USA: Dr Kaufman, Center for Complex Diseases

Hutan

Hutan

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Copied from Hypothesis: A Mechanical basis: Brainstem dysfunction as a potential ethology of ME/CFS and Long Covid, there is more discussion on that thread about Dr Kaufman's role in promoting spinal surgery as a treatment for ME/CFS.


I commented upthread that another author, Kaufman, has a practice providing clinical care to people with ME/CFS.
from a Health Rising blog:

What an episode this is! It’s quite possible there would be no discussion of craniocervical instability (CCI) in ME/CFS and related diseases without Dr. Kaufman. Jeff Wood – in the most remarkable display of self-diagnosis I’ve ever seen – started the CCI ME/CFS conversation off about five years ago.

Somehow Jeff – who was very severely ill at the time – came up with the idea that he had a condition that no one had connected with ME/CFS before. Not only that, but it was a rare condition afflicting the upper spine which (in his case) would require major spinal surgery to fix. Jeff, not surprisingly, struck out in his attempts to have doctors give his hypothesis a shot – until he met up with Dr. Kaufman.

Dr. Kaufman gave him the referral and the rest is history. Jeff had the surgery, fully recovered, and spread the news and now CCI, tethered cord syndrome, and other spinal issues (cerebral spinal fluid leaks, idiopathic intracranial hypertension, cerebellar tonsils) are part of the diagnostic algorithm for many ME/CFS experts.

Doctors have come a long way since Jeff and Jen Brea startled the ME/CFS communities with their remarkable recoveries from their severe ME/CFS. Please note, though, that while there have been some remarkable recoveries, some people have not done well at all with surgery, and some people have had much more moderate results. This is a work in progress.

Given that Dr. Kaufman and Dr. Ruhoy, a neurologist, have probably seen more CCI ME/CFS patients than any other doctor, this episode was a great opportunity to get it straight from the horse’s mouth. What more, really, could you want?
Click to expand...

So, it seems that Dr Kaufman was the person who really got the ball rolling, giving the idea credibility.

He's on the OMF Scientific Advisory Board, which I find astonishing. I'm willing to reserve a tiny tiny bit of doubt - just maybe this hypothesis is somehow relevant to a portion of people with an ME/CFS diagnosis. But, it is unequivocally not okay for a doctor to promote an invasive risky procedure for so long without presenting some well founded evidence. This paper is not that, not remotely close.

So, surely the inclusion of this man in the Scientific Advisory Board makes a joke of OMF and everyone involved with it? I don't understand how other members of the Scientific Advisory Board could have allowed it, because their names get tarnished by association. @MelbME, I'm sorry to tag you but I think you are the only spokesperson we have for OMF active on the forum. I expect you won't feel able to comment here, but - what an earth is going on in OMF? How are we supposed to have any confidence in the people making decisions about what research to fund?

The composition of the OMF Scientific Advisory Board is surely something people with ME/CFS can have some influence over. If OMF wants our goodwill and donations, I think they need to be much more selective about who they take scientific advice from.
 
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Kaufman was involved in the Rapamycin studies:


31:44 min he states it works for 50% of ppl in the study, which we now know is not true after the results were published. He has a history of hyping of every new treatment and giving it to his patients Willy Nilly. Not sure why he’s still a spokesperson for this illness.
 
This is when I first learned about him:



2:04:41 he starts going on about CCI. Sadly one of the most viewed videos and biggest outside reach.2:15:00 he promotes it more.

His interview starts at 1:50:00… leaky gut, CCI, etc… everything just said together.

Have a friend that went to his clinic. She was put on a crazy amount of prescriptions for a high price.
 
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