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

You are not a doctor, Jennifer, so what you *think* may or may not cause problems re. upright MRIs cannot be taken as reliable guidance. The same applies to all of us who are not doctors.

The fact is your ongoing high profiling of your own (unusual) story is leading some ME patients to think they would now benefit from having an upright MRI.

 

My reading of it is that the flexion, hyperextension and rotational positions that, I understand, are required during the upright-MRI are the problem here, beyond any increase in normal activity levels. Some of these postures may require positioning and holding the head for relatively long periods of time in stress positions that may strain structural elements and provoke worse symptoms in these patients, who may otherwise intuitively avoid such actions, or be unable to routinely perform them due to the severity of their illness.

For patients with orthostatic intolerance, being upright and static for the procedure could be an issue. I'd probably lump that in with non-procedure-specific post exertional symptoms I think, it's the neck exercises that worry me more.

I think in Julie Rehmeyer's video she describes worse symptoms following the upright-MRI, but doesn't attribute a permanent worsening to it. However, she developed a new post exertional symptom of episodic temporary paralysis, due to an injury caused by applying traction while trying to alleviate the post MRI flare up of symptoms. I think she said it was a new traction technique they were trying, that went wrong.

 

I wasn't aware of all the backgrounds of the persons involved. On the other hand, it doesn't surprise me. Probably 9 out of 10 doctors in Europe who worked with ME/CFS have some connections to the BPS ideas, they are deeply rooted simply because it was the main paradigm for over 20 years. Biomedical studies like this are the start of a paradigm change and I reckon it's extremely important to get those started in Europe as well, as some doctors over here have a weird mistrust of US medicine.

Regarding the hypothesis, there was actually quite a bit more details outlined in the research proposal. My manual translation from the document:

 

This really just repeats this statement: Our hypothesis is that, in a substantial part of patients with ME/CFS, there is narrowing in the craniocervical area, which could lead to a disruption of normal cerebrovascular flow and thereby result in neuroinflammation.

This is just rubbish. There is no evidence for people with ME/CFS having a collagenopathy. Craniocervical narrowing does not affect cerebrovascular flow. Reduction in cerebrovascular flow is not a cause of neuroinflammation. None of it is more plausible than gremlins climbing up your brain. These people are not actually scientists. They are clinicians who have picked up buzzwords from second rate research.

 

https://twitter.com/user/status/1195409736033693696


https://twitter.com/user/status/1195412005164732416


https://twitter.com/user/status/1195416074600120320


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https://twitter.com/user/status/1195427182111150080

 

Yes only 20 patients are planned to fly to London, which is also what I said:

My main concern, which even the Ethical Review Board agrees with, is the prospect of having all this done in ONE day. Even for patients with mild ME this is a huge ordeal. Had it included several nights stay with the possibility to rest after flights, MRI's etc it would show a completely different understanding of the illness. Add to that the complete omission of PEM in this document, surely flying to another country with all the hassle of getting to the airport, standing in line, waiting and the bombardment of sensory input will cause PEM for anyone with ME, regardless of their severity of illness. And then not be given the chance to rest? The principles of pacing are not being used by someone in charge of an ME clinic which teaches patients pacing and to avoid PEM?

Yes, there is. The main problem here as I see it is that they are not mentioned as such, the potential risks mentioned are the possibility of discomfort during and after the lumbar punction, possible bruising after blood tests. Not a single word about PEM or over exertion.
How much of an expert in ME are you, and how ethical is your research, if PEM and risks of deterioration are not even mentioned in a study that includes such great exertions?

For me, reading about the possibility of an upright MRI causing harm was just icing on the cake, and I believe you've misread what I wrote if your takeaway is that my only concern is that an upright MRI can cause potential harm. That's not what I wrote.

I understand you want research done in this area so we can move forward and hopefully get some answers, but as @mango and @Jonathan Edwards wrote, this isn't a sound scientific study and many of the people involved are not ME-specialists, or have a BPS view of the illness. Had the science it's based on been sound, potential risks recognized and precautions been taken to minimize harm, I wouldn't oppose a study looking into neck issues, although I personally think there are other avenues more worthy of spending the precious little funding we have for ME research.

Jonas Bergquist has a very small part in this study, unfortunately.

Edit: clarity, spelling, grammar

 

I personally find open discussion much more healthy. I am in no closed groups, never have felt need, but I recognise, of course, it is one’s absolute personal choice to participate in such groups or not.

But I do know in the public Twitter sphere, those opposed to the CCI narrative, or at least opposed to the overstated authority embedded in this hyperbolic narrative, will likely find themselves blocked if they challenge ‘CCI causes ME’ in any kind of robust way.

I wonder why we, as a majority of patients, are just supposed to blindly accept this CCI narrative that is being heavily promoted by a few?

And this controlling of narrative, and suppression of ‘dissent’ is exactly what Wessely and co have been doing, in a much more blatant way, for decades.

It seems also, to me, overlooked by the ‘proponents’ of CCI that many of us have lost decades to this illness, some of us ill since young adults. We actually have a great deal invested in getting to the truth of what ME is, we perhaps have the most to gain by science progressing. We don’t just dismiss unevidenced claims for the sake of it. We are, I think, weary beyond words of the hypotheses that come and go - and we are cautious, we have to be.

Perhaps, though, you have to have actually lived through what UK psychiatry did to ME patients in late 80s/early 90s - hijacking the research arena, reframing the entire illness, wilfully misrepresenting the patient voice - to fully appreciate the absolute need for clarity and responsibility and consistency in the language you choose to use in advocacy.

But I really don’t understand that anyone who has had a diagnosis of ME and has experienced the lack of belief/dystopia firsthand, is so willing to be careless with rhetoric.

Carelessness of rhetoric, whether it is around CCI, or any other aspect of this illness, is simply not an option. The space we inhabit as pwME is already fragile, hard won, and we have simply had enough dystopia, without introducing another layer.

Still, I am not surprised that there are so many splinter groups and loyalties, the illness has become so very politicised. But maybe we can agree, for now, not to be encouraging pwME to be seeking upright MRIs they don’t really need. Unless they actually have symptoms that would indicate the need.

 

The fact that Bergquist as an established scientist and professor is involved is exactly the part which makes it impossible to ignore for me. Maybe someone should invite him here, because Jonathan Edwards is now the only medical authority on this forum.

Frankly I can't see how Bergquist has his name on a study if it's obvious that the hypothesis is no better than gremlins crawling up your brain. Somewhere there is a disconnection, either with Bergquist or some of the statements on this forum. To me it seems clear they must already have good reasons to suspect hypermobility and MRI abnormalities in a significant part of their patient cohort.

 

I don't think you realise what a large proportion of people in scientific research have no real idea what they are doing. If one is going to have faith in all professors, why not have faith in the hundreds of professors who agree that neck surgery for ME/CFS is not justified? Remember that one of the people show started this whole EDS/ME thing off was Hans Knoop - one of the main BPS promoters. It was the bio part of the biopsychosocial. You can never say a theory must make sense because a professor says so I am afraid.

 

I don't think there are any disconnections, only politics and crude reality I'm afraid . Jonas Bergquist needs patients to be able to get cerebrospinal fluid to analyze, and Bragée has the patients.

The OMF research center is set up to collaborate with all researchers in Sweden involved in the field of ME/CFS. That includes BPS researchers like Gunnar Olsson, unfortunately.

I don't know why that is, but I guess partly because OMF haven't been given the whole picture of how much BPS research is actually going on in Sweden and how influential these researchers are.

I'm not so sure Jonas Bergquist is happy with the totality of this study, which has a lot of parts to it, but as I understand, it might be a necessary compromise.
The fact that he's involved doesn't automatically equal him being ok with everything in it. I could ask him, but I don't think he would be comfortable answering that.

Wether we like it or not, Bragée and the likes of him are now in a position of power and they won't hesitate to exploit that to get their way. I believe even Jonas Bergquist has to submit to this, since the Swedish patient organization has helped white wash Gunnar Olssons ACT/CBT/GET study and has allowed Bragée to in a sense take over the steering wheel. There is no one in a position of influence or power in Sweden that is standing up to their pseudoscience and BS.

Bragée and Bertilson's biggest dream, and I believe the motivation behind this London excursion, is to aquire an upright MRI to their clinic, thereby being the first in Sweden to have one. Bertilsson has been talking about wanting this for nearly 20 years, and Bragée is all about fame and glory and mentions it frequently as well.
They joked a lot about this during the televised education day arranged by Bragée this spring.
Bragée has also reopened the ME clinic 3 times (?!) to be able to make a big fuss and get media attention. Surely that money would be better spent on patient care?

 

Further down in the document the Ethical Review Board has a lengthy comment with questions and request for changes, where they also ask the following :

It doesn't say surgery straight out.....

 

Any individual is free to pursue whatever course they see fit.

First of all, as far as I am aware, MEAction are not focusing on CCI; this is something more personal to Jen, and to Jeff. The CCI stuff is not done under the banner of MEAction.

Secondly, from the perspective of Jeff and Jen, they are doing the right thing: they hypothesize that CCI may be involved in a substantial percentage of ME/CFS patients, so advancing the understanding of this may potentially help a substantial subset of patients.

But even if it turns out that CCI is only be an issue in a minority of ME/CFS patients, if something can be done for those patients, then it is still a good thing. I imagined that now that Jen was better, she might just forget about the ME/CFS community, as many others who have recovered have done. But no, she is staying here to help. For that alone, she deserves great credit.

 

I would like to know the truth. Promoting a theory on social media to other patients is exactly the wrong way to find out whether it is correct. This will never produce reliable evidence, but it will, if things get out of hand badly enough, lead to the total discreditation of the idea before it's ever been investigated properly. The poor reputation of chronic Lyme might be a good example of the end result of such an approach.

 

Hip, no.

 

But now they don't, or at least not JenB. In a recent post in response to my comments she indicated that CCI surgery has nothing to do with ME symptoms, it is for CCI symptoms. CCI is not 'involved' in ME.

The whole thing makes no sense.

 

The reason neurosurgeons do CCI surgery in ME patients is not because of their ME symptoms. Or their POTS symptoms. Or their dysautonomia. They have, however, noticed that these symptoms improve or remit in some patients following surgery. They don't know why that is and I am sure they don't even know or recognize IF these patients have ME. After all, they have been treating people with EDS for the last 20 years. (Stateside, that is.)

I had all the symptoms required for an ME/CFS diagnosis. However, I also had intermittent numbness, paralysis, apnea and syncope. Those are the symptoms my neurosurgeon was interested in.

In fact, that I put down "PEM" and "POTS" as two of my top three major complaints made him doubt that I even had CCI or that he could help me.

However, it turns out a subset of us who meet ME criteria do have symptoms like intermittent numbness, paralysis, apnea and syncope.

Perhaps a clearer example. There are three centers in the US (Duke, Stanford, Cedars Sinai) known for treating spinal fluid leaks. Some of these spinal fluid leak patients have POTS. Many have EDS. They do not, however, give people blood patches because they have POTS or because they have EDS. Rather, they treat the pathology (a spinal fluid leak) on the basis of specific spinal fluid leak symptoms and imaging as well as history (e.g., history of CTD, history of epidural). Sometimes, these patients' POTS remit. Sometimes, a whole host of symptoms remit, as in the case of patients with leaks so bad, they have obvious brain sag. However, they are never treating to those symptoms, which can have many causes. Rather, they are treating an identifiable pathology. That usually addresses the symptoms associated with that pathology. In some cases, for reasons not yet understood, it does much more.

I have theories as to those reasons but they are just theories. Those theories have nothing to do with the doctors treating these pathologies.

 

As far as my understanding is those symptoms, except apnea maybe, are not very normal to see in ME? At least paralysis and syncope would be a red flag for me that there might be something else going on

PS: Im not saying u didnt have ME