The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

I think Trish made the key point: something similar happened with rituximab, and that turned out to be no better than placebo. It's entirely possible all these people will relapse later, and possibly be worse off as a result.

 

I think the arguments are pretty straightforward but people may not wish to hear them.

If there truly is a relationship between even some ME and the postulated structural abnormalities then it should be easy to produce such evidence and present it in a paper, which should easily be independently replicated. Images, numbers, etc. should be available that convince relevant expert specialists/scientists that there is, in fact, something there. Again I'm not up to date but I'm not aware that such evidence exists.

If this surgery truly has significant beneficial effects for a substantial proportion of ME patients then, as far as I can see, a well-constructed trial should show it no-problem. I'm not up-to-date at all on this stuff but I'm not aware that an appropriate trial is being planned.

If there is a less invasive way to achieve what the surgery achieves (assuming it achieves something) then clearly that would be preferable. But without any good data about the (potential) structural abnormality/ME relationship, and complete pre-/post-surgery data from patients, that makes it much more difficult to propose plausible mechanisms and potentially preferable treatments.

Even if one knows prophetically that the surgery is generally safe and is effective in some cases and/or there is a legitimate relationship between ME and structural abnormalities, the best way to proceed is to produce this evidence. Because to minimize the harm and maximize the good done for patients, whatever is true needs to become generally known, i.e. become established medical science. Without convincing health systems, the best you can do is get a relative few people treated by cowboy doctors at great expense.

And, of course, if the treatment is generally not effective and/or has complications for patients, it is quite a disaster to subject patients to the procedure outside of a trial that at least could establish this information.

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So it is baffling and worrying that the sorts of trials and studies needed to best help patients are apparently being eschewed for a sort of guerilla approach that guarantees massively suboptimal outcomes no matter what is actually true about ME.

We should expect friendly doctors and scientists to understand and push back against this sort of problem.

 

I've seen several in the MESpine Facebook group, some of whom have got worse. A common theme is for them to blame the lack of progress or worsening on something else - usually tethered cord.

 

I don't like to bring Mattie into this thread because he is no longer a member here and I want to respect his privacy. Is his experience being shared on these private and public social platforms? He has been very honest and open about his placebo effect on PR and his story needs be told.

 

Has there been a clear definition of "cure"/"recovered" among those who have had interventions for biomechanical issues they attribute to their ME?

 

I was merely adopting the antithetical position to he previous post claiming that some had been completely cured. However I take your point, and I would presume not.

 

Like who?
Even JenB had to have more operations didn't;t she? And she had previously been cured by antivirals and avoiding mould. More importantly we have no way of knowing that the surgery did the curing. That is why we have S4ME, because we want reliable evidence based on adequately controlled observations.

 

At least a hundred of us pre-COVID, viral onset ME patients have gotten CCI diagnoses. It’s pretty incredible what mast cell-mediated connective tissue damage can do!

There you are. Complete rubbish. Total pseudoscience. It needs shouting from the rooftops by those who are seen as the experts on ME.

 

What is the proof that ME or even the CCI she describes is “mast cell mediated”? I always meant to start a thread on MCAS but never got round to it. What does it mean to have MCAS? Is it a separate entity on its own or rather is it a term for those who suffer frequent allergic reactions? If so wouldn’t that just be put down as “allergies”. Many people in the Asthma U.K. Facebook group for example do report allergies to many variable things, often household products even can trigger them, they get rashes, wheezing - they frequently take anti histamines as well as asthma medication. Some people are more prone to allergies and maybe those with ME may be too?

I also have this worry that the symptoms reported as symptoms of MCAS are so wide and varied that basically many people can fit into it. For example my stomach issues were first Misdiagnosed twice as MCAS. It turned out to be advanced gallstone disease! And possibly abdominal migraines and acid reflux as well.

I have difficulty tolerating meds and it was diagnosed as MCAS - is it MCAS really? It’s not often “allergic” in nature. It’s more that I get dizzy, vertigo, nausea and throwing up, severe sleepiness/drowsiness or breathing difficulties. If anything, those seem more like symptoms of central nervous system issues or CNS depression.

If you have allergies to things, if you were to go to any immunologist I would suspect they would check what you’re allergic to and treat you and give you advice on how to avoid said allergies anyway. And definitely if PwME do suffer with allergies or multiple allergies, it’s important to get this help.

So where did MCAS specifically come from and what is it? Sorry if in wrong thread. Want to write more but arms hurt so need to stop!

edited typo

 

As a matter of interest does anyone know of any other conditions in which there appears to be a sudden increase of diagnosis of this disorder, whether there are any other conditions which would be expected to be were the condition due to mast cell-mediated connective tissue disorder, and what the total number of diagnoses is, approximately?

 

Absolutely none.

Mast cell activation syndrome does not exist in any meaningful sense. It is another quack diagnosis almost all of the time. It has been sold by a physician in the States called Lawrence Afrin who is to my mind very unconvincing in his lecture videos.

Viral infections have very little to do with mast cells.

I.e. your instinct is correct.

 

I believe 4 or 5. There's a thread on PR for outcomes. There's also a story of a woman who got much, much worse in one of these threads. But most getting the surgeries are sequestered into private facebook groups and I'm not in them, so it may be many more.

The solution recommened is then new surgery, usually tethered spine.

 

What happened to this study?

 

What I find worrying is that ME/CFS patients diagnosed with CCI are apparently told that it is degenerative and that they will eventually (in the not too distant future it seems) die from it. This Dutch article forms an example: https://www.ad.nl/binnenland/eline-...tgenoten-nog-mooi-leven-te-bezorgen~a8136b8b/

 

This is more among certain patients but it's worrying for sure. At least good to see Peul address the issue

https://docs.google.com/document/d/1CcMPg4cw1WW8jzNW9gwe3pTwDxFs6J2W37F4rPChpOQ/mobilebasic

 

Who is telling them they'll die and by what?

I've read the article in German but don't understand who exactly is giving out that prognosis.

 

I suspect it's the people who make the diagnosis, either the guy in London or Barcelona

EDIT: this is unclear and just a guess by me.