News from Scandinavia

Sean · May 4, 2024

But now a new specialised clinic will open to receive patients who need a diagnosis and rehabilitation.

Meet the new clinic. Same as the old clinic.

mango · May 15, 2024

LO-TCO Rättskydd AB: Kammarrätten gav person med ME/CFS (kroniskt trötthetstillstånd) rätt till sjukpenning
https://www.fackjuridik.se/kammarra...skt-trotthetstillstand-ratt-till-sjukpenning/

Auto-translate said:

The Administrative Court of Appeal granted a person with ME/CFS (chronic fatigue syndrome) the right to sickness benefit

Insurance law
Published 14 May, 2024

ME/CFS is a diagnosis that leads to problems with significant fatigue and other problems that cannot be objectively measured. The doctor must therefore assess the need for sick leave primarily on the basis of the information provided by the patient.

In this case, a member of the Association of Church Academics had been denied sickness benefit by the Social Insurance Agency on the grounds that there were no objective examination findings and observations. The Administrative Court upheld the Social Insurance Agency's decision, but the Administrative Court of Appeal has now changed the lower courts' decision in the member's favour and refers to relatively new case law from the Supreme Administrative Court, which means that objective findings cannot be required when assessing entitlement to sickness benefit for illnesses based on symptoms or various criteria.

In the case, there was a description of the complaints from the woman and her partner that was consistent with what the doctor had been able to observe during the visit. The Administrative Court of Appeal also attached importance to an assessment by an occupational therapist that took place after the period of sick leave in question, as it concerned the same course of illness and similar complaints.
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Sean · May 16, 2024

ME/CFS is a diagnosis that leads to problems with significant fatigue and other problems that cannot be objectively measured.

That is just not true. We can measure stuff like physical capacity (particularly PEM related, including stamina, e.g. CPET), employment and welfare levels, etc.

If they had said that there is no specific objective diagnostic test, that would be on safer ground.

mango · May 17, 2024

Krönika av Agnes Arpi: ME-patienter ses som bråkstakar med hjärnspöken
https://www.altinget.se/artikel/me-patienter-ses-som-braakstakar-med-hjarnspoken

Auto-translated said:

Opinion piece by Agnes Arpi: ME patients seen as troublemakers with head gremlins

Some groups of patients are more susceptible to negligence, poor care and unethical treatment than others, and ME patients are one such group.

International ME Day is held on 12 May each year to draw attention to the often very debilitating disease ME and the lack of care, research, knowledge and cure. Awareness of the disease has increased over the last decade, partly due to the surge of interest from journalists, but the wheels of society grind slowly.

Medical consensus is lacking

There are few clinics, the diagnosis can be stigmatising in contacts with authorities, and there is no medical consensus on how to care for patients. Patients feel forgotten and invisible. They are largely at the mercy of a geographical lottery.

‘ME patients’ hopes turned to ashes’ I wrote about Region Västerbotten's ME clinic in September 2022, apropos of the breakdown of questionable treatment methods, conflict of interest and lack of ethical review authorisation that surrounded the care to which the region's ME patients were referred. Önep, the Ethical Review Board of Appeal, reported the region in autumn 2023 and prosecutor Andreas Nyberg in Umeå chose to take up the case, as he saw reasonable grounds to assume that a crime had been committed. He has not yet decided whether to prosecute.

Criminal suspicions of this kind are unusual - the prosecutor notes only one other case. Now, I do not believe in a magic coincidence. On the contrary, I argue, some groups of patients are more easily exposed to negligence, poor care and unethical treatment than others, and ME patients are one such group. Therefore, after years of being promised care in Västerbotten, they are now being forced to see it all become a thumbs-down and ultimately nothing but a budget regulator.

In April, the region's health director, Elisabeth Karlsson, proposed that the ME clinic, which had barely started, be closed for reasons of cost-cutting. The case of Region Västerbotten is a bad one, but the rare specialised care offered to the patient group is constantly characterised by such instability. Clinics in both the public and private sectors come and go, and the need for care remains.

Visions come to nothing

Disappointing reports from Stockholm describe how care has changed since the specialised, privately run clinics that previously existed closed down their ME activities, a responsibility that was taken over, at least in theory, by the region's clinic for post-infectious diseases and primary care. One person writes: ‘The dissatisfaction among patients is total and many have been completely abandoned by the healthcare system. GPs have no knowledge, experience or guidelines to treat patients.’

The patient organisation describes how the visions painted when the region took over the care system have now come to nothing. Of course, there are also, at least in places, ambitions to make sense of the chaos.

In 2022, the Southern Regional Care Board decided to recommend that the regions set up a clinic for long-term post-infectious symptoms in adults, including ME. But in 2024, Region Skåne is still discussing where such a centre could be located.

The latest initiative is in the Västra Götaland region, which has just started its own ME clinic at Sahlgrenska, after referring patients to various private providers over the years. This seems to be a good thing, but here too there are questions about the management of the most seriously ill, i.e. those who cannot get to the hospital. Similarly, a prerequisite for becoming a patient is to have a functioning primary care contact who has carried out a thorough basic examination, and it is often on these points that things fail.

A loaded diagnosis

The ME diagnosis is still loaded and optional for doctors to believe in at all, and it is not certain that the examinations required by specialised primary care are actually carried out. So the severely ill risk being screened out of the looming new clinic, simply because they are seen as troublemakers with head gremlins.

This should be seen in the light of the fact that it takes an average of 8.5 years from onset to diagnosis in Sweden, according to a survey by the European ME Alliance. The survey was completed by 11,000 Europeans. The European average is 6.8 years.

This is a snapshot of the month of May and many previous Mays. Big disappointments and crumbs of hope.
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rvallee · May 17, 2024

Medical consensus is lacking
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To hell with consensus. We'll never have agreement with the people who want the magical pseudoscience, our goals are mutually exclusive in every possible way, they will be furious and excluded once a breakthrough occurs and it's the last thing they want. We need science and facts, and a move away from having people who are guided by their beliefs, which happen to be about negating our lived experience, to a system that respects patients' lived experience as genuine and factual enough to work with as a foundation.

There is no consensus to be had here any more than it's possible to have consensus on AIDS before the research started, trying to bridge reality with what HIV deniers and the people who mocked it as the "gay plague" wanted. Science isn't about pleasing people, it's about finding out what's true, and the psychosomatic ideology having had a complete stranglehold for decades simply deserves no place at the table, they contribute nothing.

In geopolitics, you don't have a choice to negotiate with tyrants and terrorists. We don't have to entertain people's delusions, even when their own delusional beliefs are about us having delusional beliefs. This is supposed to be about science, this is not how this works!

mango · May 17, 2024

Kalmarposten: Rebecca lever med ME -- Kämpar för att sjukdomen ska bli mer erkänd
https://kalmarposten.prenly.com/p/kalmarposten/kalmarposten-vecka-20/r/9/16-17/841/1465393

"Rebecca is living with ME -- Fighting for more recognition of the disease"

mango · May 19, 2024

Opinion piece by a political party in a local paper.

Nerikes Allehanda: Ändlös resa i trötthet som inte leder till rätt vård
https://www.na.se/artikel/andlos-resa-i-trotthet-som-inte-leder-till-ratt-vard/

Auto-translate said:

Endless journey in fatigue that does not lead to the right care

This is an opinion piece; the writers are responsible for the opinions expressed.

ME is a disease that completely plunges women, men and children into an endless journey of fatigue and various symptoms that make life shrink.  According to the Swedish Brain Foundation, around 40,000 Swedes are currently living with ME/CFS. It affects people of all ages, but is more common in women aged 20-40.

The Left Party has put forward proposals both in the Örebro region and in the Riksdag that could make healthcare more ME-friendly, such as setting up knowledge centres to help people with ME/CFS.

‘We know today that there is a lack of expertise about this disease and that it affects this patient group very seriously, so seriously that some of the people with ME get worse because of the wrong treatment and that they do not get the medicine they are entitled to.

The lack of expertise is also very clear within the Swedish Social Insurance Agency and many of those who fall ill testify to difficulties in obtaining the right to compensation. Those ME patients who are able to do so appeal the decision to the administrative court, and this body requires the individual to prove that they are not fit to work.

Undergoing these work tests/exams is an enormous burden for many people and in many cases leads to a significant deterioration in their illness. In other words, people with ME/CFS have a very tough time.

In the spring, the Left Party has submitted a motion that those who are seriously ill with ME should be entitled to home care. This is a motion that we have developed together with the members of the patient association. It could make a considerable difference for some, to get that opportunity.

The Left Party has heard many personal stories, both from ME patients and their relatives, about what it means for them to get to their healthcare appointments. This often needs to be planned weeks in advance, to save energy, so that relatives can accompany them, and afterwards this often leads to the person becoming worse because of the strain involved. This can lead to pain, cramps, fever, etc.

May is ME/CFS Awareness Month and 12 May is International ME Day

The Left Party now hopes that the county's ME patients will be given this opportunity and that the motion will receive a positive response. It would be fitting that it can become a reality already this month!

Jessica Carlvist

Opposition Councillor for the Left Party
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mango · May 19, 2024

Motion in Örebro County, Sweden, from the Left Party, arguing for access to medical and dental healthcare at home for severely ill pwME

https://politiskamoten.regionorebro...jukvard-for-me-patienterpdf?downloadMode=open

Auto-translate said:

[...] The Left Party therefore proposes that;

That ME patients should be given the opportunity to have a doctor visit them at home home when renewing medical certificates, following up on treatments and writing care plans.

ME patients should be offered home visits by nurse/assistant nurse (e.g. for taking samples, wound dressing and for dividing medications in a dosette

ME patients should be offered home visits by occupational therapists when trying out and adjusting medical aids such as wheelchair or similar, help and expertise on how to patient can maintain mobility/be active as much as possible possible, providing pain relief treatments such as massage for example, assessing the patient's physical condition to plan the overall care).

ME patients should be offered home visits by a counsellor to among other things, teach the patient pacing, a method that involves finding the right level of activity so that the patient does not overexert themselves and get worse.

ME patients to be given the opportunity to have digital dental appointments and mobile dental care when possible based on the purpose of the purpose of the visit.

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mango · May 22, 2024

A lawyer and the head of administration at the Patient Complaints Board in Stockholm has issued a statement in response to the many complaints received from pwME, following the political decision that led to major changes in the healthcare for pwME

It is dated 22 April 2024, file number PaN A2404-00060.
https://www.regionstockholm.se/demo...27548-23251593fe136401930-ccc978b7c2a46934872

Auto-translate said:

The situation of patients with ME/CFS

The case

In February 2023, the Health and Medical Care Board (HSN) decided to discontinue the care choice specialised rehabilitation for long-term pain and fatigue syndrome and the additional assignment regarding the care of patients with ME/CFS with expiry in 2025 (Appendix 1). The decision stated, among other things, that the care of the patient groups concerned would be secured. Bragée Clinics, the only healthcare provider providing care under the supplementary contract, chose to terminate the contract and operations ended on 15 December 2023.

Care for patients with ME/CFS in Region Stockholm is now offered at the post-infectious clinic at Karolinska University Hospital (KS) and through care in primary care. Patients can be referred to the clinic at KS for investigation of a suspected diagnosis of post-covid and ME/CFS or other post-infectious diseases. The clinic should also, after referral, be able to receive patients with a confirmed diagnosis where there is need, for example, consultation on the design of care or reassessment of care needs. After diagnosis, primary care should have the main responsibility for contact with the patient.1

During the period 15 October 2023 to 15 April 2024, the Patient Board's administration received 57 notifications concerning the situation of patients with ME/CFS (Supplement 2).
In the reports to the administration, patients describe, among other things, a lack of knowledge in primary care, rejection of referrals to specialised care and lack of access to necessary medicines.

Investigation

The investigation in this case consists of complaints received during the period from 15 October 2023 to 15 April 2024 (57 cases in total). The cases deal almost exclusively with the consequences experienced by patients as a result of the reorganisation of care for patients with ME/CFS. It can be noted that throughout 2023, the administration received a total of 16 complaints, and in 2024, up to 15 April, a total of 47 complaints have been received.

The following are three of the cases handled by the administration.

Case 1

A woman with severe ME, who had previously been a patient at the now closed specialist clinic Bragée, described that she had been informed that she and other patients with ME/CFS would be received by the new post-infectious clinic at KS. When she was referred by her GP to the new clinic, the referral was refused on the grounds that the organisation's remit was only to investigate undiagnosed patients. She had therefore been referred back to her health centre, which, according to the woman, did not have sufficient knowledge of the disease.

The woman, who had previously been prescribed symptom-relieving medication, was now unable to access it as the health centre refused to prescribe it, citing the Stockholm Regional Pharmaceutical Committee's statements that there was no evidence for the drug treatment in question.

The woman questioned the political decisions that led to a worsening situation for patients with ME/CFS who are now completely without specialist care and considered that the region had not kept its promise of continued good care for the patient group.

In the statement from the post-infectious clinic at KS, the head of operations confirmed the patient's description of the political decisions made regarding the care of patients with ME/CFS and that these decisions did not correspond to previously conveyed information. The head of operations further described in his response that according to HSN's service statement dated 8 October 2023, KS should run an investigation unit with the task of diagnosing post-infectious diseases and offering consultation to primary care and in some cases initiating treatment. After diagnosis, primary care will have the main responsibility for contact with the patient. This is the decision the clinic has to follow.

The practice manager said that this means that long-term prescription of medicines and extension of previously prescribed medicines and assessment of the appropriateness of such treatment measures based on evidence and proven experience is the responsibility of primary care, but that the practice can act in a consultative capacity towards primary care doctors.

Case 2

In her complaint to the Patient Complaints Board, a woman diagnosed with ME/CFS commented on the fact that the region had closed down specialist care for this patient group and that she had been referred to primary care, where she had been met with poor understanding and treatment. She described that the new clinic at KS for patients with ME/CFS only had a mandate to investigate and that she, who already had a diagnosis, was forced to seek care from her family doctor.

The GP denied her the medication she had previously been prescribed for several years by the closed specialist clinic. This was despite the fact that the health centre had received a referral and personal recommendation from the previous clinic. According to the woman, the doctor had not read the medical records and clearly showed that he was sceptical about the diagnosis. He wrote a certificate for sick leave, but laughed with an intern at previously issued certificates at the specialist clinic. The doctor neither asked how the woman was feeling nor examined her. The woman questioned why care should be provided in primary care, where there is no knowledge of the diagnosis, no time to learn and no opportunity for research, and felt that this way of organising care was an abandonment of a large patient group.

In the statement from the health centre, the director of operations described that it was
unfortunate how patients with ME/CFS were shuffled around in primary care, most recently with the abolition of the choice of care. He hoped that the state of knowledge would improve so that primary care could eventually have clearer guidelines and treatments to follow.

He regretted that the patient was not satisfied with the way the doctor had handled the patient's case, but said that there was currently no evidence for treatment of ME/CFS and that is what primary care has to deal with. The practice manager concluded by saying that it was obviously very sad to hear that the doctor's behaviour made the patient feel worse and that he had spoken to the doctor about it.

Case 3

A woman with ME who had been a patient at the Bragée specialised clinic described how the clinic and the region had referred her to primary care. At the health centre, she was denied help because they thought she should belong to a specialist clinic. However, the health centre could not explain which one. The woman asked her family doctor to communicate with the specialised clinic, which he refused to do as he did not consider it part of his duties. The woman criticised the lack of care and the poor treatment at the health centre.

In a statement obtained from the health centre concerned, the head of the centre regretted the difficulties described by the patient regarding her meetings with the health centre. Unfortunately, the patient was not alone in her experience that collaboration and handover between specialist care and primary care had failed when the clinic at the time was to be closed down. The health centre had drawn attention to this in several cases and raised the issue with the health administration, the Social Insurance Agency and the specialist clinic's management. The operations manager agreed that the handover should have worked much better. Patients who are already frail and ill should not risk being caught in the middle and having to coordinate their own care.

The head of operations also said that the health centre, which has the overall responsibility for coordinating care, must be given better conditions to be able to care for patients with ME, which is a very complex condition about which there is still a lack of knowledge. Primary care still lacks both the resources and the expertise that a specialist clinic can offer. The health centre worked on improving collaboration and after they raised the issue, they could see that it had become much better.

[...]

The administration's comments

The administration cannot draw any conclusions or express any views on how care for patients with ME/CFS should be organised from the investigation in this case.

However, the administration finds it serious and worrying that so many patients with ME/CFS, as far as the administration can judge from the investigation that appears in the case, are not offered the necessary care and treatment for their illness.

In their complaints, the patients express great resignation and frustration about their situation and describe that they are denied care at specialist clinic at KS, are not given access to the necessary symptom-relieving drugs and that primary care does not have sufficient and adequate knowledge to be able to meet the large and complex care needs of the patient group.

The patients' descriptions of their difficult situation are confirmed in the responses received from the primary care, which in a statement to the administration stated, among other things, that primary care lacks sufficient resources and expertise to meet the need for care.

The investigation in the case also indicates that there were shortcomings in how the organisational changes have been communicated to the patients concerned. In previous cases, the Patient Complaints Board has emphasised the importance of patients being informed of organisational changes, and a lack of communication between the healthcare system and patients is associated with risks to patient safety.6

In the light of the patients' descriptions of their serious care situation and taking into account what has emerged in the responses received from the health authorities and primary care, the administration considers it very important that the situation for patients with ME/CFS is recognised and investigated further by the region.

The matter should therefore be handled as a matter of principle.

The administration therefore finds it urgent that HSN submits aN account of how care should be organised in the short and long term to be able to meet the large and complex care needs of this patient group.

In particular, the administration wants a response to what improvement measures
the Board intends to take to ensure that patients in need of specialised care are not referred to primary care.

Impact on patient safety

The proposed measures can be expected to contribute to an improved care situation for patients with ME/CFS and thus have a positive impact on patient safety.

Impacts on gender equality and equity of care

The proposed measures can be expected to contribute to positive impacts on gender equality and equity in care.

Proposal for a decision

The administration of the Patients' Board proposes that the Patients' Board decides the following.

1. The official statement of the case is sent to the Health Board and the Patient Board requests written feedback on measures to ensure that patients with ME/CFS are provided with good and safe care as well as any implemented and planned improvement measures and their impact by 30 September 2024 at the latest.

2. The official statement on the case is sent for information to the Primary Care Board.

3. The official statement on the matter is sent for information to the Board of Karolinska University Hospital.

Pia Bornevi
Head of Administration
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Edited to add link to source.

mango · May 22, 2024

A reminder to all housebound pwME and others who are planning on voting by courier in the European elections in Sweden 9 June 2024: do remember to order the special courier voting materials well in advance!

You can order the materials from the Swedish Election Authority, a municipality, or a county administrative board.

Here's the official information from the Swedish Election Authority
https://www.val.se/att-rosta/var-rostar-jag/rosta-med-bud.html

Funktionsrätt Sverige (The Swedish Disability Rights Federation) has helpful information on their website, if you are interested in knowing more about disability rights and equality in Europe:
https://funktionsratt.se/vart-arbete/valet-till-europaparlamentet-varen-2024/

The Swedish Agency for Accessible Media offers accessible information about the election:
https://www.mtm.se/om-oss/nyheter/tillganglig-samhallsinform-om-valet-till-eu-parlamentet/

mango · May 26, 2024

(Not ME) POTS on the news, on Swedish radio earlier today.

Effekten av postcovid: Lavinartad ökning av diagnosen POTS
https://sverigesradio.se/artikel/effekten-av-postcovid-lavinartad-okning-av-diagnosen-pots

Auto-translate said:

The impact of postcovid: Avalanche of POTS diagnoses
1:27 min

The previously rare condition POTS has seen an avalanche of growth during the pandemic. Researchers estimate that one third of post-covid patients suffer from POTS, some with severe symptoms.

The symptoms of POTS are many, including pulse racing, fatigue and dizziness. Many people are therefore misdiagnosed.

Professor Artur Fedorowski, consultant cardiologist at Karolinska University Hospital in Stockholm, now wants to see more specialist post-covid clinics in Sweden.

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mango · May 27, 2024

Postcovid on the news last week, on Swedish radio.

Forskning: Postcovid-sjuka blir inte trodda – ens av familjen
https://sverigesradio.se/artikel/forskning-postcovid-sjuka-blir-inte-trodda-ens-av-familjen

Research: Postcovid sufferers are not believed - even by family
1:34 min

Many post-COVID sufferers find it difficult to be believed by the Swedish Social Insurance Agency and health services. But also by their own family, a new study from Gothenburg shows.

At the same time, many post-covid sufferers have long-term problems coping with everyday life and work. After one year, it was those who had had milder covid who had the most problems.

Many also after three years,’ says researcher Ann Björkdahl, who has followed post-covid sufferers for several years.

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Looks like it might be this study, maybe?

LECOG-covid-19. A functioning everyday life after falling ill with covid-19 - could that be expected?
https://www.researchweb.org/is/vgr/project/277346

mango · May 27, 2024

Postcovid on the news a couple of weeks ago, on Swedish radio.

Över 9 000 har postcovid – Ulrika har varit sjuk i fyra år
https://sverigesradio.se/artikel/over-9-000-har-postcovid-ulrika-har-varit-sjuk-i-fyra-ar

Over 9,000 people have post-covid - Ulrika has been ill for four years
1:31 min

At the beginning of the corona pandemic in 2020, Ulrika Bengtsson in Gothenburg became infected - since then she has been ill. She is one of over 9300 people in the Västra Götaland region who have been diagnosed with post-covid.

When she contracted COVID-19, she did not become seriously ill. It was only later that the severe symptoms came.

She now hopes to receive specialised care in Huddinge, as the only post-covid clinic in the region was closed two years ago.

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mango · May 28, 2024

mango said: ↑

A lawyer and the head of administration at the Patient Complaints Board in Stockholm has issued a statement in response to the many complaints received from pwME, following the political decision that led to major changes in the healthcare for pwME

It is dated 22 April 2024, file number PaN A2404-00060.
https://www.regionstockholm.se/demo...27548-23251593fe136401930-ccc978b7c2a46934872
Click to expand...

ME on the news, on Swedish radio this morning.

Vårdcentralen skriver inte ut Johans mediciner
https://sverigesradio.se/artikel/vardcentralen-skriver-inte-ut-johans-mediciner

Primary care health centre not prescribing Johan's medication
1:54 min

Many patients with the neurological disease ME/CFS, which causes severe pain and fatigue that cannot be relieved, have reported deficiencies in their care to the Patient Board in Stockholm.

At the turn of the year, primary care health centres took over the treatment of this patient group, after a large specialist clinic was closed.

Johan Möllerman has reported his health centre for not prescribing his medication: ‘My fear scenario is that many will give up now’.

Click to expand...

mango · May 28, 2024

Postcovid on the news yesterday, on Swedish radio.

Oliver, 12, har haft postcovid i två år: ”Orkar ingenting”
https://sverigesradio.se/artikel/oliver-12-har-haft-postcovid-i-tva-orkar-ingenting

Auto-translate said:

Oliver, 12, has had post-covid for two years: ‘Can't do anything’
1:45 min

For two years, 12-year-old Oliver has been ill after a covid infection. He has had to be tube-fed for periods and has been in a wheelchair.

‘He has been diagnosed with post-covid, but has not received any treatment for it, but has been sent around the healthcare system,’ says mum Emma. Oliver has adapted schooling, but is usually only able to spend short periods on the computer.

The family is beginning to feel resigned and wants the health service to take responsibility.

Click to expand...

mango · May 28, 2024

Postcovid on the news yesterday, on Swedish radio.

Läkarlarmet: Vi hinner inte vårda postcovidsjuka
https://sverigesradio.se/artikel/lakarlarmet-vi-hinner-inte-varda-postcovidsjuka

Auto-translate said:

Doctors sound the alarm: We don't have time to treat people with post-covid
1:04 min

Despite the fact that it is almost two years since primary care health centres were given responsibility for post-covid patients in Västra Götaland, there is a lack of resources.

‘Knowledge about long-term problems after covid infections is better but varies,’ says Jakob Nyhlén, a district doctor in Gothenburg and chairman of the primary care section of the Västra Götaland Medical Association.

Patients with extensive problems risk falling through the cracks, he says.

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mango · May 28, 2024

Postcovid on the news the day before yesterday, on Swedish radio.

Hit åker postcovidsjuka från hela Sverige – för att få vård
https://sverigesradio.se/artikel/hit-aker-postcovidsjuka-fran-hela-sverige-for-att-far-vard

Auto-translate said:

This is where post-covid sufferers from all over Sweden go - for treatment
1:31 min

Several post-covid patients from the Västra Götaland region are receiving care in Stockholm since the post-covid clinic at Sahlgrenska University Hospital in Gothenburg was closed down two years ago.

There are few post-covid clinics left in the country. One in four patients at the post-infectious diseases clinic at Karolinska University Hospital in Huddinge is from a region other than Region Stockholm.

‘There could be more,’ says Håkan Wale, head of the clinic in Huddinge.

Click to expand...

mango · May 29, 2024

mango said: ↑

A lawyer and the head of administration at the Patient Complaints Board in Stockholm has issued a statement in response to the many complaints received from pwME, following the political decision that led to major changes in the healthcare for pwME

It is dated 22 April 2024, file number PaN A2404-00060.
https://www.regionstockholm.se/demo...27548-23251593fe136401930-ccc978b7c2a46934872

Edited to add link to source.
Click to expand...

The minutes from the May meeting of the Patient Complaints Board in Stockholm (Patientnämnden) have now been published. They decided to approve the proposal (above)

Auto-translate said:

Decision

The Patient Complaints Board decides

The service statement on the matter is sent to the Health Board and the Patient Complaints Board requests written feedback on measures to ensure that patients with ME/CFS are provided with good and safe care, as well as any implemented and planned improvement measures and their effects by 30 September 2024 at the latest.

The official statement on the matter is sent for information to the Primary Care Board.

The official statement on the matter is sent for information to the Board of Karolinska University Hospital.

Click to expand...

I don't know enough about the politics and everything to be able to guess how much actual impact this will have on the situation, but to me it seems like a significant step in a meaningful direction. Decision makers and people in power are now formally acknowledging the problem and demanding action and (at least some degree of, some kind of) accountability from those who have the power to actually change the situation for the better for ME patients in Stockholm. I really hope that this will turn into something real, and not just more empty words on paper.

mango · Jun 10, 2024

(Not ME, but post-infectious POTS) Informative and sympathetic.

Maria, 48, har Pots: ”80 procent av mitt liv ligger på paus”
https://www.dalademokraten.se/2024-06-10/maria-48-har-pots-80-procent-av-mitt-liv-ligger-pa-paus/

Auto-translate said:

Maria, 48, has Pots: ‘80 per cent of my life is on hold’

Sick after the pandemic

It started with a flu 2.5 years ago. Today, 48-year-old Maria Spange needs to lie down for large parts of the day. The diagnosis is called Pots and has increased greatly after the pandemic.

- ‘I feel that at least 80 per cent of my life is on hold,’ she says.
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Hutan · Jun 13, 2024

The Norwegian health authorities are in the process of making brand new guidelines for ME/CFS and chronic fatigue with unexplained background.
Click to expand...

You can help here:

Norwegian guidelines in development: help with a literature search

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