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For people wanting to discuss the contested syndromes, here are a couple of the threads: Mast Cell Activation Syndrome (MCAS) - discussion thread EDS and ME - is there a connection? hEDS @Tilly, it would be good to hear on those threads what you have witnessed and lived through that makes you...

This came up in the search results when I was browsing for something else. The Australian government has released the document last week as a result of an FOI. It appears to be a record of emails between NCNED and the Australian Ministry of Health about the development of clinical guidelines...

Do you Jonathan or anyone have first hand information about this HSE clinical guideline for ME? Do we have a thread on it?

This recent study of about 30,000 people reported incredibly high rates of people reporting having been diagnosed with CFS in the US: The Physical and Mental Health of Post-9/11 Female and Male Veterans: Findings from the Comparative Health Assessment, 2025, Dursa et al If we believe that...

There's a comment facility on that MEAction page.

https://www.meaction.net/2025/02/20/meactions-medical-flashcards-featured-by-cdc/ It's very disappointing, it's a real own-goal. We've got to get advocates better informed. Perhaps we can contact the CDC.

First, 87 studies of cognitive dysfunction following Covid-19, before January 2023? That seems a lot. Second, for goodness sake. We should encourage people to think well because it might reduce the impact of Covid-19 on their cognitive loss? There are many better evidenced and far more...

PETITION UPDATE Cochrane: Withdraw the harmful 2019/2024 Exercise therapy for CFS review Cochrane responds to our 2023 complaints 23 Feb 2025 In this update, we tell you about a video from one of the leading YouTube science channels about exercise and ME/CFS, and about researchers and...

Yes, a good article . Thanks to James and Emily; they did a great job with their quotes. I didn't understand this bit. Can anyone explain what is happening here: (I thought the mention of oral health in that quote from the HSE spokesman was slightly weird. I can't see a specialist doctor...

You are good at this @ahimsa, please don't stay out of the discussion if you don't want to. The problem with giving a definitive percentage is that the studies are quite a mess, with varying requirements and assumptions. First the Long Covid cohort, often is highly selected (just hospitalised...

In order to avoid a duplicated discussion, if you want to discuss this flashcard resource, go to: CDC and #MEAction: ME/CFS Resources for Medical Students - Flashcards

I suppose it depends on the granularity of the assessment of symptoms. As in 'did my activity last week cause PEM? If yes, I should do less this week.' Versus 'do I feel fine right now? If yes, I can keep doing what I am doing'. You are right @Utsikt, that the question and answer does not...

That was actually one of the few questions that I thought was ok. I think most of it is a mess of poorly evidenced conjecture. I have no idea why the CDC would be supporting this and it reflects poorly on MEAction also.

Which of the following is considered the best activity management strategy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)? What is the best strategy for starting a person with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on a new medication? Your attending...

Yeah, there are a lot of problems with these flash cards. Here are some of the first questions. What percentage of people with Long COVID are estimated to meet the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)? A: 50% What percentage of people with Long...

Can we see the flashcards anywhere?

I posted again. The comment is showing for me now, although there is a link to Change.org that I didn't intend. Hopefully that hasn't prevented the comment being seen by others? Edit - I think it did. I tried again with change dot org, and that seemed to fail again. So then I left out any...

Ah, I don't think my comment is showing, maybe the link to the petition resulted in it being deleted. I'll try again. (crosspost)

Thanks for posting the link @Utsikt. Yes, it is surprisingly accurate. And yes, of course there are still a few bits that aren't quite right. The number of comments is really amazing. I've just added a link to the Cochrane petition. I should have thought of it yesterday.

@dave30th, if other clinicians and researchers want to sign your letter, should they get in touch with you? Are you accepting further signatories? We'll mention the letter in a forthcoming petition update. If you are accepting further signatories, do you want us to mention that clinicians and...