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

mango

mango

Senior Member (Voting Rights)
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

riksdagen.se auto-translate said:
Open hearing on ME/CFS and infection triggered fatigue syndrome

On 27 May, the Social Affairs Committee will hold an open hearing on ME/CFS and Infection-Related Fatigue Syndrome,

Time: Thursday 27 May, 9.45-12.00.

(Seating in the First Chamber is limited due to the corona pandemic).

The hearing is open to the public and the media and can be viewed live or afterwards via the Riksdag's web TV. Please note that the number of seats is limited due to the corona pandemic.

Preliminary programme

Most participants will participate remotely.

9.45 Kristina Nilsson (S), Vice-Chair of the Social Affairs Committee

9.50 Björn Eklund, ME/CFS patient

10.00 Kerstin Heiling, President of the National Association for ME Patients and their Families

10.10 Jonas Axelsson, Associate Professor and Specialist in Internal Medicine and Immunology, Amelie Clinic

10.20 Björn Bragée, pain physician, Bragée clinics

10.30 Per Julin, MD, Specialist in Rehabilitation Medicine, Karolinska Institutet

10.40 Anders Rosén, Professor Emeritus, Linköping University

10.50 Désirée Pethrus, Regional Councillor for Health Care Development, Stockholm Region

11.00 Anna-Lena Hogerud, Regional Councillor for Health and Medical Care, Region Skåne

11.10 Thomas Lindén, Head of Knowledge Management for Health Care, National Board of Health and Welfare

11.20 Questions from members

11.55-12.00 Acko Ankarberg Johansson (KD), Chair of the Social Affairs Committee

Translated with www.DeepL.com/Translator (free version)
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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. :nailbiting:

(Edited to add the link, sorry!)
 
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mango said:
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.
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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 :grumpy:

(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.)
 
mango said:
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.
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Björn Bragée:

 
mango said:
Björn Bragée:

Click to expand...

There are some interesting comments in this thread. For example:
Björn Bragée on research funding Auto-translated said:
"However, I am pessimistic about research funding, we have applied so many times, and it takes an incredible amount of effort to make applications that are thrown out because the disease is not a priority, nor is advanced and forward-looking research.

We look abroad for funding, the largest grant for ME research in Sweden came from the US, it is shameful that big brother's tax money is needed. But we are trying to get clinical, cheaper research and have plans to create crowdfunding, the government wants research to be free and not have too many directive rules. And free research is important, so what can you say.

After a long time COVID research got 50 million [SEK], it's like giving a 50 note to the person whose house is on fire. Still, it was a unique amount, remember that"

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S.S Auto-translated said:
"My daughter turns 16 in 1 month... On Monday she will be forced by LVU [the Act with special provisions for the care of young people] to move to a family home... Why??? Well, she has ME/cfs she has been sick for 3 years.

The pediatrician refuses to refer further but makes notifications to the social services that she thinks our daughter should be in school some hours every day. She has the play therapist and physiotherapist with her on her leash... They want her to meet them every week to play basketball and go for walks....

For someone who sleeps 15 to 18 hours a day, severe nausea, vomiting, indescribable ulcers etc....

Paid a private specialist last fall, finally daughter got help but most importantly she was listened to and believed.

Social services and paediatrician won't budge.... So now she is forced to go to a family that knows nothing about ME/cfs where the pediatrician is supposed to give information about our daughter's health(!!!)

How far will it go before they realise she is ill.... How long before they admit... Don't even want to think about the worst that can happen.....Can all children with neurological diagnoses be moved through LVU????

How can 1 doctor keep the control for 3 years without a positive result, time to refer further....

A very sad mother of a desperately ill child"

Translated with www.DeepL.com/Translator (free version)

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:cry::cry::cry:
 
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mango said:
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
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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.)
 
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If I had received this response I would send a follow up email about involvement of people with ME @mango One of the downsides of raising a few different points in the same letter is the likelihood of low integrity people trying to avoid responding to difficult questions. I would follow up with the single point so it cannot be dodged.
 
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NelliePledge said:
If I had received this response I would send a follow up email about involvement of people with ME @mango One of the downsides of raising a few different points in the same letter is the likelihood of people trying to avoid responding to difficult questions. I would follow up with the single point so it cannot be dodged.
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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 would simply say

Thanks very much for your answers to my questions however I would also appreciate your response to this important point i raised which wasn’t covered in your email, [quote the point exactly the same words] ‘why was no one with ME invited etc...’

regards

avoid temptation to raise anything else. If there are other points to raise wait until they respond to this one so there is literally only one issue they have to cover in the reply.
 
 
NelliePledge said:
I would simply say

Thanks very much for your answers to my questions however I would also appreciate your response to this important point i raised which wasn’t covered in your email, [quote the point exactly the same words] ‘why was no one with ME invited etc...’

regards

avoid temptation to raise anything else. If there are other points to raise wait until they respond to this one so there is literally only one issue they have to cover in the reply.
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Thank you so much, sounds great! :hug:
 
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?
Administrator Auto-translate said:
Hi,

The committees of the Riksdag have the possibility to organise public hearings to deepen their knowledge of a particular issue within their respective areas of work, by inviting experts and representatives of various social interests to give lectures and answer questions from the members. It is up to the committee organising the hearing to decide who should be invited.

Regardless of the subject of the hearing, there is usually a large number of knowledgeable people and relevant organisations who can be invited, but the committee must always make a selection for reasons of time constraints.

The Riksdag's public hearings are broadcast on the Riksdag's web TV where anyone interested can follow the discussions. It is also possible for the public to follow the hearings in person from the gallery in the Chamber, but the number of seats in the gallery is currently limited due to the current pandemic.

Best regards,

Translated with www.DeepL.com/Translator (free version)
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Like wringing water from a stone..? :grumpy:
 
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
InfiniteRubix said:
Unmanaged post-viral disease risks and rising pandemic exposure (Updated with addition of version history) "Post-viral disease is an undermined field of risk assessment, pricing, budgeting, compliance management, reputation management, liability generation and discrimination. Elevated probability of unlawful clinical judgement and/or administrative decision-making in this field pervades clinical and therapeutic services and related contracting parties. Risks are routinely misjudged and exacerbated. " "Medico-legal issues, requirements and enforcement factors are discussed. Legal obligations on service providers versus current risk generation are then outlined, along with their impacts on liability, malpractice-risk and indemnification. Risk-mitigation measures are offered throughout and are followed by compliant education resources. This pre-released draft is specifically not structured for scientific audiences and will receive ongoing updates. Communication of factual or typographical errata or other suggestions is welcome." https://www.linkedin.com/posts/pand...alomyelitis-activity-6799785407891427328-OgXJ Image Credit: Weiss & Paarz Medical Malpractice Attorneys #LongCovid #covid #MyalgicEncephalomyelitis #MECFS #riskmanagement #medicaleducation #doctors #insuranceindustry #underwriting #claimsmanagement #practicemanagement #generalpractice #physiotherapists #covid19impacts
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Risks from the following factors are routinely misjudged and exacerbated by normalised procurement of fallacious services or testimony: Clinical judgement, administrative decision making, policy formulation or policy implementation that fail to meet the requirements of the law are not lawful by definition and carry risk Claims that do not meet the thresholds of scientific probity, rigour and/or process cannot be described as science and are thus legally unsustainable and carry risk (regardless even of partial or total contradiction by bodies of work that are sufficiently substantive) Clinical judgement or administrative decision making that depends on such claims cannot therefore sustain claims of lawlulness and carry risk Education or organisational policies that encourage otherwise and carry risk, by directly cultivating unlawful behaviour, versus statutory provisions, duties of care, policy and regulation
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NelliePledge said:
I would simply say

Thanks very much for your answers to my questions however I would also appreciate your response to this important point i raised which wasn’t covered in your email, [quote the point exactly the same words] ‘why was no one with ME invited etc...’

regards

avoid temptation to raise anything else. If there are other points to raise wait until they respond to this one so there is literally only one issue they have to cover in the reply.
Click to expand...
"Hi,

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

Regards,"
 
@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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