Care for people with ME/CFS - Swedish parliament/Sveriges Riksdag 26.05.2021

mango · May 23, 2021

A member of the Swedish Riksdag ("the Parliament") has asked the Minister for Health and Social Affairs a formal question about ME/CFS. The question will be answered in writing.

Vård för personer med ME/CFS
https://www.riksdagen.se/sv/dokumen...ig-fraga/vard-for-personer-med-mecfs_H8112914

Auto-translate said:

Ulrika Heindorff (M) to Minister for Social Affairs Lena Hallengren (S)

Care for people with ME/CFS

ME/CFS is classified as a neurological disease by the World Health Organisation (WHO). This disease was previously called chronic fatigue syndrome and is characterised by prolonged fatigue with severe functional impairments.

The cause of ME/CFS is not fully understood, but many people have an infection at the onset of the disease from which they never recover. The disease is characterised by unexplained fatigue/exhaustion that lasts for more than six months. The exhaustion cannot be rested away and there is also deterioration after exertion which can last for days, weeks and even months. ME/CFS affects activity levels and functional capacity, and patients often experience partial or complete impairment in their ability to work, which also corresponds to the severity of the disease.

Several treatable diseases can cause similar symptoms and it is therefore important to get a proper diagnosis so that these can be ruled out.

The situation for ME/CFS patients is tough. Around 25% of ME sufferers are classified as severely or very severely ill. Being severely ill means having great difficulty leaving home or even leaving bed and, in the worst cases, requiring help with the most basic functions such as nutrition and personal hygiene. This is a level that can last from a few weeks up to months or years.

Symptoms can vary over time. Some people find that the disease goes into remission while others may notice a steady deterioration. In some cases, where the right help has been found and put in place, a slow stabilisation may also be noticed.

As yet, there is no cure for ME/CFS. However, with the right help and support from the various health services, symptom-relieving treatments can be found to make life a little easier. However, the availability of help varies greatly from region to region.

RME - the National Association of ME Patients, sent a letter to the Ministry of Social Affairs on 11 February 2019. They state that they never received a reply and sent a new letter to the Ministry of Social Affairs and members of the Social Affairs Committee a year later, on 11 February 2020. More than two years after the first letter, a public hearing has now been scheduled for the end of May this year, but apart from the general assignment to the National Board of Health and Welfare on "Better dialogue between the Social Insurance Agency and the health care system", no other initiatives have been taken by the government to strengthen ME/CFS care in Sweden.

RME has a number of suggestions for what should be done and writes the following:

"We therefore propose to the Ministry that

- urgently influence county councils and regions to establish specialist services that meet the needs of our members.

- general educational efforts are initiated on the basis of current international knowledge

- help to ensure that government medical research funds are prioritised for ME/CFS research in Sweden. Priorities of this type exist, for example, in Norway and the USA.

- help ensure that Försäkringskassan [the Swedish Social Insurance Agency] handles applications from our members for social security benefits in a way that corresponds to both the current state of knowledge and the specific situation of individual members. Obviously harmful and pointless rehabilitation attempts and investigations must be stopped, as they harm our members with, among other things, a reduced level of functioning as a result."

In view of the above, I would like to ask Minister for Social Affairs Lena Hallengren:

Does the Minister intend to take any initiatives in line with the proposals that RME has notified to the Ministry of Social Affairs that the Minister of Social Affairs subsequently intends to take forward?

Translated with www.DeepL.com/Translator (free version)
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mango · May 27, 2021

mango said: ↑

A member of the Swedish Riksdag ("the Parliament") has asked the Minister for Health and Social Affairs a formal question about ME/CFS. The question will be answered in writing.

Vård för personer med ME/CFS
https://www.riksdagen.se/sv/dokumen...ig-fraga/vard-for-personer-med-mecfs_H8112914
Click to expand...

The minister's reply has now been published:

Auto-translate said:

S2021/04441 Ministry of Social Affairs Minister of Social Affairs To the Riksdag

Answer to question 2020/21:2914 by Ulrika Heindorff (M)

Care for people with ME/CFS

Ulrika Heindorff has asked me whether I intend to take any initiatives in line with the proposals that the RME has submitted to the Ministry of Social Affairs, which I subsequently intend to take forward.

All patients have the right to good care and treatment. It is the regional healthcare systems that organise and finance health care and the government has no influence on the establishment of specialist clinics.

The National Board of Health and Welfare and the Swedish Advisory Council on Medical and Social Evaluation have been commissioned to review the state of knowledge and assess the conditions for supporting healthcare with knowledge support and support for sick leave for ME/CFS, the report was published in December 2018. The agencies' report shows that more knowledge and a greater consensus on the disease ME/CFS is needed before the conditions are in place for developing knowledge support in the area.

The government supports research in the health sector, mainly through the ALF agreement. It is up to the research profession to decide what these funds are spent on. The government protects the independence of research.

At the end of 2019, the Government commissioned the National Board of Health and Welfare and Försäkringskassan to further develop health insurance administration in dialogue with the health care sector. In the spring of 2021, the government added to the existing mandate to ensure that the measures are implemented in the processing to increase security for patients with, for example, ME/CFS.

From 15 March 2021, new rules will also apply to health insurance. The assessment of the insured person's ability to work against normal work, which must take place after day 180 of the sickness claim, can be postponed if there are predominant reasons to believe that the insured person will return to work with the employer by day 365. The person on sick leave will thus be better placed to undergo treatment and rehabilitation in time to return to work. Unlike the previous rules, the new proof requirement applies to all diagnoses, including symptom-based diagnoses where it may be difficult to predict a prognosis, such as ME/CFS.

Furthermore, the government is strengthening primary care through the initiated primary care reform and supports the use of patient contracts that can act as a coherent care plan for patients with extensive and complex care needs. These are two important measures to improve care for people with long-term conditions.

Stockholm, 26 May 2021

Lena Hallengren

https://www.riksdagen.se/sv/dokumen...ig-fraga/vard-for-personer-med-mecfs_H8112914

Translated with www.DeepL.com/Translator (free version)
Click to expand...

rvallee · May 27, 2021

So that's a no, then. Could have just said no.

mango · May 29, 2021

mango said: ↑

The minister's reply has now been published:
Click to expand...

The chairperson of RME has published a comment on their Facebook page:

Auto-translate said:

Lena Hallengren has now submitted an answer to Ulrika Heindorff's written question. [...]

RME chairperson Kerstin Heiling comments:

"Unfortunately, the Minister of Social Affairs' answer to Ulrika Heindorff's question does not give much hope that the government will take any initiatives to improve the situation for ME sufferers.

She refers to the National Board of Health and Welfare's 2018 report, which concludes that it cannot make any recommendations because there is so much disagreement within the healthcare sector.

The RME has severely criticised the report, which has not taken into account international research and is being used by the [regional healthcare systems] as an excuse for doing nothing to create equal care for ME sufferers.

The Minister's hope that changes in health insurance rules and the initiated primary care reform will bring about an improvement has rather weak support as long as the level of knowledge in the different agencies is poor.
She says, correctly, that "It is the regions that organise and finance health care and the government has no influence on the establishment of specialist clinics."

Some sort of expression of will would still have been welcome."

Translated with www.DeepL.com/Translator (free version)
Click to expand...

ETA: The MP and the minister are referring to letters and proposals submitted by RME to the Ministry of Social Affairs. RME are still keeping those letters secret, and do not intend to share them with their members or the public.

I'm not sure if the letters would be available to request from the Government or the Riksdag through the principle of public access to official documents, maybe? I'd like to look into that, if I find some spare energy someday.

mango · May 31, 2021

mango said: ↑

A member of the Swedish Riksdag ("the Parliament") has asked the Minister for Health and Social Affairs a formal question about ME/CFS. The question will be answered in writing.

Vård för personer med ME/CFS
https://www.riksdagen.se/sv/dokumen...ig-fraga/vard-for-personer-med-mecfs_H8112914
Click to expand...

mango said: ↑

The minister's reply has now been published:
Click to expand...

mango said: ↑

The chairperson of RME has published a comment on their Facebook page:

ETA: The MP and the minister are referring to letters and proposals submitted by RME to the Ministry of Social Affairs. RME are still keeping those letters secret, and do not intend to share them with their members or the public.

I'm not sure if the letters would be available to request from the Government or the Riksdag through the principle of public access to official documents, maybe?
Click to expand...

RME's letters and the reply from the Ministry of Health and Social Affairs were indeed available to request from the Government Offices

Someone already asked for copies, and shared them with me. The files are slightly too large to upload here. I'm not sure what is most useful for you guys, so I'll give you auto-translated versions of the content here. If anyone would like a copy of the original in Swedish, just let me know.

Auto-translate said:

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."
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Auto-translate said:

20 August 2020

Hi,

Thank you for your letter to Minister of Social Affairs Lena Hallengren. I have been asked to reply. I regret that it has taken us a long time to reply, which is due to the fact that we have received so many letters during the corona pandemic, to reply to.

The National Board of Health and Welfare's report should not and must not be used as a pretext for not offering ME/CFS patients care and treatment. The report highlights that it is essential that the interventions for each patient diagnosed with ME/CFS or a similar symptom pattern are individualised and evaluated.

This group of patients is in need of care for symptom relief and improved quality of life. For the individual patient different evidence-based interventions can be provided based on each individual's symptom picture, e.g. for pain or sleep problems. The provider needs to be sensitive and take into account the patient's whole clinical picture and care needs.

In your letter, you write about the lack of knowledge in healthcare. Employers have a responsibility to check that health professionals have the right knowledge and skills. The government-initiated Council for knowledge governance has entered into a partnership with the regions' National system for knowledge governance. The partnership creates the conditions for the best available knowledge to be is used and benefits healthcare professionals and patients. Please contact National Programme Area (NPO) for Nervous System Diseases to find out if they are working with the issue.

In your letter, you give an example of when healthcare services do not refer patients to specialist care in another county. In the Patients' Act are rules that say, among other things, that a patient who falls within a region's responsibility for health and health care, within or outside that county, shall be given the opportunity to choose the provider of publicly funded outpatient care. The Act does not cover inpatient care. This means that the patient has the right to receive outpatient care in whichever region they wish. It is also possible to receive inpatient care in a region other than one's home region. Then the following applies: according to SKL's Recommendation on choice in health care and SKL's National Agreement for Out-of-County Care, patients must be offered the choice of inpatient treatment at hospitals in other county councils. The possibility of out-of-county care only applies if the home county council has given prior approval of the patient's needs by referral. The cost of care is borne by the home county council and the patient pays for the journey.

You also state that you propose that the Ministry urgently influence county councils and regions to establish specialist services that meet the needs of your members. It is the regions that are are the main providers of health care. The government cannot influence the regions on this issue. You also want to the Ministry to make the Social Insurance Agency process applications from your members in such a way that it corresponds to both the current state of knowledge and the specific situation of individual members. In its assessments, the Social Insurance Agency must base them on current and established knowledge in the medical field, such as the National Board of Health and Welfare's medical decision support system. How the Social Insurance Agency assesses entitlement to benefits in individual cases is a matter that the government must not interfere with or influence. It is up to the regions to decide which medical rehabilitation is adequate in the individual case and to implement the rehabilitation measure. The Social Insurance Agency's responsibility is limited to assessing the need for and coordinate the rehabilitation.

The government presents a research policy proposal every term, setting out the direction and funding for the next four-year period. Work is now underway within the Government Office on the next proposal which is scheduled for autumn 2020. In preparation for this work, various stakeholders were invited last year to to submit their views on research policy, with a total of almost 300 submissions. More on the research policy bill can be read on the government's websitehttps://www.regeringen.se/regeringens-politik/Den-forskningspolitiska-propositionen-2020/ Next time the government will receive input for the research bill is 2023.

Minister of Social Affairs Lena Hallengren and the other government ministers value the opportunity to receive comments, opinions and experiences from citizens and professionals. It helps the government to shape its future policy in this area. On behalf of the Minister, I would therefore like to thank you once again for for taking the time to write.

Yours sincerely
Eleonor Johansson
Correspondence Officer
Ministry of Social Affairs
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mango · Jun 1, 2021

RME's letter to the Ministry of Social Affairs 13 February 2019, with comments on the National Board of Health and Welfare's report on ME/CFS that was published in December 2018. (Large parts of the letter are identical to the letter they sent in February 2020.)

Auto-translate said:

13 February 2019

To the Ministry of Social Affairs
Government Offices
103 33 Stockholm

To Minister Annika Strandhäll

About the National Board of Health and Welfare's report on ME/CFS.

During the course of the investigation, RME met with representatives of the National Board of Health and Welfare (SocS) and presented our views. However, we got to see the final report on the same day as it would be handed over to the Ministry of Social Affairs, which meant that we could not leave important views on the National Board of Health and Welfare's investigation and recommendations and that our knowledge and experience have thus not been sufficiently taken into account in the report.

We therefore choose to submit our views this time directly to the Ministry of Social Affairs.

First, we would like to remind you that we appreciate that the Ministry, above all, through Minister Strandhäll has become involved in the issue of the ME patients' situation in Sweden. It is gratifying that the commitment has created the conditions for at least mapping the current situation regarding care for the disease ME, but also the situation of the sick.

However, there is reason for complementary views on a number of points as we here
present.

- We note that SocS has essentially only listened to Swedish actors, including many of whom have no up-to-date knowledge of the current state of international knowledge and thus did not take into account the strong development of knowledge that is taking place particularly in the USA, but also in Norway and Australia. As a result, a too limited understanding of ME/CFS is reported and highlights the lack of knowledge and the disagreement that unfortunately characterises many Swedish actors, particularly within the county councils.

- The international evidence today shows that immunological factors that interfere with mitochondria's ability to produce energy are central mechanisms in ME/CFS. This explains why, for example, psychological or physical strain gives rise to harmful reactions in the form of anaerobic metabolism with lactate formation, when mitochondria are unable to increase their aerobic energy production in response to increasing needs. These reactions underlie well-known clinical observations that the ME/CFS patients can be harmed long-termby physical or psychological stress that exceeds the current capacity. There is now evidence that quality of life among ME/CFS patients is the lowest compared to other studied groups, such as severe malignancy or severe cardiovascular disease. Unfortunately, this knowledge has not been taken into account by SocS.

- 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.

- The SocS report is therefore characterised by unnecessary vagueness, uncertainty and nihilism as regards interventions, with obvious risks that the FK and the courts will find arguments that the disease is unclear, you can't know it exists, it has unclear effects on the ability to work. We even have experience of the FK claiming that the disease does not exist because there are no 'objective' findings such as plaster casts in the case of broken bones. SocS wording can apparently give these actors arguments to prevent our members from receiving the benefits they are entitled to. SocS's vague texts may also give arguments to these actors to disregard relevant and well-founded medical certificates and thereby disadvantaging our members.

- 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.

- SocS writes that sick leave can be a treatment for ME/CFS. This is completely out of the blue as there is no evidence whatsoever that it is a treatment or rehabilitative measure in ME/CFS. These benefits should be paid to our members because of the impairment in functioning and impairment in working capacity caused by ME/CFS. The SocS wording sends completely the wrong message that these measures are rehabilitative and can therefore be withdrawn unless the sick leave causes improvement.

- The RME conducted its own member survey during December 2018-January 2019 and hereby present a selection of important replies:

The response rate was 55%. The survey was sent to all RME members in December 2018, which means that relatives and others who are not ill themselves also received email or letter. It is likely that the non-response is largely made up of ME/CFS sufferers who are so unwell that they could not answer the survey. The results reported here can therefore be considered as an underestimate of the degree of disability among our members.

920 members with illness responded to the questionnaire as a whole and 885 responded to the part on disability and health-related issues.

844 (95%) have very limited ability to perform strenuous activities such as lifting heavy objects or participating in strenuous sports.

612 (69%) have very limited ability to cope with moderate exertion such as vacuuming.

233 (26%) have very limited ability to cope with mildly strenuous activities such as e.g. getting dressed, climbing stairs

864 (98%) report that their current health condition limits their social activities

198 (22%) have virtually no social interaction

Some examples of care-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.

The survey clearly shows that ME is a severely disabling condition that also has a significant negative impact on social interaction. In addition it is clear that our members encounter ignorant doctors far too often, and that dissatisfaction with the medical care provided is widespread. These figures demand serious consideration, and are fully in line with international studies that show the severely debilitating effect on quality of life that ME/CFS has.

SocS should have been much clearer in highlighting the following points:

ME/CFS is a disease with an organic aetiology, which is chronic and causes permanent functional and occupational impairment. Unlike most other diseases, functional capacity is impaired by stressful rehabilitation measures. The actors, sometimes very loud, who claim that ME/CFS has psychiatric or functional aetiology lack sufficient and up-to-date knowledge of the disease aetiology and pathophysiology.

Burdensome measures, such as investigations and conventional rehabilitation or changes of job, result in a deterioration of functional capacity, usually over a long should therefore not be implemented.

SocS should have made it clear to the FK and others that ME/CFS involves long-term that rehabilitation measures can be harmful to those with ME/CFS.

Through shortcomings in its investigation technique, SocS has given too limited a picture of the state of knowledge in ME/CFS. However, we would like to emphasise that we share SocS's pessimistic view of how health care for our members works in Sweden today. Too many people do not receive a reliable diagnosis in time, are met with lack of understanding and sometimes outright abusive attitudes, and the lack of resources is obvious.

The severe disabilities suffered by our sick members should have been described much more clearly in the report.

We therefore propose to the Department that they

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.

Click to expand...

mango · Jun 1, 2021

For reference, here are links to the National Board of Health and Welfare's report on ME/CFS (published December 2018) and the systematic evidence review by SBU (Dec 2018):

Socialstyrelsen: Översyn av kunskapsläget för ME/CFS (2018)
https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/ovrigt/2018-12-48.pdf

Myalgisk encefalomyelit och kroniskt trötthetssyndrom (ME/CFS): En systematisk översikt (2018)
https://www.sbu.se/sv/publikationer...lomyelit-och-kroniskt-trotthetssyndrom-mecfs/

A summary of SBU's evidence review, written by the National Board of Health and Welfare (2018):
https://www.socialstyrelsen.se/om-socialstyrelsen/pressrum/press/mer-forskning-behovs-om-mecfs/

Forum thread on the SBU evidence review:
https://www.s4me.info/threads/swedi...f-social-services-sbu-with-report-on-me.7277/

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Care for people with ME/CFS - Swedish parliament/Sveriges Riksdag 26.05.2021

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Care for people with ME/CFS - Swedish parliament/Sveriges Riksdag 26.05.2021

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