom contingent. I agree, @Evergreen...

I get what you are saying in terms of the effort and time commitment needed from the patient when they agree to 'therapy' but I don't agree with some of your conclusions. I don't think it's just about whether the therapist is abusive. There's something more in the examples you give that I find...

AMRC’s principles of expert review AMRC members must use a rigorous expert review process to inform which research to fund. This is listed under headings: Proportionality, Independence, Diversity, Rotation, Impartiality, Transparency: There is also a section on the website about bullying and...

I took that to mean if someone has long Covid and is consulting a clinician, perhaps because they get breathless when walking, and are worried about restarting sports or other vigorous activity, then it may make sense to advise them to increase activity gradually rather than diving straight in...

I think that's wise advice for future research by @Dania Ala. If you really want to make a difference for people with ME/CFS in the future, stick around here and continue to listen and learn. I think you have made a good start by listening and adapting your project to provide questions in...

I think @Alis makes very good points. In very severe cases where medical care is needed, a care plan should be about the specific care needs of the patient, such as short visits, low light and sound, assistance with eating, not too many different people to deal with, following NICE guidelines...

Which is daft because it goes against the whole point of symptom contingent pacing. And the clinician only gets a glimpse of what the person's life is like, they can't know the reality of what is feasible.

Dear Trial By Error Supporter-- Usually the spring crowdfunding is in April; this year it's happening next month. Before it starts, I thought I'd share a few hightlights of my work during the last six months. (You can see all of my Virology Blog posts here.) Last week I posted an interview...

I can see that it makes sense to put in writing for both patient and clinic any advice leaflets etc that has been given, medications prescribed, and any plans for things like frequency of follow up and contact details of relevant clinicians. Written advice on pacing and use, for example, of...

https://longcovid.scripps.edu/wp-content/uploads/2024/04/Long-COVID-Wearable-Study-flyer-202402.pdf We aim to see whether wearable devices improve Long COVID symptom management. Recent studies have shown that activity management can be an effective method of managing and treating symptoms of...

I have used to BACME contact form to send the following request:

:hug: I'm glad to hear it's successfully done. Rest well.

Not critical enough, given the knock on effect on disablity benefits being made dependent on doing what we're told by rehab clinics.

That list could be summarised, 'are you healthy?' What a ridiculous and inappropriate questionnaire for sick people. Even for well people, the questions imply judgement about how people should live and behave. I hate the whole resilience movement, as it's usually applied to people in...

For discussion of the section on eating problems for people with very severe ME/CFS, see this thread: Severe difficulties with eating in ME/CFS

United Kingdom: BACME Guidelines for Severe ME, 2019 and 2024 update

Some posts about BACME and MEA documents have been moved to this thread: Severe difficulties with eating in ME/CFS