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

InfiniteRubix said:
You really should share this with them too...
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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.
 
InfiniteRubix said:
Are they being contacted by good orgs?
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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.)
 
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Snowdrop said:
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.
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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...
 
mango said:
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".
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It's exactly the same where I am, Mango. The qualifications to be a 'saviour of the ME/CFS community' are low, probably because there are not many people lining up to help us.
 
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:
mango said:
A member of the Swedish Riksdag ("the Parliament") has asked the Minister for Health and Social Affairs a formal question about ME/CFS. The question will be answered in writing.

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

Auto-translate:
"Ulrika Heindorff (M) to Minister for Social Affairs Lena Hallengren (S)

Care for people with ME/CFS

ME/CFS is classified as a neurological disease by the World Health Organisation (WHO). This disease was previously called chronic fatigue syndrome and is characterised by prolonged fatigue with severe functional impairments.

The cause of ME/CFS is not fully understood, but many people have an infection at the onset of the disease from which they never recover. The disease is characterised by unexplained fatigue/exhaustion that lasts for more than six months. The exhaustion cannot be rested away and there is also deterioration after exertion which can last for days, weeks and even months. ME/CFS affects activity levels and functional capacity, and patients often experience partial or complete impairment in their ability to work, which also corresponds to the severity of the disease.

Several treatable diseases can cause similar symptoms and it is therefore important to get a proper diagnosis so that these can be ruled out.

The situation for ME/CFS patients is tough. Around 25% of ME sufferers are classified as severely or very severely ill. Being severely ill means having great difficulty leaving home or even leaving bed and, in the worst cases, requiring help with the most basic functions such as nutrition and personal hygiene. This is a level that can last from a few weeks up to months or years.

Symptoms can vary over time. Some people find that the disease goes into remission while others may notice a steady deterioration. In some cases, where the right help has been found and put in place, a slow stabilisation may also be noticed.

As yet, there is no cure for ME/CFS. However, with the right help and support from the various health services, symptom-relieving treatments can be found to make life a little easier. However, the availability of help varies greatly from region to region.

RME - the National Association of ME Patients, sent a letter to the Ministry of Social Affairs on 11 February 2019. They state that they never received a reply and sent a new letter to the Ministry of Social Affairs and members of the Social Affairs Committee a year later, on 11 February 2020. More than two years after the first letter, a public hearing has now been scheduled for the end of May this year, but apart from the general assignment to the National Board of Health and Welfare on "Better dialogue between the Social Insurance Agency and the health care system", no other initiatives have been taken by the government to strengthen ME/CFS care in Sweden.

RME has a number of suggestions for what should be done and writes the following:

"We therefore propose to the Ministry that

- urgently influence county councils and regions to establish specialist services that meet the needs of our members.

- general educational efforts are initiated on the basis of current international knowledge

- help to ensure that government medical research funds are prioritised for ME/CFS research in Sweden. Priorities of this type exist, for example, in Norway and the USA.

- help ensure that Försäkringskassan [the Swedish Social Insurance Agency] handles applications from our members for social security benefits in a way that corresponds to both the current state of knowledge and the specific situation of individual members. Obviously harmful and pointless rehabilitation attempts and investigations must be stopped, as they harm our members with, among other things, a reduced level of functioning as a result."

In view of the above, I would like to ask Minister for Social Affairs Lena Hallengren:

Does the Minister intend to take any initiatives in line with the proposals that RME has notified to the Ministry of Social Affairs that the Minister of Social Affairs subsequently intends to take forward?"

Translated with www.DeepL.com/Translator (free version)
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Bragée Clinics have posted about the hearing on their website:

Utfrågning i riksdagen "Efterlängtad händelse"
https://www.bragee.se/utfragning
Auto-translate said:
Hearing in the Parliament
"Long-awaited event"

Don't miss the important hearing in the Parliamentary Social Affairs Committee on ME/CFS and Infection-Related Fatigue Syndrome on 27 May at 9.45-12.00. The hearing can be followed live or afterwards via the Parliament's web TV. The hearing will be attended by a number of medical and health policy authorities, as well as ME sufferer Björn Eklund.

- This is indeed a long-awaited event, i.e. the fact that our elected politicians have now invited us to a hearing on the disease myalgic encephalomyelitis, ME/CFS, which has been treated so poorly for so long. I'm delighted," says Dr Björn Bragée.

The vice-chair of the Social Affairs Committee, Kristina Nilsson (S), is one of the initiators of the hearing. Kristina - who before becoming a full-time politician worked as a nurse, but also as the chair of a committee in her municipality - says that more than 15 years ago she came across a woman who had been diagnosed with ME/CFS.

- I had never heard of ME before, but then I saw how this woman had to deal with countless problems - in the health service, the municipality, the social security system and so on. When I read Björn Eklund's book "From bedridden to marathon", I was horrified. After all these years, haven't we come any further? That's when I suggested to the chair of the Social Affairs Committee, Acko Ankarberg Johansson (KD), that all of us members of the committee should have the opportunity to take advantage of the knowledge base that exists on ME/CFS. Acko immediately said yes!

- During the hearing, the main focus will be on ME/CFS and Infection-Related Fatigue Syndrome, but of course we will also look at the potential care challenge we may face. That is, how we can prepare ourselves to take care of all those who suffer from long-term CFS, says Kristina Nilsson.

Translated with www.DeepL.com/Translator (free version)
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NelliePledge said:
@mango i would go back with

‘Thank you for passing it on to the committee, when can I expect a response to the point raised?’

ETA they are making it seem like being open but at every point giving a minimal response. In this case the reply implies that they hope the fact that the point has been highlighted to the committee will be sufficient to close it off. They are not engaging in dialogue. if the people involved in the correspondence are able to meet face to face or by video consider raising the pressure by asking for a meeting.
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Yes :( Unfortunately, meeting face to face or by video isn't possible, they are too severely ill.

The administrator replied:
Auto-translate said:
The members of the committee were informed of the content of your e-mail. It is up to each member to decide whether he or she wishes to take any action.
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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 :)
 
mango said:
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:

mango said:
A member of the Swedish Riksdag ("the Parliament") has asked the Minister for Health and Social Affairs a formal question about ME/CFS. The question will be answered in writing.

Vård för personer med ME/CFS
https://www.riksdagen.se/sv/dokumen...ig-fraga/vard-for-personer-med-mecfs_H8112914
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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
 
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mango said:
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..! :slugish:
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There’s a lot we don’t do right in the U.K. but I double checked and transcripts of evidence before parliamentary committees are available the following day just like proceedings in the main chambers and legislative committees.
 
mango said:
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.
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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:
Minutes 4 May said:
§ 9 Office announcements
The office manager briefly reported on the work plan.
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Minutes 20 May said:
§ 7 Letters received
The letters received, as set out in attachment 2, were reported.

Attachment 2:
Letters on questions concerning the planned hearing on ME/CFS on 27 May.
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:banghead::rofl::mad::grumpy:
 
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