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Call me an old cynic – and I appreciate that you know a lot more about this than me, Adam – but I would be surprised if the eminent members of the BPS lobby haven’t got a pretty good idea of what the new Guideline is going to look like. They seem to have a pretty strong omertà, and the pro...

For anyone who missed it: No response from SW of course.

YES. This is the point, which needs to be reiterated again and again and again. What BACME [edited to correct acronym] needs to explain is why they are rejecting the inflexible approach? Do they acknowledge the problems with the RCTs? Do they accept the validity of the evidence of harms? What...

The above link states: “This has undergone editorial and peer review as a new submission. It has been published with the DOI http://dx.doi.org/10.1136/bmjpo-2020-000797, and clearly links back to this retracted version so that the history of the paper can be seen.” Clearly links? You did well...

No reply from Prof Greenhalgh.

Only mention I found of ME/CFS: The conclusion states: Unique? As far as I can see there is no explanation of what the multi-disciplinary rehabilitation services should look like. This (from Box 1) doesn’t really tell us much: I couldn’t see any mention of pacing or PEM, which is odd as...

Eminence?

For some reason Professor Greenhalgh, who appears to be taking a lead on long-covid, has deleted her tweet congratulating Dr Gerada on being made a dame so I’ve attached a screenshot. As far as I’m aware she still hasn’t made any comment on the similarities between long-covid and ME/CFS, or...

Encouraging to get a re-Tweet from Jane Garvey (presenter of BBC Woman’s Hour):

Just to clarify, further to what I wrote above, I completely agree with Tom and others on this. If someone meets the case definition of ME/CFS then they have ME/CFS, whether their illness started with Covid-19 or anything else. I understand why such patients may look at the way people with...

I’ve not kept up with this thread recently so apologies is this has already been posted: BBC Radio 4, 11am Tuesday, 29 September: Long Covid, presented by Adam Rutherford: https://www.bbc.co.uk/programmes/m000mzms BBC Blurb: One of my concerns about linking long-covid with ME, is that it...

After my FT letter, I received an email from a scientist who told me that he was “attacked” by the KCL psychiatrists et al at a Royal Society of Medicine meeting in the 1980s. They claimed that his data could not be trusted because he was diagnosed with post-viral fatigue syndrome and he had...

My motivation for posting these questions was primarily to draw the issues to the attention of doctors who follow him on Twitter, and particularly to the 39 doctors who wrote to the BMJ. SW has not replied to any of my questions yet but his co-author, Prof Anthony David, has:

In the BMJ letter the 39 “doctors as patients” write: The above reminded my of Trisha Greenhalgh’s negative comments about ME/CFS patients in her BMJ article “Towards an institute for patient-led research”...

That is what I thought but I’ve not managed to follow the research as closely as I would like and I wondered if I had missed something. It is very frustrating and concerning to me when scientists present conjecture (and in some cases falsehoods) as facts. I don’t know if this happens more in ME...

The ME Biobank use a Tanita machine for calculating BMR (see: https://tanita.eu/help-guides/understanding-your-measurements/basal-metabolic-rate/). I've no idea how accurate or useful it is. I'm guessing that if low metabolic age had been a common observation in people with ME, and was deemed to...

From the Naviaux’s website: As a non-scientist patient this makes sense to me as a possible explanation for how I feel. What I am not clear about is how much is conjecture and how much is established scientific fact. Have Naviaux’s findings which suggest that ME/CFS is a “dauer-like metabolic...

Dr Byron Hyde surrenders his medical license (S4ME thread, August 2019): https://www.s4me.info/threads/dr-byron-hyde-surrenders-his-medical-license.10892/

@dave30th I don’t know if you’ve had a reply from Dr Ghebreyesus but I wanted to bring this thread to your attention, and particularly the information that @Dx Revision Watch has shared about attempts by different orgs to communicate with WHO in recent years. [Edit: link removed from my...