Special Report - Online activists are silencing us, scientists say Reuters March 2019

Snow Leopard said:
APT is not a "matched" control because it does not control for differences in biases.

It is all a continuation of a debate that has existed for more than a century. Patients get dragged into it whether we like it or not.
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Yes, see my response to Lucibee - APT is a matched control for the parameter of therapist contact, but only for that parameter.

Patients may well get dragged into the debate but the 'medical not mental' divide is driven from the advocacy side. The BPS crowd deny there is a valid distinction. Early criticism of PACE in 2010 included a 400 page document that argued that PACE was bad because it was mental not medical. That isn't the reason it is bad, and it is an argument that is all too easy to pull apart.
 
Snow Leopard said:
It is all a continuation of a debate that has existed for more than a century. Patients get dragged into it whether we like it or not.
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Freud's big "innovation" was the idea that disease could have an emotional cause. Over a century later and medicine still clings to variants of this idea. The idea has lost a lot of ground. Hardly anyone still believes that cancer is caused by repressed emotions. Instead there are modern reinterpretations that suggest it's the thinking and beliefs that cause disease (just not illness with an objective test, because then the idea could be disproved).

To me it seems that some people want us to stop pointing out how weak this idea is because their job and self esteem depends on it being valid. This is not my problem, it's theirs.
 
Trish said:
@Jonathan Edwards, do you think this study would also be useful for your NICE presentation? It shows how unreliable subjective outcome measures are in separating out placebo effects from real effects in an asthma study.
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SUBJECTIVE (PATIENT–REPORTED) OUTCOME
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That's really interesting Trish.
  • The clear subjective perception of massive improvement where it was actually negligible.
  • Major inflation of perceived improvement compared to actual improvement. Although I appreciate this might be often the case anyway, depending what the objective measurement is. e.g. Max FEV changes might not directly correlate too how a person's perception of their health changes.
Not looked, but is this a properly peer reviewed study?

Have you seen any similar ones?
 
Jonathan Edwards said:
I don't really follow your arguments, @rvallee.

All our experiences are in a sense mental and I do not see what experiences PWME have that can tell us whether the condition is due to a disturbance of brain function (mental) or something else.

The argument against CBT and GET has to be that the evidence for their effectiveness is not there. We cannot be sure whether any theory is right or wrong.

We cannot be sure that treating ME with radiation or organ removal is wrong either. If they worked then they would be justified. There is no reason to think they would work and I agree that there is no good reason to think CBT would work. But we have no reason to think any other 'physical' treatment would work at present because we don't know what is going on.

The problem as I see it is that so many advocacy efforts highlight the idea that this is a 'physical disease' rather than a mental one when we actually have no evidence to support that. Moreover they really bang on about it. My own thoughts about this is that from a medical point of view this distinction is pretty meaningless anyway. It would be entirely reasonable for the medical profession to ignore all the objections to PACE that it is based on the wrong theory on the grounds that the objections are confused and science does not work that way. Science goes for the theory supported by evidence, not the theory that looks right to start with.
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We cannot be sure that treating ME with radiation or organ removal is wrong either. If they worked then they would be justified.
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That was my point. CBT and GET are rejected not because we don't like what they imply about the disease. They're rejected because they don't work. Several people have tried things like IVIG and other stuff that don't work even though they're "biomedical". They're not rejected because of what they imply, but because experience proved otherwise. Same with Rituximab, especially how interesting the effect blinding had.

If a trial showed radiation treatment worked we would be interested in knowing more. But we don't pursue treatments based on how serious they seem, as opposed to some imagined "it's just psychology and I don't want it". The real point isn't over the psych label, it's that people naturally conclude that we're lazy because that's the only possible implication of not wanting to exercise. The emphasis is that this disease is way more serious than just "wish yourself well exercise and exercise out of some imagined rut", which is the implication most seem to believe.

If CBT and GET worked, there actually would not even have been a need to develop them since the vast majority of us tried that naturally, in most cases pretty much the first thing we tried other than severe patients. When I got sick I: 1) called my GP, 2) joined a gym and 3) was recommended psychotherapy and did just that. I doubt my experience was exceptional.
 
Jonathan Edwards said:
We are happily assuming that Cochrane, NICE, the MRC and up until now at least the NIH have reached conclusions based on pressure from the BPS lobby.
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Pressure from "militant activists" is quite different from "pressure from influential researchers, government agencies and funding bodies".

No such institution would ever cave to militant activism so the suggestion itself is laughable. The opposite commonly happens, ideologues pushing their failed ideas way past their expiration date.
 
Lucibee said:
Apols for posting, but...
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Do you think there is any chance that SW and MS will address some of the errors in this piece of pure bile?
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That is just outright abuse in plain sight. I really do hope MS and SW refuse to distance themselves from this, because if they don't then they could well get dragged through the muck with it.

It also illustrates how S4ME needs to distance itself from the genuinely deeply abusive cr*p that has been targeted towards MS etc on twitter recently; we have to be seen to be no part of that. The innocently uninformed need to see that we are straight up in our dealings.
 
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Dr Carrot said:
Crikey I’m really encouraged by those comments on Reddit. Such a surprise to see positive discussion and people understanding the bs.
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It makes all the difference who comments first. Informed people responded quickly with plenty of references, shutting down the usual angry mob of physicians who want to vent about those patients being annoying again. ASABM (or something like that) was amazing.

I'm surprised I haven't seen it pop up in /r/medicine. Boy do they hate us over there and whip a frenzy really quickly, usually just moderating out comments from anyone who may seem to be a patient so they keep it an echo chamber of #PatientsAreDickheads.
 
Some thoughts on Michael Sharpe

*His victim story has backfired spectacularly. Patients who didn't know about his role in PACE and history of daft comments do now.

*He is most patronising with women. Carol Monaghan is even more determined to support the patient community after his "unbecoming" letter.

*He has united the patient community.
 
strategist said:
What do people even mean with "mental cause"? Perhaps we understand the term differently than them.
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I think part of the problem is that:

Mental illness

and

Mental cause of illness

are completely different concepts.

So whether an illness is treated as 'mental' needs to be understood in either one or other way.

Schizophrenia, punch-drunk syndrome, Alzheimer's and bipolar disorder are all mental illnesses in the sense that they produce mental disturbance. However, none of them are thought to have a 'mental cause'.

A mental cause of an illness is probably a cause that involves the occurrence of thoughts. So post traumatic stress disorder is an illness with a mental cause. Anorexia nervosa might be since there seems no doubt that abnormal thoughts about body image are involved. But then the question is what causes those abnormal thoughts.

The BPS model is a model of ME having a mental cause for continued disability. Not having ME I cannot be sure but I get the strong impression that this is just not plausible as an account of the illness.

But that does not stop ME being a mental illness in the sense of an illness that affects thinking, just as Alzheimer's affects thinking - which it obviously does. So at least part of the time I tend to think that the problem is not that this is an illness that psychiatrists should not try to help with. It is just that the psychiatrists involved at present seem to have got completely the wrong end of the stick - the cause end rather than the effect end.

But then the effect on thinking in ME bears pretty little relation to problems like bipolar disorder and schizophrenia and to be honest psychiatrists are not much good at the 'brain failure' of Alzheimer's, so maybe even enlightened psychiatrists should not be involved.
 
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