Open Cervicocranial dysfunction, neuroinflammation and infection in ME/CFS compared to healthy subjects, Bragée & Bertilson [MEPRO study]

mango said:
Yes, you're right, both Gottfries and Stora Sköndal had a biomedical approach, Gotahälsan too. Gotahälsan closed down their ME clinic years ago, Gottfries sadly had to close down last year, and Stora Sköndal is closing down 31 May 2021 :cry:

Thanks, yes I shared links to the most recent Bragée tv interview in the News From Scandinavia Thread here, and Anna H shared her thoughts about it in the same thread here.

I agree with you that there were some good bits in the interview, but I found the main message hugely problematic and I'm feeling very very disappointed :( I agree with Anna H's comments in the other thread.

Björn Bragée seemed happy to let them portray experimental treatment with Rituximab as something extraordinarily "hopeful", worth trying, and worth doing more research into. They completely glossed over the fact that proper Rituximab studies have in fact already been done, didn't even take a moment to explain what the results mean. Didn't mention Fluge & Mella or that they have been consistently sending a very strong and clear message: this is a very risky treatment, do not try it (unless it's a proper clinical trial).

They didn't mention that many of the pwME who tried Rituximab at the private clinic in Norway or elsewhere deteriorated very badly, nor the fact that some of them died or chose to end their own life not long after. I don't think Bragée or Malou's team understand how harmful false hope can be. This concerns me greatly.

They didn't make it clear that the private clinic in Norway no longer offers Rituximab treatments to pwME. Didn't mention that the doctor in question was reported and temporarily(?) but repeatedly got his medical licence suspended because of him offering this and other non-evidence-based treatments.

Since the interview was broadcast, I've seen so many new posts in Swedish ME groups on social media, desperate people asking about Rituximab: where to get it, for how long you should "eat it" etc... It absolutely breaks my heart, on so many levels. :cry:

How many pwME in Sweden have struggled to find the right words when replying to excited emails and messages from hopeful friends and family telling them about this "really amazing cure" they saw on TV the other day?

I'm disappointed that such a great opportunity to raise awareness about the really important issues pwME are facing was, in my opinion, wasted.

I can't see how this kind of framing/focus on "hope" based on a "miraculous recovery" associated with wild experimentation with non-evidence-based treatments will help get us better treatments, better care or support. Can't imagine it will help fight stigma, discrimination, prejudice or medical gaslighting. Can't imagine it will improve patient safety. If this is what the viewers now think matters to us, won't it undermine our demands for proper evidence-based treatments and high-quality research?

I'm well aware that TV interviews can be heavily edited, but still... The impression I got was not of a doctor/researcher that values the scientific process, understands the importance of patient safety or respects the patients enough to give it to them straight. It doesn't fill me with hope, nor confidence. But that's just my personal opinion/impression, others might of course see it differently.

(Edited to correct spelling mistakes, sorry.)
Click to expand...
Yep. My sister in law saw it and whaatsapped me re Ritixumab . She was hopeful for my daughter ( and also potential long COVID as her mum and sister are long haulers ) . I had to let her down as gently as I could
 
Milo said:
Hey @mango, what is the other clinic all about?
Click to expand...
I'm sure any one of the forum members who are or have been a patient there can give a better answer than I can.

My impression is that they don't at all have the same focus on experimental treatments or specific hypotheses. They seem "slow and steady", "tried and tested", "doing important groundwork" rather than "the next cool thing". More focused on continuity, the long run.

More knowledge and understanding of severe and very severe ME (although they too have lots more to learn).

Their diagnostic process seems slower and gentler, involves fewer highly specific tests like neck/head MRIs for the average patient (fewer trips, more time to recover between the visits).

Fewer doctors, who also seemed to stay for a longer time (again, continuity). Their doctors have much more experience with ME patients and doing ME research, dr Per Julin in particular.

Julin's background is neuro rehab, while Bragée's is pain.

Not trying to grab big headlines in the media, but actively and thoughtfully involved in really important "behind the scenes"-projects like developing/updating clinical guidlines and educational material on various national and official information websites and platforms, aware of the politics and other current and historical issues. More collaboration with patient advocates/activists.

Biomedical. Not trying to have the cake and eat it too (sorry can't find better words...).
 
Last edited:
Milo said:
Do you know what their model of care is, whether it is group based?
Click to expand...
It's individual, not groups.

ETA: Sorry, that could have been clearer. Stora Sköndal's is individual.

Bragée's is mainly individual too, but they do offer some group based sessions such as talks on dietary advice etc, I believe.
 
Last edited:
Milo said:
Hey @mango, what is the other clinic all about?
Click to expand...

I was a patient at Stora Sköndal for a couple of years. Although things were far from perfect, my impression was that they were running a clinic that was slowly but steadily improving.

The occupational therapist working there had one of the best insights I've seen in what life is like with ME, and my impression was that the rest of the staff listened to her. Yes, it was frustrating that they were so limited in what kind of accommodations they were allowed to do, but at least they did home visits and agreed on more resting time between visits as a way of avoiding over-exerting me.

One of the things I appreciated the most was that one of the doctors I had there helped out and tried to coordinate with other clinics, meaning that instead of them assessing my POTS, they found a cardiologist in Stockholm that actually knows it. My impression was that she (the doctor at Sköndal) was interested in trying to build an informal network with other clinics and staff to make sure that tests and procedures were done with a high professional standard, instead of Stora Sköndal doing procedures and testing that they lacked skills to do.

My impression of Sköndal was that yes, I was very frustrated with lack of accessibility (because of their financial limits) but if they had been allowed to go on, they would have been a really great clinic. They weren't seeking sensational headlines, but had a more curious approach which could have led them to really deep knowledge.

During my last year I had a new doctor, with a background in pain medicine. That doctoral lacked knowledge about PEM and the specific demands on clinicians when working with people with ME.
 
You must log in or register to reply here.
Back
Top Bottom