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

[Grigor]

She says not in this article.

Yes, but that's from 2018. She mentioned it maybe last year the year before.

 

[Trish]

Yes, but that's from 2018. She mentioned it maybe last year the year before.

My point was that at the time they had their surgery, neither had JHS, hEDS or EDS or met the criteria such as Beignton.

 

[Grigor]

My point was that at the time they had their surgery, neither had JHS, hEDS or EDS or met the criteria such as Beignton.

Ah I understand. Yes, true.

 

[Chestnut tree]

My point was that at the time they had their surgery, neither had JHS, hEDS or EDS or met the criteria such as Beignton.

What is JHS?

 

[Jonathan Edwards]

What is JHS?

Joint hypermobility syndrome - which is supposed to include general pain.
There is also BJH - benign joint hypermobility, which does not imply any symptoms
These diagnoses are almost infinitely elastic.

 

[Utsikt]

She says not in this article.

Says this:

While I am going to see an EDS geneticist after my surgery, based on symptom descriptions, I’m pretty sure I don’t meet the diagnostic criteria for classical EDS or any of the other testable forms.

As for hypermobile EDS (hEDS), the one type without a known genetic marker, I also don’t meet the current diagnostic criteria.

 

[poetinsf]

As to conjuring up fancy mechanisms isn't a surgeon looking for custom, and dreaming up brain stem compression to sell, pretty much that?

It would be fancy if they sell it as *the* cause of ME/CFS as Jeff Wood does. But such pressure could put the brain immune system on the edge similar to what concussion does, and we already know concussion can cause debilitating fatigue. Again, it may not be worth looking into if it's only one case (or even two). But it may be if there are several independent cases.

 

[tralfamadorian97]

Hello! In support of their argument, the authors of this preprint cite a 2018 paper by Dr. Peter Rowe and colleagues. Rowe et al. describe three patients who met the Canadian Consensus Criteria for ME/CFS and whose symptoms were alleviated by surgical management of spinal cervical stenosis.

I take Rowe et al.'s report seriously because:
-- Dr. Rowe has been treating ME/CFS patients for 30 years. He therefore understands PEM and is unlikely to have misdiagnosed three patients.
-- Dr. Rowe does not have a conflict of interest.

Granted, all three of these patients exhibited abnormalities on neurological exam and so were clearly unusual ME/CFS cases. Nevertheless, I think we should pay attention because these patients experienced PEM, the central symptom of ME/CFS. Understanding the diverse physiological pathways that can lead to PEM may help us unravel it.

For instance, I could imagine that most ME/CFS patients have a disease process something like:
autoimmunity -> autonomic dysfunction -> PEM
but the patients described in Rowe et al. had
pathological anatomy -> autonomic dysfunction -> PEM

 

[Hutan]

Welcome to the forum.

We have a thread discussing that paper here:
Improvement of severe myalgic encephalomyelitis chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis, 2018, Rowe et al

 

[Utsikt]

Hi and welcome !

I take Rowe et al.'s report seriously because:
-- Dr. Rowe has been treating ME/CFS patients for 30 years. He therefore understands PEM and is unlikely to have misdiagnosed three patients.

In general, the purpose of this forum is to examine the evidence. I don’t think anyone should be expected to take anyone’s word for something.

Wrt Rowe, he has a history of making unfounded claims about hEDS, POTS, MCAS, treatments etc.

-- Dr. Rowe does not have a conflict of interest.

I disagree.

He has been providing treatments for these patients, and it would be damaging to his professional career to be wrong about something as serious as neck surgeries.

He also receives lots of extra patients because he has positioned himself as someone who can help patients for which no proven treatments exists.

It’s also not relevant to the validity of his arguments.

 

[Jonathan Edwards]

Hello! In support of their argument, the authors of this preprint cite a 2018 paper by Dr. Peter Rowe and colleagues.

Which I think simply demonstrates the muddled thinking involved. Cervical spondylosis compresses the cord, not the brainstem, so Rowe's cases do not support a brain stem theory.

There is no point in constructing medical theories if they do not add up.