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.

 

[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.

 

[ME/CFS Science Blog]

Shouldn't the paper also mention that Jeff Wood did/does paid consultancy for people with ME/CFS who think they have CCI as a conflict of interest?

 

[Mij]

STEP 1 – INITIAL CONTACT OF NEW PATIENTS

Any prospective New Patient should contact Mr. Jeffrey Wood
(Director of Data Collection and Screening).

Email: jeffrey.wood@mountsinai.org

As a first step, Mr. Wood will collect demographic, insurance, and clinical information.

 

[wingate]

From the preprint, the evidence of recovery after surgery seems to be two case studies - Jeff Wood and Jen Brea.

Yes, and these two stories, one published on Wood's personal website and the other on Cort Johnson's HealthRising blog are described as "perhaps the most compelling evidence that at least a subset of ME/CFS cases are directly caused by brainstem deformation." That's concerning.

But, a lot more people with ME/CFS than these two have undergone neck surgery in the hope of improvement.

I haven't read the article, but if that's all they can come up with as recovery evidence 6 years on from Jen and Jeff doing their big social media push and setting up private facebook groups to promote the surgery, and Jeff running his business promoting it, then all this article is is advertising based on nothing.

@Trish, I am in complete agreement. I remember when this all began, s4me members called for data to be published by the surgeons so that it could be seen what kinds of diagnoses these patients had and what the outcomes of the surgeries were, and proponents of the 'mechanical basis' theory also indicated that data would be forthcoming. If, 6 years later, they are no farther along in that pursuit, we have gone nowhere with this theory. I wish it could be put to rest.

 

[Jaybee00]

Any prospective New Patient should contact Mr. Jeffrey Wood
(Director of Data Collection and Screening).

Email: jeffrey.wood@mountsinai.org

As a first step, Mr. Wood will collect demographic, insurance, and clinical information.

OK, trying to sort this out.

Jeff’s affiliation on the paper is Renegade Research, which is a nonprofit. His email on the paper is jeff@mech*nicalbasis.org. He is listed on the Chiari EDS Center website, which doesn’t look like a nonprofit, with an email for the Mount Sinai hospital system, which is a nonprofit. Hmmm.

 

[Mij]

I've had a vestibular virus for the last 5 years that is exacerbated by exertion, my symptoms worsen due to physical and mental activity. I need to REST and pace to feel better. I've had ME/PEM for over 30yrs to know that it's not PEM, but I'm certain Jeff would consult me that I do.

He was all over Twitter years ago telling people they 'definitely had PEM". He deleted all this posts when he got flack for it.

 

[nataliezzz]

Yes, and these two stories, one published on Wood's personal website and the other on Cort Johnson's HealthRising blog are described as "perhaps the most compelling evidence that at least a subset of ME/CFS cases are directly caused by brainstem deformation." That's concerning.

Reading their stories, it's quite obvious that Jen Brea & Jeff Wood (esp. Jen) did not have the same disorder as most people with ME/CFS. Any ME/CFS knowledgeable doctor worth their salt should have also picked up on this if they watched Unrest; literally within the first 10 min of Unrest Jen is shown having facial hemisensory loss, dystonia of the hand, and verbal apraxia while trying to say "wow." She also discussed in her TED Talk how she had difficulty drawing complete circles (indicative of visual neglect). These are not symptoms of ME/CFS!



Jen also never had unrefreshing sleep or other sleep disturbances like insomnia/circadian rhythm dysfunction and therefore would not have met IOM criteria. She met ICC criteria; and CCC criteria because sleep dysfunction is not required if the illness began with an infection, which hers did. Jeff did have unrefreshing sleep, but he had sleep apnea caused by the CCI. Both Jen and Jeff both eventually developed central apnea while they were awake. They also both developed a "bobble head"/sinking head feeling. At least in Jeff's cases, his illness seemed to start as a more typical ME/CFS type presentation before these additional atypical symptoms emerged though.

Both Jen and Jeff had PEM which they both reported being quickly cured of after CCI surgery (Jeff also reported being quickly cured of PEM when he was put in a halo brace), which (if you accept anecdotes as evidence) suggests that PEM is not unique to one disorder, but if PEM is a symptom of some cases of CCI, it may have different features vs. PEM in ME/CFS. For ex, Jen reported that she never experienced a feeling of being wired or running on adrenaline, and "tired but wired" seems like an almost universal feature of PEM in ME/CFS.

 

[Grigor]

Reading their stories, it's quite obvious that Jen Brea & Jeff Wood (esp. Jen) did not have the same disorder as most people with ME/CFS. Any ME/CFS knowledgeable doctor worth their salt should have also picked up on this if they watched Unrest; literally within the first 10 min of Unrest Jen is shown having facial hemisensory loss, dystonia of the hand, and verbal apraxia while trying to say "wow." She also discussed in her TED Talk how she had difficulty drawing complete circles (indicative of visual neglect). These are not symptoms of ME/CFS!

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Jen also never had unrefreshing sleep or other sleep disturbances like insomnia/circadian rhythm dysfunction and therefore would not have met IOM criteria. She met ICC criteria; and CCC criteria because sleep dysfunction is not required if the illness began with an infection, which hers did. Jeff did have unrefreshing sleep, but he had sleep apnea caused by the CCI. Both Jen and Jeff both eventually developed central apnea while they were awake. They also both developed a "bobble head"/sinking head feeling. At least in Jeff's cases, his illness seemed to start as a more typical ME/CFS type presentation before these additional atypical symptoms emerged though.

Both Jen and Jeff had PEM which they both reported being quickly cured of after CCI surgery (Jeff also reported being quickly cured of PEM when he was put in a halo brace), which (if you accept anecdotes as evidence) suggests that PEM is not unique to one disorder, but if PEM is a symptom of some cases of CCI, it may have different features vs. PEM in ME/CFS. For ex, Jen reported that she never experienced a feeling of being wired or running on adrenaline, and "tired but wired" seems like an almost universal feature of PEM in ME/CFS.

Interesting analyses. Had never seen it summarized like this before. Well done!

 

[Rick Sanchez]

She met ICC criteria; and CCC criteria because sleep dysfunction is not required if the illness began with an infection, which hers did.

Is this something that has been discussed a lot in the community?

I`ve read a lot of ICC and CCC discussion back in the day, but I have no recollection of this at all! Granted it is hard to remember what was discussed in FB grps or on Pheonix Rising over a decade ago, but sleep dysfunction not being required if illness starts with infection seems pretty important given how many patients state that their illness began with infection when it comes to MECFS.

There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset.

Like... what?