News from Scandinavia

Excellent article about children and adolescents with ME from Denmark. Written by specialist and psychologist Charlotte Ryhl and published in the journal of the Danish Psychological Association.

The purpose of the article is to draw attention to a group of somatically ill and overlooked children and adolescents who do not feel that they are receiving help from the health care system. Despite many unresolved questions about the disease ME (Myalgic Encephalomyelitis), our Nordic neighbors are showing a way by giving young ME sufferers a voice. Knowledge is a prerequisite for understanding, and it is precisely psychologists who have the tools to listen, which is necessary to understand and help these children and adolescents and their families.

Psykologer har også et ansvar for børn og unge med ME
google translation: Psychologists also have a responsibility for children and adolescents with ME

 

Do you have the original sentence too? (sorry, but not able to read the article one more time today)

 

No, though I would have used ‘exhaustion’ rather than fatigue. So not great that they equate PEM with being fatigued.

 

Opinion piece by the action network #116omdagen, criticising Försäkringskassan/the Swedish Social Insurance Agency. #116omdagen advocates for justice and fairness regarding social security payments, for pwME and many others.

F-kassan har en vidrig syn på oss som är sjuka ("[The Social Insurance Agency] has a disgusting attitude towards sick people")
https://www.expressen.se/debatt/f-kassan-har-en-vidrig-syn-pa-oss-som-ar-sjuka/

Recently there has been some debate here in Sweden about whether expressing one's own suicidal thoughts and feelings -- in response to unjustly and repeatedly being denied social security payments -- could reasonably be classified as threats and verbal violence towards the Social Insurance Agency staff, or not...

https://twitter.com/user/status/1221188814821044225

 

I'm sorry what in the what now? What is this insanity? This is how you get people to light themselves on fire on live television. Do they want people to light themselves on fire on live television as the only way to make a point by attempting to penalize people literally begging for their lives? That's even more psychopatic than charging people assaulted by police for bleeding on their uniform.

The banality of evil is so damn banal. And dumb.

 

Several posts moved from
Concerns about craniocervical instability surgery in ME/CFS

Connecting ME with neck injury doesn't seem to do the ME debate much good here in Norway. Here's another followup article.

MD and judge for the National Insurance Court Georg Espolin Johnson says ME is a fashion diagnosis for fatigue and ailments people always have had. He says psychological mechanisms largely contribute to the illness picture we today call ME. He doesn't reject that research might show that some ME incidents might be due to neck injuries, but in that case it's anyway a minority.

That mental processes in some cases can cause severe bodily reactions, is not more odd than than the immune system can do the same with severe allergies, he says. When you reject that complex psychological mechanisms can maintain chronic fatigue, or other chronic ailments, you remove many people's chance to get help, and you halt research and development of treatments that can help many patients.

When asked if you can think yourself healthy from ME he says that it can be very difficult. Maybe it involves taking big life decisions, to change the constraints of one's life. Changing partner. Move. For some it might involve less worrying, learning to care less. Use the body even though you've been bed bound for four years. For some cognitive techniques helps, for others not.

A representant for the Norwegian ME Association is also interviewed. As is prof. Wyller who says among other:
- Research shows more and more clearly that ME is due to both bodily and mental processes. ME gives considerable bodily ailments, and no one must doubt the patient's descriptions. Their experiences are of course real, but that something is perceived bodily, does not mean that the illness is in the body. You can have an overwhelming feeling of fatigue, pain in a hand or influenza, because the brain erroneously perceived the body as ill.

He continues:
- Because the brain is connected to the body via numerous nerve threads, mental techniques can also lead to real changes in the body, also for some ME patients. No scientific documentation has proved any negative effects. Therefore all patients should try.

And further:
- Gradual exercise is what's needed to get better, even if it hurts in the start. It feel natural for many patients to quit all activities, but in the long term this is unfortunate.

And towards the end of the article Georg Espolin Johnson summarises:
- Many incidents in life influence how we are doing. But how these strains influence you physiological, your nervous system, your hormones, your immune system, we still know little about. Maybe we'll never figure it out. But nevertheless we have research results and numerous testimonials that different types of cognitive approaches may have very good effect. I don't know any scientific support for the claim about frequent and severe increase of symptoms.

VG:Kaller ME en motediagnose
google translation: Calls ME a fashion diagnosis


ETA: This was just a summary of the article with a few quotes. You can read the whole article by following the links-

 

It is interesting that even Google translate appears to have, and express, a view on George Espolin Johnson. Couldn't have put it better myself.

It must be considered unusual for a serving judge to express his views in such a way. One might expect his judgments to be appealed on the basis of this.

 

that's just an admission that he hasn't read much about ME, at least nothing apart from the bPS proponents.

 

The subheading for that article reads:

"Før fikk folk whiplash, nå har ME i stor grad overtatt. Idehistoriker og lege Georg Espolin Johnson mener ME er en motediagnose for utmattelse og plager noen mennesker alltid har hatt."​

Google Translation:

"Before people got whiplash, now ME has largely taken over. Idea historian and physician Georg Espolin Johnson believes ME is a fashion diagnosis for exhaustion and troubles some people have always had. "​

also from the article:

"Espolin Johnson mener leger gjennom flere hundre år har hatt tendens til å tro at enhver plage må ha en årsak som medisinen kan forstå og behandle.

"– Borreliose, whiplash, fibromyalgi, ME, kronisk soppinfeksjon, amalgamsyke….alle disse diagnosene er diagnoser som gir uttrykk for årsak til plagene. Selve plagene er i stor grad de samme, men forklaringsmodellene varierer med tiden, sier legen, som også er idéhistoriker og trygderettsdommer."​

Google Translation:

"Espolin Johnson believes that doctors for hundreds of years have tended to believe that every ailment must have a cause that medicine can understand and treat.

"- Lyme disease, whiplash, fibromyalgia, ME, chronic fungal infection, amalgam sickness…all of these diagnoses are diagnoses that express the cause of the ailments. The complaints themselves are largely the same, but the explanatory models vary over time, says the doctor, who is also an idea historian and social security judge."​

 

"idea historian and social security judge", Espolin Johnson, sounds like the Norwegian twin of the U.S.'s Edward Shorter.

 

Oh, he forgot to mention wandering womb.....

 

A fine example of balanced reporting..... Interviewed, but didn't report what was said. Moves straight onto as is Prof Wyller whose views are reported.

 

Perhaps it is a mistranslation and was meant to say that his ideas were historic.

 

Sorry about that. I made summary of the content of the article, and had to choose what to include. What the representative from the Norwegian ME Association said was very good, but members of this forum already know the arguments, so I skipped them in the summary. You can read what she said in the google translation.

 

A great opinion piece from the Norwegian ME Association, from the same person who also was interviewed in the recent ME articles in the newspaper VG, Trude Schei.

The debate contributes to transferring responsibility to the patient, because if you think that the patients can recover by their own efforts if they only want to, there is no need for more research or a proper health service.

The consequences for the patients are disastrous.

Trude Schei: Skadelig fremstilling av ME
google translation: Harmful presentation of ME

 

According to he’s resume, Espolin Johnson have some clinical experience from the 80’s, but he is mainly an “insurance-guy” and later an historian who likes to tell personal stories.. It is very disturbing reading he’s attitudes and views on what he calls “fatigue”? No wonder it is all really messed up, and it is hard to believe that he has any clue at all about ME. This is the meaningless “fatigue” smashed all together, no knowledge whatsoever, just personal opinions.

He was a medical judge in The national insurance court 2002-2015.

Nowadays giving advice to the Norwegian labour and welfare administration, pushing and promoting LP. The heart of public institutions getting drowned in pseudoscience and in many cases harming patients.

This is one major thing gone horrendously wrong. There are so many others, that there only are to suitable words left: public inquiry

Maybe a lot to ask, but how many more testimonials of ideological and attitude driven bullshit do we need now? It is long overdue to start asking some really though questions to Johnson and others.

 

I’m ignoring people like GEJ.

What hit me hardest was the Newspaper’s choice to illustrate the article with a picture of the patient case from the day before. In an article that is pretty far from what she must have intended to spend her limited energy on...

 

Wonderful news! The ME research team at Haukeland university hospital (including Øystein Fluge and Olav Mella) and the university in Bergen is receiving 4.7 million NOK (38 8200 GBP/500 000 USD/460 000 EUR) from The Kavli Trust.

The Kavli Trust has kept the research work afloat for many years and it's great to see them continue their support.

Here is an article about the allocation from the trust:

- We believe that this is often a reversible disease, says Øystein Fluge, professor and senior doctor at the cancer department at Haukeland University Hospital. Together with Professor Olav Mella, he leads the research group for ME / CFS at the hospital in Bergen.

- But we still lack important knowledge about the disease. We see a great need for research on both disease mechanisms and possible treatments, ”says Fluge.

...

Overall goals for the research group over the next two years:

• increase knowledge of disease mechanisms and possible biomarkers of ME / CFS
• clarify the role of immune cells and possible autoantibodies play in the disease
• contribute to an evidence-based treatment program for patients with ME / CFS

The support from the Kavli Trust makes it possible to carry out advanced experiments in the research laboratories. The experiments focus on, among other things, energy metabolism, gene expression in purified immune cells, and autoantibodies in patients' blood.

Kavlifondet: Ny støtte til forskning på ME/CFS
google translation: New funding for research on ME/CFS from the Kavli Trust

Here is the Kavli Trust on social media if you want to say thanks:


Twitter:
https://twitter.com/Kavlifondet

 

Yes, that’s pretty unfortunate for her. But I guess running a story on possible craniocervical instability surgery and crowdfunding and ME in a major newspaper, sparks all kinds of reactions. It is a given that this sort of story creates a lot of noise and mess.

I agree on the strategy of ignoring when it comes to people like Johnson, if it wasn’t that he holds quite a powerful position. Don’t know how one should react to his bluntness. He reveals a very non-scientific, very anti-humble and hostile approach. But what else is new..? The only good thing here, is that he’s not holding back, opens up for the whole world to see what’s going on. Perhaps some reasonable people will ask, - what is this? Is this guy dictating the approach of the welfare administration solely based on personal opinions and fixed ideological ideas? Guess who needs a long intensive course of LP?

 

Ultimately that's the only thing that truly matters and yet it is barely part of the "debate" over philosophy that patients could not care less about. The usual obsessions of BPS/FND proponents are basically an inverse list of the needs and priorities of patients. Even with this, this absurd philosophical split, a mere academic issue of little to no importance, ranks at the bottom.

Frankly any other argument is superfluous to the fact that real-life outcomes are a complete disaster and that enough time has passed to completely write off the current psych-based approach as a failed experiment that willfully sacrified lives over a mindless philosophical debate forced by the only people who care about this philosophical crap and show callous disregard for the outcomes they are creating.

The BPS model was bullied through against explicit rejection from patients. It is objectively disastrous to patients. There is literally no other argument that matters here, we have real-life outcomes that invalidate the carefully selected and cherry-picked settings the BPS/FND researchers choose to invalidate objective reality with. It comes with a simple demand: show that the needle has budged. With tens of millions of sufferers, even a small change would be noticeable. Instead, it is actually going in the wrong direction, we are regressing.

So the first steps would be to find out more, to show the reality of outcomes in real life. I don't know what threshhold we need to reach to satisfy since the standard tools of prevalence and health-related quality of life confirm that absolutely no progress of any kind was made in the 2+ decades of this ideology used in clinical practice. Whatever follows, we need to be able to measure the real-life impacts in a way that allows to know with certainty whether the next steps are actually producing useful benefits. Patient outcomes or bust.

We know that this will invalidate the BPS/FND approach and this is the reason proponents will reject trying to measure population outcomes, who instead prefer to think of it as an individual process of self-realization, or whatever. This is not consistent with how we do medicine. If they want to have medical relevance they need to show medical significance in real-life outcomes.