Tjenesten og MEg | The health service and ME, Sintef FaFo

You appear to be saying that that maybe there is some psychotherapy, done the right way, that works.

I on the other hand think that the fact rubbish is the best anyone could come up with in 30 years shows that this direction of research is a dead end.

There also doesn't seem much wisdom in the position that maybe something works even if there's no good reason to believe it does, just because one cannot definitely exclude it.

 

To me, the problems surrounding ME/CFS seem to stem from people going beyond what the evidence shows. At the moment, we can't know whether or not there may potentially be some form of psychotherapy/rehabilitation that would be worth funding for ME/CFS at some point in the future. The problems we've seen within the research culture surrounding rehabilitation and ME/CFS makes me think that no further funding should be provided here until a dramatic change in culture has been achieved, but who knows where we'll be in 30 years time?

 

@Kalliope. What do we know about the authors Anne Kielland, Line Melby and Arne Backe Vegetables.

It seems to me that they are very confused about the meaning of the concepts they use.
As pointed out even the 'purely somatic' originates in the body. So when we talk about ME the issue is whether or not anything about the illness is under our control to change the outcome through CBT or not.

This can be true of somatic symptoms as with (for obvious/common example) the fear of spiders or snakes. CBT acting as a form of desensitisation.

So, by the authors calling the BSP position extreme with regards to how they are viewed by ME patients they are implying at least that there is some middle ground or 'third way' of viewing ME treatment.

But the question is really binary as I see it. Either CBT works (in this case I'm not referring to management assistance) to alleviate symptoms and change the course of illness to one of health and recovery or it does not.

I can only think of one example which I could imagine anyone thinking that it might be amenable to 'thought process' change. That would be to do with the sensitisation hypothesis (HPA axis) which has been proposed (for ages and without any confirmation).

I think so long as we are stuck with this hypothesis floating around confirmed only through the constant repetition that this is the central issue we will continue to see this vague unclear thinking from some (possibly) well meaning people.

And it may be that the HPA axis theory has some part to play but IMO decades of experience has taught me that if it is a downstream problem that it is not amenable to change because it is not the central problem.

So how does tempering a somatic view to 'less extreme' provide even a small tiny fraction of help for pwME?


So as in the case of the spiders and snakes can CBT work to convince us not to be afraid of doing exercise in a controlled but ever increasing way? That is the question. Or do they imagine some other way in which CBT should work for pwME to alter the course of the illness? If so, what exactly?

And what part of the illness or which symptoms are the somatic symptoms. All of them? Some of them? How do they know this.

Do they think CBT works outside of the standard model of changing behaviours and attitudes (as in phobia example). Is there supposedly some property that affects organic illness?

Apologies if some of this is muddled. After writing I was not able to really read it for clarity.

 

It doesn't, but it means more jobs for CBT therapists.

And by I mean it doesn't, I mean there's no credible evidence any treatment to be found in the psychological direction is more than a pleasing sham therapy.

 

Exactly. The question is really posed for the BPS to answer to. I'd like to know from them how does this work given the issues raised.

 

The text is quite a mess. For now, just want to oppose the extraordinary oversimplification, when it comes to so-called maintaining and perpetuating factors. As we know, this is deeply rooted among BPS’ers and the same oversimplification is used as some kind of explanation here as well. Who’s still ill and fed up with explanations they in no way can relate to, whether it is wrong thoughts or whatever?

It may be here, as in other areas in medicine, that a (very) small number of patients have wrong beliefs that limit their potential. Fine. But presenting this like some kind of general explanation for the majority of patients (still) being ill, is just weird, plain wrong and bypassing the real issues that need to be addressed.

It is a fact that many patients have met just about no knowledge when seeking it and needing it, often quite the opposite, read wrong “advice” harming and making great impact on long-term prognosis. This is where one has to start when trying to understand why many ME-patients still are ill after years, may even have negative prognosis. The lack of knowledge, the unsatisfying situation in clinical practice, all these things needs to be addressed and discussed. We need to start here, and make great improvements in order to prevent and reduce long-term illness as best as possible. Stop blaming patients for (still) being ill. At best such explanations consist of bad attitudes, a general mistrust in humans, and a total lack of knowledge when it comes to how most people actually deal and cope with challenges.

 

Must admit that l’m so fed up with blatant patient-blaming that I don’t and won’t read the piece that led to this one. Same personal attitudes all over again. My guess is that an informed patient probably could refer close to 80% of the content without even reading it!

But I read this comment, and it is a good and important one. I hope many people will read it.

As they point out: It is our responsibility to seek to build bridges, rather than to split among professionals, patients and relatives. More than anything, we, the strong part here, should avoid to cast ourselves as victims.

Well said. It is tragicomic when the strong part in this mess are unable to bring any scientific or other trust in what they are doing, instead portraying themselves as victims. That sets a new standard for low.

 

It’s not easy to just let go of “background materials”, cause one obviously like to stay well informed and up to date. But these things, again and again? Don’t know if we need more of it. These people really know how to set the agenda, how to (mis)use patients instead of focusing on making progress.

That said, I’m really glad that some respond to it, and it’s nice to see someone explaining the context and describing how meaningful it actually can be to cooperate with patients.

I guess the differences in view cooperating with patients have 100% to do with the following.

A) an open curious scientific angle to the problem where patients can contribute or,

B) a fixed theory relying on bad attitudes where vexatious patients play no part.

 

Yes, the content was same old, same old - but the timing for this round was interesting as the planned Lightning Process study has received a lot of criticism from pesky patients and a decision is taking place these days on whether or not Wyller and co can go ahead with it.

Great to see that the FAFO-researchers joined in with an opinion piece against this round of smearing. It's actually surprising to read positive characteristics of ME patients from people in power. A good surprise though

 

I'd like to introduce myself, I am Anne Kielland, one of the researchers behind this project. I wanted to let you all know that I now have a user here, and will from time to time check on comments. It’s nice to learn that people also outside Norway are interested in what we do.

I feel like clarifying one misunderstanding: We are not psychologists; we are mainly sociologists and statisticians and work within the social sciences, not medicine. We are not “BPSeres”, such positions belong to the medical professions, and are beyond the scope of our project. Our mandate is to learn about variations in "patient experiences with, and perspectives on" the healthcare, welfare, and education services here. We do that by asking the patients - and their families, when patients are too ill to communicate with us, or when families share responsibility for communicating with the public services. We use a survey, in-depth qualitative interviews, and focus groups for caregivers of the most seriously ill patients.

For those of you engaged in this community, our findings will hardly come as any surprise. People experience no or on average negative effects from interventions such as CBT and "Rehabilitation", and the labor market trials imposed by the welfare authorities are by most experienced as directly harmful. We find statistically significant differences in such service experiences between patients who met the CCC compared to those only meeting Fukuda criteria (we use algorithms from DePaul to assess CCC and Fukuda probability based on DSQ and SF-36, guided by Leonard Jason). Patient PEM score affects service experience even stronger, and consistently in a negative direction (based on the 5 PEM indicators in DSQ). The 59 respondents we have who tried LP were generally very unhappy with it.

So I stress that this is not a medical project, we document whether patients experience the most common public services and arrangements as helpful or not. I read here that we are being understood as having taken “two sides”, based on our VG op-ed. I think the intro to that text was unfortunate – it was put at the top by the editor and therefore taken out of context after we had approved the content. The statement was by us placed at the very end (it is a quote from patient interviews) and reading through the rest of the text first, there should be little doubt of our overall impression after these interviews. As for position, the project is almost by definition on the “patients’ side" - we are by the Research Council explicitly requested to learn about and communicate variations in patient experiences and perspectives. Concerning the debate on whether the origins of ME are psychological or somatic, our respondents’ perspectives do not vary very much, as you may have guessed.

I’m happy to answer questions if any of this is unclear.

 

Welcome to the forum, @Anne Kielland !

It's great to see you here and lovely that more researchers are finding their way to the forum. It's very kind of you to offer to answer questions and to engage with the patient community, also outside of Norway.

I've seen some talks about the research project with great interest. It has been a rare experience to listen to such accurate descriptions of the situation for ME patients and it's been fascinating to hear analyses from a sociological point of view concerning ME patients and the meeting with health care services.

Looking forward to the publications which I understand may start coming within a few months.

 

Hi @Anne Kielland . Thank you for posting here and offering to answer questions. That's very good of you.

I'm only an English speaker so am having to rely on just an auto-translate version of your VG op-ed, and expect I will end up missing some of the nuance to your points, but there were some things about what seemed to be the broad thrust of your argument that concerned me. I know that you were writing briefly on a complicated topic, and I'm now replying briefly myself, so I'm sure misunderstandings will occur - I hope you're ok with me shooting from the hip and maybe not explaining myself as carefully as I could in the hope that I'd be able to clear up my views in a later post if necessary, when I have a better understanding of your approach.

You wrote: "The ME debate is raging again, and once again the core of the controversy is what role the psyche plays in this disease."

Then you say things like: "In our broadly composed selection of ME-affected families, everyone sees that both the mental and the physical are at stake in the ME disease. A polarization between those who think the disease is only mental and those who think it is only physical becomes a trivialized oversimplification of the various positions."

You seemed to argue both that misunderstandings and different uses of language are the reason why i) this is the core controversy and ii) the majority of both sides actually believe pretty similar things about the role of the psyche plays in disease.

To me it seems like actually this isn't the core controversy, even if misunderstandings and different uses of language can make it seem important.

Unfortunately, I think that the core controversy does quite directly relate to some bad behaviour from a number of influential medical institutions and researchers. And I get the impression that's a difficult thing for those within the culture of academia to openly recognise.

You wrote:

"We have so far concluded that a main reason for the level of conflict between ME patients and the system is the gap that exists between many patients' experience of their own illness and the explanatory models they encounter with from the health and welfare systems. They simply experience that their stories of illness are unjustifiably objectified as the result of a kind of madness; the dysfunctional thought patterns. We believe resistance in such a situation would apply to very many patient groups, it is basically very human to react when one's experience of reality is met as a form of imagination."

I don't think I agree with this, but I know it's complicated. I think that the level of conflict results more from some bad behaviour from some influential medical institutions and researchers, and then a culture within academia that prefers a collegiate downplaying of the problems colleagues have caused others. This is going to generate resentment, regardless of what a patient's views about the role of the psyche in disease imo.

In the case of ME/CFS this is not entirely unrelated to the certain psychological models of ME/CFS and the implications they have for how it is acceptable to treat patients. A lot of people here are aware of the way results from PACE were spun, and the way patients pointing out these problems were smeared. I suspect that parts of that do relate to the way some view ME/CFS patients as suffering from a mental health condition that means that can be considered to be less able to rationally decide for themselves how they want to live their lives.

There are a number of ways patients are treated that seem to stem from views within parts of medicine that can lower standards of honesty and rigour are acceptable for patients classed as having mental health problems, so for patients who haven't been able to spend lots of time picking apart the individual strands that feed into the problems with how they are treated referring to ME/CFS being treated as a mental health problem can seem a useful short-hand. But that is so often interpreted in a way that leads to nothing much changing. If the models underlying CBT/GET were just changed, that wouldn't really improve anything. Actually, I suspect that it could make things even worse.

To me, examining and explaining the problems with the way those like the PACE researchers have behaved, along with the institutions surrounding them, is a necessary part of explaining the level of conflict surrounding ME/CFS. However I get the impression that this might be quite an uncomfortable thing for academics to do themselves (unless they were close to retirement!). I'm possibly asking for the implausible of researchers who want to help in a way that could be counter-productive. At the same time, presenting the central cause of conflict as being substantially a results of misunderstandings that can be corrected with some relatively minor changes might be a narrative that would be more acceptable to those with power, but I fear that it could be a narrative that leaves more serious and important problems unchanged.

edit: I thought I'd add that while I think problems amongst certain researchers are the most important causes of conflict, that's not to say that I don't also think that certain patients have also done things to make things worse. Also, I'd be happy to clarify anything via private message is that would be helpful. Maybe I should have sent the above via PM to start with rather than welcoming you with a public series of pointed concerns - hope it didn't seem rude.