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:
mango said:
Aftonbladet, Sweden: Forskaren om risken efter corona: ”Varningssignal”
https://www.aftonbladet.se/nyheter/a/K3daXX/forskaren-om-risken-efter-corona-varningssignal

Google translate, English: The researcher on the risk after corona: "Warning signal"

ME researcher Jonas Bergquist is interviewed about their new research project, and a ME patient is interviewed too. Well worth a read!
By studying covid patients in parallel - who have been in intensive care and who may have long-term suites of the infection - Jonas Bergquist also hopes for breakthroughs in ME research.

- ME patients are often confused with patients with burnout. Those who suffer from depression usually respond quite well to activity changes and antidepressants. But ME patients don't, they just get worse. ME patients cannot make the fatigue go away by resting, and it is extremely difficult for them to recover. On the contrary, physical activity above the individual threshold can lead to relapse and a worsening disease situation, says Jonas Bergquist.

Early days

Although they are at an early stage, they try to find links between ME and covid patients.

- The majority of ME patients debuting in their illness mention an infection of various kinds, that the immune system is triggered, for example, a flu-like infection. It is an ongoing collection [of data] and we hope to reach hundreds of covid patients in order to see a link in the symptom picture or in the disease mechanism, by also including more mildly ill covid patients but with permanent complications, he says.

So is there a risk that covid patients may develop ME?

- Yes, in the long run. If the complications in the form of post-viral fatigue become prolonged for more than six months after a covid-19 infection, and other treatable causes have been ruled out, you as a patient may be diagnosed with ME, says Jonas Bergquist.

He continues.

- Covid can be a way of introduction to get a neuroinflammatory trigger, where the immune system has been given an error signal that causes it to start attacking the body's own cells. This is a phenomenon we need to understand better.
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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.
 
MEMarge said:
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.
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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
Extreme fatigue. Headache. Evil in the body. Shortness of breath. Difficulty concentrating.
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Probably the first time I've seen a bad translation actually add clarity. I guess that's malaise.
The same picture of late-onset covid-19 appears in many parts of the world, with the symptoms being called ' post covid-19 syndrome ' and ' post viral fatique' .

Therefore, according to the BBC , researchers will investigate whether the symptoms should be classified as an independent disease.
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According to The Guardian , after several outbreaks of infectious diseases, there have been people who, after the illness, suffered from extreme fatigue called 'chronic fatigue syndrome'.
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This includes, for example, mononucleosis caused by Epstein-Barr virus, and Q fever - a bacterial infection that can be transmitted from animals to humans.

Also after the outbreak of SARS in 2003 , a study found that up to one-third of those infected had difficulty exercising for months, despite having normal lung function.

Signs of chronic fatigue syndrome are pronounced fatigue and fatigue, which do not go away during sleep or rest, and which impede everyday life.
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Sigh. If only it were just that.

So far appears to have avoided the functional quacks.
 
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:

 
Clementine said:
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/#
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If we do not deal with this part of the corona pandemic, there is a risk of a new group of patients identifying themselves as misunderstood and not taken seriously, and a picture of a medical establishment that wants to pretend that their problems are not real. To counteract this, the consultation should try to reach a common picture and explanation of the patient's symptoms.
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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.

Our experience is that a biopsychosocial disease model, where biological, psychological and social factors are given space, has the greatest success in explaining and laying the foundation for treatment in long-term conditions,whether it is clear somatic diseases or complex conditions with functional elements. Broaden your perspective and take the help of other skills (rehab staff or psychosocial resource) when your own is not enough.
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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.

Patients' symptoms will not be reduced by a generous attitude. Signals that healthcare does not take patients seriously or downplay their suffering risk pushing them into the arms of unscientific theorists. The broad competence of healthcare, treatment with respect for people's different conditions and a biopsychosocial approach increase our chances of helping those affected, regardless of whether their problems have mainly been caused by sars-cov-2 or not.
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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.
 
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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. :grumpy:

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).





 
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?
 
mango said:
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. :grumpy:

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).





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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
 
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Kalliope said:
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
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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".
 
Kalliope said:
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
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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”.
 
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mango said:
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 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.
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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:
Google Translate said:
Perceptions about illness - Somatization, Medicalization, Prioritization

The relations between the general public and healthcare are changing markedly. The world of healthcare is becoming increasingly important for the notions of illness and thus for the daily work of healthcare.

The book describes and discusses how perceptions of illness, together with the world of medical knowledge and thought, affect the doctor's work and the patient-doctor relationship.

The book's main themes are:
  • the basic elements of medical thinking and decision-making
  • dissemination of knowledge and opinion about diseases and their causes in the information society
  • importance of somatization and medicalization processes
  • current difficult to interpret diseases: amalgam disease, electromagnetic hypersensitivity, chronic fatigue syndrome, etc.
  • concepts, perspectives and values that influence perceptions of illness and healthcare policy
  • relationships between medical and existential problems: how different perceptions shape the view of the role of doctors and the boundaries of healthcare
The book is aimed at those who train as doctors or other care professions, as well as those who are teachers in such educations. However, it is designed to also be relevant to social scientists, journalists, politicians and anyone else who has an interest in the development, problems and opportunities of healthcare.
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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:
Google Translate said:
Diagnoses under discussion: noted medical controversies

The book's two main lines:
Basic medical concepts about diseases, their causes and diagnostics are described and explained.

Diseases that are medically difficult to interpret and are lively discussed by those active in healthcare, by researchers and by the general public. Such diseases get a lot of attention in the mass media. The contradictions between different views sometimes become very strong when it comes to disease cause, diagnostic methods and treatment. The book describes the knowledge that is more or less certain about each of a number of such diseases or diagnoses. The development of the debate and the current positions are described. Hypersensitivity to electricity, chronic Lyme disease and ADHD are examples of diagnoses that are addressed.

The book wants to give the reader an increased opportunity to interpret what is presented in the debate and to participate in it. An important point is that disagreement often concerns the following: What can be considered facts? What is uncertain and what is wrong? How should facts be interpreted? The book wants to shed light on this.

The book is written to be readable and interesting for everyone. It wants to provide both an overview and insight. It can be of particular interest to those suffering from the diseases described and to their relatives. It is also relevant for people in health care, social services and schools, for journalists and health care politicians, for those who are active in the judiciary and for those who are administratively active in health care and its supervisory authorities and the Swedish Social Insurance Agency.

Jörgen Malmquist is an associate professor of internal medicine. He has been active as a hospital doctor for many years. Since then, he has worked as an editor and writer in several encyclopedias, including the National Encyclopedia 19952011.

Every two years, the Swedish Medical Association awards the Bengt I. Lindskog language prize to a Nordic person or organization that has promoted medical language care, ie has made efforts to renew and clarify medical terms and concepts so that they become clear to health care professionals and also easily accessible to the public. Jörgen Malmquist was awarded this prize in 2009.
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