E. Crawley: Time to end the damaging battle over chronic fatigue syndrome

Sidereal

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Yes, so is it? Here she says, "Some people say that because we haven’t worked out the biology, the illness must be psychological. This is an extraordinary conclusion: there are plenty of illnesses we don’t understand, but that doesn’t mean we dismiss them as psychological." I don't know the history of Esther Crawley's comments, but it definitely contradicts Simon Wessely's famous "ME is the belief that you have a disease called ME", which precisely dismisses ME as psychological.

Come to think of it, I'm also surprised to see her use the phrase "dismiss as psychological" -- that seems to not be singing off the same hymn sheet as the "oh so you think psychological illnesses aren't real" objection, or at the very least is curiously orthogonal to it.

So, taking this editorial at face value (which I know is highly problematic given the history of the other side maintaining that we are delusional, but bear with me) it does seem to me to be a shift from what I would have expected. I would have expected "there is no boundary between psychological and physical" (whatever that means to them, I'm still not sure it's more than just a way to call people "dualists" by way of insult) and an assertion that the disease is psychosocial-genic. But instead we get here an affirmation that it is physical and a denial that it is psychological. There thus does seem to be some daylight between the standard BPS party line and this editorial.

Which is interesting. I like this rhetoric better. I'd like it a lot more if we could be sure that it did not correspond to the same sort of "illness belief" treatment as the old rhetoric, a submerging of an unacceptable way of speaking (it's not nice to call patients delusional) while pursuing business as usual for the treatment.

Call me crazy (ok, I'm crazy :) but I'm still willing to hope that there are some BPS people somewhere who are not lost causes, who might actually come around. Though to be fair, it's pretty hard to walk back a claim that patients are delusional.
She's not coming around, she's just lying publicly to fool less well informed patients and uninformed public. Meanwhile, she rediagnoses severe ME/CFS cases as 'pervasive refusal syndrome' and subjects them to psychiatric sectioning and rehabilitative treatments.
 

sarah darwins

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I have it on excellent authority, that she is regarded as the go-to authority for all paediatricians in the UK.
Sadly, yes. I'm related to a paediatrician who regards EC as the "authority" on the condition in children. My relative has no understanding of ME but is fairly sure that PEM doesn't exist.

Nobody ever said the BPS folk weren't good at self-promotion. They're bloody masters of it.
 

JamBob

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No IIME have asked them and the CMO and Lancet and Wessely but they have refused.


This is just propaganda and they really think we are stupid.

Surely they are in breach of the GMC guidelines which state that the duties of a doctor include:

Keep your professional knowledge and skills up to date.
The BPS doctors don't attend the major conferences (IIME or Florida) for the disease they claim expertise in and seemingly they have not conducted full literature reviews as they keep claiming not much is known (EC says "We know almost nothing about chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME)." Perhaps if she attended some conferences - she'd know a bit more!)


Recognise and work within the limits of your competence.
They are not able to recognise their own limits otherwise they would not keep claiming to be experts based on their limited psychological construction of the disease which ignores the biomedical evidence.


Be honest and open and act with integrity.
These doctors have spun and twisted their results to mislead the public and the press. Their behaviour in relation to the lies they tell about "vexatious" patients is unethical and the opposite of acting with integrity.


Never discriminate unfairly against patients or colleagues.
These doctors routinely use their positions of power to promote the view in the wider media that critics of their work are either 1) mentally ill 2) vexatious 3) are motivated by stigma towards mental illness. This seems like discrimination to me.


Never abuse your patients' trust in you or the public's trust in the profession.
Given the media lies and manipulation both of trial outcomes and of the mischaracterisation of patients, I'd say they are abusing patients' trust in the profession - such that many patients won't even go to the doctors any more due to the stigmatising treatment they can expect to receive.

Don't we have a case here given that a fair bit of this behaviour is documented in the press and was highlighted in the Alem Matthees' FOI hearing.
 

OverTheHills

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This article, to me, reads very much as an attempted justification to remain in a key position on MEGA.

I am hoping someone will respond pointing out that the answer to her question 'how did we get here?' was ' By giving the BPS school the vast majority of the funding to do Very Bad Science and ignoring the majority of patients.'
 

Stewart

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Is it possible to leave a comment on the NS article? I don't have an account, and I'm trying to decide whether its worth signing up...
 

Barry53

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Do not get distracted. Focus on what's important: PACE has been exposed as fraud, and the CBT/GET empire is crumbling.

They are trying to bargain because they are weak. They are making a media push because they are afraid of losing control.

They are afraid of criticism. That's why they are attacking the critics again.
I agree it is a fair possibility, though by no means a foregone conclusion. But it just might indicate the beginnings of cornered rat mode.
 

Deepwater

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[QUOTE="Matthew Jones, post: 782824, member: 10591"]It's not so bad actually if you read the whole thing. He states there are metabolic changes in CFS as well as hormonal changes in teenagers and that its often triggered by an infection and that the severity of the infection effects the severity of the illness. All good biological stuff.

The only bad parts are a couple of sentences about his CBT trial. But he does call for more funding for understanding the biology of CFS too, which is good. Of course I think his CBT trial is a waste of money even if it helped a some people cope, there are much more important biological aspects to be spending the money on. Still, the article isn't all pro-psychobabble.[/QUOTE]


It's surely about Esther Crawley's desperation for MEGA to go ahead, with her on board. Herself and PW hoping to keep the criteria broad so that when sub-typing is done there may be some left for whom no biological abnormalities have been found whom they can continue to "treat". No, Esther. No, Peter. It's time for you to go home now.
 
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See photo below from FitNet protocol describing type of CBT being used.
Yes, it pisses me off. In public she says, hey, we don't know what causes ME/CFS, keep an open mind.

Yet this is not what happens in their therapies, where their therapists tell patients that cognitions can lead to perpetuating the illness, despite the fact that there is no evidence for this claim.

(Objective evidence to support this claim would need evidence of functional improvement or decline as a result of having/treating such cognitions. Any evidence that relies entirely on questionnaires is worthless as all it proves is that altered cognitions is associated with altered questionnaire answering behaviour - these questionnaire results suggest nothing about whether patients are objectively less impaired or whether the underlying illness has improved)
 
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Ysabelle-S

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They are hoist on their own petard. All their damaging behaviour has come back to haunt them. They have alienated the patient community, but are using excuses like adult and child ME sufferers are different in order to say adult experiences are not relevant here, and that they are the true experts, which they're not. They are BPS cuckoos in the nest.
 
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Fact: the "damaging battle" won't end until people like Esther Crawley start listening and start to compromise to find middle ground. It has already been mentioned that how CBT is delivered is unacceptable - stop making claims that it leads to great improvements in activity or recovery/remission because there is no evidence that it does. Stop spreading falsehoods in the media (eg the Dutch FITNET study had a null result for 'recovery', yet the media claiming 60% of patients had recovered as a result).

The CBT we want is that offered to patients with other diseases eg cancer, MS etc - not curative, but supportive. Not pushed onto all patients, but those who feel it could be helpful. No claims that it magically reduces fatigue, yet no objective evidence of functional improvement of symptoms. No such claims when it is only biases like the Hawthorne effect leading to a change in questionnaire answering behaviour that lead to the 'effect' in non-blinded clinical trials.

Dr Crawley, if you ever read this: if you want our trust, then you will have to start listening to us.
 

Chrisb

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She's not coming around, she's just lying publicly to fool less well informed patients and uninformed public. Meanwhile, she rediagnoses severe ME/CFS cases as 'pervasive refusal syndrome' and subjects them to psychiatric sectioning and rehabilitative treatments.
Please keep up with the times. Apparently PRS should now be known as PAWS (Premature Arousal Withdrawal Syndrome, oh sorry, my mistake, Pervasive Arousal Withdrawal Syndrome).

Strangely, so far as one can tell, the person who coined the term seems to have been much appreciated by patients and parents. It may have been down to the cases to which the diagnosis was applied.
 

Barry53

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Come to think of it, I'm also surprised to see her use the phrase "dismiss as psychological" -- that seems to not be singing off the same hymn sheet as the "oh so you think psychological illnesses aren't real" objection, or at the very least is curiously orthogonal to it.
Which is interesting. I like this rhetoric better.
I'm still willing to hope that there are some BPS people somewhere who are not lost causes
@Sidereal: I, like you, do strive to retain my faith in human nature ... but I'm afraid my limit is reached way short of EC :). I see her as a real head-messing, politically motivated individual, and that everything she does is coldly calculated.

The more I read, the more I become convinced she is trying to change horses in mid-stream. And if that is so, then it is a clear sign (as it is with all such people) that she feels all is not going her way. I cannot believe for one moment it is altruism, just attempts at self preservation. If this becomes a pattern, it could be a clear signal.
 
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Ysabelle-S

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Re: the latest broadcast appearance. I predict the usual faux victimhood, carefully placed questions and opportunities to spin the usual line. Yet, if we were actually to list all the things done to ME sufferers by UK medics, psychs and the NHS, there would be public outcry. There is no way that all these media appearances and articles are a coincidence. It's an orchestrated campaign in the face of mounting biomedical evidence and a much vaunted trial that has now collapsed and received international condemnation from those who've been paying attention. And of course, the BBC has ties to the SMC. They are a ready and willing platform for this nonsense, yet wasn't it the BBC back in the nineties that exposed the shocking treatment of children with ME? I remember one of my sisters watched it, but I made a point of skipping it.