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 at 5:03 PM

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.
Click to expand...

Sean · May 16, 2024 at 4:31 AM

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 at 7:18 AM

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.
Click to expand...

rvallee · May 17, 2024 at 8:12 PM

Medical consensus is lacking
Click to expand...

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 at 9:40 PM

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 at 4:30 PM

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
Click to expand...

mango · May 19, 2024 at 4:38 PM

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.

Click to expand...

Log in or Sign up

News from Scandinavia

Sean Moderator Staff Member

mango Senior Member (Voting Rights)

Sean Moderator Staff Member

mango Senior Member (Voting Rights)

rvallee Senior Member (Voting Rights)

mango Senior Member (Voting Rights)

mango Senior Member (Voting Rights)

mango Senior Member (Voting Rights)

Share This Page

Log in or Sign up

News from Scandinavia

Sean Moderator Staff Member

mango Senior Member (Voting Rights)

Sean Moderator Staff Member

mango Senior Member (Voting Rights)

rvallee Senior Member (Voting Rights)

mango Senior Member (Voting Rights)

mango Senior Member (Voting Rights)

mango Senior Member (Voting Rights)

Share This Page

Useful Searches