News from Scandinavia

Excellent article about ME by psychologist Grete Lilledalen in a Norwegian journal about psychology.

For in a psychosocial interpretive framework of ME, the patient's main problem is assumed to be lack of motivation and destructive symptom focus. ME sufferers say that debilitating symptoms are attributed to the personality traits the patient does not recognize.

This understanding is prevalent in several academic environments, although studies do not support hypotheses about neuroticism or negative thought patterns. Rather, new research shows that neither personality nor psychosocial factors are associated with the development or maintenance of the disease picture ( Ablin, Zohar, Zaraya-Blum & Buskila, 2016 ). But since there are no systems for implementing new knowledge, outdated attitudes and perceptions continues.

...

The easy part with ME is showing the patients trust - recognizing that their desire for improvement is genuine, relying on their experience, and initiating symptom relief measures. We as therapists must be able to relate to how sick the affected are and to endure what we do not understand.

Psykologisk.no: Kvinnen med kosten
google translation: The woman with the broom

 

Great article. Sober perspective.

This is really the gist: an illness model created in complete disregard for patient experience, in fact built specifically on rejecting it and assuming the very opposite of what patients say despite there being no evidence whatsoever justifying it. Fictitious models always fit because they are created specifically to fit. A model of gravity that posits objects are emotionally attracted to each other fits perfectly, that does not make it right.

Acknowledging failure, so rare:

To paraphrase Wessely: fewer anecdotes, more actual science.

However this:

is for later. Build medical services, address and remove the systemic discrimination, provide actual help and support, fund people who actually have good faith intentions instead of people motivated strictly by proving themselves right in complete disregard for outcomes, then work on those tiny margins. When someone is caught in a wolf trap, you do not provide support and counseling, you work on prying the leg out first and addressing the resulting pain.

The most amazing part of this simple fact is how many "skeptics" and medical historians and sociologists who know this are completely blind to the parallels, even aggressively insist that this time is completely different, despite the circumstances and arguments being exactly the same:

There is nothing complicated to it, even a child can be made to understand that doing the same mistake over and over again is wrong.

The foundational flaw in this disaster has been disrespect. Disrespect for basic facts, for agency, for the most basic act of testifying to reality and choosing to dismiss it on the most mediocre of all possible reasons: I, personally, me me me, do not believe you.

 

Good news: the Danish ME Society "ME Foreningen" is the recipient of 50,000 DKr (about US$7,400).
72 organistations were nominated. Two have won 25,000 each for their causes and three, including ME Foreningen, 50,000 each. A nice early Christmas present.
https://pfa.dk/news-archive/2019/12/12/12/52/brug-livet-fonden-kaarer-aarets-hjertesager/(Danish)

 

Why isn't the ME puzzle solved yet? They agree that the answer to the puzzle must be found, but that's the only thing they can agree upon.
This was the intro to a one hour slot about ME today on the radio programme Ekko, a programme about topical affairs sent by the Norwegian public broadcaster.

Unfortunately the result was mainly opinions instead of science, and despite good attempts from professor and paediatric neurologist Kristian Sommerfelt and the Norwegian ME Association, the biopsychosocial approach to ME was left mainly unchallenged.

I'm afraid the average listener was left with the impression that ME is "uncomfortable", but something you can improve with just the right amount of pushing through.

Here is a short recap:

The programme presented a family with a daughter who is 11 years and suffers from ME. The family received no help until they went to a rehabilitation center for children and adolescents with a biopsychosocial approach. The center gave the family some tools and advice - not focus too much on symptoms, push gently. The journalists had followed the family over a long time, and they had just spent several months in Spain and felt the daughter had been improving a bit. The mother expressed frustration of how inflamed and confusing the ME field is.
They have decided to believe that the patients themselves and people around them are able to influence the situation. They believe in a holistic approach, but are terrified of making mistakes. They push a bit, but not too much. Try not to "scan" for symptoms. The mother said parents can maintain the disease by focusing too much on it. They need to overcome their anxiety for deterioration, or that activity leads to worsening.

The editor of a news site about research, Nina Kristiansen, was supposed to be an objective voice, I guess, but she didn't have in depth knowledge about research into ME. She said researchers and journalists do not dare to touch the subject because it's so controversial. Scientists are harassed, patients say they are not believed. There's been a chase in biomedical research for solutions, but no results yet. They receive complaints every time they publish something about ME.
Many patients have bad experiences with the health care system. It's important to give hope to those affected.
So many patients have met so little understanding, and that's why they've become allergic to psychological explanations.

Professor Kristian Sommerfelt said PEM is essential for diagnosing ME.
Professor Vegard Wyller said patients are suffering, but he disagrees with strict diagnostic criteria.

Kristian Sommerfelt said that the most important thing when it comes to treatment is to not make matters worse. One needs to understand the concept of PEM. The patients must do what they can do, don't do what they can't do. When it comes to cognitive behaviour therapy, they're often already doing it by themselves. They are interested in getting started again with their lives, they don't talk much about symptoms.
The biopsychosocial approach applies to all illnesses, but there's nothing indicating that it implies particularly much to ME. Prolonged fatigue without PEM is something other than ME. Biomedical research is crucial.

Vegard Wyller said that cognitive therapy does have effect in ME, but it's wrong to start it up by yourself. That's downgrading psychological competence. He agrees patients feel worse if they exert themselves, but sometimes you have to do something that goes beyond what you experience as "unpleasant".
ME is basic biopsychosocial. The prognosis is very good if you get good treatment.

Henrik Vogt appeared for a few minutes talking about Recovery Norge. His organisation consists of people who have recovered from ME and other MUS. Their main goal is to get people to listen to those who have recovered, and to create hope.

A board member of Recovery Norge is Marte Jürgensen. She is a psychiatrist who used to suffer from ME. She participated in RituxME, but dropped out after two treatments. She later was told she had received placebo. She went to psychiatrist Stubhaug and underwent his mindfulness/GET/stress treatment for ME and recovered from that. She's been well for 10 years. She says it won't be useful to push anyone into that treatment. It's essential that the patient dare to hope they will get better, dare to take the leap.

Is Lightning Process quackery or the solution? Short interview with coach Live Landmark who used to suffer from ME. She is described as not a health professional, but member of a research group. She says 9 out of 10 report positive changes due to LP. More research is needed. A participant is interviewed. She suffered from ME but is now feeling much better. She is still much better many months later and will start studying next year.

Wyller says LP har gained a stronger theoretical rationale, but that doesn't mean that everyone has an effect. LP is very interesting and positive. He wanted to do a study on LP, but didn't get any funds because the Norwegian ME Association is against him researching it (this is incorrect).

https://radio.nrk.no/serie/ekko/MDSP25024919/16-12-2019

 

This can explain so much of why the cabal believe they're on to something. Vague general mild symptoms and poof presto you are healed. Start the gravy train.

 

Well, at least you have some debate. I doubt such debate would be allowed in the UK. My impression is that the BBC have firm instructions from Wessely in person not to stir up trouble.

This is an interesting misunderstanding that seems to be common amongst journalists - the confusion between psychiatrists getting complaints for doing poor research and biomedical scientists, who of course are not getting complaints. But the last bit seems right - patients have become allergic to psychological explanations not so much because of beliefs but because they have met so little understanding from psychologists. In other words it is clear that psychologists do not know what they are talking about.

 

Yes - Wyller talked about a fatigue spectrum as a preferred opposite to strictly defined ME. And when he talked about PEM as feeling discomfort, I'm beginning to wonder if he might be even more clueless than I'd thought.

 

Ah - I'm sorry. What she meant was that her news site received complaints every time they publish something about ME. These notes were taken in a hurry..

But yes, it is otherwise a common misconception that only psychosocial ME research receives critique. It's actually a bit odd that point wasn't made yesterday..

And I agree ME patients might have become sceptical of psychological explanations, but she also implied that psychological approaches/treatments might have been effective if it hadn't been for that "allergy" from patients.

 

@Kalliopse what a horrible program. It's no wonder it's so hard to make progress when these quacks are constantly lying and hyping their probably no better than placebo treatments.

 

The radio show sounds like the standard spin - ignore the complicated problems with the problems with the research being criticised, and instead present a simplistic narrative or 'controversy' over 'psychological' approaches that relies on anecdotes. Probably done by people who think they'd making a good effort to cover a difficult topic and would be insulted to have it viewed as propaganda.

Maybe I've filtering this through my own frustration that most people can't be bothered to look at the details and try to get to the truth?

 

If only that were true. It's categorically not, we fundamentally disagree on this point, with the BPS side being explicitly that there is no point in figuring anything out and just trying to "rehabilitate". The ME-BPS "thought leaders" always complain and belittle research and work entirely separate from the actual research community, do not engage at all with researchers because they have a fundamental ideological split with reality.

The puzzle isn't solved yet precisely because of those saboteurs. This is 90% of the story so far, with the remaining 10% being down to the sheer complexity and difficulty of the problem. Unsurprisingly, having people in charge who do not want to solve a problem and take steps at every turn to obstruct any effort in that direction leads to problems not being solved. Shocking, I know.

People getting complaints is not harassment, it's ridiculous to continue with this trope. Incompetent people who are failing in their job deserve to be the subject of complaints just as much as those complaints deserve to be evaluated, which has never been the case. The substance of those complaints is very consistent, across time and geography, and in fact is very much the same as the fact that patients are complaining about being disbelieved and receiving abysmal support and no adequate care.

The roster of guests is abysmal and clearly no research went into the making of this show, this is pretty much journalistic malpractice. So, the usual. Goes pretty well along with the medical malpractice that is the standard of "care". In some ways, glad to have these fools on record for the future. I don't know what happened to the biggest proponents of phrenology at the time but I don't think their career ended particularly well.

 

Well, as we here all know -- there is nothing quite like personal experience of ME and trying to expend energy we don't have to clear up any misconception in that regard (what PEM is and how it affects our functioning).

Maybe he'd accept a blood transfusion from one of us?

Actually now I mention it, would that affect a healthy person and has it happened to anyone? A question for another thread I expect.

 

I think this is something the ME community should be conscious of, both generally in crying wolf so often one gets turned off but also specifically with journalists. They make their living from making/reporting stories and complaints can be a bit like reporting an employee to their employer. Also often it can be possible to praise some bits rather than just complaining.

 

The BPS cabal would like very much to spread this misinformation. I suspect that in the past some bio research was greeted with perhaps less scepticism but that certainly is not the current climate of the social media active among us. It's just a convenient point score in saying that as it convinces them of their own delusion on the point of our antipathy toward their ideology of ME.

I'd like to think that when all this is done and dusted (there is an appropriate generally recognised treatment for ME) people will find it hilarious (perhaps with equal part horror) to look back on the delusional thinking that went into the beliefs of the BPS cabal. The illness they are treating is a pretend entity of their own making.

 

Helsenorge.no is an official website about health run by the Norwegian Directorate of eHealth, a sub-ordinate institution of the Minstry of Health and Care Services.

In their presentation article about ME, they link to the "patient" organisation Recovery Norge - which on their website has collected 78 patient stories about Lightning Process.

The news site ABCNyheter has an article today where lawyer and expert in social security law Olav Lægreid strongly criticises that Recovery Norge is linked to and that the Norwegian Labour and Welfare Organisation (NAV) seems to suffer from the delusion that such approaches can treat ME.

He suggests Helsenorge (Health Norway) changes its name to Heksenorge (Witch Norway) if they continue to pass on information about alternative treatments.

From the article in ABCNyheter:
He emphasizes that the causes of ME are unexplained as of today, and believes it is very unfortunate that the Directorate of e-Health links to such an alternative organization.

- The Directorate does not do this when it comes to other diseases, such as cancer or dementia.Linking to someone who promotes what can at best be called alternative treatment is to go very far. It is not the job of the government.

The lawyer therefore believes there is reason to question that the Directorate perceives a link to Recovery Norway as relevant on the website.

- Lightning Process, which Recovery Norway promotes, means presenting an extremely simple solution to a difficult problem, which today also has no verified medical explanation.

- The criticism of the way the e-Health Directorate links to this website is that they not only choose a side in an ongoing debate, but that they market a solution to a problem that is not yet solvable. There is no recognized treatment for ME. That's according to the national guidelines, he says, and continues:

- That is why it's astonishing that the Directorate for e-Health promotes a cure for ME that the Directorate of Health cannot at all support. Here we have two state directorates where one promotes shamanism and quackery and the other relates to consensus-based information on ME.


ABCNyheter: Advokat reagerer på lenke på helsenorge.no: - Foreslår at nettstedet bytter navn til heksenorge.no
google translation: https://translate.google.com/transl...QEs5tYhU0oBCom1Gq26wPbTsGt_FENoNAMBKNvc-ap-2w

 

An interesting and justified initiative.

 

Finally a person that isn't afraid to say how things really are.