Publications that show ME is biological

[Jonathan Edwards]

If patients clearly know beforehand that exercise is bad for them, why are there so many reports of patients trying GET and getting worse? I'm thinking about surveys here, not merely anecdotes. I think what's happening is that patients are willing to try GET and don't necessarily have strong opinions on it until it harms them.

In a certain sense that patients are willing to believe in GET makes the poor results of PACE more credible. It doesn't work even if patients believe in it.

I have been thinking this over recently. The BPS model that informs Chalder's CBT does not so much imply that patients know before hand exercise is bad for them. It is very clearly based on the line of argument (in Wessely, Chalder et al 1989) that the problems that patients BELIEVE that exercise is bad for them (falsely) and that this belief is sufficiently strong that it wilt be altered simply by a leaflet or advice but only by a specific thought-changing therapy that uses 'cognitive strategies' i.e. brainwashing techniques.

Now if we take this requirement for the disease model seriously then pretty much by definition anyone with a belief this deep when looking at the information sheet for patients at the time of recruitment BEFORE being exposed to brainwashing will refuse to take part. It is pretty much a requirement of the false belief needing CBT theory that people with such beliefs will not have taken part in PACE.

That leaves plenty of room for other people who thought maybe exercise was bad trying PACE because they were desperate.However, these people by definition do not come under the theory that says that there is an irrational BELIEF too deep touching with a friendly patient information sheet!

 

[Hoopoe]

Now if we take this requirement for the disease model seriously then pretty much by definition anyone with a belief this deep when looking at the information sheet for patients at the time of recruitment BEFORE being exposed to brainwashing will refuse to take part. It is pretty much a requirement of the false belief needing CBT theory that people with such beliefs will not have taken part in PACE.

The counterargument is that the PACE authors themselves believed that these illness beliefs are not sufficiently strong to prevent patients from enrolling into PACE.

 

[Jonathan Edwards]

The counterargument is that the PACE authors themselves believed that these illness beliefs are not sufficiently strong to prevent patients from enrolling into PACE.

Do we have that on record?
It would seem pretty hard to substantiate the claim that people who need professional brainwashing techniques do not have strong enough beliefs to act on!

 

[Hoopoe]

Do we have that on record?
It would seem pretty hard to substantiate the claim that people who need professional brainwashing techniques do not have strong enough beliefs to act on!

Not that I know, but why would you run a RCT if you expected that none of the target patient population would participate?

 

[Jonathan Edwards]

Not that I know, but why would you run a RCT if you expected that none of the target patient population would participate?

Because the point of the trial was to satisfy a desire to please the DWP and to gain academic kudos and job security for psychotherapists. It is very clear that the trial was not designed to discover the truth. We now know that actimeters were not used for follow up assessment because there was evidence that they would not give the desired answer - not because there was anything wrong with them but because it looked as if the desired answer was not likely to pitch up.

 

[Hoopoe]

Reading the 1989 paper, I'm not getting the impression they are proposing extreme illness beliefs that would prevent a patient from taking any interest in rehabilitation. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1711569/pdf/jroyalcgprac00001-0034.pdf

 

[Jonathan Edwards]

Reading the 1989 paper, I'm not getting the impression they are proposing extreme illness beliefs that would prevent a patient from taking any interest in rehabilitation. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1711569/pdf/jroyalcgprac00001-0034.pdf

Quite so, but if you read carefully it is clear that to justify CBT these must be beliefs that can only be overcome if you use special techniques involving 'cognitive strategies' rather than just rehabilitation. There is no need for CBT if people's beliefs are soft enough for them to agree to GET. It is a subtle point but I think central to any justification of CBT per se.And if you do not justify CBT per se you are back to the fact that PACE just showed that people say they are better if they have several sessions with someone who encourages them to say they are better.

 

[Inara]

To beat them, we need to employ their own tactics - cast doubt on their hypotheses.

Absolutely right!
What you say can be well used. Good argumentation in my view!

 

[adambeyoncelowe]

Reading the 1989 paper, I'm not getting the impression they are proposing extreme illness beliefs that would prevent a patient from taking any interest in rehabilitation. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1711569/pdf/jroyalcgprac00001-0034.pdf

But CBT suggests thoughts and beliefs that are difficult to overcome on their own. Otherwise, as Jonathan says, you could just give them a leaflet saying they need to slowly exercise more, and the CBT wouldn't be needed.

CBT implies patients won't do the exercise unless you break them out of their negative viewpoints. But if they were so negative, they'd never agree to it in the first place.

 

[Inara]

It would seem pretty hard to substantiate the claim that people who need professional brainwashing techniques do not have strong enough beliefs to act on!

May I ask if I'm allowed to cite you where appropriate? I like "brainwashing". (By the way, that's what it exactly is.) But if I say it it's nonsense brabble by a crazy woman.

 

[Inara]

@strategist @Jonathan Edwards @adambeyoncelowe
I am not getting something here...but I have the feeling it might be important. Is there some kind of circular reasoning in the CBT/GET defenders?

Quite so, but if you read carefully it is clear that to justify CBT these must be beliefs that can only be overcome if you use special techniques involving 'cognitive strategies' rather than just rehabilitation. There is no need for CBT if people's beliefs are soft enough for them to agree to GET. It is a subtle point but I think central to any justification of CBT per se.And if you do not justify CBT per se you are back to the fact that PACE just showed that people say they are better if they have several sessions with someone who encourages them to say they are better.

I simply cannot process it but I am close to it.

 

[Hoopoe]

Quite so, but if you read carefully it is clear that to justify CBT these must be beliefs that can only be overcome if you use special techniques involving 'cognitive strategies' rather than just rehabilitation. There is no need for CBT if people's beliefs are soft enough for them to agree to GET. It is a subtle point but I think central to any justification of CBT per se.And if you do not justify CBT per se you are back to the fact that PACE just showed that people say they are better if they have several sessions with someone who encourages them to say they are better.

I am reading carefully and they lean heavily on the fear-avoidance model of pain. Their position is that something similar is happening with CFS.

They reference these articles:

Avoidance behaviour and its role in sustaining chronic pain.
https://www.ncbi.nlm.nih.gov/pubmed/3662989

Outline of a Fear-Avoidance Model of exaggerated pain perception--I.
https://www.ncbi.nlm.nih.gov/pubmed/6626110

I am not getting something here...but I have the feeling it might be important. Is there some kind of circular reasoning in the CBT/GET defenders?

Don't worry, I have the same feeling as well. Trying to understand their position and reasoning is ultimately futile because they have not developed a real model and are therefore unable to describe it in detail. There is no substance to their ideas. They just say whatever sounds good at the time and helps them promote themselves and their interests, and we are a suitable vulnerable patient population for that purpose.

 

[Inara]

Don't worry, I have the same feeling as well. Trying to understand their position and reasoning is ultimately futile because they have not developed a real model and are therefore unable to describe it in detail

Fake science, real harm.

I do want to avoid the real harm part. Therefore, one needs to understand their reasoning. If it leads to a circular reasoning on their side - perfect! To show that could be powerful I think. But I don't get that close.

(Like in the DSM V definition of "psychological disorder" - now preferred to "psychological illness" - where "A psychological disorder is...blah...lots of blah...blah...a psychological disorder." That is an empty statement, showing lots of the emptiness in stuff like that.)

Would it be helpful to summarize the psychological models for ME that exist so far? They sound very different at times. Probably to present that, too, would show they are groping in the dark?

 

[Hoopoe]

Quite so, but if you read carefully it is clear that to justify CBT these must be beliefs that can only be overcome if you use special techniques involving 'cognitive strategies' rather than just rehabilitation. There is no need for CBT if people's beliefs are soft enough for them to agree to GET. It is a subtle point but I think central to any justification of CBT per se.And if you do not justify CBT per se you are back to the fact that PACE just showed that people say they are better if they have several sessions with someone who encourages them to say they are better.

Here is a good counterargument: according to them, GET is enough to cure patients and as effective as CBT. GET does incorporate some elements of CBT but doesn't come across as heavy brainwashing. GET supposedly cures by demonstrating to the patient that they can actually do more if they just push themselves. Or at least they said that on one occasion (they may have said something else at different times). It's all made up BS anyway. Regardless o how GET supposedly cures, it is clearly not the same as CBT.

 

[Pechius]

I understand the desire to show ME is biological but I think this approach may backfire.

At present we have no quality publications that demonstrate that ME is 'biological' in the sense I think you mean. There may be 10,000 papers discussing findings that might suggest there are biological abnormalities in ME but none of them is conclusive.

The evidence for ME being biological comes from the fact that people are genuinely disabled, not from any science.

The problem with trying to convince authorities or doctors that ME is biological on the basis of scientific papers is that they can easily see through that. If I was the doctor I would look at the papers and say to myself - this proves nothing. This approach has been used in the UK in the past a lot and it has worn thin.

The criticism of psychotherapy studies in J Health Psychology and David Tuller's blogs is a criticism of methods of testing treatments. It is a quite different issue from what theory of the disease is valid. Nothing in the JHP journal provides evidence for ME being biological.

What about 2-day CPET? Seems like it's very solid evidence, but I think there were some replication problems? Post exercise gene expression differences also seems like pretty solid evidence.

 

[Jonathan Edwards]

Here is a good counterargument: according to them, GET is enough to cure patients and as effective as CBT. GET does incorporate some elements of CBT but doesn't come across as heavy brainwashing. GET supposedly cures by demonstrating to the patient that they can actually do more if they just push themselves. Or at least they said that on one occasion (they may have said something else at different times). It's all made up BS anyway. Regardless o how GET supposedly cures, it is clearly not the same as CBT.

Yes, I think this demonstrates the fact that what they say in different places does not add up. But Chalder and Wessely were mostly saying that you need the cognitive strategies of CBT. The PACE people introduced the idea that GET might work too. But it remains the logical case that the justification for CBT a la Chalder and Wessely is not compatible with people who 'needed' that enrolling for PACE. It is perfectly compatible with people with ME enrolling or people who might be happy to try psychotherapy or GET enrolling but not with people who have the problem that Chalder CBT is designed to treat!

 

[Jonathan Edwards]

What about 2-day CPET? Seems like it's very solid evidence, but I think there were some replication problems? Post exercise gene expression differences also seems like pretty solid evidence.

It is very hard to know whether 2 day CPET tells us anything about a physiological basis for the cause of the illness or effects of the illness.

Again, gene expression studies may just show that, for instance, the white blood cells in PWME hang around longer and tend to be a bit old because of inactivity and lack of using up cells in response to minor injury. Older cells might respond differently to exercise.

What is needed is a physiological marker that HAS to be part of the cause. The easiest sort of marker is a genetic one (not gene expression) because it must be there before the disease so cannot be caused by the disease.

 

[Pechius]

What is needed is a physiological marker that HAS to be part of the cause. The easiest sort of marker is a genetic one (not gene expression) because it must be there before the disease so cannot be caused by the disease.

I think thay any biomarker would be a huge step forward, because it would at least legitimize the disease in the eyes of regular GPs. What are your thoughts on nanoneedle?

The current theme in psycho-neurology seems to be psychological=biological/integration of mental and physical, bla bla, so even if we had a gene test I doubt it would be any good. The gene would probably be widely prevalent in the population and only some with a gene would get sick, therefore folks could still be blamed, if need be. My opinion is that there will never be a smoking gun. The turning point will be effective treatments and us getting healthy again and physicians seeing that with their own eyes..

Even if it was psychiatric, the most ridiculous thing for me is that it's ok to have drugs for depression, anxiety, schizophrenia, psychosis, but with ME, we're somehow supposed to magically snap out of it, even though we're more disabled than pwMS... Weird, isn't it..

 

[Mij]

I would like to know if M.E evolves over time or whether the pathology is present at the onset. Years ago I could have performed the 2 CPET test with flying colours.

 

[Inara]

I would like to know if M.E evolves over time or whether the pathology is present at the onset. Years ago I could have performed the 2 CPET test with flying colours.

I can just speak from my own impression and experience in my family. Here I see it as progressive. But I am not sure there is any research about that.

Does anybody have at hand the Michael Sharpe quote where he says PACE was not supposed to focus on ME/CFS but on chronic fatigue (which has an F code if I remember correctly)?