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He's a Renegade Research person now.

The host spends much of his time on X dismissing anything ME related, shitting on advocates and charities, and winding up ME/CFS patients. He genuinely believes LC has nothing to do with ME/CFS and that ME folks are 'grifters' who have 'hijacked' LC. Others here will know him as 'Dave the LC...

He was also invited to talk at one of the Stanford ME/CFS Working Group meetings:

This, from the main protocol page, is exactly what Paul Garner preaches — there's no difference. Garner could have written this. Just pointing that out (not commenting on the science of it all, and it's potential application in ME/CFS, as it's just another hypothesis at this stage).

Not to mention that Whitney has been slowly improving for years. The first improvement was attributed to Ativan and/or Abilify if I recall correctly.

This should come as a suprise to no one.

I would like to trial ivabradine. Propranolol seems to help me, especially with HR, but I still get the heavy-weight-in-chest feeling and blood pooling when my OI is flaring.

I assume #MEAction Scotland will be folded into the new charity?

I'm aware of Ciara Wright (https://positivenutrition.ie/about/) who posts on Twitter. She posts quite a bit about long covid.

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.