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

[Cheshire]

A new strategy?

All those interested in progress on helping those with CFS should unite in the push to find therapies, be they behavioural or biomedical, says Esther Crawley

We know almost nothing about chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME). And yet it causes misery and suffering for hundreds of thousands of people, including many children.

One in a hundred teenagers in the UK miss a day a week or more of school because of it, and 2 per cent are probably missing out on the normal stuff that teenagers do. Those I see in my clinic are sick with disabling fatigue, memory and concentration problems, and terrible pain. On average, they miss a year of school, on top of which mothers give up work and siblings suffer.

Yet progress on this illness is being hampered by controversy, with some people disputing both its cause and treatment. Some still dismiss it as a non-illness; others decry attempts to treat it with psychological therapy.

https://www.newscientist.com/articl...hronic-fatigue-syndrome/#.WByonAonxg0.twitter

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[sarah darwins]

Predictable, and nauseating. She's saying "If you criticise me you're harming children".

 

[Cheshire]

This is really nasty...

All those interested in progress on helping those with CFS should unite in the push to find therapies, be they behavioural or biomedical

Why then did you try to drive Dr Nigel Speigh out?

How have we arrived at a position where the biggest reason for teenagers to miss school long-term is rarely studied and society allows so few to receive treatment?

Well, don't you have any idea?

Part of the difficulty is that CFS/ME is not a single illness. Both children and adults have different clusters of symptoms that may represent different illnesses with different biology, requiring different treatments. This may explain why treatments only work for some – and is a problem for those trying to develop them and for people who don’t get better.

Why then did you push the broadest criteria possible?
Why do you dismiss PEM as a mean to create subgouping?
Why are you promoting so vigourously a one size fits all therapy?

Can't read more

 

[Yogi]

@Cheshire can you post the article here please. I don't want them to get any clicks from us.

 

[Snow Leopard]

Once again, Dr Crawley (and colleagues) seem to have refused to listen to and understand our criticism.

There seem to be 3 camps, based on their beliefs:

1. We should try whatever treatments we have (inc CBT) for all patients, even if they don't treat the underlying cause, or work for most patients.

2. The evidence of CBT is currently inadequate (since the effects always seem to disappear at long term followup) and the methodology of Crawley's study is also inadequate (objective outcomes should be primary, a long term followup is mandatory). But CBT isn't inherently a bad idea, it could in principle be helpful for a minority of patients to cope with illness.

3. CBT is completely inappropriate for any physiological illness (such as ME).

Dr Crawley seems to think that all criticism comes from the third camp, but on the contrary - much of the genuine criticism comes from those in the second camp. I for one am in the second camp.

 

[AndyPR]

@Cheshire can you post the article here please. I don't want them to get any clicks from us.

| second this but on the basis that I can't seem to create an account. Probably for the best, any comment I would leave wouldn't make it past moderation anyway.

 

[anniekim]

But CBT isn't inherently a bad idea, it could in principle be helpful for a minority of patients to cope with illness.

Important to remember the CBT used in Crawley's FitNet trial is not CBT to cope with illness but to from the FitNet protocol "challenge cognitive processes that contribute to the illness'. See photo below from FitNet protocol describing type of CBT being used.

 

[A.B.]

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.

One can talk about making peace when the wrongs have been made right. So until PACE is retracted or corrected, and it is publicly acknowledged that CBT and GET are ineffective and outright harmful in some, this article is just PR talk that wants to control the narrative.

You can see that commenting on the article is not possible. They don't want any patients telling their side of the story. They want the public to believe that critics are unreasonable.

 

[Barry53]

Important to remember the CBT used in Crawley's FitNet trial is not CBT to cope with illness but to from the FitNet protocol "challenge cognitive processes that maintain the illness'. See photo below from FitNet protocol describing type of CBT being used.

Supportive versus directive.

 

[Barry53]

Some still dismiss it as a non-illness; others decry attempts to treat it with psychological therapy.

Such sneaky way to infer that those who believe ME is biological, are on a par with those who deny its existence at all. In principle the statement is factually correct, but by construct it bends the truth enormously. The semi-colon is not a piece of bad English, it is a very carefully constructed sentence.

 

[AndyPR]

Guys, if you can afford to, donate to research. Open Medicine Foundation, Solve MECFS Initiative, Microbe Discovery Project, Invest in ME and more. The more money that these guys get, the sooner the biomarkers and treatments for ME will come, and the sooner the day when we can shut Crawley and her SMC buddies up.

If you can't afford to, ask your family and friends, especially with Thanksgiving and Christmas coming up.

End of public service announcement.

 

[Ysabelle-S]

Pleading and bargaining stage again, with some backsliding into anger, and even some stage one denial cropping up. We really are seeing the five stages of grief here. Depression comes next, then acceptance. That's not coming soon, unless there's some groundbreaking announcement from the biomedical side shortly, and it's unlikely to develop that quickly, especially with the need for further trials. Phase III rituximab results are still off in 2018. But their behaviour this week does indicate that they have lost ground and their position is now on the slide. All they can do is rely on PR blitzes, misrepresent patients, and call in favours from media cronies. When it comes to science, they are on quicksand. I wonder if they were watching the recent conference in Fort Lauderdale. Between that, papers and announcements on metabolomics, patient and professional criticism of MEGA, the still-bubbling scandal of PACE, they are really struggling here. How much worse that some of the worst characters appear to have retired leaving the toxic parcel in the hands of others who are now struggling against the incoming tide of biomedical science.

 

[Ysabelle-S]

Guys, if you can afford to, donate to research. Open Medicine Foundation, Solve MECFS Initiative, Microbe Discovery Project, Invest in ME and more. The more money that these guys get, the sooner the biomarkers and treatments for ME will come, and the sooner the day when we can shut Crawley and her SMC buddies up.

If you can't afford to, ask your family and friends, especially with Thanksgiving and Christmas coming up.

End of public service announcement.

I hope to donate a bit more to one of these charities in the next few weeks. The abysmal state of UK medicine just makes me more supportive of research abroad.

 

[Ysabelle-S]

"All those interested in progress on helping those with CFS should unite in the push to find therapies, be they behavioural or biomedical" - I think they should turn up at an international conference and tell the biomedical researchers that. Maybe they could fit it in between rituximab, metabolomics, enteroviruses, or the issue of what's in our blood.

 

[helperofearth123]

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.

 

[Countrygirl]

Does EC attend IIME conferences? Does Holgate?

If they are sincere in wanting to help ME they most certainly would.

I've never heard that they do so.

Does anyone know?

If not, would IIME send them an invite? Perhaps they do?

 

[Yogi]

Does EC attend IIME conferences? Does Holgate?

If they are sincere in wanting to help ME they most certainly would.

I've never heard that they do so.

Does anyone know?

If not, would IIME send them an invite? Perhaps they do?

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.

 

[alex3619]

What psychiatry has to do is stop accepting extremely poor methodologies in their research, and adopt rigorous scientific methodology. Not what they call rigorous scientific methodology, but what the wider scientific community recognize as rigorous scientific methodology. Research methods that can derive positive outcomes even when patients get worse or there is no effect have no place in science or medicine. Its called psychobabble for a reason.

Here are three words I hope they remember: objective outcome measures.

 

[jodie100]

There are actually a lot of good things in this article compared to the typical media articles - the acknowledgments of the following:

- that CFS/M.E. is not a single illness
-that we do not know much about it
-that it differs in children and adults
-that treatments don't work for everybody
-that CFS/M.E. is different to normal fatigue
-that patients do want to be able to do things
-that CFS is heritable
-that the metabolism is affected
-that just because the biology of CFS is not understood it does not mean it should be considered a psychological illness
-that the use of behavioural therapies does not imply it is a psychological illness

I realise they are mostly obvious things to M.E. sufferers, but I don't think they are properly understood by the general public or by a lot of doctors, so I am pleased to see this article in a magazine like the New Scientist. It would have been good if post exertional malaise had also been mentioned, and the fact that overdoing it longterm or to an extreme level can lead to a decline in ability for long phases of time.

 

[Ysabelle-S]

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

A-ha! Still, not surprised. But it does show they prefer to mix in an echo chamber of their own views, which is not helping them adjust to reality. It just reinforces their blind spots.