Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

[Hutan]

I believe Kaufman has helped with Rapamycin and Abilify studies.

I don't think Kaufman has co-authored any Abilify studies. I may be wrong but I can't find any evidence on the forum or in a quick search that he has. The only Abilify study I know of is the 2021 Stanford one which wasn't a trial. It did not provide good evidence to support clinical use.

 

[MelbME]

I don't think Kaufman has co-authored any Abilify studies. I may be wrong but I can't find any evidence on the forum or in a quick search that he has. The only Abilify study I know of is the 2021 Stanford one which wasn't a trial. It did not provide good evidence to support clinical use.

Often clinicians don't make it to authorship but they still help with studies. Depends on the level of help.

 

[Hutan]

Often clinicians don't make it to authorship but they still help with studies. Depends on the level of help.

The trial participants attended the Stanford University clinic, so it's unlikely that Kaufman had much involvement. Kaufman was not listed in acknowledgements.

(Janet Dafoe was acknowledged as helping with the writing though. We have a tweet of hers on the study thread - she said "Now that this is published perhaps it will help people get their doctors to prescribe it." The study was no where near good enough to suggest that Abilify is a useful treatment for ME/CFS. It wasn't responsible to use her profile to promote the drug to a desperate population. The comment certainly didn't help educate people in how to critically analyse a study. )

 

[Braganca]

I do agree that the lack of publications in the space is a big concern, I have seen several presentations for the clinicians like Dr Bolognese.

A top cervical spine surgeon in Ireland reviewed my cervical spine images and said they were totally normal. I had been offered a full cervical spine fusion by Gilete and diagnosed CCI, AAI etc etc. The Irish spine guy was almost sputtering with anger describing Gilette’s practices because he and his colleagues in European hospitals see the aftermath and cannot help the people who have had this hardware placed permanently in their spine causing permanent injury. He said he and his colleagues around Europe invited Gilete repeatedly to their annual meetings to share data and present — Gilete ignored them.

I was in the original Jen Brea Facebook group for CCI from the beginning. There were people who did recover from surgery or multiple surgeries. Nearly all of them had symptoms that were not typical to ME/CFS (along with ME symptoms) — neuropathy, neck pain, tingling, numbness or paralysis on one side of body or caused by neck movement, seizures. (Jen exhibited some of these herself in unrest). Many had history of trauma to the neck (car or gym accident). These patients still fell through the cracks of mainstream medicine I believe, and were given an ME diagnosis.