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

[ME/CFS Science Blog]

"The authors declare no competing interests."

Jeff Wood's website: "I now work as a consultant to chronically ill patients, as well as to researchers and MDs who serve the chronically ill community."

Jeff Wood Consulting

Craniocervical instability, Atlantoaxial Instability, Myalgic Encephalomyelitis, ME, CFS

www.explorewithjeff.com

 

[Utsikt]

"The authors declare no competing interests."

Jeff Wood's website: "I now work as a consultant to chronically ill patients, as well as to researchers and MDs who serve the chronically ill community."

Jeff Wood Consulting

Craniocervical instability, Atlantoaxial Instability, Myalgic Encephalomyelitis, ME, CFS

www.explorewithjeff.com

That’s probably something to contact the journal about. COI seems to be one of the few things they take seriously, because it’s always the author’s fault if something is wrong.

 

[Hutan]

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?

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.

 

[MelbME]

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



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.

It's a board of varied opinion. OMF doesn't dictate to the board members how they should comport themselves and what advice they give their patients and scientists. These clinicians/researchers add their perspective to discussion but have a common respect.

I think it would be more dangerous if we all had the same thought and drive down a path that one of us thought was the truth. One persons opinion is not how a decision is made, evidence is required for research paths. The outcome is typically evidence focused and conservative.

I also think the context of CCI is important to understand because the people who were helped by the surgery looked precisely like ME/CFS patients. It begs the question of how many people may have conditions like this that may be corrected by the surgery. From my discussion with patients, it seems like correcting the surgery is only long term curative if the initiating trigger of the CCI was a one-off event and not part of an ongoing process where the patient will redevelop CCI months after the surgery. It's also not the sort of thing you can just get done because you want it because Dr Kaufman said it was good, there are many steps to getting tested to see if you are a good fit for the surgery and a high threshold needs to be crossed. Very few surgeons would do this surgery globally.

I think the issue here is that the diagnosis of ME/CFS is too broad, technically yes these people with CCI were diagnosable as ME/CFS. But then as we've discussed on here: what is ME/CFS?

 

[Hutan]

I think it would be more dangerous if we all had the same thought and drive down a path that one of us thought was the truth.

As I noted, my issue isn't so much with the hypothesis, although it's hard to make anything of it that makes much sense. It's what the authors of this paper and Kaufman in particular have then done about their idea.

At least some of the authors are making money and reputations out of promoting expensive highly risky surgery. Where is the evidence that it works? Where is the news that a properly conducted unbiased trial is underway? As far as I can see there is exploitation of people desperate for a cure. Kaufman charges a lot - his involvement with ME/CFS patients has been lucrative.

because the people who were helped by the surgery looked precisely like ME/CFS patients.

But, what people? What evidence do you have to say that?

It's also not the sort of thing you can just get done because you want it because Dr Kaufman said it was good, there are many steps to getting tested to see if you are a good fit for the surgery and a high threshold needs to be crossed. Very few surgeons would do this surgery globally.

I think actually a lot of surgeons are doing this type of operation around the world, but crucially not on people who don't present with clear evidence on standard scans of needing it. It is true that the surgeons willing to do these operations on people with ME/CFS without that evidence is a much smaller number.

I'm not sure if you have read our investigations into these particular surgeons? It doesn't make for pretty reading. There are histories of allegations and even charges of medical misconduct. Large sums of money are being charged. Families mortgage themselves to the hilt for this surgery and then we hear that the patient has undergone the surgery and isn't doing very well. The investigations done prior to the surgery being booked seem to be very weak indeed.

It's the promotion of all that, the taking advantage of desperate people and the lack of a commitment to science that I have a problem with.

Thanks for responding Chris. I'm happy to hear about any information that you have that suggests that Kaufman is an appropriate person to listen to when it comes to making decisions about ME/CFS research.

 

[Eddie]

If people are actually being helped by this surgery why not produce the data showing its efficacy? All we get are anecdotal reports and hypothesis papers when it would be easy to track the outcomes of these surgeries over time and publish the data. How many people are not helped or made worse by the surgery? We don't know because we only hear the reports of people who felt better. It is very concerning that the people performing the procedures don't want to provide evidence for its effectiveness.

The path to diagnosis is also murky and seems to be based on all sorts of questionable normative data.