Sweden: Problematic changes to Region Stockholm's ME/CFS guidelines

I posted about this issue in the News from Scandinavia thread last week, but as things keep unfolding I think it deserves its own thread.

A massive thank you to patient advocates @MittEremltage, @Clementine and others, for digging into this and doing a phenomenal job trying to hold the responsible people accountable Much appreciated!

ME/CFS: Myalgisk Encefalomyelit/Chronic Fatigue Syndrome, kroniskt trötthetssyndrom
https://viss.nu/kunskapsstod/vardprogram/me-cfs

 

Forum thread on Elin Lindsäter's related research study (currently recruiting):

Sweden: Psychological treatment for severe fatigue: A feasibility study, Lindsäter et al
https://www.s4me.info/threads/swede...ue-a-feasibility-study-lindsäter-et-al.39238/

 

New blog post by @MittEremltage:

Är granskaren av vårdprogrammet för ME oberoende, obunden och objektiv?
https://mitteremitage.wordpress.com...rammet-for-me-oberoende-obunden-och-objektiv/

 

Do also note the timing of these changes.

As many of you already know, there is a very strong summer holiday culture in Sweden. The four to five-week summer holiday is entrenched in Swedish society, schools are out for 10 weeks during the summer, and summer in Sweden means workplaces emptying for weeks on end. Services get slower if open at all. For the whole month of July the tempo all over the country changes.

So, why did Region Stockholm choose to make/approve such controversial changes now, a couple of days before going on a long holiday?

It is likely that their office will be empty until the middle of August, which means that for now there's no one there to take responsibility for the consequences of these changes.

 

Also, note the ongoing case started by the Patient Complaints Board in Stockholm in April this year. The proposal (see below) was formally approved in May.

It is not clear to me at this point in time if, or how, the political decisions and the updates to the guidelines are connected. It doesn't seem like random coincidences though, especially when you look at how quickly primary care stopped prescribing medications to pwME.

I'd also be very interested to know how all this is connected to Karolinska University Hospital's Clinic for Postinfectious Illnesses in Huddinge, which used to be a postcovid clinic but is now open to "post-covid, ME/CFS or other similar post-infectious illnesses". What kind of treatments do they currently offer, if any? Are they too promoting CBT and graded activity?

It seems to me that things are happening behind closed doors, despite the Swedish principle of public access to information which means the public are entitled to transparency regarding public sector activities. It is worrying

I would also like to know what the RME (the Swedish ME Association) is doing about this, if anything? Their silence and lack of transparency is also worrying, especially knowing that they have openly supported psychosocial proponents and their problematic CBT/ACT/GET research in recent years.

 

Plus ça change… Biopsychosocialists pushing their interests forward with the approval, and even complacency, of medical bodies.

I wonder how Anne Örtegren would have tried to fight back against this.

 

I feel that she would definitely have approved of @MittEremltage and @Clementine's and others efforts, because their approach is nearly identical to how Anne used to work

There's a piece of Anne in all the activism/advocacy I do, and carrying her work forward is a huge part of it.

 

New blog post by @MittEremltage:

Är det vettigt att uppdatera ett vårdprogram mitt i sommaren?
https://mitteremitage.wordpress.com...tt-uppdatera-ett-vardprogram-mitt-i-sommaren/

 

This stuff is always deliberate. In politics they usually do that on Fridays close to 17h00, week-end editions tend to be more focused on light stuff and lifestyle, so this is a great way of burying bad news.

They know what they're doing. Past behavior makes it very clear that there is no depth they will sink to to maintain the old myths.