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

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

 

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...).

 

Do you know what their model of care is, whether it is group based?

 

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.

 

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.