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Thank you Jonathan for doing this and everyone who's contributing. Only able to have a very cursory read so apologies for not quoting some of the suggestions I'm referring to. I think some form of collaboration between S4ME and AfME would be an excellent outcome. Some points that I thought...

Does anyone have a link to the archived 2007 guideline or saved a copy? In this thread I could only find the minutes of the 2007 gl committee and this document on "Occupational Aspects of the Management of CFS -- A National Guideline" which is still online. I thought it could be helpful to...

Patient sample is the remainder of 12 patients in the initial study: Deep Phenotyping of Neurologic Postacute Sequelae of SARS-CoV-2 Infection https://www.neurology.org/doi/10.1212/NXI.0000000000200097 Clinical Characteristics "Between October 2020 and March 2021, 12 participants were...

(Apologies once again for just popping in -- and thank you to everyone who reported on the coroner's summary)

From skimming it seems that the coroner only considered the effect of ME on nutrition but not the other way round. Maybe that was also the reasoning of the hospital staff, social service etc.: No reason to improve nutrition before improving the patient's ME/CFS? Did neither the consultants nor...

Article now peer-approved. https://www.qeios.com/read/T9SXEU.2 (Sorry not able to check whether any edits have been made.)

Where there rapid responses to the rebuttal too? Or do you mean the two RR to the anomalies paper? The latter are still there: https://jnnp.bmj.com/content/94/12/1056.responses

Paywall now installed again. PDF still accessible via web.archive: https://web.archive.org/web/20240521100143/https://jnnp.bmj.com/content/jnnp/early/2024/02/28/jnnp-2023-332731.full.pdf (@SNT Gatchaman -- perhaps add the link to the opening post?)

Copied from another thread and apologies if that has been discussed elsewhere: How is the nutritional status assessed? Question prompted by... So on what did Dr. Warren base his assessment/ on what should he have based it? Did they measure all relevant parameters that they should and could...

Not sure if that needs a registration at research gate? If so, for citation you could instead use the gift link to the PDF on bmj provided here -- still working at the time of posting: Edit: It would of course to be good to have a gift link to the rebuttal too.

@Robert 1973 Thank you for considering writing a comment on Miler's Observer/Guardian piece. Interesting. I probably last checked in May or June when both were still open access. Did you save the articles before? If not, I hope someone will share them with you.

Still I think it's possible that individual patients with ME/CFS can get all sort of structural issues as a random comorbidity too -- be it cancer, stroke or structural motility problems with the stomach etc. If pwME were immune against getting such structural issues, I think that would be...

[Q Thank you for sharing your thoughts on how to proceed with your Qeios article in light of recent developments. Looking forward to seeing how you will include your thoughts there. I think it's also possible to post an addendum to your original version. On the other hand ... This would...

Sure, like e.g. severe morning sickness in pregnancy? Edit: But even if inability to eat was 'functional' -- no reason to let patients die!

No, as he said: just biased reasoning from his and his friends' "clinical experience"

Repeating that same argument over and over again doesn't make it more reasonable. 1. It doesn't change the evidence on CBT / behavioral interventions for ME/CFS (i.e. they don't work). BBC Radio 4 Today, 18.082021 (listen again online from 07.53); transript by @Lucibee posted here 2.

So the "if offered earlier" seems to be key? Also wondering if in the UK getting a place at a Hospice was an option -- at an earlier stage for setting up tube feeding with the possibility to change to IV feeding when needed, or even at a later stage to supply with IV feeding -- just for the...

From the Times Article /July 26 2024 [link] "Weir believed that intravenous nutrition was an option that could save her life. By September Boothby O’Neill was receptive but doctors balked. They worried it would be fatal because of risks including sepsis. It would keep her living, doctors said...

It seems that worked -- see latest Times article / link posted immediately above.

Perhaps try to ask on XTwitter? Form the screenshots posted here I think the x account of ME Advocates Ireland / 'meadvocatesire' could be in.