Publications that show ME is biological

Thank you, @Jonathan Edwards. Actually, what you write goes a little in the direction of another question that pop up: I often critisize (German) guidelines (about CFS) as one-sided, because they nearly exclusively cite psychological papers and/or mention biomedical papers in a negative light.

I personally don't believe in psychological illnesses, but others do, so I have to "play" that game and address this.

So my question following from this was: How can I address the psycho-BPS side that is attributed to ME?
In Germany that would be called "psychosomatic".

As I understood it - that lies behind "psychosomatic" for some; for others, it's an underlying conflict. For others....

Then how should one proceed?
I am not an exception in that an ME diagnosis is dismissed, that it doesn't explain the symptoms and the degree of disability and that the diagnosis itself is subjective (this in fact I cannot contradict completely - but every psychiatric diagnosis is much more subjective), all this giving a "good" reason for a psychiatric assessment to "check" whether the underlying problem is psychological. Which, of course, will be found - if a psychiatrist wants to diagnose he does so.

In a way - it is the Don Quijote fight, because how can you disprove the claim it's psychosomatic/false illness beliefs/whatever? It's not just an academic problem.

 

One cannot be sure of that approach. It might merely persuade them to renew their attempts with increased vigour. One more push if you want to be cured.

 

That's not my experience. "They" don't have to prove anything, they just have to say it is so because they are the experts. It is you who have to bring along one proof after the other.

So would it probably be a better direction - when it comes to doctors and agencies - to go via the PACE trial and to show its flaws, that it shows for instance psychosomatic "rehabilitation" would be useless?

 

It'a not off-topic in my view, but very helpful. And you say it absolutely correctly, only that in Germany we're still at the "it's all in your head" level, most of the times. I am collecting good arguments to counter that, either via biomedical research or via PACE or via whatever is reasonable.

 

Rethinking your post...So could the way be something like the following:

The cause of ME is still unknown. Biomedical findings strongly suggest there is a physical cause, but also psychological reasons were widely investigated. The PACE was viewed as "golden standard" amongst psychological trials, but several publications have shown it doesn't fulfill basic scientific standards. Furthermore it was shown that the treatments that were looked at at this trial made no change in the health status of patients. This shows that the theory a psychological cause may underlie ME is false.

 

There was something in Ramsay's definition which could not have been fabricated and would require explanation by those who would psychologise the condition.

He reported that before a relapse patients would turn pallid. I forget the exact description and timing, but I think it was 15 to 30 minutes before the patient was aware of the rapid downturn.

It would require powers of observation not commonly available to note this. It is also dependent upon a patient being in the presence of someone sufficiently observant to notice, and sufficiently interested to pass on the information. It might also be that this only occurs in a limited set of patients and only at a particular stage of the illness.

It would however be interesting to hear the psychiatric explanation.

 

"Psychosomatic" explains everything really, that's how they use it (at least in my experience). I cannot tell where psychosomatic starts and ends, but I am sure "they" can. They will find a reasonably sounding explanation for you getting pallid, e.g. fear in your subconscious of over-doing it. Why shouldn't a judge believe this if an "expert" is giving this explanation?

By the way, it sometimes happens that during an activity I am told that I look pallid (that I turn pallid is very curious and rare indeed for me, I always have colored cheeks), and I understood that to be a sign of having been doing too much. Interesting it's mentioned before.

 

We address the psychosomatic theorists simply by pointing out that there is no science there, no coherent hypothesis and no evidence from a valid way of testing the hypothesis. That is a big task but it is a simple one because there IS no science, just speculation. Nobody actually knows what they mean by the mind inventing physical symptoms.

The practical process of this is showing the poor quality of the studies used - such as PACE or SMILE. We have made an impact. It needs following up.

So we proceed by unravelling the claims of the theorists. In simple terms that is matter of just repeating again and again - you have no scientific evidence.

 

Strictly speaking yes, but then nothing could ever really be disproved. In practice you have the draw the line somewhere and be selective because you cannot exhaustively test all hypotheses. I think it's reasonable to say that CBT/GET and its associated illness model had plenty of time to be refined, were given the chance to prove themselves and ultimately failed.

 

Well, I totally agree. There is no science. But people in positions with certain power over people (like assessors) see that differently; and I'd say judges, too. And as a non-active researcher or non-scientist, those people give a damn about your statement. Even when speaking with family and pointing out this fact it is not accepted as correct.

You would need good arguments that show that psychosomatic theories are non-scientific in order to have them accepted by agencies, judges, etc. I am looking for these arguments. Still, it cannot be wrong to stress that "they" don't have scientific evidence for their claims.

 

But it is very indicative: If a treatment doesn't help, the claimed underlying process is (most probably) not correct. I shall use this argument nonetheless.

 

Yes,there are political forces of all sorts resisting the truth. But the only way to win the argument is to keep pointing out the truth. I am not sure which judges would support psychosomatic theories. What contexts would this arise in? My experience with patent courts is that they are actually very rigorous about evidence and an empty argument is destroyed rapidly. I think the problem for CBT is that it is not seen as a commercial product that needs to justify itself. It is seen as a natural part of social health care. That is because the psychiatrists have been given free rein. But that could change I think, even if it is an uphill battle.

The arguments are simple. Nobody has a testable mechanism for 'psychosomatic' causation. Nobody has clinical evidence that it exists and trials do not support it being a useful pragmatic idea - if you read the trials properly.

 

Sorry Inara, but Cheshire is right here. The failure of PACE has no impact on the theory because the results are uninterpretable either way and do not test the theory as such anyway. The only way it might disprove the theory is if we could reliably say that CBT made people say they were better when in fact objective measures showed no improvement in disability. It might look as if we can do this but the problem is that it also looks as if PACE probably did not recruit anyone who believed (probably rightly) that exercise was bad for them anyway - so it didn't test the right people.

It is crucially important to distinguish one argument from another otherwise my colleagues will simply say the patients have got it all in a muddle and can be ignored.

 

Yet if PACE had been a success, the CBT/GET proponents would undoubtedly present it as evidence that their illness model is correct.

 

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.

 

In the context of social law and criminal law, for instance, where psychiatric assessments - depending on the case - are almost normal. In the context of disability pensions, assessing the psychological aspects - either as a "plus" to physical diseases or alone to show that the underlying problem is psychological, most often psychosomatic - is common. I think the motivation behind this is to declare people as "healthy" or to put them into rehabilitation clinics (often psychosomatic in case of ME) and to declare them afterwards as healthy (or whatever that leads to a denial of benefits).

I don't say it happens always, but my personal impression is it's pretty common practice. Also in UK probably?

So it's about supplying counter-arguments to agencies and doctors who play with the psychosomatic and depressive strand in order to force GET/CBT or psychosomatic treatment upon someone. Or differently: I would like to break free from the "sink or swim" principle by addressing
1) ME is not psychosomatic
2) ME is a real diagnosis (maybe even illness) which underlies disabling symptoms, so there isn't a hidden primary psychlogical issue which would explain the symptoms better.
I am not sure it will be helpful with agencies and judges to stress "psychosomatic" or BPS and so on isn't scientific. In a scientific setting - no question, absolutely so. It will backfire I think in the sense that one will be called resistant to accepting the "real" illness - and therefore to treatment that might be a cure.

In this sense it might be a possibility to argue PACE showed that the common treatment - psychotherapy and exercise/activity - isn't helping, amongst others people with ME.

It could be worth a try to add that. Plus probably statements from psychologists etc who say so themselves (e.g. Thomas Insel, Tomas Szasz, others). But I'm not sure.

 

Again, if you can swing it around, you can say that the "false belief" hypothesis has attracted considerable attention and research dollars, so if it were correct, there should be now be ample evidence supporting it (like evidence of people's "illnesses" getting reversed by CBT or GET). But there is none. That idea led to a dead end. So time to move on.

The BPS folks win their game by casting doubt on opposing hypotheses, while at the same time holding themselves to much lower standards. They win by presenting their explanation as the default that must be assumed until there is solid, incontrovertible evidence to the contrary. By asking us for proof the disease is "physical" we're dancing to their tune.

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

 

For completeness, do you have something at hand, a link?

I think taking everything that we have one could build a good argument against agencies, doctors, judges etc. who want to put people with ME into the psychosomatic/depressed corner.

 

https://sapc.ac.uk/conference/2017/...treatments-mecfs-symptoms-analysis-of-patient

http://www.meassociation.org.uk/201...e-least-negative-reactions-02-september-2017/