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

You really should share this with them too...

 

My impression is that they are not open to any input from pwME, they are simply not interested.

What about this in particular do you feel is so important, in relation to the hearing? In what way do you think it would help change the conversation?

 

Would it be at all useful if a brief template message was written and anyone who wants to use it can email it to their Member of Parliament to let them know that this is an issue that is important to them. It might make some MP's pay attention.

 

I don't know. There is only RME, but they never talk openly about their work, not even to their members.

The chairperson of RME is a psychologist and the vice-chairperson is a physician. Neither of them has ME. Also, it's a "top-down" organisation, so the co-chairs usually speak from the perspective of their own personal opinions and experiences and priorities, their own background/roles as healthcare professionals etc. To me it seems they are so used to talking about pwME, instead of making sure that pwME's own voices are heard, that they probably think it's all perfectly fine. They don't see why it's a problem.

I don't think they understand why it's so very important to allow, encourage and enable pwME to tell our own stories, express our own needs and wishes and experiences, to allow us to choose the issues that are the most important to us etc.

Also, at least in the Swedish ME community, there are many pwME who are very happy to have someone else speak for them (whether that is RME or somebody else, even if that person doesn't have ME themself, even if they don't know much about ME at all), who keep encouraging them, treating them as infallible saviours and heroes, and get super annoyed or hostile when different opinions or constructive feedback is expressed.

For example, my opinions on representation would definitely be seen by them as "an agressive attack", and I'd be accused of defamation, bullying, "trying to sabotage and destroy RME and their work" etc. Which only reaffirms my belief in the importance of "own voices" and "nothing about us without us".

Based on my own experiences over the years, different opinions are not welcomed within RME, because they prioritise an image of unity above all. (Maybe because of respectability politics and internalised ableism?)

Because of that, I believe myself and others questioning why no pwME has been invited to the hearing is being frowned upon by RME and their followers.

One of RME's main priorities is to "spread hope", which means that they usually choose to talk mainly about things that are "good, positive and hopeful", while playing down things that aren't.

But how would you ever be able to get across an honest and real description of the reality of our/pwME's situation, with any sense of urgency, if you keep avoiding or downplaying issues like patient safety, stigma, discrimination, representation and participation etc, and if you shy away from openly criticising BPS?

How can we demand change if the politicians and other powerful decision-makers don't know how utterly desperate the situation really is, if they don't understand what the problems are and why?

(Edited to fix some spelling mistakes.)

 

Personally, I think it sounds like a great idea. However, I think lots of pwME would argue it's a bad idea because they believe it would give an impression of divisiveness, making us seem troublesome and vexatious...

 

The applicability of the law and legal rationales

 

Put otherwise, neither ignorance, prejudice nor willful stupidity can make unlawful policy or judgement lawful

This is as central as it gets. The rest is just detail.

 

I posted this just now in the News from Scandinavia thread. I don't think it's directly related to the hearing? I don't know if Heindorff is involved in the hearing at all. Anyway, here's a copy of my post:

 

Without this, they will do what they want, whatever that will eventually mean.

They need this clarity.

 

Bragée Clinics have posted about the hearing on their website:

Utfrågning i riksdagen "Efterlängtad händelse"
https://www.bragee.se/utfragning

 

The hearing will be aired on TV too, starting at 9.45am today local time.

Trötthetssyndrom – utfrågning i riksdagen
https://www.svt.se/nyheter/svtforum/utfragning-i-riksdagen-om-trotthetssyndrom

 

Yes Unfortunately, meeting face to face or by video isn't possible, they are too severely ill.

The administrator replied:

I'm not sure if anyone has asked them for minutes of all the meetings where this hearing was planned and discussed. They should be available to the public since they are official documents, I think? But I have no idea how detailed those kind of notes would be. If no one else has requested a copy already, maybe I'll try and do it if I have some spare energy later this week.

 

By the way, I'm too ill to watch the hearing live. I'll probably have to wait until the stenographers' notes/transcript/? are made available.

If anyone else is able to watch, please do share you thoughts

 

The minister's written reply to the Riksdag has now been published. I've posted an auto-translated version of it in the News from Scandinavia thread (it's not formally related to the hearing).

https://www.riksdagen.se/sv/dokumen...ig-fraga/vard-for-personer-med-mecfs_H8112914

 

According to one of the MPs, the stenographers' write-up will be made available within approximately 4 weeks.

Better late than never, I guess, but come on..!

 

The ministerial reply is full of inaccuracies that the post I shared addresses in full

 

Continuing on that basis without those issues addressed does guarantee ongoing failure

 

Someone else had already requested copies of the minutes, and received them. The hearing was apparently discussed by the Social Affairs Committee at two separate meetings. Here are the full details: