News from Scandinavia

Ravn said:
While formally claiming to have separated ME from functional disorders, access to documents shows that the practice is quite the opposite. At one center (Center for Functional Disorders), 41 out of 44 patients with an ME diagnosis have been recoded as functional disorders. Since 2019, four centers have had zero patients registered with an ME diagnosis and have not made the diagnosis themselves.
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This sounds remarkably similar to what has been going on at the "ME clinic" in Göteborg in Sweden: https://www.s4me.info/threads/swede...e-to-avoid-the-diagnosis-me.45927/post-674111

I'm not at all surprised if this is not a coincidence. The functionalist lobby in Sweden has expressed admiration for Per Fink and Denmark.

Also related to this thread: https://s4me.info/threads/the-disappearance-of-me-cfs.38068/
 
Post from Reddit:

Post-infectious clinic that will open up in April struggles to find doctors who are interested in a position. So far, only 3 doctors have been submitting an application.​
I got this update in an email from the national ME support group that has pushed for this clinic to open:​
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"Update on the Clinic for Post-Infectious Symptoms.​
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The job advertisements have been out since mid-Februar, and the application period for the various positions is starting to expire.​
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There seems to be a very large interest in starting to work at the clinic, especially among psychologists and medical secretaries, but also the occupational and physiotherapist positions have gained over 10 interested parties each.​
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The medical positions have only received 3 applicants but are open for another week. "​

ETA: the clinic is located in Sweden.
 
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Chandelier said:
Post-infectious clinic that will open up in April struggles to find doctors who are interested in a position. So far, only 3 doctors have been submitting an application.
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I am not surprised. Why would a doctor want to take up a job in a clinic with an airy-fairy name that sounds as if it might be closed next month? And why would they want to join a clinic full of physios and psychologists? This is why the 'community rehab' model is a dead duck.
 
Jonathan Edwards said:
I am not surprised. Why would a doctor want to take up a job in a clinic with an airy-fairy name that sounds as if it might be closed next month? And why would they want to join a clinic full of physios and psychologists? This is why the 'community rehab' model is a dead duck.
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Doctors have stand alone clinics in Norway, and Sweden already have a «team» setup in primary health where the doctors work with physios, nurses etc. There was a doctor’s office in my old town that shared space with a physio clinic, they were very happy with the setup.
 
Midnattsol said:
Doctors have stand alone clinics in Norway, and Sweden already have a «team» setup in primary health where the doctors work with physios, nurses etc. There was a doctor’s office in my old town that shared space with a physio clinic, they were very happy with the setup.
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That is a bit different from a rehab set up. All doctors work alongside nurses and in the community there will be physios covering physio things and everyone will be happy. But that is not the same as being the token medic in a rehab centre with forty therapists all therapping patients for all they are worth regardless of any evidence. That is what I worked in when I trained in rehab and it just seemed to me absurd. The doctors who got involved were mostly those who hadn't got an interesting job in a real specialty as far as I could see, or wanted a nice part time job without too much responsibility.
 
Jaybee00 said:
Anyone can summarize? Thanks

www.hemtrevligt.se

Anders slapp rullstolen efter 20 år: ”Det känns som jag fått mitt liv tillbaka”

En mystisk autoimmun sjukdom gjorde så att Anders Pettersson gradvis förlorade styrkan i kroppens muskler. I över 20 år var han rullstolsburen – tills en medicin mot tarmsjukdom ändrade hans liv totalt.
www.hemtrevligt.se www.hemtrevligt.se
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Probably had Myasthenia Gravis, but the tests back then were inconclusive. Got diagnosed with Ulcerative Colitis in 2024, put on Infliximab and both conditions improved. Trying to sort out dosing.
 
Live Landmark argues that the concept of a diagnosis of ME/CFS is medically and scientifically inappropriate because it can’t be proven with a test.

Auto-translated sections:
First, the diagnosis cannot be ruled out on an individual level. There is no test that can say that a person does not have ME. The fact that a somatic diagnosis cannot be ruled out is a serious weakness and should worry us.
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Second, the boundaries are arbitrary. There are over 20 sets of criteria for ME [6], and according to the WHO, there is still no consensus on the use of any of them [7]. The same person may therefore be diagnosed by one doctor but not by another [8, 9]. When the diagnosis is left to the patient’s narrative and the doctor’s preferences, we end up with a diagnostic lottery.
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The symptoms of ME are also very common. Long-term fatigue, pain and sleep problems occur in large parts of the population. If you have one first, the other will often follow. This also applies to the so-called cardinal symptom, PEM, or worsening after activity.

The phenomenon is reported in depression and MS [2], but also in fibromyalgia [12]. Over half of those with health anxiety report the same. In bodily distress syndrome [13, 14] the proportion is as high as 90 percent.
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When we treat the ME diagnosis as a biologically confirmed disease, we begin to reason incorrectly. We reject treatments that actually work because they are not tailored to a biological mechanism that we still haven’t found – even after 50 years of research [15].
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We owe it to patients to be honest about what an ME diagnosis actually is. A diagnosis that cannot be refuted does not protect the patients. It only protects the diagnosis.
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She makes some salient points about inconsistent diagnostic practices and too much emphasis on poor research, but seems to be completely unaware of the hypocrisy of referring to BDS while criticising ME/CFS. She also claims that psychological diagnoses somehow can rule out ME/CFS, as if those are possible to prove.

She also makes a completely unevidenced claim that we have treatments that work, and in general seem to be confused about PEM and defining it very broadly, even though she’s kind of right about it being an interpretation (though it’s more of an observation of a pattern).

The fact that ME/CFS can’t be proven biologically is a weakness, but not something to worry about. By following her logic, we should remove all psychological diagnoses as well, and the entirety of the BPS model of disease.

She also leaves out her effort to hinder research into the biology of ME/CFS so we can fix the issue of having no tests.
 
I guess we can write of autism, adhd, parkinson, dementia and probably more too… after all there is no definitive test.

And we should stop having multiple ways to measure something. Personally I would want less than 30 ways to decide if someone is following a Mediterranean diet. And all the different functional assessments with various overlaps, obviously if the patient is healthy on one set of criteria regardless of the appropriateness of the measurements used we should scrap the whole idea.
 
Trish said:
I have no idea why someone with no medical or scientific training is pontificating on this topic.
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Live Landmark has a vested interest so her pontificating is no less surprising than it is ill informed. What I find more concerning is that so many people who ought to know better give her a platform. Her PhD supervisor also has a lot to answer for.

I have still not got over, the fact that Crawley’s et al’s study on LP in children, which ought to have been the reductio ad absurdum of open label trials with subjective outcome measures, instead resulted in the BPS coterie embracing LP.
 
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