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

Sarah94 said:
Sorry to be annoying but can you evidence this statement please?
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Some people are becoming permanently worse after having upright mris. Another has become much more severe due to fusion surgery. I hope this is acceptable to share.

I think it is important to counter the "everybody who has tried this is getting better" narrative that Jen Brea is pushing on twitter, because that narrative is false.

It does not serve our community when there are 2 people controlling this information and the public narrative around it.
 
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Dear @Irishwasa,

Thanks for giving your viewpoint. Nobody here bites heads off but we like to be able to give our honest views. As you probably know I am a retired professor of rheumatology, involved in hypermobility and 'EDSIII' now 'hEDS' from early on.

I do not think that hEDS is a meaningful diagnosis and it appears that many of my current rheumatological colleagues agree. As far as I know it is largely used by private physicians such as Alan Hakim, who was once my registrar.

I have taken a long hard look at all the information available on the use of neck surgery for people with ME or similar symptoms and have concluded that there is a very high probability that everything is hype generated by private practice surgeons and radiologists. I am familiar with CCI and looked after people with it. CCI does not produce a symptom picture in any way similar to ME.

I worry particularly about parents looking for treatments for children. (It is not clear whether you are taking about a child I realise.) For adults to be taken in by practitioners is their own responsibility. For children it is a different matter. Which is why legal factors can come in. Since as far as we know nobody with the symptoms of ME has ever developed evidence of cord or brain stem damage over time I can see no justification for operating before someone is of an age to make their own decisions. Whatever else one can say about this business one thing is for certain and that is that there is no hurry to get surgery. From what we have heard long term traction would be just as good.

You say 'So why do they not publish results? Well, before you can publish, you must have enough subject matter to formulate a clinical trial.' This is not the case. There is a huge amount to publish before a trial - in particular the imaging findings, which should have been published long ago. The images should have been read blind, mixed up with normals and published for independent experts to peer review. All the cases operated on so far should also be published before further cases are treated. Unfortunately it is routine for neurosurgeons to operate for no very good reason. I myself have twice been offered surgery that was not indicated. The first time I made the mistake of having the operation done and I regret that thirty years later.

There is the additional problem that neurosurgeons know nothing about clinical assessment of conditions like ME and from what we hear are not even interested. People are very likely to report feeling better after surgery for reasons that have nothing to do with the operation having been necessary.

The long term complications over decades from cervical fusion are likely to be significant and I have not seen any systematic analysis of that. If you immobilise the specific nodding and rotating joints in the neck all the other discs will take extra strain. In the lower back this is well recognised.

I understand your position but all I can say is that as someone with considerable expertise in this field I would advise you to go nowhere near neck surgery for a daughter unless advised to do so by two routine clinicians in university hospital centres.
 
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Barry said:
But how can you know?
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I'm trying very hard to stay within forum rules. That makes this awkward to word.

I can't know for sure, you are right. I am basing this on the affected persons' description of their severity at the time of their upright mris.

The affected people were not severe enough that I would expect the exertion of an mri would cause the extreme, horrific, permanent worsening they experienced.

I know that without more detail this sounds like a typical ME reaction. I'm not sure how to explain it better while staying within the rules,

so I'm going to err on the side of vagueness, unfortunately.

It was not my body, not my illness, so I can't know for sure. This is my sense. I wish I could be more specific, I'm sorry.
 
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Alton said:
Stewart, I agree. There are currently 3 private facebook groups, set up and controlled by JB, that are echo chambers of pseudoscience, confirmation bias, and Jen Brea and Jeff Wood worship.

I probably can't say more, but what is going on in private is infinitely more irresponsible and appalling even than her twitter feed.

Her vilification of people here is constant. She clearly wants to control the narrative on cci.

It's worth mentioning that she consistently tweets about what is going on in the groups with great specificity, but without ever asking permission from those in these groups.

And has a fit if anyone but her shares anything other than her own heavily edited, rose-colored version.

People are being harmed. Seriously and permanently harmed. Already. She knows this. I know these people. She does not include them in her twitter missives.
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This is actually really disturbing to read, Alton, the alleged vilifying of people in private FB groups. How unpleasant.

*edited to say ‘alleged’.
 
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Alton said:
Some people are becoming permanently worse after having upright mris. Another has become much more severe due to fusion surgery
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Bragée Clinic in Sweden is planning a study looking at 'Craniocervical dysfunction, neuroinflammation and infection in ME/CFS ws healthy controls' with Jonas Bergquist from OMF's research center in Uppsala, among others.

The study is awaiting approval, but in the study protocol retrieved from the Swedish Ethical Review Board they state that they plan to fly 20 ME/CFS patients (volunteers) and 20 controls to London for an upright MRI at Medserena Clinic, all during one single day, since no upright MRI's are available in Sweden !!

They also mention potential surgeries being arranged if the scans should show abnormalities that would indicate the need for that. (Not sure who would make that decision, the guy running the clinic in London or...?)

(the application and study protocol in Swedish)

https://www.dropbox.com/s/t7r15rqibroe45i/Bragee_Bergquiststudie .pdf?dl=0

If I recall correctly Jonathan Edwards mentioned that this isn't usually done by the NHS in the UK, so this would have to be a private clinic?

Even the Ethical Review Board questions the need to fly severely ill patients to another country, and to fly there and back without an overnight stay planned or anything. PEM isn't even mentioned in the study protocol, which is quite alarming concidering the enormous exertion such an endeavor would be.
Rather than there being a potential risk of harm, I would say there are guarantees of harm being done.
And now reading that simply the upright MRI in itself can cause harm....

And the head author of this study, Bragée himself, is leading one of Sweden's few ME-clinics!!
I find this extremely scary and disconcerting :sick::(
Add to that the fact that it's a joint effort with an OMF-financed research center...

I very much hope they don't get approval to perform this extremely reckless experiment.
Maybe I should post this in the thread "news from Scandinavia" also?
 
Anna H said:
Bragée Clinic in Sweden is planning a study looking at 'Craniocervical dysfunction, neuroinflammation and infection in ME/CFS ws healthy controls' with Jonas Bergquist from OMF's research center in Uppsala, among others. [...]

Maybe I should post this in the thread "news from Scandinavia" also?
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Thank you so much for sharing, Anna H! This study definitely deserves its own thread here on the forum, too.

I do share your concerns :(
 
Alton said:
I'm trying very hard to stay within forum rules. That makes this awkward to word.

I can't know for sure, you are right. I am basing this on the affected persons' description of their severity at the time of their upright mris.

The affected people were not severe enough that I would expect the exertion of an mri would cause the extreme, horrific, permanent worsening they experienced.

I know that without more detail this sounds like a typical ME reaction. I'm not sure how to explain it better while staying within the rules,

so I'm going to err on the side of vagueness, unfortunately.

It was not my body, not my illness, so I can't know for sure. This is my sense. I wish I could be more specific, I'm sorry.
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I’ve unfortunately seen this happen in patients with CCI/AAI. I posted elsewhere about this. I believe I got worse from provactive testing (mainly turning my head rather than flexion/extension). I worry about these scans in people not planning on having surgery if they are positive.

In milder cases, it is not uncommon to have worsening symptoms for a few hours or days and then recover.

I do not think this should cause problems in people who do not have instability but have not read about the risks of flexion/extension in people with normal cervical spines. Upright MRIs are very common in the US.
 
Hi @Jonathan Edwards, in answer to some of the issues you raised in your in depth response to my post, I did say that my daughter gave up University due to illness, so she is well past being a child, lol.
I understand your point on EDS and not seeing similar things in other CCI patients previously. We would also like to see something like a HALO used first to demonstrate the efficacy of fusion. There is a definite change in symptoms just by use of a rigid medical collar which she uses for car journeys (we are surrounded by small back roads).
In terms of measurements, she was measured at Translational BAI of 3.2mm compared to the Consensus statement of >2mm potentially pathological, but we do have an appointment scheduled at Walton for December.
I will send you a message, if you don't mind, as I do not wish to clutter this thread with too much peripheral commenting.
 
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Anna H said:
And the head author of this study, Bragée himself, is leading one of Sweden's few ME-clinics!!
I find this extremely scary and disconcerting :sick::(
Add to that the fact that it's a joint effort with an OMF-financed research center...
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Thanks for providing the link to the study proposal. Having skimmed through it, I don't agree with or understand most of your objections. In the document, they outline the goal of the project to describe clinical, laboratory and radiologic findings in ME/CFS patients and comparison of those with regards to healthy controls. The radiologic studies include MRI performed in Sweden. Actually, of the 200+ participants, only 20 will be selected to perform further upright MRI in Medserena. I couldn't find any mention of surgeries being recommended in this document.

In my opinion, this kind of study is exactly what is needed to investigate the hypothesis that ME/CFS and structural brain issues are intertwined conditions. As you mentioned, this study is performed by Bergquist et al., who have connections with the Stanford group of Ron Davis. Unlike some of the neurosurgeons, these are scientists who have a good understanding about ME/CFS. Having this kind of study performed would have been complete utopia even five years ago, especially in Scandinavia where the BPS view still dominates. If this study can find objective abnormalities, radiologic, spinal fluid, etc., IMO it will help patients a great deal over here especially in Finland and Denmark, who are likely to be diagnosed with functional/somatic disorder.

Finally, I reckon there is potential harm associated with almost any kind of studies. Most medical trials will require participants to move from place A to place B. Obviously, bedbound ME/CFS patients cannot fly, so I presume the 10% of patients they pick for upright MRI will not include severe patients. The objection to CCI surgeries (which I can understand) has been that no studies with regards to ME/CFS patients in specific have been performed. Now when somebody is actually assembling a study, are we at a point where the concern is we cannot have a subset of patients measured in an upright MRI due to potential harm? We are at a deadlock if the objection to surgeries is that no studies have been performed and when an actual study is planned, we are also objecting to that.
 
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JES said:
these are scientists who have a good understanding about ME/CFS.
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I'll admit I'm a bit surprised by your confidence in them...

You are aware that Gunnar Olsson is a well-known BPS proponent, right? For example, his research into ACT for ME/CFS, aimed at getting participants to gradually increase their activity levels, address fear avoidance behaviours etc. In what way would you say that approach reflects a "good understanding" about ME? For a more in-depth discussion of the problems (in Swedish), a series of blog articles here, and another one by a different writer here -- both well worth a read.

Have you read up on Björn Bragée's hypotheses about ME and the fear/stress response, sensitisation, the reptilian brain etc? His comments in Läkartidningen and elsewhere about the BPS model in relation to ME? The neurosomatic approach of Bragée clinics, at which the ME center is hosted? Are you aware of his previously keen interest in another kind of invasive brain surgery for ME, deep brain stimulation? Are you OK with the fact that the questionnaries people are asked to fill in when registering at the center (the data is also used in several of their research studies) don't capture PEM in a meaningful way? Do you feel that the treatment options offered at Bragée ME center reflect a good understanding of ME, for example ear acupressure?

Besides Jonas Bergquist (I think most of us already know a bit about him), what can you tell us about the other investigators's experience of and earlier involvement in ME? What makes you confident in their knowledge about ME?

Seeing that Bragée ME center opened in 2017, what makes you feel confident that they have managed to develop a good understanding about ME in such a short time?

These are genuine questions. I'd really like to try and understand your perspective, please :)
 
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JES said:
In my opinion, this kind of study is exactly what is needed to investigate the hypothesis that ME/CFS and structural brain issues are intertwined conditions. As you mentioned, this study is performed by Bergquist et al., who have connections with the Stanford group of Ron Davis. Unlike some of the neurosurgeons, these are scientists who have a good understanding about ME/CFS. Having this kind of study performed would have been complete utopia even five years ago, especially in Scandinavia where the BPS view still dominates. If this study can find objective abnormalities, radiologic, spinal fluid, etc., IMO it will help patients a great deal over here especially in Finland and Denmark, who are likely to be diagnosed with functional/somatic disorder.
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I hate to be negative yet again but I am afraid your enthusiasm is misplaced. The hypothesis here is so vague and lacking in scientific plausibility that I would have no faith in any researcher who signs up to it. It seems no more than a stringing together or buzzwords. Real science is not like this. I am disappointed to see Dr Bergquist involved but that is the way things are.
 
Alton said:
Stewart, I agree. There are currently 3 private facebook groups, set up and controlled by JB, that are echo chambers of pseudoscience, confirmation bias, and Jen Brea and Jeff Wood worship.

I probably can't say more, but what is going on in private is infinitely more irresponsible and appalling even than her twitter feed.

Her vilification of people here is constant. She clearly wants to control the narrative on cci.

It's worth mentioning that she consistently tweets about what is going on in the groups with great specificity, but without ever asking permission from those in these groups.

And has a fit if anyone but her shares anything other than her own heavily edited, rose-colored version.

People are being harmed. Seriously and permanently harmed. Already. She knows this. I know these people. She does not include them in her twitter missives.
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I have seen the same and been appalled by villifying and swearing directed at people or groups who have differing views and since they are not in the group, people and groups can't stand up for themselves.

Since these groups are closed and secretive and other pwME can't see what's going on, it sets a frightening precedent, and no one is allowed to talk about it outside.
As @Alton said, the narrative is being controlled and if everyone could see what's happening there, people will be very alarmed.

Can you please tell us @JenB why did you feel the need to set up Four FB Groups (for pwME who are being diagnosed with structural problems by a selected number of surgeons), most of which are hidden and atleast some of which you seem to be the only admin? Just to remind you that you are supposed to be an Advocate for all of us at least as far as MEAction goes.
 
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