Norway: Opinion piece by prof. Saugstad: Give ME patients help that works

Sten Helmfrid comments the LP coach's reply to prof. Saugstad's opinion piece.

https://twitter.com/user/status/1219877533442805760

https://twitter.com/user/status/1219877634630455296

https://twitter.com/user/status/1219878232914366464

 

I wonder what the Norwegian health authorities who promote Landmark think of the very scientific position of "you can't prove that this mumbo-jumbo doesn't work therefore we should assume it does". And how does it differ from claims that you can't prove that homeopathy, astrology and telekinesis have never been proven to be impossible either. You can't prove that my tiger-repelling rock doesn't work and there are clearly no tigers around therefore it obviously works.

Not that they are bothered by Parker and his Tarot diagnosing healing hands divination but as a generic position it is basically a blank check for every pseudoscience out there to use the same basis and demand their claims be taken as fact since they can't be disproven.

Because it's one thing to have someone make those claims, it's a whole other problem when those claims are promoted by public health and medical authorities, used in clinical practice despite there being no evidence precisely on the basis of "well, you can't prove it doesn't work or that it will never work".

Given Landmark's influence in Norway, to the public but also clearly to medical authorities, is it worth bothering to get people on the record on this, @dave30th? Not that I expect a serious response....

 

I guess the health authorities haven't gone into any of the details of LP, and simply trust the national competence center for ME when they say all ME patients should be offered this, and also trust prof. Wyller when he says LP is basically the same as CBT. Landmark has behaved as a medical expert in ME, and been treated as one.

 

Would it be possible to make a LP equevalent? Give it an equally pop-self-helpy name, have the same way of getting positive testimonies (making people say they are recovered even if they aren't. Maybe we could collect more testimonies than LP has even). The method could be walking around in circles with a book on your head and whisteling or something like that.

Then we could try to ask the national competence center to promote this course on the same grounds it promotes the LP.

 

Prof. Arild Angelsen and Trude Schei from the Norwegian ME Association has written a reply to the Lightning Process coach.

They criticise her claims that GET and CBT are effective treatments and points to the Norwegian ME Association's surveys presenting ME patient's experiences with the treatments. They express happiness on behalf of everyone who has improved, but emphasise that it's problematic when individual stories are generalised, and when undocumented and potentially harmful treatments are forced upon sick people with the rationale that the treatments are considered appropriate in some professional environments.

Noen behandlingsmetoder er skadelige
google translation: Some treatment methods are harmful

 

re "new biopsychosocial model".

hardly new (30+ years) and has yet to be proven to be right, but many aspects of it have been proven to be wrong.

 

I'm not sure what's worse for a public health authority: to knowingly promote a quack who claims to diagnoses people with Tarot and uses psychic energy, or whatever, to heal with his hands, or to do it unwittingly.

I guess we'll find out soon enough how that goes. I'm sure it will not have any impact whatsoever about trust in public health authorities. I wonder if the politicians who sponsored the resolution are aware of this and if this concerns them.

 

Prof. Saugstad's opinion piece resulted into a segment about ME in Dagsnytt 18, a daily radio programme debating news and other current affairs.

Ingrid Helland, senior doctor and leader of the national competence service for CFS/ME, and known for promoting Lightning Process and biopsychosocial approach was in studio as well as Ola D. Saugstad.

Here is a transcript hastily made by me. (In English there is a difference between "disease" and "illness", we use the same word "sykdom" for both and for this transcript I went for "illness").


Radio host: Approximately 15 000 people in Norway suffer from the mysterious illness CFS/ME - that is Chronic Fatigue Syndrome also known as ME. Researchers have not been able to determine the cause of the illness, nor found any cure. Which again leads to a debate about what kind of treatments these patients should try. Professor emeritus in paediatric medicine Ola Didrik Saugstad, you wrote in an opinion piece here in NRK that these patients must receive treatment what works. What kind of treatment is it you mean they receive that doesn’t work?

Saugstad: Well, I wrote that there is no good treatment that works. That was one of my points. A main point for me was to point towards the considerable amount of biomedical research results that are now coming from USA. And that this might give hope for both a test for ME and a treatment in the future. One of my points was that we unfortunately don’t have a good treatment for ME today.

Host: But then there is perhaps other treatments they receive that doesn’t work, that you also point to.

Saugstad: Yes, there are several who mean that for instance cognitive behavioural treatment and similar treatments have effect. There have been reports that points in that direction, but when these studies have been reanalysed, there is little effect found from such treatment. There came a summary five years ago from the American Department of Health where all these reports had been gone through, and almost no effect from such treatment were found. I therefore mean it is wrong when Norwegian health authorities and other bodies tries to pressure patients into that kind of treatment, when many of them say it makes them worse.

Host: Ingrid Helland, you are a specialist in paediatric neurology and lead the national competence center for CFS/ME at Oslo University Hospital which is the expertise the Directorate of Health leans on when they develop their guidelines for how this should be treated. What do you believe is the correct treatment of this illness?

Helland: First of all I want to underline that we still don’t know the cause of CFS/ME. It’s possible that the factors are complex which is part of why the illness develops. We must be open both for biological factors, psychological and social factors that may play a role for why the illness appears and why it persists. But at the same time I have to say I agree that there are no documented medical treatment that helps the patients.

Host: What kind of treatment to give depends of course on the cause of the illness. You say it’s important to say it’s a physiological illness, Saugstad. Why is that?

Saugstad: Because that fits so much better with the patient’s symptoms, in my opinion. Another main point I made in the opinion piece in NRK was to try to summarize some of the latest results. What I think is very exiting is that there are three studies, two from Japan and one from USA, and perhaps more as well, that is pointing towards that these patients have inflammations in the central nervous system and other organs. Then you have to focus the treatment towards these symptoms.

Host: Then one may ask how cognitive treatment should be helpful, Helland?

Helland: I support you that we during the last years have gotten much more knowledge about what happens in the body with this illness. But we still don’t know the cause. When it comes to cognitive behavioural therapy, it’s true that there is limited effect from this kind of treatment. But at the same time we know that psychological approaches to all patients with chronic severe illnesses may be useful for the patients. It can give an increased level of mastering, increased level of predictability, and can help the patients with symptom relief and to feel better in their every day life.

Host: But there aren't many other neurological or chronic illnesses who receive an offer of cognitive behaviour therapy?

Helland: I don’t think we should spend so much time on cognitive behavioural therapy, specifically. There are many other cognitive support therapies.

Host: Ok, but cognitive therapy then, or psychological help. There aren’t so many other illnesses where this is part of the treatment.

Helland: Gradually there are more.... Health psychology is a field in big development. And we see that many patients with chronic illnesses, like diabetes, rheumatic illnesses, chronic obstructive pulmonary disease, heart failure.. Many in these patient groups have big benefit from a cognitive approach. I also have to say that as with all other long term severe illness, there are patients that develops both anxiety and depression. In the CFS/ME group it’s approximately 30%, with these secondary symptoms. It’s important that these patients receive help with these afflictions, in order to in larger degree be able to start the rehabilitation process.

Host: And we know that the body affects the mind, and vice versa. Why is it so important to determine this is a physiological illness?

Saugstad: I don’t disagree with Ingrid Helland that mastering techniques can be of use for patients, not just ME patients. But this is mastering techniques. You don’t recover from it. What I think is wrong here in Norway in my opinion, is that patients are forced into these treatments. There have been big surveys in Norway and England, showing that perhaps 50%, 30 - 50% of these patients feel that they deteriorate after having been forced to undergo cognitive behavioural therapy. We can’t have a society or medical care where people deteriorate from a treatment they are forced to undergo. I’m happy that Helland supports my view that these techniques don’t make the patients healthy again. That has been one of the reasons for the polarisation, as these patients feel they’re criticised because they are still sick. One is told that one can think oneself healthy. It’s up to yourself to recover, and if you don’t get better, it’s because you don’t want to get better. And this is very hurtful for these patients.

Helland: I agree that one can’t think oneself healthy. One can think oneself strong, of worth, and that may be helpful in a rehabilitation process. And I also think that in order for such an approach to have a positive aspect, it must be an accept from the patient. It’s no use to be forced into a treatment like that. There has to be a good relationship between the therapist and the patient in order for this to have a positive effect.

Host: This debate has been going on for many years. Are there any danger in viewing this as a physiological illness, do you think?

Helland: It’s not dangerous, but I think it’s important to see the whole patient. Both biology, and also to look at social factors that can contribute in prolonging the illness process or hinder recovery. We have to look at everything. But it’s very important to consider the body. The illness belongs to somatic medicine, to traditional medicine, not psychiatry. But we have to see the whole patient, including psychosocial factors.

Saugstad: I agree we must see the whole patient. But if you have a patient with pneumonia. We know that stress can make the immune system worse, but we don’t start there. We start by giving antibiotics. We treat it, and then we can support the patient in other ways.

Host: But it’s hopefully not a chronic pneumonia. It’s a bit different, perhaps.

Saugstad: There is a parallel.

Host: You also have a family member with ME. How has that influenced your view on this illness and how the society views it?

Saugstad: Yes, I’ve recently written a book, where I also write about ME and my background. Since you ask, I want to emphasise that my engagement for ME, is first and foremost a result of through 25 years having met hundreds, perhaps thousands of ME patients. And I have seen how horrible this illness can be, how much they suffer and how little help they receive from the health care system and other bodies in this society. That’s the reason for my engagement.

Host: And that hopefully they will get better treatment and medicine and everything that’s needed, I’m certain you both agree. We have to finish now and thanks to both of you.

 

This is quite a bit more limited in scope than any previous writing or speaking on the subject of CBT. IMO though it is still overstated as to efficacy.

So a big benefit then. That benefit being? I've never heard it stated. And she's talking about secondary issues ie depression which we know is a nebulous concept and possibly overstated.

I agree that people should not be forced (although I think the BPS cabal would still prefer this even as they would refuse to call it that). It seems never to have occurred to CBT therapists that some people may have already mastered techniques of living well outside of being ill that they can apply to their illness state. Chronic illness can present special challenges to our sense of worth etc. But this again is very different from what has been explicitly offered previously.

And as usual the social aspect is mentioned but only to de-emphisise the biological aspect. Never ever have I heard anyone from the BPS cabal say anything close to specific on the subject of social aspects. And since it's left so vague it is open to interpretation as to what is really meant. In other words, blame the patient they are ill because they are anti-social could fall into this meaning when not explicitly stating otherwise.

 

I'm not convinced by Helland's rhetoric today.
Even though she admits there are no effective treatments, she still hints to somehow activating a rehabilitation process.

She's said in other connections that most of her patients recover - so I guess that must have left her with the conviction that recovery is fully possible and in the patient's own hand (as there are no treatments per se).

 

I’m so grateful for Professor Saugstad’s engagement. I like that this was on the radio. He makes good statements and Helland seems to have none...? Other than ‘the psychological factors are important because I say so’.

 

I think I definetly have developed something like anxiety and depression. My mental state has been worse than I thought possible for a while. Mostly I’m just so traumatised by the norwegian healthcare system.

I had a horrible experience seeing a psychologist last year.

One of the reasons I wanted to see a therapist was to talk about my close friend with ME who had severe suicidal thoughts, which was giving me what felt like panic attacks. I told her I did not want help with ME at all, because no psychologist can help me with that, I wanted help with things like anxiety, trauma and feeling too vulnerable.

I was not allowed to talk about any of the traumatic things or emotional issues I wanted help with. Everything I wanted to talk about was just overthinking and ruminating according to her, which she said was the cause of my ME. She told me her goal was to get me to not listen to my own thoughts anymore. Not helpful when I’m traumatised and struggle to feel like anything is real anymore, have no sense of self and don’t trust myself or my opinions.

I just needed someone to talk to after years of suffering alone, but I wasn’t allowed to talk.

In the sessions she mocked me, made fun of my fears, talked about things completely unrelated to my needs, like my «fear of activity», constantly policed my language and word choices, tried to twist everything I said against me, tried to put words in my mouth and attributed a dozen characteristics to me that were inaccurate. This is what happends when you think the way to fix a patient is to make them stop believing what they’re thinking and feeling.

Let me tell you how difficult that is when you’re abused, gaslighted, disbelieved, not allowed to speak for yourself, refused the help you need to get by, mocked in the papers by the people who claim to want to help you, forced into treatments that make you worse. And never, not a single health professional you meet along the way will even slighly ackowledge the seriousness of your illness, the reality of PEM or that it isn’t your fault that you’re ill.

And the abuse you’ve suffered will of course not be aknowledged either.

The people with a psychological focus on ME seem to care the absolute least about my emotional well being. They say psychological factors are important, but I doubt many patients are getting any useful help there either.

And things like anxiety and depression might develop less in patients if we were treated with more respect and care, and not bullied into this psychosocial nonsense.

I have never felt less seen than by psychologists and LP coaches.

If they want to see the whole patient, why won’t they listen to us? Our stories, our experiences in this health care system. They say psychological help is important in chronic illnesses. Okay, but how is that actually working in reality for the patients? In my experience, completely disasterous.


I was so distraught after the experience with this psychologist. I wanted to report it to someone but I couldn’t figure out where. Who would actually listen to me, about how I thought it was wrong that the center my psychologist worked at had hired a LP coach, or that the psychologist tried to cure me by fixing my «fear of activity» and «wrong thinking», when the national health competence for ME regularly states that LP and CBT is important for ME. To me it seemed like my psychologist was just acting according to the view of the competence center.

And that was the scariest thing about the whole experience. The people that are hired to help us in this system are just letting the abuse continue, actually encouraging it. Maybe they don’t realise this. Maybe they don’t realise what actually happens at LP courses or between patients and psychologists, but they would if they listened. I think one the most important jobs of a competence center should be to listen.

 

I just do not understand how that can be an effective technique for anything. The only thing that can possibly achieve is to undermine a person 's confidence.

I'm so sorry you were out through this @rainy. This is abuse. Pure and simple.

 

Does anyone know how I could report something like this, to someone that actually listens and doesn't just file it in a dark place? I really want to contribute so that this sort of thing doesn’t happen anymore, but my heart can’t handle it if I’ll just be dismissed or told that this is the correct way to treat ME patients.

Like the fact that that center has hired a LP coach seems like something that should be illegal to me. And so unethical no one would even consider doing it.

 

This is just a general comment. There is such a thing as rumination and too much can be a problem. I don't think we should categorically dismiss the possibility of thought pathologies.

This is not directed at @rainy. I also suspect that any thought pathology is likely way over diagnosed. It's all too easy for the therapist to go there as the first option.

CBT seems to have become so broad in focus and execution as to make it meaningless. Its utility was always rather narrow and limited in the past. At least that's how it seems to me. Phobias being the main example.

It's almost as if therapists increasingly don't want to put in the time and effort to at least try to be truly helpful.

 

What an awful experience @rainy. Hope you can find better help elsewhere. I don't imagine you feel up to braving a different therapist any time soon - though I'm sure there are better ones out there somewhere - but just somebody understanding to talk things through with

Maybe there's a Norwegian ME patient organisation that can point you in the right direction?

 

I'm so so sorry you've been treated so appallingly What a nightmare, it makes my blood boil

In Sweden there is Patientnämnden, and
IVO (results vary, sometimes/often/? they just file it away in a dark place, but sometimes they actually investigate and get involved). There are also anti-discrimination organisations (government funded) that can help with things like this, to represent you and help you find out where and how to file your complaints, to explain the laws and the rights you have etc -- free of charge. Is there anything similar in Norway?

ETA: Personally I feel it's important to file complaints and let the system and the people in power know what's wrong, to give it a try, even if maybe it often seems like no one cares.

I believe it does matter, it can make a difference to -- if nothing else -- create a paper trail and make things like this show up in their statistics. If we file reports we at least have a chance to make sure things like abuse and harms don't stay invisible. They seem to care a lot about their statistics (if not people, individuals), and if the numbers are in there they can't say it never happens, they can't say it doesn't exist.

 

@rainy you can try reporting it to the new service Ukom (ukom.no)