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

Jaybee00 said:
But I think it needs to be addressed as to how several people got completely cured by this surgery. If you can’t address this then it doesn’t matter what these eminent folks say because people will be skeptical of the claim that the surgery doesn’t work.
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See this post of mine on another thread:

Trish said:
There have been claims that Rituximab helps a subset of pwME to remission, that spinal surgery helps a subset of pwME to remission, that the Lightning Process helps a subset of pwME to remission, that the keto diet helps some pwME to remission, that antivirals help some pwME to remission, and even that eating spinach help some pwME to remission.

So far the only one of these that has been properly researched by a large multicentre randomised placebo controlled double blinded clinical trial is Rituximab, and that proved to be no better than placebo.

Please, Jen B if you are reading this, stop acting as if you are a consultant level medical expert, and stop pushing your particular preferred treatment. I am glad for you your symptoms have improved, but there are others who underwent the same surgery who have ended up no better off or worse off, still suffering from severe ME. It is totally inappropriate and irresponsible for you to be leading people to believe you are an expert, and to be suggesting diagnoses or treatments for pwME or for those with long Covid.
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Jaybee00 said:
I could follow up on these two and maybe Komaroff.

But I think it needs to be addressed as to how several people got completely cured by this surgery. If you can’t address this then it doesn’t matter what these eminent folks say because people will be skeptical of the claim that the surgery doesn’t work.
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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.
 
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Dx Revision Watch said:
How many are completely cured?

Jen claims she now needs another operation.

Julie R has recently had a second operation.
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Exactly. Where is the hard evidence that the surgery works? Or that the diagnosis is even correct?

TiredSam said:
Wow, the parallels with the lightning process are uncanny. Transparency and accountability not her thing either then.
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Excessive secrecy and intolerance of (fair) criticism is one of the major warning signs about any individual or group.
 
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Jaybee00 said:
I could follow up on these two and maybe Komaroff.

But I think it needs to be addressed as to how several people got completely cured by this surgery. If you can’t address this then it doesn’t matter what these eminent folks say because people will be skeptical of the claim that the surgery doesn’t work.
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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.

__

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 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.
 
Jaybee00 said:
But I think it needs to be addressed as to how several people got completely cured by this surgery.
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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
 
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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?
 
lunarainbows said:
What is the proof that ME or even the CCI she describes is “mast cell mediated”?
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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.
 
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chrisb said:
How many people have had the surgery and not been completely cured?
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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.
 
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