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

[Grigor]

I don't see the difference. Both imply an 'excess' of movement, which we haven't seen. No doubt some necks move more than others, but that does not make them 'hyper'.

I can't answer your question of course but these authors explain it as such:

"Unfortunately, the diagnosis of EDS hypermobile type is based purely on clinical symptoms and signs because no genetic marker currently exists.3 There is a simple clinical screening test (4 or greater on the Beighton score) that suggests, but does not complete, the diagnosis.4 Radiological assessment often includes dynamic imaging (flexion/extension views) and/or upright MRI of the craniovertebral junction.

Measurements made from these
images include the clival-odontoid angle and pB-C2 (a measure of the extent of basilar invagination), and values of <135 and >9 mm respectively have been taken to indicate instability. These radiological measurements are not, however, essential parts of the hypermobility diagnostic criteria and are not accepted internationally as indicating instability.

Indeed, the term ‘instability’, used in relation to the cervical spine and craniocervical junction, in patients with hypermobility, is arguably inappropriate. An increased range of joint movement, caused by ligamentous laxity, is not the same as spinal instability resulting from trauma or major inflammatory arthropathies such as (historically) rheumatoid arthritis.

A genuinely unstable cranio-cervical junction does threaten the patient with the development of major neurological disability, or even death. In such circumstances stabilization is required, urgently.

Hypermobility may generate pain arising from the affected skeletal elements and may even cause intermittent neurological symptoms but affected individuals are not at immediate risk of death or sudden, severe neurological deterioration. Patients are, after all, very likely to have been living with the condition for some time.

Treatment, including surgical intervention, is rarely indicated as an emergency. In the context of EDS and the craniocervical junction, use of the term ‘hypermobile’, rather than ‘unstable’, is less likely to
cause unwarranted alarm amongst the patient population."

 

[Jonathan Edwards]

I can't answer your question of course but these authors explain it as such:

I am afraid the whole field is awash with 'experts' who don't really know what they are on about. EDS has nothing to do with ME/CFS anyway. There is an endless circuit of irrelevant arguments.

 

[Braganca]

I was in the Facebook group for a long time. I’m not advocating for the surgeries. But there were a number of people, probably 20 or 30 st least, who did better from the surgery, but usually had more than one surgery (Craniocervical fusion and tethered cord). I felt that most of the people who did better had very clear set of non-ME specific symptoms that originated from neck region (numbness, tingling, pain, loss of movement in arms or on one side of body, tremors, seizures). They also had PEM, were bedridden or housebound like typical ME patients. Some had clear neck trauma onset like a gym injury or a car accident but were not offered treatment by regular nueurosurgeons.

So, I feel that there are people who are misdiagnosed with ME yet fall through the cracks of typical neurosurgeon diagnostics. One Swedish woman had crazy neck hypermobility on imaging, was bedridden with ME type illness and recovered after surgery to live a normal life. (There were also many people who had no improvement or worsened.)

 

[rvallee]

Long Covid has clarified pretty much everything out of the history of ME/CFS, to those who pay attention anyway, and completely debunked the psychobehavioral model, as well as fringe models like this one. Some of them were potentially interesting, were looked at, but ultimately the facts just don't fit.

This is always the danger with people latching on to a specific model. All models are useless, some even less so than others. It's what fits the facts that matters, and this doesn't, just as the homeopathic model, or the ayurvedic model, or the psychobehavioral model.

So this feels especially misplaced being out so late, when it's beyond clear that this is not relevant. Maybe in very rare cases, so rare that even if the illness were taken very seriously, the average clinician would never see a single case in their whole career. Just like the BPS model. Some of it could apply in very rare cases, but it's just not worth investing anything into it.

 

[poetinsf]

I have not seen any evidence of CCI cases mimicking ME/CFS. The only MRI scans I have seen look normal. Until we see an actual CCI image I doubt there is anything to look into.

No possibility of CCI resulting in obstruction/injury or pressure on brain stem? Activating neuroimmune response similar to concussion? I'll take your word for it. But I've heard a few credible-sounding cases of CCI and one IH patients previously diagnosed with ME/CFS then recovering after surgery. I think it was a lumbar puncture in the case of IH.

 

[Jonathan Edwards]

No possibility of CCI resulting in obstruction/injury or pressure on brain stem? Activating neuroimmune response similar to concussion? I'll take your word for it. But I've heard a few credible-sounding cases of CCI and one IH patients previously diagnosed with ME/CFS then recovering after surgery. I think it was a lumbar puncture in the case of IH.

Not if CCI is not there, clearly.

Social media provide communication to something like a billion English speaking people. A few 'credible-sounding cases' amongst all those is going to be a dead cert if a meme is going around.

If a few people recover after brain retraining and rituximab (and even placebo) presumably they can recover whatever goes on.

 

[poetinsf]

Not if CCI is not there, clearly.

Are you saying they were misdiagnosed with CCI? Or there is no such a thing as CCI?

If a few people recover after brain retraining and rituximab (and even placebo) presumably they can recover whatever goes on.

That's a little different. Those are known therapies while CCI/IH surgeries aren't. Accidental discoveries are anecdotes as well, but I'd look into them more carefully than those prone to placebo and confirmation bias.

 

[Jonathan Edwards]

Are you saying they were misdiagnosed with CCI? Or there is no such a thing as CCI?

I have not seen any evidence of CCI on any of the images of people with supposed ME/CFS that have been shown in public. CCI is a very real problem as a complication of other illnesses but none with any relation to ME/CFS or confusable with ME/CFS.

That's a little different. Those are known therapies while CCI/IH surgeries aren't.

I don't follow that. Surgery for actual CCI is a well documented therapy - that has changed in detail of technique over many decades. I referred several patients for CCI surgery over the years. And rituximab is not a 'known therapy' for ME/CFS, placebo even less. Brain retraining seems to be just faith healing but nobody seems to be able to say exactly what it is - so not very known!!

I am not sure what you mean by IH. It sounds like another red herring though.

 

[poetinsf]

I don't follow that. Surgery for actual CCI is a well documented therapy

Yes, but what I meant was that the surgery wasn't intended for their ME/CFS. It was for something else whereas Rituximab or brain retraining was intended for ME/CFS.

I am not sure what you mean by IH. It sounds like another red herring though.

Intracranial Hypertension.

 

[Jonathan Edwards]

It was for something else whereas Rituximab or brain retraining was intended for ME/CFS.

Well, the first observation by Fluge and Mella was improvement of ME/CFS following B cell cytotoxics for cancer, not for ME/CFS.