Search results

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

Hi, @megallen, welcome to the forum. Thank you very much for explaining the background to this article. I hope you will stick around and join in more of our discussions.

30+ years of Wessely, White, Sharpe and the rest of them.

AfME has announced Sajid Javid as parliamentary champion for ME, and a debate, see this thread: UK Parliament: Westminster Hall debate on ME/CFS, Wednesday 1st May 2024, 16.30 - 17.30

He has also been very rude and dismissive on Twitter.

They are using DSQ to measure mild or severe PEM. I think that's problematic.

I have skimmed the article. The downside is they presumably only included mildly affected people, since it was done online in groups lasting 2 hours. Having said that, I like the fact that the authors describe the discussion with and between the people with Long Covid relating to managing...

I don't follow your logic. It's clear very large numbers of people have Long COVID, and of these a significant proportion experience post exertional malaise, and other ME/CFS symptoms. The comparison with Crawley's figures of the past is surely irrelevant. Those figures were from before Covid...

We don't know yet what that review will say, and whether it will have any effect.

There is also the problem that doctors treating pwME are unlikely to take notice of 'ME organisations'. And any help by medical advisors to ME organisations for individuals of necessity has to be confidential. I have criticised AfME for its close ties with BACME, specifically Gladwell and the...