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Not sure if you are aware, but that was BACME's original name until around 2021. They changed it to match ME/CFS nomenclature whilst retaining the 'BACME' acronym. These NHS pages often need updating.

Just to be clear: I've seen no evidence that Ella was on the NICPM ward or under the care of the trust's ME/CFS service. She was likely far too ill for either. I'm not sure about any NICPM staff involvement in her care.

This post has been copied to a memorial thread. ------------- There's a post on FB from yesterday saying that Ella has sadly died:

Genuinely not sure if this is a real person. They seem to have verified (student) email addresses at Edinburgh and Cornell according to ORCID, but lots of the info on their website is suspect and so are all the AI articles and letters. Some of the early articles are nonsensical. Anyway, I can't...

Can someone provide access to this, through DM if needed. It's paywalled. Thanks.

We do that here daily. And most of us have no clinical sciences background. LLMs can write full papers and even generate the data sets and code to go with them. Letters are child's play.

A Senior Research Fellow, but then also currently a student at Cornell and previously Edinburgh! It's all made up.

Based on that ORCID profile, this letter is likely AI generated and this person is likely not real.

I think this is unlikely, although I do believe he is intent on influencing treatment and care via guidelines, etc. As i have said before (probably in this thread): he had a very powerful experience in that he recovered around the time he was introduced to the mind–body stuff and clearly...

https://patientresearchcovid19.com/projects/patient-generated-research-hypotheses/ I thought this was a good idea. Seems the last issue was in 2024.

I think there is space for patients offering hypotheses and anecdata as long as they are labelled as such. So often hypotheses are presented as fact. There was a patient-led hypotheses journal for long covid, but I haven't seen it mentioned for a long time now and wonder if it died a quick death.

The Germans seem really passionate about this line of research but the rest of the world doesn't seem convinced.

The GP I saw was new to the service. I'm not even sure they are still there as they're not listed on the AfME website. It was not worthwhile, apart from to get a detailed letter about my circumstances. The GP was interested in holistic care and basically had nothing to offer. No interest in...

Has the highlighting in these documents been done by Simon? I have absolutely no doubt that Garner is trying to influence, and may have already influenced, other guidelines.

I will tweet them and see if I can get a response.

Well, it's not good that three clinics are apparently closing, especially when rates are rising, but I would suggest changing the title of this thread to something more accurate, as we don't have evidence that all of them are closing, and it might scare people.

I'm suprised she is not listed as an author because I believe she is one of the more active members of BACME and a lot of this dysrgulation stuff has come from the Yorkshire Fatigue Clinic, where she works. She is herself a GP with special interest.

Here is the NIHR award page: https://fundingawards.nihr.ac.uk/award/NIHR174857 Note that Vikki McKeever of BACME is part of this project.

It doesn't matter if the explaination is correct or not. A key part of this approach is the belief that just telling patients stuff, whether it's actually true/verifiable or not, can help. I think they call it psychoeducation.