Desirée Pethrus
So grateful for the invitation to the Social Affairs Committee hearing on ME/CFS today.
As a representative of the regional level, I appreciate that the issue of ME/CFS was highlighted today and that it is also being discussed at the national level.
As you know, I chair the Health Care Knowledge Management Board in the region - which is responsible, among other things, for developing knowledge support in health care. Something that is important for us to be able to work to improve and develop healthcare. And this also applies, of course, to the care of this patient group. Since I took office, I have been in contact with associations for families, relatives and close friends of ME sufferers, at both regional and national level, as well as with Björn Bragée and his colleagues at the Bragée Clinic.
Many sufferers, as well as their relatives, are suffering severely today. Sweden needs to make great strides in treatment and research into the disease. As we have heard today, many ME/CFS sufferers testify that they feel that life is going on out there, but that they themselves are cut off from what is happening there and cannot participate in it either.
Pain patients often find it difficult to access care. You can't see the pain on an X-ray or through a blood test. As we have heard here today, many ME sufferers testify to the difficulties they have faced on the way to being diagnosed.
In the Stockholm region, patients with mild ME/CFS are seen in primary care. It is important that primary care services have adequate knowledge of ME/CFS. Primary care services must be able to provide good care for this group of patients.
In the Stockholm region, the Academic Primary Care Centre conducts research, development and education in primary care. On Friday, for example, a training course on ME/CFS is being held on the challenges and opportunities in primary care. The target group is all professionals in primary care.
Patients who need specialist help are then referred from primary care to a specialist clinic. The Academic Primary Care Centre helps to facilitate the division of responsibilities between primary care and specialist clinics.
The supplementary agreement for ME/CFS specialist care in the Stockholm Region started in 2015. The agreement is linked to two care options which are "specialised rehabilitation for long-term pain and fatigue syndrome" and to "planned specialised neurological rehabilitation".
Patients of all ages with moderate to severe ME/CFS can be referred to the specialist clinics. The Canada criteria are used for diagnosis. In the Stockholm region, we have had two care providers, Bragée Rehab and the Stora Sköndal Foundation. However, Stora Sköndal's ME/CFS clinic has chosen to close now on 31 May due to difficulties in recruiting specialists.
Last year, 2,234 patients were admitted to our specialist clinics. The cost to the region in 2020 was SEK 31 million.
Approximately 25-30% of patients are out-of-county patients.
We admit a small number of children and adolescents - we see that children and adolescents require a high level of expertise with specialists in child psychology and child neurology. Bragée Rehab is responsible for most of the care and has increased its patient numbers in connection with the closure of Stora Sköndal's clinic.
The National Board of Health and Welfare has assessed that it is not currently possible to produce national knowledge support with general advice for ME/CFS - as requested by the health care sector. As you probably know, the national knowledge management structure consists of 26 national programme areas that lead knowledge management in their respective areas.
The National Board of Health cannot provide national knowledge support because of a lack of knowledge:
- what causes ME/CFS
- which organ(s) is/are mainly affected
- bio-markers, i.e. a biological marker with a measurable indicator of a biological condition.
- treatment methods
Therefore, it is also not clear which national programme area within the knowledge governance structure should be responsible for ME/CFS issues. The issue is under consideration, but at present ME/CFS does not have a definite home within the knowledge governance structure.
It is therefore important to continue research on the diagnosis in order to obtain more evidence for the diagnosis itself and to be able to implement appropriate treatment methods.
And there is a great deal of research being done on ME/CFS, often through various collaborations - both national and international. It is gratifying that there are ongoing studies at the KI, in Uppsala and in Linköping in the field of ME.
In addition, work is ongoing at the Bragée Clinic and Karolinska Institutet in the context of doctoral theses.
We hope that this will enable us to help this patient group better in the future.
Many argue that there is a risk that post covid patients will develop ME/CFS. Some argue that such trends can already be seen. In the Stockholm Region, post covid patients are currently rehabilitated under other agreements. There is currently no evidence that post covid patients will develop ME/CFS, however, a prolonged period of post-viral fatigue is common. Research on how post covid may progress to ME/CFS is needed. And Karolinska Institutet is participating in a study on the link between Covid-19 and ME.
The inequality in ME care in Sweden is worrying. This care is needed in more regions. We in the Stockholm region are the only region with a specialist clinic for ME/CFS patients. We receive many patients from other regions. Many people with ME are so ill that they are unable to travel to get help. Many live with great difficulty in their daily lives and a large proportion are confined to their homes and are often bedridden. A great suffering. For me, it is obvious that the Stockholm Region should continue to be at the forefront, in terms of treatment but also in terms of research to strengthen the situation for this vulnerable patient group. But even more research and more people working with this patient group are needed.
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