Utsikt
Senior Member (Voting Rights)
I think I might have gone with a different logo!
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Preprint Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.
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jnmaciuch
Senior Member (Voting Rights)
…yup. Weirdly enough I remember seeing some note either on their website or some other online material explaining the logo—something about the shape being a chromosome, maybe? But I can’t seem to find it again. I remember it specifically because I had the same thought you did when I first saw it.
hotblack
Senior Member (Voting Rights)
I assume they mean sufferers
That’s all they say about conflicts…
I hope no patient is embarrassed, desperate ill people will try all sorts and being open to ideas is good, as is changing your mind when new evidence appears. I know I’ve been through various ideas about this illness.
Those peddling very expensive or extreme surgical ‘treatments’ with no underlying basis on the other hand should be embarrassed.
Kaufman is another who has profited from promoting unevidenced treatments to desperate people. A lot of harm has been done by the promotion of neck surgery as a cure for ME/CFS - families drained of funds, people's lives made worse by very invasive operations. I think there are suicides where this hypothesis has contributed to, or at the very least, has not alleviated, the person's despair. Significant issues with the surgeons involved in this have been documented.
From the preprint, the evidence of recovery after surgery seems to be two case studies - Jeff Wood and Jen Brea. Reference 23 about Jen Brea is
But, a lot more people with ME/CFS than these two have undergone neck surgery in the hope of improvement. Jen was reported to be making a film about the hypothesis in 2023, but it is isn't clear on her webpage if she is still doing that.
Jonathan Edwards
Senior Member (Voting Rights)
Doesn't seem to have much to do with neuro-inflammation. The talk is of inflammation in the ligaments of the spine. I am not sure how this qualifies as a 'refinement' of anything! It is straight misinformation with a commercial interest.
jnmaciuch
Senior Member (Voting Rights)
I just meant that Remission Biome previously only had vague hand waves towards "neuro-inflammation" or "neuro-immune axis"--this just appears to be the organization's attempt to pivot to a theory with more specific details. Before this point, the furthest they every got was "glutamate might be involved." Whether these new details are worth anything, in any way shape or form, is another discussion
Jonathan Edwards
Senior Member (Voting Rights)
Seems more like an attempt to rebrand in any random manner that looks profitable.
This is at the level of drinking bleach for cancer, let's be straightforward about it.
jnmaciuch
Senior Member (Voting Rights)
Agreed. It seems like an attempt to grasp at any veneer of respectable scientific language. Especially considering this is what they came up with on their own:
As @Trish suggested, it looks like a mutually beneficial relationship between RB and Wood.
An interesting link came up when googling them, by the way. It appears they paid for services from a very well-staffed branding agency
Remission Biome
Brand identity for the radical new patient-centered healthcare organization.
www.pentagram.com
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.
Utsikt
Senior Member (Voting Rights)
Yet their webpage says they’ve spent 0 % on «advertising». You might say that branding is not advertising, but as a business consultant, I’d say that the only major difference between branding and advertising is the time-scale that you work at, and that both are a part of marketing.An interesting link came up when googling them, by the way. It appears they paid for services from a very well-staffed branding agency
Remission Biome
Brand identity for the radical new patient-centered healthcare organization.
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Grigor
Senior Member (Voting Rights)
I believe she is and I'm quite scared how many people will go on to have surgery after that...
Grigor
Senior Member (Voting Rights)
"Perhaps the most compelling evidence that at least a subset of ME/CFS cases are directly caused by brainstem deformation come from a set of well-documented case studies."
But then they go on about JW and JB as they've recovered, but that's not the most compelling evidence? How do they know it was "directly caused by brainstem deformation"? Quite a wilde claim to make?
But then they go on about JW and JB as they've recovered, but that's not the most compelling evidence? How do they know it was "directly caused by brainstem deformation"? Quite a wilde claim to make?
Snow Leopard
Senior Member (Voting Rights)
I do think this can explain a small minority of ME/CFS or ME/CFS-like cases, note that those cases present differently eg with symptoms like tremor etc.
But a large majority of patients do not have this problem.
But a large majority of patients do not have this problem.
Murph
Senior Member (Voting Rights)
Quote from an mecfs person who had the neck-fusion surgery, taken from the open internet: "do not mess with your neck. I made that mistake and will pay for it forever - in spades."
I'm actually open-minded about whether it might be causal in some cases and I"m way more forgiving of people talking about things that worked for them that might not work for everyone, even if those things are risky. I bear no ill-will to Wood or Brea, I find it fascinating.
But I do think it's important to help ... easily convinced people ... to think about risk-reward trade-offs. Some people get the idea in their head that a thing will be a magical cure.
I'm actually open-minded about whether it might be causal in some cases and I"m way more forgiving of people talking about things that worked for them that might not work for everyone, even if those things are risky. I bear no ill-will to Wood or Brea, I find it fascinating.
But I do think it's important to help ... easily convinced people ... to think about risk-reward trade-offs. Some people get the idea in their head that a thing will be a magical cure.
Assuming for the sake of argument that anyone has ever benefited from this type surgery, I’ve often wondered if the physical trauma from the surgery might be the cause of any improvement as opposed to the relieving of alleged brainstem compression. Kind of like a souped up version of feeling better during a viral infection. I would imagine the recovery process is quite the immune system distraction. With that said, there is a FB group for this type of surgery started by Jen a number of years ago and the results reported there were not good at all. Like a GET level of not good.
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Jonathan Edwards
Senior Member (Voting Rights)
Intriguing. Why you would think that? If a biological story is 95% wrong in my experience it is most likely to be 100% wrong. All the pictures we have seen purporting to show compression or slippage do not show any. Nobody has ever documented any neurological signs consistent with CCI in any publication. It is a bit like basing a theory on there being too much snow in Madagascar this year.
When I see this, and what Garner and Hollis write, and look at a secretary of state for health dismissing his entire vaccine committee the thing that impresses me is just how much people get attached to irrational beliefs. Maybe if you hold beliefs like these people do it is not so surprising to think people with ME/CFS are suffering from strange beliefs. And Garner even claims that applied to himself. With this irrationality around I am not sure we need any explanation for a few people getting better other than a shift in the irrationality. As they say, the irrationality is real!!
Fortunately, I also think that there are a lot of people with common sense who don't suffer from this irrationality. And the point of being here is to deal with an illness that isn't to do with irrationality.
OrganicChilli
Established Member (Voting Rights)
Is CCI easy to diagnose? It's a popular suspected comorbidity on social media alongside EDS
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Jonathan Edwards
Senior Member (Voting Rights)
Yes. There are various versions but a plain cervical x-ray in flexion is usually enough. Patients presenting with symptoms from CCI with RA usually have changes on x-ray that, as my old boss put it, a policeman could recognise. Most of the other RA patients probably had mild CCI and we ignored it because it was not causing problems. This isn't anything obscure. And it doesn't produce symptoms of ME/CFS.
Grigor
Senior Member (Voting Rights)
Assuming something is happening during or after the surgeries, I wonder if certain drugs—like dexamethasone, which some surgeons such as Gillette reportedly use—might partly explain why some people experience improvements.
This drug was also used during the COVID-19 pandemic to treat (neuro)inflammation in ICU patients. If neuroinflammation plays a role in ME, then a drug like dexamethasone might help alleviate that, rather than addressing structural issues such as CCI.
Dr. Wilco Peul has mentioned that most cases diagnosed (by Gillette?) aren’t actually CCI. He instead refers to CCH—cervical cranial hypermobility—which may add to the confusion of labeling it as CCI when it's not. If I remember correctly he also once said feels they don't actually need surgeries unless they actually have severe CCI.
If there’s some form of inflammation or dysfunction in the brainstem, and CCH is present, it might worsen the situation. But in that case, I’m not sure fusion surgeries are the answer as it doesn't treat the cause?
This drug was also used during the COVID-19 pandemic to treat (neuro)inflammation in ICU patients. If neuroinflammation plays a role in ME, then a drug like dexamethasone might help alleviate that, rather than addressing structural issues such as CCI.
Dr. Wilco Peul has mentioned that most cases diagnosed (by Gillette?) aren’t actually CCI. He instead refers to CCH—cervical cranial hypermobility—which may add to the confusion of labeling it as CCI when it's not. If I remember correctly he also once said feels they don't actually need surgeries unless they actually have severe CCI.
If there’s some form of inflammation or dysfunction in the brainstem, and CCH is present, it might worsen the situation. But in that case, I’m not sure fusion surgeries are the answer as it doesn't treat the cause?
Jonathan Edwards
Senior Member (Voting Rights)
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'.