News from Scandinavia

A women's magazine has an interview with Sara Emilie, a young mummy-influencer who's been suffering from ME since she was 15, but only recently been open about it on social media. Luckily she has improved some over the years and wonders if her pregnancies might be the reason for this. Assistant general secretary of the Norwegian ME Association is also interviewed.

After telling her ME story on the blog she has received many reactions from readers. Most are positive, but some have difficulty understanding that a young woman who always looks so energetic and happy can really have ME.

Sara says it has been important for her not to let the disease define who she is on social media. At the same time, she feels a kind of responsibility to use her platforms to spread knowledge about the diagnosis.

- I have lived with this stamp on my forehead for so many years. I was always the one who was just visiting the school and that others had to be considerate of. People just wanted to be kind, but it's tough to always feel you're "the sick one." So I wanted to not focus so much on the disease in social media.

- I also avoided going into detail as I knew that there is a lot of prejudice around ME. At the same time, every negative comment shows how important it is to talk about it, as those who think something negative is simply not well informed. As an ME-sick person, one does not have the energy to take that fight , but now that I am better, this has become a matter close to my hear, naturally. I want to show ME in the right light, she says.

Sara Emilie fikk ME som 15- åring
google translation: Sara Emilie got ME when she was 15 years old

 

Here's a copy of a post I made in the Possibility of ME or PVFS after COVID-19 thread just now:

 

The link in this paragraph takes you to a link about an article on Tina Roe Skaar, who recovered due to Lightning Process!!

- I also avoided going into detail as I knew that there is a lot of prejudice around ME. At the same time, every negative comment shows how important it is to talk about it, as those who think something negative is simply not well informed. As an ME-sick person, one does not have the energy to take that fight , but now that I am better, this has become a matter close to my hear, naturally. I want to show ME in the right light, she says.

 

Oh dear

 

Google tells me Denmark checks out as Scandinavia, right?


Researchers are now talking about a 'post covid-19 syndrome' - and want it recognized as a disease

https://nyheder.tv2.dk/samfund/2020...ovid-19-syndrom-og-vil-have-det-anerkendt-som

Probably the first time I've seen a bad translation actually add clarity. I guess that's malaise.

Sigh. If only it were just that.

So far appears to have avoided the functional quacks.

 

The original translates as "pain in the body" but "evil in the body" is so much more apt!

 

A psychiatrist at a BPS oriented ME center in Linköping, Sweden, removed the ME diagnosis of one of their patients, despite never having met her. She's now being denied home visits and medical care. Here's her story, in her own words:



Maybe easier to read on Facebook, for those of you who want to use their auto-translate function:

 

The Swedish doctors' magazine Läkartidningen is publishing an article promoting BPS for long haul covids. It's bad. They are leaning on Simon Wessely.

https://lakartidningen.se/opinion/d...t-kan-hjalpa-vid-langvariga-covid-19-symtom/#

 

Strange how the BPS approach dominated treatment of ME/CFS for decades and yet these patients are exactly "identifying themselves as misunderstood and not taken seriously".

It's sad how the authors are completely blind to the obvious.

You've got to be pretty dumb to believe that making up a BPS narrative is a substitute for actual understanding of the disease of the patient. Many patients aren't that dumb and will feel like the healthcare system is stonewalling them.

Application of the BPS model signals to patients that they are not taken seriously, and that this (in combination) with lack of treatments, pushes patients towards quackery. It's not a problem of how the BPS model is presented to patients, it's the substance of the idea. It's a pseudoexplanation and pseudotreatment that has no long term viability.

Patients might also misinterpret these excuses as the healthcare system simply not wanting to give them treatment or misunderstanding the problem (rather than there perhaps being no treatment). The logical next step for a patient is to find a doctor that will treat the problem and that's how patients end up with quacks.

It seems the BPS model is rolled out whenever there is a difficult and poorly understood health problem without treatment. Maybe what doctors need is some training in how to honestly talk to patients about this.

 

Swedish infamous BPS extremist Jörgen Malmquist has announced on his blog that his new book "Trött hela livet. Sjukdomen ME" ("Tired [your] whole life. The illness ME.") will be released at the end of August.

It seems like he has already started fishing for attention and drama through his blog posts, by what looks like attempts to provoke pwME and the patient organisation etc... Ridiculous, but it causes harm nonetheless.

Here are some links to archived copies of his latest blog articles on ME (not a recommendation!):

https://web.archive.org/web/2020073...ess.com/2020/07/21/en-forstummad-me-forening/

https://web.archive.org/web/2020073...020/07/30/svar-langvarig-trotthet-och-me-cfs/

https://web.archive.org/web/2020073...-misslyckat-forsok-att-skapa-en-unik-sjukdom/

Sten Helmfrid has been doing a great job for years now, confronting Malmquist's false statements, using facts and science (sadly to no avail).

https://twitter.com/user/status/1285566037048647680


https://twitter.com/user/status/1286221800297422848


https://twitter.com/user/status/1288878353542504448

 

This troll is completely out of his depth. Like all the other trolls but whatever.

It's really weird seeing these people whine about being criticized when no one but them even wants them to be involved and they contribute nothing but confusion and their own delusions. Just go away, nobody cares. It's like some bully whining that the whole school hates them. Just, I don't know, don't bully? No one's making them do this. I don't get this weird persecution complex but it may explain the projection they push towards us.

And another BPS book on ME? Saying the same things as all the other books? Why? Who cares?

 

He has only five followers on twitter. One of them is LP coach Live Landmark.
Is he otherwise a known doctor in Sweden, or are the few twitter followers a sign of him not speaking on behalf of many? Do you know if he is self publishing this book or if he has a deal with a publishing house?

ETA: I see he's published two other books already. One of them about controversial diagnoses as ADHD, chronic lyme and electromagnetic hypersensitivity

 

Oh dear. That book was reviewed by the journal of the Swedish medical association.
google translation of part of the book review:
Chronic Fatigue Syndrome (KTS) is not unexpectedly one of the main points of the chapters. The book describes the concept's captivating history with many local small epidemics (outbreaks) which of course gave rise to the notion that KTS is caused by a contagious, probably viral infection. For several years, no outbreaks have been reported.

The book as a whole raises many important questions about the factual basis of created diagnoses. The thought goes to the confusion of a famous president: "Alternative facts".

 

I don't know if he is what you would could call "a known doctor" or not. I think @Obermann would be a better person to answer your question.

Malmquist is definitely not famous like for example Björn Bragée who used to have his own tv-show.

In certain circles I'm sure he's a well known name, though. He's quite prolific when it comes to opinion pieces in various publications (Christian magazines, medical journals like Läkartidningen and Allmänmedicin etc), giving talks at medical/healthcare seminars and conferences, some of the regional healthcare systems (regionerna) use his articles so I guess maybe he has some kind of indirect influence when it comes to policymaking and/or education, I've seen his articles and books mentioned and quoted in papers by BPS students, and he has been quoted as an "expert" in news articles, etc.

Yes, as you've discovered already this won't be his first published book. Studentlitteratur (a large academic publishing company) published one of his earlier books. I haven't yet been able to find any more info about his upcoming book other than what he himself has published on his own blog and Twitter.

ETA: When I first heard about the upcoming book (was mentioned in an article in the magazine Filter), the title was ”Trött hela livet - Om den omstridda och svårtolkade sjukdomen ME/CFS”.

 

Thanks @mango
I saw he's also contributed to the Swedish encyclopaedia as medical expert..

 

The content of one of Malmquist's earlier books (2000) "Föreställningar om sjukdom – Somatisering, Medikalisering, Prioritering" is described by the publisher as follows:

 

Malmquist's Researchgate entry is interesting. He published in international journals from 1959 to 1987. Since then he has only published in Swedish and mostly opinion pieces. His earlier work was in endocrinology or metabolism. The dates suggest that he is about 85-90 years old? If he was younger why stop publishing at age 50?

There is no indication that he has any expertise in psychiatry or ME/CFS irrelevant disciplines. It looks to me as if he is someone who was once in the scientific establishment who is useful to wheel out in support of dodgy views.

Maybe he has himself suffered from some form of chronic illness, like Live Landmark and Henrik Vogt.

 

I haven't read Malmquist's books other than the chapter on ME/CFS in "Diagnoser som diskuteras: uppmärksammade medicinska kontroverser" (2016). Vile

Here's how the book was described by the publisher: