Search results

Week beginning 16th December 2024 Cochrane announcement Update on ‘Exercise therapy for chronic fatigue syndrome’ Announcement quoted in full: "In 2019, Cochrane published an amended version of the review 'Exercise therapy for chronic fatigue syndrome’ and, at that time, announced an intention...

Looking at the Charity Commission rules on holding AGM's I note that they changed and now not all charities have to hold an AGM. However, looking further, it seems that Charities like the MEA that have voting members, not just trustees, do need to hold an AGM...

Thank you, @ME/CFS Skeptic. That's a really good article giving a clear overview of key research this year.

It's odd that Garner doesn't seem to have noticed that he doesn't have thousands joining him and signing petitions supporting his approach to Long Covid being provided on the NHS. The fact that he alone is quoted repeatedly should give him a clue that his theory is bunk.

God I wish Garner would shut the f*** up. He's doing so much harm.

There's more about the issues raised in this letter on the MEA news thread. https://www.s4me.info/threads/united-kingdom-me-association-news.19070/page-62#post-575813 Relevant documents and the Q&A I refer to can be found here: https://meassociation.org.uk/about-the-mea/policies-and-documents/

I have just sent the following personal letter to the Trustees of the UK ME Association. Or at least to some of them. I had 2 email addresses and guessed the rest - at least 2 have bounced back. __________________ To the trustees of the ME Association, re concerns about the MEA trusteeship...

ME/CFS Research Unwrapped

A living review should mean any new research is added in an updated version. As Peter says, the Larun review is the opposite, perpetuating an old review by publishing the old review with a new date. I suspect in the case of the review published on this thread it's a trick to persuade the...

The question of harm bothers me here. Persuade a patient that they are ovesensitive to pain, and they will do their best to ignore all pain, including pain that needs urgent medical attention. And that's compounded if their GP thinks they are over reacting to all pain, so doesn't investigate new...

I agree. I think it's good to go for something memorable and distinctive, even surprising.

Worth a try. You could invite participants to say more in a post about their particular pattern.

ME/CFS Science Analysis seems a good option.

It's difficult to get such fine detail in a poll, as patterns for individuals will get lost in the muddle of everyone's responses, I think if you do it hour by hour. Maybe better to just ask how many hours per day upright, and ask for individuals to post their pattern of horizontal and upright...

So the GP's didn't always believe what they were telling patients, but they mostly were happy to fob off patients with lies, metaphors and nonsense.

The assumption throughout is that all the conditions mentioned, including ME/CFS are caused by central sensitisation. Use of the questionnaire:

I'll consult the staff.

A further thought. We want your blog to be read widely and remembered as a good source of reliable commentary on ME/CFS research. To achieve that I think a distinctive and maybe a bit surprising name is worth considering. That's why I like Skeptic. It's memorable. But I do see that it can give...

ME/CFS analysis, ME/CFS scrutiny, probe, audit, analysis, commentary, detective, sleuth ... I like words that suggest there's some analysis or commentary, not just a summary of some science. To me ME/CFS Science could just be a list of science papers with no commentary. It is also a bit close...

We tried that with our series òf letters which we sent to various senior people. I think that's probably why they issued a warning with their announcement of cancellation of the update, by saying any responses sent to anyone other than the complaints department would not get a response.