News from Scandinavia

Myndighetsjuridik (a law firm, I think?) published an article last week, an analysis of legal matters concerning ME/CFS in Sweden.

En rättsanalys av ärenden som rör ME/CFS
https://myndighetsjuridik.se/nyheter/en-rattsanalys-av-arenden-som-ror-me-cfs

 

(Not a recommendation. I haven't read the book myself.)

This book was published in Sweden last year, "The fantastic world of homeopathy: about ME and MS". Looks like it's part of a series of many books, including covid-19, "the vaccination pandemic", pregnancy, allergies etc...

I'm not familiar with the author, but he's apparently a well known homeopathy practitioner who has treated some pwME with "varying results", according to posts on social media.

Homeopatins fantastiska värld! : om ME och MS av Stefan Whilde
https://www.bokus.com/bok/9789177654827/homeopatins-fantastiska-varld-om-me-och-ms/

ETA: A review by ETC of his anti-vaxx book. ("Warning: Anti-vaxxer sells extremely dangerous children's book")

 

According to a news article published today, the opening of a ME clinic in Umeå, in the north of Sweden, will be delayed.

(Search for "Västerbotten" in this thread to read previous posts on this topic.)

Försenad öppning av ME-mottagning i Umeå
https://www.vk.se/2021-08-13/forsenad-oppning-av-me-mottagning-i-umea

Meanwhile, the postcovid clinic in Umeå has been open since May, with a multi-professional team (physician, physiotherapist, occupational therapist, psychologist and counsellor) from the Neuro centre's rehab group.

And yes, that's the same Neuro centre that continues to reject patients with ME, and its senior consultant/physician executive was quoted in the news some time ago saying that they don't believe in the diagnosis ME.

(Edited to add a link to the source in the last sentence.)

 

Has it yet become clear how they deal with those long-covid patients who only have symptoms of ME?

 

I don't know. I, too, would like to know. So far I haven't seen any comments by patients of this clinic in the Facebook groups. Haven't seen any comments in the news either, nor from the patient organisations.

 

Imagine rejecting something as non-existent, as a professional, but accepting the same thing under a different label, completely oblivious that they are the same thing. Honestly I can't, this level of incompetence is beyond my imagination. You can't even satirize this, it's too absurd.

Seriously this is like accepting that hurricanes are a thing but typhoons aren't, as a climate scientist. I mean, seriously, how does that even happen?

 

A Twitter thread about the Västerbotten situation:

"A decision to open a clinic was made three years ago, but it was cancelled due to lack of funds."

https://twitter.com/user/status/1426120388568834050

 

"Lack of fund" in passive voice. This is not a passive thing, funding was refused. Those aren't decisions handed down by angels, people make those decisions. Using the passive voice, as if this was imposed by some unseen force, removes accountability from a system that badly needs so much more.

 

Finland sets up Long Covid working group
https://yle.fi/uutiset/osasto/news/finland_sets_up_long_covid_working_group/12071244

Finland's Ministry of Social Affairs and Health has established an expert group to investigate the phenomenon of Long Covid.

...

The group is to be led by Risto O. Roine, Professor of Neurology at Turku University, and includes a further 14 experts from academia and public and private healthcare providers.​

Not in a hurry

The group will gather information up to the end of 2022, to evaluate the longer-term effects of Covid and see if it is a risk factor for other illnesses.​

 

Every time I see this person's face the content is terrible. Horrible gaslighter. And again, misrepresenting so completely they, at least in tweet, appear to blame the patients' objections as delaying the release of the guidelines, which is the complete opposite of reality. Absurd and easy to check, but also seems to be completely ignorant of its substance, that there is no treatment.

If medical writers can't even get basic facts correct about simple events, how can they actually get complex things right? I assume this is willful disinformation, because it's impossible to get so many basic facts incorrectly here.

Unrest? Protests? If we could do that things would be very different. Then again if we could do that we literally wouldn't be in this mess. Awful, I don't even want to read the rest but whatever here it is.

https://twitter.com/user/status/1430464024853073931

 

Maybe it needs a well informed comment being made.

 

many have tried. It all started some years ago when a biology professor attacked ME patients for criticising the PACE trial in a newspaper where she was science editor. That opinion piece got a massive amount of negative response, and ME patients have not been popular with her ever since.

And as she's written several texts about ME by now, she is to be considered a neutral expert in the field for other journalists to interview.

 

It’s so unhelpful, as the rest of her low standard “contributions”, that for some reason just is stigmatization of ME-patients as “troublesome”. If you have no interest in, and close to no knowledge of the history, this is what you get.

A couple of comments to the obvious flaws in the text. What exactly is so-called long-COVID? We don’t know yet, but in general it is it surely not ME. That some might develop ME later, well that shouldn’t surprise anybody. But as a start, one should be careful to equal two separate things like long-COVID and ME.

Garner is an anecdote, like other anecdotes in the opposite direction, not doing anything different from what he has done, except from his “start”. I don’t know he’s case, which one would need to know a lot more of to catch important nuances, but it is interesting that he spent at least three months “in bed” early on. Congratulations! I would not hesitate to label that as a “good start”. The problem is that is often not the case for ME-patients. Important! They will often continue “as best they can” early on and for way to long, and with big consequences. Garner should really appreciate that he had the “luxury” of “tucking in” and make some really hard and thoughtful thinking of what things might be the other way around. Anecdotes...?

Then I wonder, why don’t the author look at the data instead, look at recovery-rates, more precisely how many gets better, which is a more precise term than recovery. That’s much more interesting and telling, but she surely has no idea of the data. And it is simply not true that patients themself have just given up and “lies down” or tell anyone else to take such approach as some kind of general advice. That said, many long-time sufferers that didn’t have the luxury of Garner initially, they know that things probably could have been better in the long run if they could have had a whole different approach, other than the in this case quite useless keep calm and carry on. That’s why a sound advice from the ones carrying on way to much at the wrong time, would be to take it slowly for a while early on. But that is something completely different than the nonsense narrative of go to bed and stay there.

The other thing worth commenting, is why hasn’t ME-patients reacted to a small study on LP regarding chronic fatigue after cancer? The author seems to imply that since patients did react to study on LP on ME, they should have done the same here. Hmmm. Maybe true, but as she should be aware of, things are more than messy and many. Not to forget the obvious reason that ME isn’t chronic fatigue. That is a vital point of huge significance. Again, you can’t make the assumption that chronic fatigue is ME. That is a gigantic mistake. These distinctions are so important, it’s in the details, but as we know from this piece and many others, who gives a shit, and unfortunately these mistakes are repeated again and again.

My advice would be that if you’re an science editor, go to the data, read the sources, do it properly before “printing” bs.

 

For what it's worth, an excerpt from the half-year report of the Swedish pharmaceutical company PharmaLundensis:

https://news.cision.com/se/pharmalundensis/r/halvarsrapport-2021-01-01-till-2021-06-30,c3399953

 

Läkare behandlade ME-sjuka med pollen
https://www.expressen.se/gt/lakare-behandlade-me-sjuka-med-pollen/

https://translate.google.com/transl....se/gt/lakare-behandlade-me-sjuka-med-pollen/

 

Only state-approved alternative methods, amirite? All pseudoscience is equal, but they are definitely not treated equally. Somehow. Because official recommendations for ME are clearly pseudoscientific alternative medicine, so clearly that's not a consistent issue.

 

A new op-ed by ME patient Madelleine Müller appeared today in the Danish daily newspaper, Information. Fortunately, it is not paywalled and accessible freely here: https://www.information.dk/debat/20...ved-sygdommen-mistaenkeliggoeres-laegestanden (for non-Danish speakers, Google Translate is a few clicks away of course)

Madelleine speaks of the 'epistemic exploitation' sadly implicit in so many encounters between ME patients and health care professionals amongst others, e.g. the tendency of marginalised people (in this case patients) being demanded evidence of the very factors of marginalisation and stigma by those in power (often doctors). She references a recent conversation of her own with a doctor and also connects the dots to the current political landscape re ME in Denmark. In my humble opinion it is an excellent read with some extremely relevant points being raised. Hoping some of you will find it similarly helpful and empowering.

 

An article about research into ME from the tabloid newspaper Dagbladet who has a history of grim articles attacking ME patients. I'm not sure why this article is coming now and if this is a hint of how the BPS-group will try to position themselves going forward.

The article is paywalled, but here's a summary:

Title: Researchers: Three types of ME

Recent research points towards several subgroups that can be of need of very different treatments.

There's a short summary of the recent paper from Tronstad et al, that they found large differences in blood samples to ME patients and healthy control, but also that there were clear differences within the ME patient group. The results can partly be due to the illness itself, but also a result of ME patients having a lower activity level.

Signe Flottorp from the Norwegian Institute of Public Health says there are not sufficient evidence for defining subgroups in ME. She says subgroups is not all about biomedicine and genetics, but that health care workers in a holistic approach must always consider personality, life conditions, previous experiences and challenges.
"Such conditions can also influence expected effect of different treatments" says Flottorp.

The study "Cognitive Behavioural Therapy Improves Physical Function and Fatigue in Mild and Moderate CFS: A Consecutive Randomized Controlled Trial of Standard and Short Interventions" showed that individual CBT improves physical function in patients with mild to moderate ME. Some had very good effect, some had a little effect, and some had none effect, according to one of the researchers behind the study, Merethe Eide Gotaas. They are now trying to find out if there is anything in common in those who had very good effect, some effect and no effect. They are looking at factors as age, gender, pain, physical condition or challenges with memory. Their goal is to identify those patients who will have most benefit from CBT. They plan to publish their findings before Christmas.

Ingrid Helland from the National Competence Service for CFS/ME says several studies shows that different kinds of treatment can have good effect. One possible explanation may be sub groups within the patient group.