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

Facebook post no longer available, at least for me.

 

He was using the same word one would use to describe for example the state of the soil in a flower pot or a flower bed. It's the opposite of packed/dense/compact/hard/heavy, so it can mean lightweight, that it's aerated/has a lot of air in it, that it's "fluffy" and porous. So yes, you could say loose or soft

ETA: Yes, lax too! Thank you I found this in the dictionary:

 

Thanks for letting me know. I'm not sure what's wrong, the post is still there.

Does this one work better for you?

 

Yes, can see that one, thank you.

 

New press release from Bragée and Life Science yesterday:

Ny forskning på ’’kroniskt trötthetssyndrom’’ kan leda till nya behandlingsalternativ
https://www.mynewsdesk.com/se/sds-l...n-leda-till-nya-behandlingsalternativ-3123510

A news article based on the press release:

Ny forskning på ME kan ge nya behandlingsalternativ
https://www.dagensps.se/bors-finans...kning-pa-me-kan-ge-nya-behandlingsalternativ/

ETA: To clarify, there is no new study as far as I can tell. No new info either. The link in the press release goes to the study discussed in this thread.

 

Posts moved from this thread:
The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread
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I wonder if they ever did anymore with this study? Frontiers | Signs of Intracranial Hypertension, Hypermobility, and Craniocervical Obstructions in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | Neurology (frontiersin.org)

 

I don't know. I don't think so?

Their head of research Bertilson was interviewed on TV a few weeks ago, but he didn't mention anything new or planned.

They haven't published any related research news or updates on the clinic's social media, and there has been no talk about it among their patients in the Swedish ME groups on social media either.

I haven't checked if the Ethical Review Authority has received any new applications recently.

 

This is the concern I have. Each one of the researchers that look at this is then either warned off or taken down.

The latter part of this post shown in grey in the quote box has been copied to a more relevant thread here

 

Can you please explain what you mean, expand on this? Are you implying that the Bragée research has been silenced by someone, and if so by whom? How?

As far as I know, nobody has tried to "warn off" or "take down" the Bragée clinic's research.

The Bragées are actually known to be the kind of people who seem to really thrive on being seen as groundbreaking and unconventional, pioneers. My impression is that they love a bit of controversy, and they know how to take advantage of it too. Historically they seem to have intentionally created this image of themselves as being the ones who go against the grain, or "against the stream" as we say here in Sweden. So the idea of someone succeeding in "warning them off" seems highly unlikely to me -- I'd say any such attempts would only add fuel to their fire.

Have they received lots of straight shooting and uncomfortable questions about the problematic aspects of some of their other earlier research (patient safety issues, bad methodology and BPS in particular), from out-spoken patients/activists over the years? Absolutely. Have they received some pretty forthright but justifiable criticism of their approach (heavy on the experimental stuff, sorely lacking in patient safety) from independent patients/activists since before they even opened their ME center? For sure. Did they ever care? Did it even make them pause and reflect? Nope. Water off a duck's back.

What has been silenced over the years are the patient safety issues, the serious risks of harm and the patients' concerns.

However, that was all about their previous research such as "ACT" (CBT/GET), experimental methods to provoke PEM during medical investigations, and previously planned projects such as experimental brain surgery back in 2017 etc.

There hasn't been much to comment on regarding their craniocervical research yet, though. My impression is that we all are still simply waiting to hear more about their plans and hypotheses.

In the TV interview (linked above) Bragée's head of research Bertilson said that they have "the largest cohort of patients in the world", and that they are currently "collecting knowledge". Doesn't sound to me like someone who has been "taken down".

(Edited to correct some spelling mistakes, sorry.)

 

There's one more thing I'd like to add. When Bertilson was asked about how many people there are with ME [in Sweden], he replied:

"What we can say based on research is that there are at least as many as there are people with rheumatoid arthritis, which is between 50,000 and 100,000 but it's probably, likely I would say, much more."

That's a very high estimate. Sweden's population is currently approx 10.4 million. I believe the prevalence number most often cited is 0,1-0,6%? SBU said 0,1% (based on the CCC) in their most recent report, which means approx 10 000 pwME in Sweden. RME, the Swedish patient organisation, used to say 10 000 - 40 000, but changed it to 10 000 a few years ago.

I can't help wondering, when the Bragée team says "ME", do they mean the same thing as we here on the forum do when we say "ME"?

When Bertilson claims that Bragée ME-center has the largest cohort of "this kind of patients" in the world, is he talking about ME diagnosed according to the CCC, or something else?

(Original quote in Swedish: "Vad vi kan säga från forskning är att åtminstone finns det minst lika många som det finns antalet personer med reumatoid artrit, vilket är mellan 50 000 och 100 000 men det är förmodligen, sannolikt skulle jag vilja säga, mycket fler.")