Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

Are you able to click on it and then turn your phone landscape mode? And zoom in as you read? It allows me to read. But I am struggling with it too - it’s not easy to read. I can’t get the text to copy here.

 

Try this.

 

It might be worth reminding Dr Van Elzakker that I am not a general MD but a professor of connective tissue medicine. I spent ten years re-writing synovial fluid dynamics so am familiar with the detail of fluid compartment physiology. The points Dr v E raises are not relevant. The analysis I gave was intended for a general audience and remains perfectly adequate in the context. Raising minor points like this seems to me an admission of having no argument. Why doesn't Dr v E join us at S4ME? The Swedish study is misleading because of the problem of referral bias and lack of controls.

 

I think it would be great if Michael Van Elzakkar could come on this forum to share more of his thoughts.

So is he giving weight to the theory that traction (& fixing in a traction position) can alleviate symptoms? By getting rid of compression - Because compression of the brain stem can cause all these symptoms?

Also he mentions degradation of collagen - so is he also giving weight to the theory that ligaments in the neck are damaged, and that’s why there is compression?

 

Sorry, just want to address one more thing. “Only for you Anil?”. Anil is lovely yes. But there’s also lots more who do want to know. If we seem frustrated or angry, there’s often a reason for it - maybe we know people who are desperate and terrified of whether they have a structural issue and need to do surgery or not, or we’ve talked to newly diagnosed people or friends who are obsessively focusing on their necks and headache symptoms and not being able to keep their head upright and are worrying how they’ll crowdfund hundreds of thousands for surgery because they’ve been told to do surgery so by Gilete, let alone travelling when they can’t even get to the next room, all on the basis of theories that aren’t yet supported by full evidence?

Or who decide they want to wear a collar but have no one in this country who will supervise them and if they dare raise it with a doctor here, they’ll get laughed out the clinic and get put on an MUS list? Or someone who decides to travel to get an MRI and then an upright MRI and makes themselves horrendously ill in the process, either because of the travelling or the noise of the MRI or both, not knowing if what they’re doing it for is even true? Or someone who just can’t make sense of anything? I wonder if he knows how it feels? We all deserve answers.

I wonder if Dr Van Elzakkar has read any of my earlier posts (even the ones where I had to dictate and my mum wrote them up?) when I was really scared by the whole thing and genuinely wanted answers? That’s still my motivation. I want to know.

 

I love how when it’s us trying to be a critical friend to a theory that has so little evidence backing it up and the potential to cause huge damage to vulnerable people, we’re the ones being taken to task for “inaccurate framing [which] creates an unhelpful crusade”, but this same level of proof or behaviour is not required of those pushing the theory in the first place....

 

I think that's kind of a joke. "Only for you" as a response to a request doesn't necessarily mean literally only for you - it's a way of saying yes whilst also expressing your love for the person who asked.

 

Oh ok! That’s good to know. I think I took it literally.

I was also thinking of his other comment I read in the twitter thread, when I was replying, (when he was replying to S4ME’s tweet about the general discussion), when he says that we are going on an unhelpful crusade, and that people are not going to get surgery like they get pizza. I don’t think he quite understands why we are writing or why we find it difficult. I wanted to put my perspective on why I’m writing here. I just want answers too.

 

I'm sure it was.

I made mobile phone friendly version by scanning the document on my phone.

Only for those on S4ME :

https://docs.google.com/document/d/1h49FqttQLhJm837WDShLNJO8Gz6e_fBisJKOI-BHndc/edit?usp=drivesdk

Oh and thanks for the lovely bit

 

I am not sure why you believe that one goes from an upright MRI to unnecessary surgery. Can you explain?

I see it as 0) ongoing patient education throughout 1) Upright MRI referral by a medical practionner 2) Radiology report by a qualified radiologist 3) non surgical efforts (PT, posture, pain relief, bracing etc) 4) maybe a neurosurgeon consult 4 5) maybe, at the extreme surgery

Do you think all radiologists are also unqualified? As well as every practitioner who refers on for imaging?

Decisions are made by patients with agency over one's own body - no one considers letting someone cut them open and stick metal into a very sensitive area of their anatomy after a single MRI.

 

My understanding is that
1. There is only one centre doing upright MRI in the UK for this indication.
2. This centre takes referrals from other European countries with a view to referral for surgery
3. The view amongst neuroradiologists in the UK in general is that upright MRI is not useful.
4. The practitioners I have heard to be referring for imaging are always one of a small number of people I know who in my opinion make diagnostic decisions not based on sound evidence.

So all the reports seem to be coming from one radiologist whose approach is not recognised by other radiologist sin the UK. I know nothing of the situation in North America but I suspect it may be similar.

I am very happy to be proven wrong but my current view is that nothing very diagnostic is found on these upright MRIs. If it was then it should have been published. Until a medical professional is prepared to share relevant data in public I have to assume it is not being shared because there is nothing much to see.

I appreciate that adults are in control of treatment decisions but I have seen crowdfunding for children supposed to have this problem. Moreover, the decision must in the end by determined by advice from medical practitioners and I think there are very good reasons to think that the small number of practitioners involved in this referral practice are not making decisions based on sound evidence. In simple terms how can they know to recommend something if nobody knows it is likely to work?

 

There's one in Hannover and Gilete in Barcelona does it as well.

 

Your observations are of such importance, @Jonathan Edwards. Please keep reminding folks that there is no way of circumventing medical knowledge without having studied medicine, and even if so, being a responsible and legitimate member of the medical community. There is a reason for medical consensus and that is: science, efficacy and patient safety.

I am reminded of watching Vicent Rancaniello's Virology 2020 lectures online (from Columbia University) Racaniello runs the blog with David Tuller.

I don't have a background in molecular biology or genomics. I haven't had chemistry. I only took a one semester course in microbiology for future nurses.

So when I watch the fasting moving, full-hour Lecture 13 on how a virus infects a cell, my god, the detail, the processes, the nomenclature. I gave up. I don't yet have the background. I will have to start with basic biology and chemistry. It will take me several years to do that.

The processes of how the virus can infect and overcome the cell's innate and intrinsic immunity were developed from years and careers of many dedicated scientists who communicated with each other critically. Only theories that are logic-based and replicable make progress in scientific fields possible. These scientists must communicate with each other frequently to discuss problems, hunches and technical approaches.

And yet, Jen Brea and friends throw around not only terminology but theories of anatomy, physiology and surgery as though they have had several lifetimes of practice in at least 4 medical or surgical specialties. It's ABSURD.

 

Ha! Just to clarify...It's Vincent's blog. He kindly lets me hijack it a couple of times a week to pursue my stuff.

 

Moved posts

Björn Bragée was on TV today, on Malou efter tio (13 minutes, in Swedish):

Nya ME-upptäckten: ”Långt över vad man kan förvänta sig”
https://www.tv4play.se/program/malou-efter-tio/13296779

 

(I'm crashed, unable to give a full recap. Sorry.)

No new info.

He was there to talk about their "new extraordinary findings", their research study that was published a while ago. Hypermobility, intracranial hypertension and craniocervical obstructions. He said it's one of the journal's most read article ever.

Said that 80% of pwME are women, many are told that it's not a real illness, he called it "oppression of women".

They showed a clip from Unrest (the bit from the scene where she's trying to crawl up the stairs, making strange sounds when she's unable to talk, and her husband saying that people believe you're a mental patient if you say too much, "everyone gets stressed").

They mentioned that Bragée has met Jen Brea (well, that was news to me).

They showed a picture of Jen Brea looking fantastic, saying that this is what she looks like today after the surgery. I could be completely wrong, but I think that was actually one of the Unrest promotional photos from 2016 or earlier?

After talking about Jen Brea's surgery and how much better she is now, the host goes on to say that 30 people from Sweden have travelled abroad and paid 800 000 SEK [implied: to have neck/spinal surgery], and that many of them are now feeling much better(!). I very much doubt those numbers... Bragée didn't correct her, though. He just commented that almost everyone improves a lot after [the treatment abroad].

They talked about why that surgery is currently not available in Sweden. Bragée is hoping to get in touch with neurosurgeons who are interested in doing a research study with thorough follow-up etc. Talked about other possible treatments (instead of surgery) including physiotherapy.

He also talked about ME after Covid-19, said that lots of people will definitely get it. He mentioned a Norwegian study, something about the number of people diagnosed with ME doubled after SARS. And he said something unclear about it being possible that the infection crossing over into tissue where the connective tissue is [not compact? "lucker" in Swedish] and then you get problems [instability, craniocervical obstructions, increased intracranial pressure etc].

 

I think he means where the connective tissue is lax. At least that's the adjective I see used with connective tissue. He could also mean loose or soft.