News from Scandinavia

[mango]

I posted an opinion piece in the long covid thread today, by a politician demanding better healthcare for people with long covid and ME. It also mentions the sad fact that Stora Sköndal's ME/CFS clinic is closing down. However, I felt this piece of information fit better in this thread:

Bragée ME-center currently receives 1,100 patients and the activities are, according to the documents to the region's contract committee on 3 February, subject to an in-depth investigation as the health and medical care administration has received signals that the contract with the region is maybe not being adhered to.

Dagens Medicin: ”Vården av långtidssjuka i covid måste säkerställas”
https://www.dagensmedicin.se/opinion/debatt/varden-av-langtidssjuka-i-covid-maste-sakerstallas/

(Edited to add link to the thread about Stora Sköndal ME/CFS clinic closing down.)

 

[Kalliope]

I posted an opinion piece in the long covid thread today, by a politician demanding better healthcare for people with long covid and ME. It also mentions the sad fact that Stora Sköndal's ME/CFS clinic is closing down. However, I felt this piece of information fit better in this thread:


Dagens Medicin: ”Vården av långtidssjuka i covid måste säkerställas”
https://www.dagensmedicin.se/opinion/debatt/varden-av-langtidssjuka-i-covid-maste-sakerstallas/

(Edited to add link to the thread about Stora Sköndal ME/CFS clinic closing down.)

Very good. Glad to see a politician speaking about this! Unfortunately I read the comment which I assume is written by a health care worker.
Here's how it begins:

Are these clinics really needed? I am open to new science and the fact that we do not know everything at the moment.However, I think many, mainly in primary care, share my view that me / cfs and long-term covid are in many cases seen as another loosely defined criteria diagnosis for a group of reaction patterns that have always circulated, mainly in primary care. Personally, I think that psychological and learning-based explanatory models often feel more applicable than biomedical models.

Poor Swedish Long Covid patients

 

[mango]

(I'm posting this as info, not a recommendation.)

Bragée is arranging a series of educational webinars for physicians. It's free of charge and open to anyone.

The first webinar in the series happened last week. A recording is available to watch on their website:

Covid-19 och ME/CFS Tankar kring infektionernas roll i syndromets uppkomst
("Covid-19 and ME/CFS Thoughts about the role of infections in the onset of the syndrome")
Sven Britton, infectious disease doctor

According to the current schedule there will be webinars on sleep, brainfog, hypermobility, fatigue & ME & ACT, craniocervical obstructions, neurology & ME, nociplastic pain, and whether to refer chronic stress/fatigue patients to a physiotherapist or psychologist or both.

The ACT for ME webinar scheduled for 14 April has the sub-heading "About psychology, energy and mitochondria - a new overall picture" and will be hosted by Dr Gunnar Olsson. Threads about some of his ACT for ME studies (gradually increased activity and talk therapy in order to overcome fear avoidance behaviours) here and here.

 

[mango]

[Paywalled] Folkbladet: Löfte: Länet får ME-mottagning – möts av skepsis ("Promise: The county will get a ME center - is met with skepticism")
https://www.folkbladet.nu/2020-10-31/lofte-lanet-far-me-mottagning-mots-av-skepsis

A good biomedical ME center in Västerbotten (a county in the north of Sweden) would be immensely valuable and important, seeing that there are currently no ME centers north of Stockholm, and long-distance travel is simply not an option for many pwME.

The news article linked above is unfortunately paywalled, but here's a Facebook post by ME-vård saknas that tells you the important bits:

Google Translate said:
Politicians in the Västerbotten Region are now making new promises that a specialist clinic for ME will be started up in the region. But there are still no formal decisions from neither the Health and Medical Care Committee, which is meeting this November, nor the Regional Council. The latter will meet in February 2021 and are the ones who will finally decide on the budget.

We were contacted by Västerbottens Folkblad who wanted reactions to the promise. #MEvårdsaknas' initiator Malin Carlbom gave a written comment and we thought we would share it in its entirety with you:

“Two years ago, I was happy and hopeful. Back then, the Health and Medical Care Board had decided that there would finally be a specialist clinic for ME and that money would be set aside for this in the coming budget. A year later, the region put everything on ice and that was when we started protesting and finally submitted the petition with 10,000 signatures from #MEvårdsaknas.

After discussions, the region finally appointed another inquiry, which will now be decided on another year later. In light of this, it really feels impossible for me to express myself about what I feel. Ideally, I would like to ask you to come back when the decision has been made, the center is in place and they have started receiving patients, because only then will I have something to comment on.

It probably sounds both harsh and pessimistic, but we patients cannot put our hope in something we do not know for sure will come true. I have been ill for over ten years and still do not have any functioning care. Although I am mostly bedridden and get sicker by visiting the [primary care] health center, it is not even a given that the health care workers will do home visits. And I'm not alone in this.

Every day without adequate medical care for people ME means that seriously ill people are at risk of being mistreated by the healthcare, that many are harmed by healthcare and that some are completely without healthcare. The situation was urgent already two years ago and it is just as urgent today. We hope there are no more false promises now, because we can not wait any longer! Now it's up to proof for Region Västerbotten!”

Yesterday the regional board of Västerbotten decided on a supplementary budget, which according to the politicians means that a specialist clinic for ME/CFS in Umeå will finally become a reality.

Politician LiseLotte Olsson comments on the decision, saying "It is very gratifying that we can now finally start a specialist clinic for ME/CFS. At present, there are no clinics north of Stockholm and it is really positive to have a clinic in Västerbotten, for increased accessibility and help for patients in Norrland."

Her using the word "Norrland", which refers to the northernmost half of Sweden, is kind of misleading at this point in time, since we still don't know whether the new clinic will be accepting patients from other counties than Västerbotten.

Someone asked in the comments on Facebook when the clinic will open. I'd say that's a very important question, since there has been empty promises and many years of delays already... The politicians reply "We are investigating that at the moment and will get back to you as soon as we have an answer. But we are working towards it happening sooner rather than later."

Personally, I'm not getting my hopes up yet. Let's wait and see what happens...

 

[Kalliope]

A good opinion piece today from civil engineer and ME patient Benedikte Monrad-Krohn published at forskningno, a news site about research.

If you treat everyone with a stomach ache as one entity of illness, you will accommodate many with both physical and mental causal explanations, with everything from anxiety to cancer. The same situation will be if you create a disease entity only with fatigue as a criterion.

...
If they get better from exercise, there is no reason to doubt that exercise is important and right. But if patients say they get sicker from activity and not better from psychological interventions, there is no reason to doubt this either.

We must be happy for everyone who recovers, and at the same time look for treatment for those who do not get better from the interventions that are currently available. Find the right treatment for the right patient. If not, I'm afraid the 'ME war' will just continue.

"ME-krigen" trenger ikke å være en krig
google translation: The "ME war" doesn't have to be a war

 

[mango]

Yesterday the regional board of Västerbotten decided on a supplementary budget, which according to the politicians means that a specialist clinic for ME/CFS in Umeå will finally become a reality.

Politician LiseLotte Olsson comments on the decision, saying "It is very gratifying that we can now finally start a specialist clinic for ME/CFS. At present, there are no clinics north of Stockholm and it is really positive to have a clinic in Västerbotten, for increased accessibility and help for patients in Norrland."

Her using the word "Norrland", which refers to the northernmost half of Sweden, is kind of misleading at this point in time, since we still don't know whether the new clinic will be accepting patients from other counties than Västerbotten.

Someone asked in the comments on Facebook when the clinic will open. I'd say that's a very important question, since there has been empty promises and many years of delays already... The politicians reply "We are investigating that at the moment and will get back to you as soon as we have an answer. But we are working towards it happening sooner rather than later."

Personally, I'm not getting my hopes up yet. Let's wait and see what happens...

According to replies from the politicians in the comments under the linked Facebook post:

* The clinic will have a biomedical approach to ME

* They hope to open the clinic "after the summer 2021", but the details are not finalised yet

* They will be offering home visits to the severely ill patients

* They will only be accepting patients from Västerbotten county -- not the whole of Norrland/the northern half of Sweden, as Olsson vaguely suggested earlier. The "aim and idea" is that they will be opening up to patients from other counties later on. For reference, Västerbotten has approx 270 000 inhabitants vs Norrland 1 185 000 inhabitants.

 

[mango]

The Southern Healthcare Region (Södra sjukvårdsregionen, the four southernmost counties in Sweden) is currently working on assessing the needs and resources of ME/CFS patients. The decision was made in November 2020, and the report is expected to be published in August 2021 at the latest.

Depending on their conclusions, next step could be to look into the feasibility of opening a ME/CFS specialist clinic in the area.

https://sodrasjukvardsregionen.se/download/delprojekt-26-me-cfs/

Group members

The working group shall include representatives from all regions (Blekinge, Halland, Kronoberg and Skåne). The group shall be multidisciplinary and include the following areas of expertise:

* Primary care
* Rehabilitation / pain rehabilitation
* Psychiatry
* Neurology
* Infection
* Nursing

The group must also be multi-professional and include doctors, nurses, physiotherapist, occupational therapist and psychologist.

The group should preferably also include a representative from a patient or relative association.

There are some influential BPS proponents in the area, so let's keep our fingers crossed and hope for the best possible outcome...

 

[mango]

You don't want to miss this brilliant opinion piece that was posted in the long covid thread today Please click through to the article to increase its traffic/stats!

De som har långtidscovid kan inte viftas bort lika lätt som de ME-sjuka
https://www.altinget.se/artikel/kro...an-inte-viftas-bort-lika-latt-som-de-me-sjuka

Google Translate, English

"Those who have long covid can not be waved away as easily as those with ME

Agnes Arpi

Now a just awakened muddle-headed Sweden will have to meet the needs of the new patient group with long-term covid. At the same time, tens of thousands of similarly ill people are still without care and security after many years. [...]"

 

[mango]

Yesterday the regional board of Västerbotten decided on a supplementary budget, which according to the politicians means that a specialist clinic for ME/CFS in Umeå will finally become a reality.

Some new details in this paywalled article published yesterday:

Klubbat: Klart för start av ME-mottagningen
https://www.folkbladet.nu/2021-03-02/klubbat-klart-for-start-av-me-mottagningen

The plan is to start an ME/CFS clinic at Norrland University Hospital, Nus, in the autumn of 2021, which can verify or exclude the diagnosis ME/CFS, and provide support and treatment.

The plan is for ME specialist care to be obtained at the Geriatric Center at Nus, a clinic open two days a week, which is expected to have time to investigate four patients a week. The cost for the region is currently estimated at 3.67 million.

 

[Sly Saint]

It sometimes happens that the media shows the ME-sick interest. This is especially the case when one of the most severely affected has taken his own life because the pain has become extreme, often aggravated by the care they have been offered. Then suddenly the shortcomings become clear for a short while. Then the debate tends to culminate in the issue of the right to die.

What it should be about more often is not the right of ME patients to die, but their right to live.

 

[mango]

A wellness magazine article, a former athlete shares her personal story. Worth a read

Helena har ME: "Jag var elitidrottare – nu kan jag knappt öppna en flaska"
https://www.mabra.com/reportage/helena-me-symtom/7331482

Google Translate, English ("Helena has ME: 'I was an elite athlete - now I can barely open a bottle'")

She trained at an elite level and has always identified herself as a high-performing person, both physically and mentally. When the body said no, both the doctors and Helena thought she was exhausted, a wrong theory that also exacerbated the consequences of ME - the disease she actually suffered from. [...]

My body was badly worn out, yet I exercised. Both I and the doctors believed that physical activity could speed healing and recovery. It would probably have worked - if fatigue had been the correct diagnosis. With ME, it is just the opposite, the disease means an effort-triggered deterioration: the more you make the effort, the higher the price you have to pay. Had I known then that it was ME, I would have been able to slow down the course of the disease. Instead, I struggled through workouts that eventually made me go from mild to severe ME, which is my diagnosis today.

 

[Midnattsol]

A good opinion piece today from civil engineer and ME patient Benedikte Monrad-Krohn published at forskningno, a news site about research.



"ME-krigen" trenger ikke å være en krig
google translation: The "ME war" doesn't have to be a war

A reply to this was posted today
"Hvilke pasienter skal man lytte til i den polariserte ME debatten?"
Google translate: "Which patients should be listened to in the polarized ME-debate?"

Again it starts with the the straw-man argument that it's about those who believe the disease is purely physical in origin, and those that also believe there is a psychological component.

 

[Hoopoe]

Again it starts with the the straw-man argument that it's about those who believe the disease is purely physical in origin

I wouldn't consider it a strawman argument. We're being asked to believe in a psychological cause of illness for political reasons and there's simply no good reason to believe in this idea.

Since there is no magical mind-stuff that is not physical that makes diseases happen, and nobody seriously proposes this anyway, what is actually meant with psychological component is that the patients are behaving and thinking badly, in excess of what can currently be explained with biology.

It's common for healthy people to misunderstand chronic illness as a sort of personality disorder because they can only see the behaviour, but not feel the symptoms.

So far psychological interventions targeting the thoughts and behaviour haven't been shown to have any meaningful effect on the illness. The whole idea therefore seems to be nothing more than the ordinary misunderstanding of chronic illness that healthy people are so susceptible to. That people still cling to this idea is motivated by political reasons.

I'm worried about conceding any ground to people who want us to believe in a psychological cause when there is really no good reason to. For me my illness behaves like a purely physical one, just like the flu or a tendon injury.

When looking at patients as group, contrary to popular belief, the scientific evidence from prospective cohort studies has shown that things like stress and neuroticism do not predispose a person to develop ME/CFS.

 

[Midnattsol]

I wouldn't consider it a strawman argument. We're being asked to believe in a psychological cause of illness for political reasons and there's simply no good reason to believe in this idea.

Since there is no magical mind-stuff that is not physical that makes diseases happen, and nobody seriously proposes this anyway, what is actually meant with psychological component is that the patients are behaving and thinking badly, in excess of what can currently be explained with biology.

It's typical for healthy people to misunderstand chronic illness as a sort of personality disorder because they can only see the behaviour, but not feel the symptoms.

So far psychological interventions targeting the thoughts and behaviour haven't been shown to have any meaningful effect on the illness. The whole idea therefore seems to be nothing more than the misunderstanding of chronic illness that healthy people are so susceptible to. That people still cling to this idea is motivated by political reasons.

Are you saying you don't get filled with hope reading anecdotes?

 

[Hoopoe]

No, I think these people are lying to themselves or having some transient placebo responses, which by the way are entirely consistent with a purely physical illness. A person can also experience genuine improvement of the illness for reasons that are not clear, but attribute it to their favorite intervention, which for some is psychotherapy.

 

[mango]

ME on Swedish TV tomorrow Monday, 8 March. Björn Bragée writes in a Facebook post:

On Monday morning in Malou's TV4 program, I get to meet the patient for the first time who recovered from ME/CFS, but in a book described an unforgivable journey through Swedish healthcare, and where he had to pay 100,000s of SEK in Norway to find the right one, the journalist Björn Eklund.

Maybe it will be possible to comment on the issue of ME/CFS and LONG-COVID as well, something I know is close to his heart. And today we go out and describe two major research projects at our clinic, one about a new drug for nerve pain in the feet in diabetes, and one where we will evaluate and get to the bottom of the issue of neuroinflammation and changes in the central nervous system in ME/CFS. www.bragee.se

I've written about Eklund and his book in this thread before, here.

Here is a thread about the new study.

Link to stream Malou Efter Tio online: https://www.tv4play.se/program/malou-efter-tio

(I can't help noticing that dr Bragée doesn't mention the negative result of the Rituximab study...)

 

[Snowdrop]

Again it starts with the the straw-man argument that it's about those who believe the disease is purely physical in origin, and those that also believe there is a psychological component.

They have started a debate between to alternatives the premise of which is wrong.

The issue isn't is it physical or psychological. The issue is for those who get lingering post-viral symptoms how many will recover without ANY intervention and how many will remain ill. For those who remain ill how well does a psychological intervention work?

What matters is what is factual. No argument will ever be concluded one way or the other. And it is the province of true believers to continue on in the vein. We need facts. We need science. The psychological proponents have neither. And so they deflect, obfuscate and use ad hominem attacks when pressed.

 

[Esther12]

They have started a debate between to alternatives the premise of which is wrong.

The issue isn't is it physical or psychological. The issue is for those who get lingering post-viral symptoms how many will recover without ANY intervention and how many will remain ill. For those who remain ill how well does a psychological intervention work?

What matters is what is factual. No argument will ever be concluded one way or the other. And it is the province of true believers to continue on in the vein. We need facts. We need science. The psychological proponents have neither. And so they deflect, obfuscate and use ad hominem attacks when pressed.

They know it's in their interests to try to frame the debate in those terms. It makes the problems with SMILE, PACE, etc irrelevant and suddenly it just becomes a simple matter of whether or not you're open minded enough to recognise that psychological factors can affect how people feel.

 

[Midnattsol]

What matters is what is factual. No argument will ever be concluded one way or the other. And it is the province of true believers to continue on in the vein. We need facts. We need science. The psychological proponents have neither. And so they deflect, obfuscate and use ad hominem attacks when pressed.

I get really frustrated about the accusation towards the Norwegian ME Association, that they (and us members) are close minded, and that patients who are more open to other explanations have nowhere to go and are persecuted and not listened to.

 

[mango]

Opinion piece by reps for three Swedish patient organisations.

"Ge upprättelse åt de som missbedömts och försummats i sjukvården"
https://www.altinget.se/artikel/ge-upprattelse-aat-de-som-missbedomts-och-forsummats-i-sjukvaarden

"Give redress to those who have been misjudged and neglected in healthcare"

[...] We are pleased with the investment in covid patients, but also now want to see an investment in our groups and thereby provide redress for all, mostly women, who have been misjudged and neglected in healthcare for a long time. At the same time, we would like to point out that the doctors who actually have experience of our patient groups are important sources of knowledge for covid care.

In connection with International Women's Day, we demand that the government and regions pay attention to and evaluate the care for patients with EDS/HSD, Fibromyalgia and ME/CFS, as well as long-term illness after covid-19.

ETA: