Forskning.no (Norway) - ME-sick psychologist: I'm not the type to get ME, I thought

Forskning.no is a website about research for a general audience. ME has been debated several times lately, including research, the PACE-trial, psyche vs soma etc.

A while ago, a psychologist with ME wrote an excellent debate article about ME at forskning.no. But she used a pseudonym without clarifying this on beforehand. That resulted into a lot of noice and accusations as "fake psychologist" from the biopsychosocio-crowd.

Forskning.no has now interviewed the psychologist. They have also talked to the national center of expertise on CFS/ME (they talk mainly about psyche vs soma as usual; anxiety too is very physical, patients were active before they got sick) and with prof. Kristian Sommerfelt, child neurologist from Haukeland university hospital with over 20 years experience with ME.

The result is quite good. And I think it is great of Forskning.no to explore the different sides of the ME-debate and present it in an understandable way to a larger audience.

Forskning.no: ME-syk psykolog: - Jeg er ikke typen til å få ME, tenkte jeg
google translation: ME-sick psychologist: - I'm not the type to get ME, I thought

"What is despairing and threatening to the patient is that they are still being believed in various degree. With regard to certain other diseases, we are also very often dependent on what the patient tells about the symptoms, in order to diagnose. For example, this applies to migraines and epilepsy. There are no specific tests you can do to diagnose migraine, for example. Here the doctor trusts what the patient tells about symptoms.

Sommerfelt has often wondered why ME patients' symptoms and decreased function are not picked up on to the same extent.

 

This just proves why she had to use a pseudonym. The true militants are the psych crowd.

 

New article today at Forskning.no about ME.

Professor Kristian Sommerfelt and the national center of expertise on CFS/ME are interviewed again. This time prof. Wyller (biopsychosocio-researcher - has an ongoing trial on music therapy as treatment for ME and wants to do a trial on LP and ME) is interviewed as well. The article also includes a written statement from Øystein Fluge.

ME-forskningen er fortsatt preget av usikkerhet og uenighet
google translation: ME-research is still characterised by uncertainty and disagreement

Wyller believes it is well documented that the disease is a interaction between social, psychological and biological factors. He is quite tired of the fact that someone only relies on one-sided reasoning.

 

Music therapy torture as a treatment?

Has he ever met any sound sensitive ME patients?

Edited - I loved music. Can't sing or play a note myself, but always had music playing. Now I can rarely bear it. When I do occasionally give it a go I have to be really careful as it can fire me up too much (ok - I quite liked metal) and tip me straight into wired but tired.

Do you think they deliberately use forms of bith physical and psychological torture? Lots of us loved music and exercise, but can no longer handle both. Talk about rubbing your nose in it.

 

That's funny, I've never seen any evidence of it being a psychological or social disease. I have seen plenty of evidence of it being a biological disease.

 

Can I see this "documentation"? My expectation is something along the lines of a Chalder or Wessely paper presenting fantasy as fact.

 

If he needed documentation he wouldn't be a true believer now would he?

 

Can someone please diagnose Wyller, Wessely and Sharpe with schizophrenia?

They can't seem to decide whether ME/CFS patients are

a) Ambitious overachievers who push themselves too hard
b) Lazy deconditioned patients who are afraid of overexertion

The poorly conducted studies by these psychiatrists are clearly a veiled cry for help. We should be extending them an olive branch and be crowdfunding an intervention for these poor souls.

 

You forgot
c) vexatious militants

 

That's nearly true, but just needs a small edit to remove "one-sided":

 

There is no need for documentation because biopsychosocial is merely a truism. Every human experience is mediated by the biology of the individual, the psychology of the individual, and the social context in which the individual is embedded - and in turn can impact these in some way. You can add more prefixes if you want. Political-economic-bio-psycho-social; it's just as true.

What's actually important is to determine the relative weight of each 'factor' in causing and perpetuating the condition; intertwined with this is the ultimate question when it comes to treating an individual: "to what extent the condition is amenable to intervention at the level of each 'factor'?". I'm sure someone wiser could frame these questions more insightfully, but that's sort of how I see it.

These questions can actually lead to useful documentation (evidence). And as far as I can tell, ME/CFS cannot be usefully explained by psychological or social factors; neither is it treatable per se by psychosocial interventions.

Unfortunately, trumpeting the truism of 'biopsychosocial' actually serves to obfuscate the nature of the condition and misleads the research and policy agenda surrounding it.

Really in this context it's just a euphemism for psychosomatic which is a euphemism for hysteria. This allows governments and insurers to save money. See, it's political-economic.

 

So if an individual is impacted by their biology, biological solutions please. If an individual is impacted by economic / social factors, then economic / social solutions please. Since when did psychological solutions become the standard for fixing problems caused by social / economic / biological factors? Just by mixing them all up together doesn't mean everything can now be fixed with CBT.

Oh hang on, I'm being a tad unfair - the BPS model does propose some social solutions - removal of benefits / insurance payments and driving the ill into poverty and destitution. Well at least on most social (actually political) policies I get to vote every 5 years - where do I go to vote on the implementation of the BPS cult ideology?

Unfortunately it seems my diagnosis involves me being labelled a delusional terrorist and my vote, voice and agency being removed.

 

Which would seem to be a primary objective of the BPS crew.

 

I agree. Quacks through the ages will have exploited this by dramatically over-emphasising the impact on an individual, of the factor(s) they most want to practice their quackery on.

 

Well that's the other issue with 'biopsychosocial'; since it's all 'interconnected', psychosocial interventions are by definition biological. If you don't 'understand' this, you can be painted as some sort of bigoted ignoramus when you're actually only objecting to a euphemistic equivocation that is a frank perversion of our common language.

It would be interesting to trace the terminology and purported etiology surrounding ME/CFS and MUS that has been put forth by 'biopsychosocial' types. It really just seems like a treadmill of euphemistic, equivicatory linguistic mangling that is structured to antagonize dissent - patients, disagreeable scientists and politicians - while keeping most scientists and policy-makers either off the scent or drinking the Kool-aid; all for the purpose of preserving a certain entrenched agenda.

I'd also like to actually take a look at the original 'biopsychosocial model'; I suspect the 'biopsychosocial' being used regarding ME/CFS is a hideous equivocation of something that was really just trying to nudge people to 'consider the whole picture' - aka remember common sense.

 

I think this needs to be highlighted. More and more problems of any kind - economic, social, illness etc. - are individualized. Of course, there are interactions between an individual and the setting he lives in. That's why psychological "solutions" are applied to economic/financial/social/any problems of the individual. E.g. not stress itself is the problem - stress that is created by a demanding setting - you are the problem because of the way you handle stress. You only need to change this, and having a highly demanding stressful job, for example, or fighting with poverty due to illness or not finding a job aren't problematic anymore. You alone are the only problem. Strange that many people accept this "it's me, and I alone am responsible for everything".

 

This is a huge problem. I had discussions about this that strongly reminded me of discussions with religious people (here Chrisrians of a certain group).

Indeed, people who believe in the interaction between body, soul and mind - as it was called in the past - simply view it as a universal truth, and you are the unbelieving Thomas who needs to see proof of it because you lack a certain degree of "spiritual development". Alternatively, it's the devil speaking through you.

I am not talking about interactions between body and mind we can all experience daily; that's a trivial fact. I mean all the claims that go beyond what we can actually experience, see or proof - e.g. that by "healing" the "psyche" your body heals (always). Of course you should also be able to heal the body if you want to heal the "psyche", but that's too expensive, ahem, "spiritually under-developped".

For thousands of years, people philosophized about the connection between body, mind and soul and never found a closing answer. But today, some people erected some claims in which people simply believe - no more questions needed.

 

The BPS model has indeed been hijacked. At its core, it's a political way of looking at medicine. That is, it's intersectional (as we might say today), and considers the effects of discrimination and oppression upon the biological body. People aren't sick in a vacuum, but in a socio-economic context that may help or hinder.

Ironically (or perhaps not, since that's how politics work), it's been co-opted by social elites precisely to further oppress and discriminate. It's not inequality and injustice that exacerbate illness, but the person's own (deviant) behaviours. Those at the top of society don't keep you ill, or marginalise you for being ill, you marginalise yourself and willingly become part of an underclass that leeches off society.

In this version of the model, people are indeed sick because they're poor. But it's not the powerful to blame; it's the poor themselves for having aberrant beliefs and unhealthy behaviours.

More immediately: it also lets them pretend to offer treatment while actually they do nothing (CBT, GET, etc). You are merely given the (ineffective) tools to heal yourself. If it doesn't work, you're the one to blame, and not anyone else.

 

The editor sums up the debate. I had hoped she'd learned a bit more about ME recently, but no..

For outsiders, the biopsychosocio-approach seems a reasonable compromise between those who "believe" (her word) ME is physiological and those who believe ME is psychological. But it is not enough (particularly from a research news-provider) to present different opinions in a debate and not refer once to what research actually says..

The great work done in Norway on recognition and understanding and empathy for people with mental disorders is not visible in the ME debate. There are still mental explanations taken as insults or reductions of the condition.

That does not have to be, says those who are in favor of the combination model. The body is a whole, body and brain together make people sick. Because if it's the brain that produces chronic fatigue, does it make the pain less real?

ME-syke rammes av kranglingen til forskere og pasientgrupper
google translation: ME-pasients are affected by the arguing of researchers and patient groups