Sweden: Open hearing on ME/CFS in the Riksdag 27 May 2021

Copied post from News from Scandinavia

There will be an open hearing on ME/CFS and infection triggered fatigue syndrome in the Swedish Riksdag on 27 May, hosted by the Social Affairs Committee. It will be available to watch online.

The Riksdag is the highest decision-making assembly in Sweden, it's "the parliament".

https://www.riksdagen.se/sv/webb-tv...agning-om-sjukdomen-mecfs-och_H8C220210527ou1

I'd be interested in knowing how they chose the speakers...

Björn Eklund is the (former?) ME patient who wrote a book about his recovery from ME, apparently thanks to Rituximab (Kolibri, Norway) and other off-label treatments such as antivirals (Red Clinic/Ameliekliniken, Jonas Axelsson).

Kerstin Heiling from RME is an obvious choice, of course. I hope she will be honest about the problems pwME in Sweden are facing, and not try to gloss things over to make things sound "hopeful, optimistic and positive". I hope she will keep a very firm biomedical focus during this talk, not focus on how important she believes psychosocial support etc is (she's a retired psychologist, does not have ME herself). I hope she will include the severely ill and the very severely ill in all aspects of her talk.

Jonas Axelsson. Hmm... Head of a private ME + long covid clinic. As you already know, he recently had to pause/cancel? one of his research studies because he hadn't gotten ethical approval before starting to collect samples etc. He's known for generously offering lots of different off-label treatments and medications to pwME and pwLC, as well as recommending brain retraining programs (which has made Gupta, DNRS rewire etc popular in some subgroups of the patient communities, which in my opinion is hugely problematic on so many levels). Axelsson claims that the treatments he offers are completely individual, based on each person's illness history, symptoms, tests etc. However, judging by what people share on social media, it seems to me like they are all getting pretty much the same stuff... For what it's worth, I believe he genuinely means well.

Björn Bragée. Hmm... What will his talk be about?

Per Julin and Anders Rosén. No worries there, I'm looking forward to listening to their talks

Anna-Lena Hogerud from Region Skåne. I don't know anyhing about her, but as you perhaps remember from our discussions about Region Skåne's new clinical guidelines for ME/CFS, the BPS view has been very strong in Skåne historically. What will her talk be about?

This hearing could go either way,... I'll be keeping my fingers crossed hoping for the best.

(Edited to add the link, sorry!)

 

I just wanted to add, in case it wasn't obvious already, that none of the invited speakers have ME.

To me, that's a huge problem

(Sure, Björn Eklund used to have ME, but he identifies as recovered now. He doesn't represent us pwME as a group: he's a very very rare and privileged exception, who got massively lucky.)

 

Björn Bragée:

 

There are some interesting comments in this thread. For example:

 

Someone contacted the responsible "MPs" (riksdagsledamöterna) to ask some questions about the event, and forwarded the reply to me.

Accessibility: Will the recording of the event be subtitled? Will you publish a transcript?

One of the MPs replied that the hearing "will be recorded by stenographers and published later". I'm not sure if that means a transcript or a summary? I'm guessing this means the recording will not be subtitled?

Why was no one with ME invited? ("ME sufferers, as you know, is an incredibly marginalised, stigmatised and misunderstood patient group, not only historically but also today. It is therefore particularly important to enable, at every opportunity, the active participation and involvement of ME sufferers. I would very much like to see you make room for our own voices as well, not exclusively invite people who talk about us.")

The question about why no pwME was invited was ignored.

(Edited to fix spelling mistakes... sorry.)

 

That's great advice, thank you Do you have any suggestions for phrasing, or how to (re)frame the question? I'd be happy to pass it along

 

I've tried to find out what the law says, and what Riksdagen's own accessibility policy says, but no luck so far... Maybe someone with a sharper brain can find something useful to refer to?

https://www.riksdagen.se/sv/besok-riksdagen/tillganglighet-i-riksdagen/

https://www.riksdagen.se/sv/global/om-webbplatsen/tillganglighet/

https://www.riksdagen.se/sv/global/om-webbplatsen/tillganglighet/mer-om-tillganglighet/

https://www.riksdagen.se/sv/dokumen...-om-tillganglighet-till-digital_sfs-2018-1937

https://www.digg.se/digital-tillganglighet/om-lagen

https://www.mfd.se/verktyg/lagar-och-regler-om-tillganglighet/

 

Thank you so much, sounds great!

 

A link to Evelien's talk was included in the original email Adding a link to Emma's too is a great idea, thank you!

 

Here's another reply that someone shared with me, written by an administrator of the Social Affairs Committee.

The questions asked were: Why haven't you invited any speakers with ME? Regarding previous hearings on other diseases, did you invite speakers with the disease in question? If you did, why do differently with ME? If you didn't, why not? Does the Riksdag have a policy for involvement and participation in these kinds of meetings, and if so where can I read it?

Like wringing water from a stone..?

 

Do we know which members of the Riksdag are attending?

 

No, we don't. There are two members mentioned on the schedule, the chairperson and the vice-chairperson of the Social Affairs Committee. It doesn't say, but I'm guessing they will be giving some kind of opening and closing remarks?

 

Are they being contacted by good orgs?

Thus is entirely relevant for them: @Caroline Struthers @Hilda Bastian https://www.s4me.info/threads/compl...nce-underwriting-etc-vs-me.20482/#post-344774

 

"Hi,

The members of the committee have been informed about your letter.

Regards,"