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

mango · Jul 9, 2024

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

mango said: ↑

New blog post by @MittEremltage, highlighting some really worrying changes in Region Stockholm, seemingly linked to the Oslo Consortium.

Region Stockholm uppdaterar vårdprogram för ME med ovetenskapliga påståenden om KBT och gradvis utökad aktivitet
https://mitteremitage.wordpress.com...staenden-om-kbt-och-gradvis-utokad-aktivitet/

Auto-translate:

"Region Stockholm updates ME guidelines with unscientific claims about CBT and gradual increase in activity

What the hell is Region Stockholm doing?

The guidelines for Myalgic Encephalomyelitis (ME) on viss.nu has been updated in recent days. Not many changes but what I see is changed for the worse.

Like this under the heading Management treatment:

"Curative treatment is currently lacking, but some patients recover after, for example, CBT or gradually increased physical activation."

This statement is baroque. As far as I know, there is no evidence to support that CBT and gradually increased activity cures ME. However, there is evidence that physical activity can be harmful. [...]

It is a direct patient safety risk!

When I take a closer look at who is responsible for the guidelines and compare it to previous versions, I see a new name for the context. It is the psychologist Elin Lindsäter, who works at Gustavsberg Health Centre and Karolinska Institutet. She is also part of the so-called Oslo Consortium, which I have written several posts about before. They have on their agenda to change the view of, among other things, ME from being a disease to being about incorrect thought patterns and fear of activity that maintains the symptoms. To overcome this, this group advocates CBT and gradually increasing activity.

Last autumn, we could hear the same Lindsäter advertising on Swedish radio for an upcoming study in Stockholm that she will be conducting to investigate CBT for, among other things, post-covid.

Lindsäter then shared SR's article with the following comment on her own Linkedin:

"Short report in Ekot today that gossips about the clinical study that I and my colleagues are preparing for in primary care in the Stockholm region. It is particularly important when the care choice for long-term pain, exhaustion disorder and ME/CFS is discontinued in 2025 that we equip and investigate new methods for identifying and treating severe fatigue/fatigue in the first line."

The change in the ME guidelines on viss.nu thus appears to be part of a larger plan.

At the same time as the region is updating its knowledge support with bizarre non-scientific claims, Stockholm's primary care is denying patients treatment on the basis that there is no evidence. There is an ongoing case of principle on this, which will now be discussed politically later this year."

Click to expand...

mango said: ↑

Another very important blog post by @MittEremltage, taking a detailed look at the seriously worrying changes to Region Stockholm's guidelines for ME/CFS. Do click through and read the whole article. Thank you so much, MittEremitage

Genomgång av ändringar i vårdprogram för ME i viss.nu
https://mitteremitage.wordpress.com...-av-andringar-i-vardprogram-for-me-i-viss-nu/

ETA: Summarised really well by a pwME on social media (auto-translated):

"The overall change in Viss.nu is to become vaguer, lumping ME with conditions that cause various forms of fatigue, and obscuring the situation and needs of the most severely ill."
Click to expand...

mango said: ↑

More about this, in today's blog post by @MittEremltage. Much appreciated as always, thank you! A massive thank you to the independent activist/patient advocate(s) who contacted Viss.nu to request these changes, excellent effort! No thanks to RME (the Swedish ME Association) though, their silence is very telling...

Viss.nu har gjort vissa ändringar
https://mitteremitage.wordpress.com/2024/07/06/viss-nu-har-gjort-vissa-andringar/

Auto-translate:

"Viss.nu has made some changes

The sentence about CBT and GET in the guidelines for Myalgic Encephalomyelitis (ME) on viss.nu has been removed since yesterday afternoon. This is good, but unfortunately the rest of the problematic changes seem to remain. [...]

The remaining changes may seem small and insignificant, but taken together they give the guidelines problematic direction where more vague concepts about disease and treatment are allowed to take up space while important information about the most severely ill and PEM are now removed.

I hear that some of you are once again thinking that what has happened is due to ignorance. That those who updated the guidelines do not know enough about ME. But I would say that this is more about an ideological choice.

It's so clear that they're sort of pulling a fast one and trying to get things to slip through the net. Thinking that no one will notice. What has happened now follows the same pattern as with the autumn news from Stockholm University. They started publishing outright lies and then modified some things, but not everything, after our reactions.

It is so ugly because it is as far from a scientific approach as you can get.

This is the same group of people who were involved in the news at Stockholm University. And Elin Lindsäter is part of it (see picture). The changes are in line with the ideology of the Oslo Chronic Fatigue Consortium and are certainly part of their advocacy work to change the perception of ME (and what they call "chronic fatigue syndrome") and to ensure that their treatment model is used. [...]"
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mango · Jul 9, 2024

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/

mango · Jul 9, 2024

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/

Auto-translate said:

Is the reviewer of the ME guidelines independent, impartial and objective?

Today I have sent the following letter to the medical director of viss.nu and the editorial registrar. Links to sources are at the bottom of this post.

Summary (with the help of AI)

- I am surprised that a person with a clear ideological agenda has been allowed to act as a reviewer, and I have written to the medical director of viss.nu

- The reviewer, psychologist Elin Lindsäter, is part of the Oslo Chronic Fatigue Consortium, which wants to change the narrative around ME and advocates treatments that are not in line with the current state of knowledge and international guidelines.

- Lindsäter also has a personal interest in changing the information to better suit her research.

- Lindsäter has not declared her involvement in the consortium as a conflict of interest, which is problematic.

- The guidelines have been updated in accordance with the consortium's objectives, and despite Region Stockholm's stated requirements for impartiality, independence and objectivity, Lindsäter has been allowed to act as a reviewer.

- My conclusion is that it is very problematic that a person with Lindsäter's involvement is allowed to have influence over the guidelines for ME.

When I discovered that the guidelines for Myalgic Encephalomyelitis (ME) was updated and contained false claims (advertising) for the treatment CBT and gradually increased activity, I got a slight shock. And I was very surprised that a person with such a clear ideological agenda was allowed to act as a reviewer.

The psychologist Elin Lindsäter who reviewed the changes is part of a network that claims to want to change the current biomedical narrative around ME and actively works for this. In the autumn of 2023, the same network spread false information via Stockholm University and Karolinska Institutet. Stockholm University changed the information after being alerted, while Karolinska Institutet chose to remove it completely. [1]

The network is called Oslo Chronic Fatigue Consortium and they write the following in their manifesto, which they have had published in a scientific journal [2] and where Lindsäter is a co-author

"The ‘Oslo Chronic Fatigue Consortium’ consists of researchers and clinicians who question the current narrative that chronic fatigue syndromes, including post-covid conditions, are incurable diseases. Instead, we propose an alternative view, based on research, which offers more hope to patients. Whilst we regard the symptoms of these conditions as real, we propose that they are more likely to reflect the brain's response to a range of biological, psychological, and social factors, rather than a specific disease process. Possible causes include persistent activation of the neurobiological stress response, accompanied by associated changes in immunological, hormonal, cognitive and behavioural domains. We further propose that the symptoms are more likely to persist if they are perceived as threatening, and all activities that are perceived to worsen them are avoided. We also question the idea that the best way to cope with the illness is by prolonged rest, social isolation, and sensory deprivation.Instead, we propose that recovery is often possible if patients are helped to adopt a less threatening understanding of their symptoms and are supported in a gradual return to normal activities. Finally, we call for a much more open and constructive dialogue about these conditions. This dialogue should include a wider range of views, including those of patients who have recovered from them."

The changes to the guidelines are clearly in line with the manifesto's objectives, which thus run counter to the current state of knowledge and international guidelines based on the latest biomedical research [3].

Consortium members have also directly opposed the new NICE guidelines [4] (to which the guidelines in some cases links) because NICE has removed previously outdated recommendations and warns of the risks of the treatment the consortium advocates and some of its members have a financial interest in.

In addition, Lindsäter has an interest in changing the information in viss.nu to make it more consistent with the research she is conducting [5]. The research conducted in line with the consortium's objectives is carried out in collaboration with Hans Knoop, who is also part of the consortium.

On viss.nu it is stated that experts in the Stockholm region must declare conflicts of interest [6]. In the healthcare provider guide's information on conflict of interest management in the expert organisation [7] we can read the following:

"The regions' work on knowledge management must be independent, unbiased and objective. This is crucial for the quality of and trust in the work. All those working within the National System for Knowledge Management, at national, health region and regional level, must be free of any connections that could affect their objectivity."

In the region's guidelines [8] for preventing conflict of interest, we understand that even unpaid collaborations can imply conflict of interest:

"Previous or ongoing clear position or involvement in the issue in question, for example in the context of work in non-profit organisations, previous or ongoing assignments for a party or stakeholder, for example involvement in projects on a different issue to the one in question."

Due to Lindsäter's one-time involvement in the Oslo Chronic Fatigue Consortium, I have requested the declarations of conflicts of interests for her and the others involved in the latest update of the guidelines.

It appears that Lindsäter has not declared her involvement in the consortium as a conflict of interest. Not unexpected but very problematic.

Screenshot from Lindsäter's declaration of conflicts of interest.

The declaration is submitted on the same day as the guidelines were updated (7/2-24) and approved by the medical director of viss.nu on the same day I publish my first post about the updated guidelines (4/7-24).

The Oslo Chronic Fatigue Consortium not only has a different view of post-infectious diseases than the world's collective expertise. They are trying to hold on to ideas that have already received a lot of research funding and thus been tested in studies. So it is not one idea among others, but an idea that has already been investigated unsuccessfully, but which they are going to study and fool the healthcare system and patients again.

The fact that a person with this kind of commitment is allowed to have influence over the guidelines for ME fits very poorly with the Stockholm region's requirement that the work with knowledge management should be independent, unbound and objective.

Sources: [...]
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mango · Jul 9, 2024

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.

mango · Jul 9, 2024

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.

mango said: ↑

A lawyer and the head of administration at the Patient Complaints Board in Stockholm has issued a statement in response to the many complaints received from pwME, following the political decision that led to major changes in the healthcare for pwME

It is dated 22 April 2024, file number PaN A2404-00060.
https://www.regionstockholm.se/demo...27548-23251593fe136401930-ccc978b7c2a46934872
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Decision

The Patient Complaints Board decides

The service statement on the matter is sent to the Health Board and the Patient Complaints Board requests written feedback on measures to ensure that patients with ME/CFS are provided with good and safe care, as well as any implemented and planned improvement measures and their effects by 30 September 2024 at the latest.

The official statement on the matter is sent for information to the Primary Care Board.

The official statement on the matter is sent for information to the Board of Karolinska University Hospital.

Click to expand...

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.

cassava7 · Jul 9, 2024

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.

mango · Jul 9, 2024

cassava7 said: ↑

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

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.

mango · Jul 9, 2024

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/

Auto-translate said:

Does it make sense to update guidelines in the middle of summer?

A friend of mine has been in contact with the medical director of viss.nu this week about the problematic changes to the Myalgic Encephalomyelitis (ME) guidelines.

After she sent an email asking questions about the passage on CBT and gradually increased activity, she was told that it had been removed after "consultation with experts". My friend then chose to ask further questions about the changes made to the PEM section as these could have far-reaching consequences for ME sufferers' contact with health services.

This was the response she received:

"Thank you for your feedback. I will bring your other comments to the expert group for discussion, but unfortunately it will have to be in August as everyone is now on holiday. RME Stockholm will also provide comments after the summer."

After this, the person stopped replying and left an automatic message that she had also gone on holiday.

This is terribly badly managed by Region Stockholm and viss.nu!

I understand that people must have their statutory holiday weeks. But it is actually they themselves who chose to update the guidelines on the second of July, and if they choose to make controversial changes in the middle of the summer, they must also be prepared to take the consequences?

Surely they can't just let things through that will jeopardise patient safety, turn a blind eye and take a holiday?

Illness and care needs don't take a holiday, and guidelines should be an extremely important source of knowledge for all summer care workers. After all, it's not just that the guidlines get worse. They get worse in a period of time where any continuity that exists is disrupted by staff changes.

My friend has pointed out the danger of leaving the information during the holidays and forwarded their email to the registrar and the functional address.

So no one can say they didn't know.
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rvallee · Jul 10, 2024

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.

mango · Sep 18, 2024

Stockholm's Health and medical services board will have a meeting on 24 September 2024, where they (among other things) will be making a decision about the case of principle concerning the situation for patients with ME/CFS. Proposals and decision-making documents have been published ahead of the meeting:

https://www.regionstockholm.se/demo...27581-5e3c0bab000b7253427-e19f269fe5517253478

https://www.regionstockholm.se/demo...27581-5e3c0bab000b7253427-e0501794df297253460

mango · Sep 20, 2024

RME Stockholm's comments ahead of next week's meeting:

HSFs yttrande i patientnämndens principärende
https://rme.nu/hsfs-yttrande-i-patientnamndens-principarende/

mango · Sep 25, 2024

ME-patienter protesterar – blir utan vård
https://www.mitti.se/nyheter/mepatienter-protesterar--blir-utan-vard-6.26.248820.9826bbf9a6

Auto-translate said:

ME patients protest - are left without care

- Admit that it was wrong to abolish the [private clinics].

Malin Gullstrand Bergh sits on a mattress outside the county council building and protests against the deterioration of care for ME patients.

She is trying to draw the attention of regional politicians to the consequences of abolishing the care choice Specialised rehabilitation for long-term pain and fatigue syndrome, as well as the assignment for care for ME/CFS. Together with some other ME/CFS patients, she has set up camp outside the entrance.

The choice of care ends in 2025. But already now, according to Malin Gullstrand Bergh, patients are standing, or rather lying, without care.

- ‘If I drive for three hours, I have to rest for three days. After this event, I'll be bedridden, with swollen lymph nodes and fever,’ she says, who has now had to lie down.

There have been two specialised clinics for this patient group. But in 2021, the clinic at Stora Sköndal threw in the towel, and in 2023, the Bragée clinic ended its agreement with the region, prematurely, before the abolition of the care choice.

Between the chairs

It became urgent to find a replacement. The solution was to refer patients to the Karolinska clinic for post-infectious diseases, as well as to the health centres. They should also be able to be referred to specialised care for specific symptoms.

However, many ME/CFS patients report that they fall through the cracks, that Karolinska only makes a diagnosis and that referrals are rejected. And primary care clinics do not have enough knowledge about the disease.

Hundreds of complaints have been received by the patient board.

Not getting her medicine

Malin Gullstrand Bergh now wants the region's centre government to change and do the right thing:

Make sure we get access to the drugs that have been shown to relieve the symptoms.

- Hire doctors with experience of ME at Karolinska, build up a long-term programme of clinical research. And make sure we get access to the drugs that have been shown to relieve the symptoms.

She is referring to the drugs that ME doctors prescribe ‘off-label’, medication intended for some other disease, but which have also proved effective for these patients. ‘It's not something the region recommends, and it's not something the doctors at the health centres usually prescribe.

- But they are medicines that allow us to regain a little bit of dignity in life.
Click to expand...

mango · Sep 25, 2024

RME wrote about the protest on their Facebook page yesterday:

Auto-translate said:

Today, ME sufferers and representatives from RME gathered together outside the county council building in Stockholm to further draw attention to the Patient Board's principle case on lack of treatment for ME sufferers. This resulted in a very fruitful meeting!

The committee had been informed by RME Stockholm that they would be present outside. To our delight, the whole committee came out (consisting of about 30 politicians) to listen to what RME Stockholm and the patients had to say about their situation and the lack of ME care. Representatives of the patient board were also present and reminded us of the importance of receiving complaints from patients.

As the politicians were able to meet both patients and representatives, they were able to gain a good insight into the current situation and needs of patients during an hour-long discussion.

Jenny Lundgren, President of RME, had a fruitful dialogue with @Talla Alkurdi who, among other things, acknowledged that healthcare has not turned out as planned, and that they should urgently change the situation. RME called on the parties to work together across borders and proposed the creation of a specialist group of patient representatives and healthcare professionals who are experts in ME to work together to develop a plan of care based on patient needs and what works.

We are now hopeful and look forward to a continued dialogue on ME care!

Finally, we would like to extend a special thank you to Malin Gullstrand Bergh, initiator.
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mango · Sep 28, 2024

S drar undan mattan för ME/CFS-patienter – M kräver gemensamt arbete för att säkerställa rätt vård
https://www.mynewsdesk.com/se/moder...te-foer-att-saekerstaella-raett-vaard-3345151

Auto-translate said:

S pulls the rug out from under ME/CFS patients - M calls for joint work to ensure proper care

Press release

On 24 September 2024, a large number of patients and relatives gathered to demonstrate against the deterioration of care for patients with long-term pain, fatigue syndrome and ME/CFS in the Stockholm Region. The demonstrators have been severely affected by the closure of the specialist clinic Bragée and the lack of alternative care.

The Moderates, the Christian Democrats and the Liberals are now initiating concrete measures to ensure that care for this patient group is improved. Together, we have submitted the following proposal to the Director of Health and Medical Services:

Together with the patient organisation and knowledgeable medical professionals, develop a knowledge base on ME/CFS aimed at primary care.

To initiate a dialogue with Karolinska University Hospital with the aim of enabling Karolinska Hospital Huddinge's clinic for post-infectious diseases to conduct clinical research as soon as possible in order to strengthen evidence-based medical care for patients suffering from ME/CFS.

Establishing an academic specialist centre to train other specialists and create the conditions for research on the patient group. The aim of the latter is to find treatments for this group.

Patients at the demonstration testified to the great suffering caused by the closure of specialised clinics and the transfer of care to primary care, which lacks sufficient knowledge of these complex diagnoses. Many patients are now forced to seek care abroad or remain untreated, in some cases with tragic consequences.

- I attended the demonstration to listen, not to talk. We heard horrific stories of relatives taking their own lives and patients not receiving the care or medicine they need to live. This chaos is directly created by S, MP, V and C, who closed specialist clinics and referred to a primary care that is not equipped to meet the needs of these patients. This is incredibly unfortunate,’ said Axel Conradi, health policy spokesperson for the Conservatives in Region Stockholm.

‘It is now crucial that Region Stockholm restores the care that patients have been deprived of and ensures access to the medicine they are entitled to. Many doctors want to help, but are hindered by the shortcomings of the healthcare system. We must now act quickly to meet the needs of these patients and ensure they receive the care and treatment they deserve.

The assignment from the Conservatives, Christian Democrats and Liberals to the health administration is attached.
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MittEremltage · Oct 11, 2024

I have just learned that work is underway to update the local guidedlines in region of Stockholm for Myalgic Encephalomyelitis (ME) in line with the National Board of Health and Welfare's catastrophic and patient-unsafe knowledge support.

Read more on my blog (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

MittEremltage · Oct 14, 2024

According to the medical person responsible for viss.nu, the update of the care program for Myalgic Encephalomyelitis (ME) is done "in close dialogue" with the National Association of ME patients (RME), but RME now writes on its website that this is not correct.

Blogpost:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

RME:s website:
https://rme-nu.translate.goog/rme-s..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

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