Sweden: termination of the contract for specialist medical care for ME in Stockholm, including the Bragée ME Center, 2023

Saw the FB-link with their statement regarding B12 in another thread. Strange that they won’t link to the cancer risk reports they refer to when people ask for it in the comments… Do you know what type and what dosage B12 they used? @mango

 

I have no personal experience, but based on the info people share on social media it's mecobalamin (methylcobalamin). Dosage is rarely mentioned and varies from person to person, but usually seems to be 10 mg (2 ml), injected 1-2 times a week. Many of them supplement folacin (folic acid) too, pills.

Many report that they are experiencing significant symptom relief (less brain fog and fatigue, shorter and milder PEM, better sleep etc), the kind that makes a big and real difference in their everyday life. Some have been using b12 for 10+ years, without it losing its effectiveness.

It's really strange that Bragée is withholding that info, right? A few days ago I had a look at many of the b12 related articles that have been added to PubMed in the last 12 months, but (looking at abstracts only) I wasn't able to find anything that came to significantly different conclusions than earlier studies/reviews.

The withholding of info is a bit of a pattern actually. It's not the first time Bragée refuses to share the evidence, data or references they are basing major decisions and statements on, which to me has always been a big red flag

ETA: Some/many have tried behepan too, but it doesn't seem to be effective.

 

Thank you very much, @mango ! Really appreciate it. Seems to be similar to the B12 dosage/frequency many have used before them. De Meirleir was one, but he used a Hydroxocobalamine from a local Belgian brand (Sterop).

 

Me-Center stänger i december 2023
https://www.bragee.se/me-center-stanger-i-december-2023

Google Translate, English ("Me-Center closes in December 2023")

 

In the post linked above, Bragée explains why they are closing ME-center early:

"compensation levels have been reduced as of February this year, in a way that makes it impossible to continue for the rest of the year."

However, according to recent correspondence ("allmän handling"/a public document) written by the political secretary of the Social Democratic Party in Region Stockholm, the compensation levels are unchanged:

Would you care to comment, @Bjorn Bragee?

 

ME-läkaren rasar mot slopad privatvård – slår mot de sjuka
https://sverigesradio.se/artikel/me-lakaren-rasar-mot-slopad-privatvard-slar-mot-de-sjuka

The region = the local government responsible for healthcare etc.

 

Marita är sängliggande 20 timmar per dag – nu ändras vården
https://sverigesradio.se/artikel/privat-me-vard-slopas-kroniskt-trotta-marita-oroad

 

Hälso- och sjukvårdsförvaltningen svarar på kritiken från Riksförbundet för ME-patienter
https://www.tv4.se/artikel/6pFZJKL3...ningen-svarar-pa-kritiken-fran-riksfoerbundet

 

Would it be possible to give a a short english summary or a link to an english version?

 

Auto-translate, unedited:

"Health administration responds to criticism from the National Association of ME Patients

Here is the health care administration's response to the criticism from the National Association for ME Patients.

The answers are coordinated with Åsa Sandgren Åkerman, head of the Rehabilitation, Habilitation, Insurance Medicine and Assistive Technology unit.

As regards the question ‘That the change should have taken place in connection with a change of majority and that they then chose to take over the care under their own auspices, which according to the association led to cutbacks’, the administration refrains from answering it as that question should be put to the politicians.

Access to coherent specialised care for ME patients has deteriorated in Region Stockholm

One of the reasons for cancelling the additional assignment was to offer safer access to care for the patient group. A care choice system with only one care provider is very vulnerable as the care provider can terminate the contract at any time with six months' notice. Taking care in-house ensured access to care for the patient group. By moving the care to the country's largest hospital, the conditions for conducting research and increasing knowledge about the diagnosis are improved.

A further reason for discontinuing the additional task was to place the diagnosis in a wider context and make available the resources available in hospitals, such as systematic follow-up and evaluation. With greater access to multiple specialities, there are more opportunities to manage patients based on symptoms rather than diagnosis.



A post-infectious disease clinic has been established at Karolinska Hospital, which has been tasked with ME/CFS at a specialised level. The healthcare administration is working on a budget assignment that aims to further strengthen the post-infectious clinic in the consultative assignment. Since September 2024, the clinic has been fully operational.



Home care for seriously ill patients used to work, but is no longer offered in the same way.



Patients in need of home care are offered home care but it is not a diagnosis-specific order. Home care is offered in primary care, for example through the primary care clinic and primary care rehabilitation options. At the specialised level, there are, for example, care options for advanced care at home. Patients with ME/CFS can be treated within these care options in the same way as patients with other diagnoses based on a needs assessment. Within the additional assignment, it was possible to offer home visits as part of the assignment, but it was not required that care at home should take place.



That the closure of specialist clinics has led to an increased number of complaints to the Patient Complaints Board.



It is true that the patient board

It is true that in 2024, the Patient's Board received more complaints regarding care for patients with ME/CFS. The increased number of complaints led the Patients' Committee to submit a case in principle to the Health Board. The Patient Complaints Board has accepted the answers given by the Health Care Board to the case in principle.



That primary care does not have the conditions to receive this patient group, who would instead need to meet doctors with special expertise in ME.



In accordance with the National Board of Health and Welfare's knowledge support for post-covid and other related syndromes, primary care is the level of care that mainly cares for the patient group. There is no evidence for any individual treatment for ME/CFS, but primary care has experience and broad knowledge of caring for patients based on symptoms. In order to strengthen primary care's ability to care for this patient group, the post-infectious disease clinic at Karolinska Hospital has a strengthened consultation programme. Through enhanced consultations, the knowledge of specialised care can be disseminated in primary care and reduce travel and provide increased continuity for the patient. Primary care can offer the continuity that is deemed important for patients. Work is underway to follow up on the consultancy activities.

In order to further strengthen the ability of primary care to care for patients with ME/CFS, the Academic Primary Care Centre (APC) has been given a training assignment and will offer training aimed at primary care in 2025 and 2026. The training will reach both doctors at primary care clinics and rehabilitation professions such as occupational therapists and physiotherapists available within the primary care rehabilitation and specialised physiotherapy care options and is planned to start in autumn 2025."

 

So the care for ME patients in Sweden has been reduced, if I understand correctly?

And upon criticism of the Swedish patient organisation, the Health Authority says that services will be available through primary care?

Seems like a huge deterioration of services.