11 February 2020
To the Ministry of Social Affairs
Government Offices
103 33 Stockholm
to Minister of State Lena Hallengren
About the care situation for ME/CFS sufferers and the National Board of Health and Welfare's report on ME/CFS
Exactly one year ago, on 11 February 2019, we sent a letter to the Ministry of Social Affairs with comments on the National Board of Health and Welfare's report on the state of knowledge of ME/CFS. We have received no response.
Unfortunately, the situation for ME/CFS sufferers has worsened over the past year. In our contacts with regional politicians, health care officials and the social insurance office, what we feared ave occurred: we refer to the conclusions of the report - that there is no consensus on diagnosis or treatment - and uses it as an excuse not to do anything to improve for ME/CFS sufferers. The situation is not fair, care is not equal and arbitrary decisions put our members in very difficult situations.
The media attention in recent weeks highlights what we in the RME already know - the situation for the seriously ill is becoming so unbearable that they are choosing to end their lives. Sometimes it is the illness itself that causes the suffering, but all too often it is society that fails. The lack of knowledge in healthcare, the patient is wrongly treated or turned away, the Social Insurance Agency does not grant sickness benefit and the patient/family is left without a livelihood. In addition: When the ME/CFS sufferer reaches the limit and seeks emergency care, it is not uncommon for the situation to worsen because the staff lacks adequate knowledge.
The most cynical situation is when the patient knows that there is specialist care available that can do investigations and assist with symptom relief in another county, while the health care system where people live refuses to to write a referral.
We therefore repeat some of the comments we made a year ago and add with updated information.
- We note that the SocS has in all important respects only listened to the views of Swedish stakeholders, many of whom have no insights into the current state of international knowledge, thus ignoring the powerful development of knowledge, particularly in the USA, but also in Norway and Australia. This is why limited understanding of ME/CFS is reported and one highlights the lack of knowledge and the lack of awareness that unfortunately prevails among many Swedish actors, especially in regional healthcare systems.
- The international state of knowledge shows today that immunological factors that disturbs the mitochondria's ability to produce energy are central mechanisms inME/CFS. This explains why, for example psychological or physical strain can lead to harmful reactions, including in the form of anaerobic metabolism with lactate formation, when the mitochondria cannot increase their energy production as a response to increased needs. These reactions are behind well-known clinical observations that how ME/CFS patients can be affected long-term by physical or mental stress which exceeds the the current ability. It has been proven that the quality of life of ME/CFS patients is the lowest compared to other studied groups, such as severe malignancy or severe cardiovascular disease. This knowledge has unfortunately not been taken into account by SocSty.
- SocS has conducted a survey among healthcare providers, including those who lack experience of ME and with such a low response rate that their results cannot be taken into account.
- SocS has not taken into account our comments concerning the actions of the Social Insurance Agency (FK) against our members. The obvious negativism, ignorance and the denial of benefits on false grounds, which our members are suffering from, is of such a nature that SocS should have marked in a much clearer manner that this is a group of patients who regularly have severe and long-term impairments in capacity to work and are therefore entitled to benefits from the Social Security system. SocS should also have more clearly noted that many of the assessment and rehabilitation measures required by the Social Insurance Agency harms our members through the pressure the Social Insurance Agency actions add.
- We have positive experiences among our members when being managed by expert healthcare providers, who take into account the nature of the illness, the individual's situation and give advice e.g. on energy use (pacing) and adequate symptomatic pharmacological intervention. It is with sadness that we note that these knowledgeable health care providers have so few resources that most of our members don't have the privilege of being treated by such a skilled person. An appropriate intervention can contribute to an improvement of our members' very low quality of life.
- The RME conducted its own member survey during December 2018-January 2019 and hereby present several examples
of health-related issues
- 629 (79%) report that they have at some point in time met physicians who interpreted the illness as psychosomatic with psychiatric etiology.
- 493 (58%) report that they have not found a physician with expertise in ME/CFS in their district/county.
- 585 (68%) report that they are somewhat or very dissatisfied with the care they received outside of ME/CFS-profiled clinics.
- 136 (17%) have contacted the Patients' Board or the Health and Social Care Inspectorate [mango: you contact them to complain or to file reports about iatrogenic harm etc] because of their experience of health and medical care.
- 256 (29%) would like to contact the Patient's Board or the Health and Social Care Inspectorate but haven't been able to do so.
We suggest the Department to:
- influence regional healthcare systems to set up specialist clinics that meet our members' needs, as soon as possible
- general training activities are initiated on the basis of current international knowledge
- contribute to prioritising state medical research funds fo rME/CFS research in Sweden. Prioritisation of this type exists, for example, in Norway and the USA.
- contribute to the Social Insurance Agency handling applications for benefits from our members in such a way that it corresponds to both the current state of knowledge and individual member-specific situation. Obviously harmful and pointless rehabilitation attempts and investigations must cease, as they harm our members, with, among other things, a reduction in the level of function as a consequence.
In a letter to the Danish Minister of Health in October 2019, 99 internationally recognised scientists and clinicians concludes the following:
"ME is a complex and physical disease for which there is currently no cure. It is not a psychological or psychosomatic disease. There is strong scientific evidence of neurological/autonomic dysfunction, immunologic and inflammatory pathologies, microbiome perturbation, metabolic/mitochondrial as well as cardiac abnormalities (and more) in patients.
Based on this scientific evidence, there is an imminent need to change the narrative of ME to avoid that patients are misdiagnosed or further stigmatized by falsely equating the disease with (chronic or unexplained) fatigue, deconditioning or psychosomatic classifications, like functional disorders, medically unexplained symptoms, somatoform disorders, somatic
symptom disorder, functional somatic syndrome, neurasthenia, or bodily distress disorder/syndrome."
