Sweden: ME clinic and Masano Health digital rehab for ME/CFS

mango · Feb 26, 2023

https://twitter.com/user/status/1629804449836285957

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MittEremltage · Mar 12, 2023

Me and a friend have reported the Västerbotten region to the Chancellor of Justice (JK) because of how they handle public documents.

I hope the Google translation of this blog is understandable:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

MittEremltage · Mar 19, 2023

Failure and breakdown. Yes, those are words used in the local newspaper Folkbladet today in a longer report about ME care in Västerbotten.

The journalist has had contact with ME sufferers who talk about staff with a lack of knowledge about ME, frivolous investigations, none or harmful treatment and a lack of home visits for the most seriously ill. The report also sheds light on the suspected corruption that led to a police investigation and the suspected ethics review offense that is being investigated by ÖNEP.

The region responds to the criticism primarily through operations manager Gabriella Eikelboom. In short, it can be summed up as her defending al of it and some things she says are remarkable.

The article:
https://www.folkbladet.nu/2023-03-1...gen-upplevde-att-de-hade-valdigt-lite-kunskap

My analysis in a blogpost:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

mango · Mar 20, 2023

MittEremltage said: ↑

Failure and breakdown. Yes, those are words used in the local newspaper Folkbladet today in a longer report about ME care in Västerbotten.

The journalist has had contact with ME sufferers who talk about staff with a lack of knowledge about ME, frivolous investigations, none or harmful treatment and a lack of home visits for the most seriously ill. The report also sheds light on the suspected corruption that led to a police investigation and the suspected ethics review offense that is being investigated by ÖNEP.

The region responds to the criticism primarily through operations manager Gabriella Eikelboom. In short, it can be summed up as her defending al of it and some things she says are remarkable.

The article:
https://www.folkbladet.nu/2023-03-1...gen-upplevde-att-de-hade-valdigt-lite-kunskap

My analysis in a blogpost:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
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This is massive!! So good to see this in a newspaper! What an absolute dumpster fire

They say in the article that the project probably won't continue, probably will be cancelled. I desperately hope so!

It has already caused so much harm, would be an absolute catastrophe if this "model" were to be rolled out all across the country...

Brilliant brillant work, @MittEremltage! Thank you, thank you, thank you, for everything

MittEremltage · Mar 19, 2023

mango said: ↑

Brilliant brillant work, @MittEremltage! Thank you, thank you, thank you, for everything
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Thank you! ❤️ It is disgusting. Let’s hope ÖNEP ”sätter ner foten” heavily! Soon.

MittEremltage · Mar 21, 2023

MittEremltage said: ↑

Me and a friend have reported the Västerbotten region to the Chancellor of Justice (JK)
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Good News! The Chancellor of Justice has started an inspection.

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

Clementine · Mar 22, 2023

MittEremltage said: ↑

Good News! The Chancellor of Justice has started an inspection.

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

mango · Jul 2, 2023

Polisanmäld läkare anklagar regiondirektören för kränkning: ”Utsett mig som syndabock”
https://www.folkbladet.nu/2023-07-0...-for-krankning-utsett-mig-som-syndabock-0e4e9

Auto-translate said:

Doctor who was reported to the police accuses regional director of abuse: "They are scapegoating me"

A doctor who has been fired from Region Västerbotten accuses the regional director of victimisation. The trade union and the employer disagree and the dispute continues.
A majority of the employees have resigned from the same department.
"There are many strange things in this case," say representatives of the Swedish Medical Association, who are highly critical of the region's behaviour.

There is currently a dispute between Region Västerbotten and a doctor who was reported to the police in December while on sick leave.

Folkbladet has previously reported on patients' criticism of the ME clinic. After an investigation, two members of staff were reported to the police by the region, suspected of bias and irregularities. The audit has also noted that there was probably bias in the procurement process, as the two employees have or had links to the company and the service to which they referred their patients.

However, one of these employees, a doctor who also works on externally funded research projects at Livsmedicin, was on sick leave and had to learn about the police report trough the media. The doctor has since reported the regional director Tommy Svensson, the head of operations and a head of department for victimisation, harassment and retaliation.

In the complaint, the doctor states that the police report was not preceded by information to the person concerned, that the Regional Director made a statement about the the police report in the media in a way that was perceived as revealing and that the police report was made on unclear grounds.
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Very long article, lots of details on some of the wrongs that have been committed. I think the best words to summarise it all would be "dumpster fire"...

Auto-translate said:

The investigation also reveals that the sick leave is mainly due to an excessive workload. But the doctor has also taken very uncomfortable and felt exposed by critical writings on a blog that scrutinised the ME clinic, without receiving support from either the head of the either the head of the organisation or the occupational health service.
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Good on the blogger for speaking truth to power! Be brave, and be gloriously, defiantly noncompliant, as Jennie Spotila once said

It reminds me of something Edward Snowden said in an interview a while back: "The reality is, resistance starts when enough people become uncomfortable". Thank you so much, @MittEremltage and team, for making people uncomfortable

mango · Jul 2, 2023

Do read the comments on Folkbladet Västerbotten's Facebook post. They bring up some really important points about what's missing in the article.

Auto-translate said:

[...] Ultimately, this is about a group of vulnerable, sick people who do not receive care. It would be good if we not only got one side's defence, but if we got a more comprehensible and nuanced picture of what has actually happened that means that we once again have no care north of Stockholm for ME patients.
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MittEremltage · Nov 2, 2023

The Ethics Review Appeals Board (Överklagandenämnden för etikprövning ÖNEP) decided to press charges against the Västerbotten ME project ”Tänk rätt från början”. They state that the project was research without ethical permission - not healthcare. The case will now be further investigated by police and prosecutor.

Link to ÖNEP:
https://www.onep.se/media/3061/o-neps-beslut-t12-2022.pdf

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

mango · Nov 3, 2023

Paywalled news articles:

Regionen gjorde fel – ärendet går till åklagare
https://www.vk.se/2023-11-01/regionen-gjorde-fel-arendet-gar-till-aklagare-edccd

ME-projekt var forskning utan tillstånd – region anmäls
https://www.dagensmedicin.se/alla-n...t-var-forskning-utan-tillstand-region-anmals/

MittEremltage · Nov 3, 2023

One more paywalled news article:

Folkbladet: Regionen saknade tillstånd för forskning om ME-sjuka – ärendet går till åklagare
https://www.folkbladet.nu/2023-11-0...g-om-me-sjuka-arendet-gar-till-aklagare-7c958

MittEremltage · Nov 3, 2023

Läkartidningen also reports about ÖNEPs decision.

Swedish:
https://lakartidningen.se/aktuellt/...otten-efter-forskningsprojekt-utan-tillstand/

English (Google translate)
https://lakartidningen-se.translate..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

MittEremltage · Feb 12, 2024

Good News! Today Läkartidningen reports that the police/prosecutor have opened an investigation for suspected crime against the ”law of ethics” (etikprövningslagen).

”In October, a project on digital ME rehabilitation in Region Västerbotten was prosecuted because it lacked an ethics review permit. Prosecutors have now decided to open a preliminary investigation. »I have decided to initiate a preliminary investigation as there is reasonable reason to assume that a crime has been committed,« states prosecutor Andreas Nyberg for Läkartidningen.”

Open article (Google translated):
https://lakartidningen-se.translate..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

mango · Feb 13, 2024

MittEremltage said: ↑

Good News! Today Läkartidningen reports that the police/prosecutor have opened an investigation for suspected crime against the ”law of ethics” (etikprövningslagen).

”In October, a project on digital ME rehabilitation in Region Västerbotten was prosecuted because it lacked an ethics review permit. Prosecutors have now decided to open a preliminary investigation. »I have decided to initiate a preliminary investigation as there is reasonable reason to assume that a crime has been committed,« states prosecutor Andreas Nyberg for Läkartidningen.”

Open article (Google translated):
https://lakartidningen-se.translate..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
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Finally!

MittEremltage · Mar 21, 2024

Lokal newspaper writes about the ongoing investigation.

Paywalled article:
https://www.vk.se/2024-03-17/brottsmisstanke-aklagare-utreder-regionens-me-projekt-d9ca1

Short summery by me (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

mango · Mar 21, 2024

MittEremltage said: ↑

Lokal newspaper writes about the ongoing investigation.

Paywalled article:
https://www.vk.se/2024-03-17/brottsmisstanke-aklagare-utreder-regionens-me-projekt-d9ca1

Short summery by me (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
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So good to hear that they keep moving forward with this!

mango · May 17, 2024

Region Västerbotten are considering closing the ME clinic, in order to save money.

Akut läge i Västerbotten
https://mitteremitage.wordpress.com/2024/05/12/akut-lage-i-vasterbotten/

Make your voice heard and protest by sending a postcard:

Demonstrera du också!
https://mitteremitage.wordpress.com/2024/05/13/demonstrera-du-ocksa/

Det angår alla ME-sjuka, inte bara oss i Västerbotten!
https://mitteremitage.wordpress.com/2024/05/13/det-angar-alla-me-sjuka-inte-bara-oss-i-vasterbotten/

Auto-translate said:

I do not see any (public) involvement in the issue in Västerbotten from our patient organisations. It has basically been silent about the breakdown in all channels except mine. Not even media articles have been shared to any great extent.

The silence worries me. Very much so.

I hope that the rest of ME Sweden wakes up now. And start making noise / Because I actually can't drive this alone.

This affects all of us! I'm sorry to say.
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Regionen behöver prioritera ME-sjuka!
https://mitteremitage.wordpress.com/2024/05/16/regionen-behover-prioritera-me-sjuka/

Auto-translate said:

I have tried to understand the background to the ME clinic's inclusion on the list of possible cost-cutting measures, and I therefore asked the director of the clinic who made the proposal to close the clinic and how this was justified. She replied as follows [9]:

‘I have made this proposal in my capacity as Director of Operations. Reason: On behalf of the Health and Medical Care Board via the regional management, each organisation has been tasked with proposing possible changes aimed at reducing costs. The task called for all ideas, large and small, all are welcome. In the case of the proposal to rethink the ME clinic, the reasons include the difficulty of recruiting specialist doctors and the fact that other professions have also proved difficult to retain when medical expertise is lacking. Another reason is that the political decision on the ME mission may have been interpreted differently by officials, healthcare professionals, patients and relatives. The proposal has been made in dialogue with Christer Wilhelmsson, Head of Area, and no action has been taken within the Geriatric Centre.’

The head of operations' justification for closing the ME clinic is astounding!

Closing down an entire centre because of recruitment and retention problems seems to me to be a highly inappropriate action. It would be more reasonable to investigate why staff do not want to work at the ME clinic and possibly change the recruitment strategy. It is unclear to me how much effort the clinic has made to recruit staff. For example, has anything more been done than advertising via the region's website? Moreover, as far as I can see, the last advert was published a full year ago with a deadline for applications in August 2023 [10]. After this, I cannot find any further advert.

The second reason for the ME clinic to be removed is, according to the director, an unclear political mission that has given different interpretations of what the mission meant. To solve this by cancelling all care for ME sufferers is bizarre. If there are ambiguities in how a mandate should be interpreted, surely the most reasonable thing for the organisation to do is to ask the commissioner for clarification? And if the care's target group is dissatisfied with the design of the clinic, it is surely most appropriate that the region listens and takes their sympathies into account instead of removing their care? In addition, the ME clinic has itself built on the ambiguities surrounding the clinic by claiming that the assignment was only about investigation and that the responsibility for treatment lies with primary care, while at the same time applying for money for a project that was about treatment and was intended to be implemented in the ME clinic's regular work.
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mango · Jun 12, 2024

Great letter/opinion piece published in a local online newspaper today, written by @MittEremltage

Insändare: Rädda regionens ME-mottagning
https://www.lokaltidningen.nu/2024-06-12/insandare-radda-regionens-me-mottagning-909a2

Auto-translate said:

Letter to the editor: Save the region's ME clinic

Develop healthcare for people with ME instead of dismantling it, writes the signatory MittEremitage.

Quick version

Letter to the editor: Save the region's ME clinic and develop care instead of dismantling it.

Region Västerbotten started an ME clinic a few years ago. There is now a proposal to close it down.

Region Västerbotten spends a lot of money on other areas, but not on specialised care for ME.

Previous attempts to create care for ME sufferers have had problems and scandals.

The writer wants Region Västerbotten to develop care for people with ME.

Something is rotten with the region's priorities. 75 million per year will be spent on Region Västerbotten's new health information system. This year, it will cost another 55 million. The region is okay with that despite the fact that the company is not delivering as agreed and no system is in place yet.

Three million a year is the cost of the region's lobbyists in Brussels, according to SVT Nyheter Västerbotten's review. The region is okay with it despite the fact that the result cannot be measured.

1.5 million was paid to the former health care director in severance pay when she resigned. The region is okay with it even though it was not satisfied with the job she did.

The region spent SEK 6 million on renovating the maternity ward in Lycksele to attract staff as it had problems with recruitment. The region is okay with that even though it can't really afford it.

But specialised healthcare for Myalgic Encephalomyelitis (ME) for 3.8 million per year is apparently not okay for Region Västerbotten. The head of operations has put the closure of the centre on the region's list of possible cost-cutting measures, despite the fact that:

Operations have been at a standstill for 1.5 years due to difficulties in recruiting staff.

Two of its own studies show that there is a high demand for ME care in the region.

The clinic is the first and only specialised clinic for this patient group north of Stockholm.

ME is a chronic, complex, multi-system disease that is severely debilitating and has been shown in studies to have a greater impact on everyday life than, for example, MS, heart failure, acute myocardial infarction, depression and lung cancer.

It takes an average of eight years to get a diagnosis due to low levels of knowledge in healthcare, stigma surrounding the diagnosis and a lack of specialised care.

Region Västerbotten's attempts to create healthcare for ME sufferers have been marred by scandals. Let this not be another one. The ME centre must be removed from the list right now and the region needs to start developing care for people with ME instead of dismantling it!

MittEremitage
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mango · Jun 12, 2024

Another great opinion piece! Fantastic effort, @MittEremltage

Insändare: Stryk ME-mottagningen från listan på besparingar
https://www.vk.se/2024-06-12/insandare-stryk-me-mottagningen-fran-listan-pa-besparingar-b7dfd

Auto-translate said:

Letter to the editor: Remove the ME clinic from the list of savings

We need the ME clinic in Västerbotten, writes the contributor.

Region Västerbotten managed to wreck the healthcare we have been waiting for for decades. Now they want to close it down completely to save money.

At the beginning of April, Elisabeth Karlsson, Director of Health and Medical Services, was tasked with investigating a list of possible cost-cutting measures drawn up by the organisation. It includes a proposal to end specialised care for Myalgic Encephalomyelitis (ME). The same clinic has featured heavily in the media due to the revelation of various suspected irregularities shortly after the clinic opened.

One might think that the failure should make the region keen to ensure good care for ME. But instead, they seem to want to move on. Close down, sweep it under the rug and forget.

The operations manager writes in an email to me that the ME clinic ended up on the list of savings because they had difficulty recruiting staff and getting those who work there to stay. Plus, the political mission has been so difficult to interpret that it has given rise to different expectations of the centre.

But to fix this by erasing our only chance for healthcare is bizarre.

Prioritisation in healthcare should be based on three ethical principles. These are the equal value of all people, the healthcare needs of the ones who are sick, and the need for healthcare to be cost-effective. But the principle of cost-effectiveness must never trump the other two, and special consideration must be given to vulnerable groups with high needs.

In Sweden, there are more ME sufferers than people with MS and Parkinson's combined, yet the number of specialised clinics for the former can be counted on one hand. The NUS centre is the only one north of Stockholm. It takes an average of eight years to get a diagnosis, and many people become sicker while waiting because of a wrong diagnosis and subsequent wrong treatment.

The mildest ME sufferers have a 50% activity level compared to when they were healthy, and the most severely ill are bedridden and need round-the-clock nursing care. The cardinal criterion of the disease is that symptoms are exacerbated (sometimes permanently) by excessive exertion. Very few people with ME are able to work even part-time, 25% of sufferers are unable to leave their home and bed, or manage their daily lives.

Being forced to seek care on the other side of Sweden is thus highly counterproductive and a patient safety risk. Knowledge of ME and resources in primary care are basically non-existent, which means that they are often unwilling or unable to address the needs of ME sufferers for investigation and treatment.

We need the ME clinic in Västerbotten. The region must remove the clinic from the list now!

MittEremitage
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