Esther Crawley blog (February 3): "Doing what is right in a controversial field"

[Jo Best]

said Esther.

Tiredness!!!

Really?

Does she think ME is chronic tiredness?

Speechless!

In her own words (2007 but she still says words to the same effect) -

CRAWLEY

I know and if a parent managed to work out that they're tired child needed less sleep I'd probably be out of a job but yeah, so that one of the first things we do we actually sleep restrict and that's really, really hard ...

http://www.bbc.co.uk/radio4/science/casenotes_tr_20071106.shtml

She also says in that interview that the colour coding to grade activity was devised by a patient of hers, which I think was intended by the patient to avoid over-exertion, so I think it was a patient teaching her about pacing.

 

[Snow Leopard]

Isn't it strange that, when you have such power over a child, they say such nice things? Amazing what fair and unbiased surveys can discover. My surveys at school always showed that 9 out of 10 people thought maths was the best subject.

Were they held the day after you (head of maths) bribed all the children with chocolate?

 

[J.G]

It's okay - we live in a Trumpian world now. There's no need to defend alternative facts. Just carp on about making patients gr̶e̶a̶t̶ healthy again and how you're the common man's saviour. Nobody cares about the nitty-gritty of actual effectiveness and such. It's about the message, not the substance.

Besides, should the cognitive dissonance ever become too much, there's always the Conway doublethink. You can start believing that CBT is both effective and ineffective for MECFS - and switch between them as needed depending on the audience. You never lose.

On a more serious note - I don't know if psychiatrists are actually leaving the ME field in some numbers, but it wouldn't surprise me for the simple reason that nobody wants to be on the wrong side of history. The biological writing is (finally!) on the wall and though our understanding of the disease(s) may advance slowly, there's no reversing it. I'm convinced that in a few decades' time we'll look back at CBT, and especially GET, and marvel at our ignorance and folly, much like the way we shake our heads at medical folly of the past now. (A uranium bath anyone, or how about a lobotomy for those neurological issues?) And nobody wants to be the doctor that performed the last lobotomy, so to speak.

 

[Jan]

There's a few people I'd gladly perform a lobotomy on!

 

[trishrhymes]

On a more serious note - I don't know if psychiatrists are actually leaving the ME field in some numbers, but it wouldn't surprise me for the simple reason that nobody wants to be on the wrong side of history. The biological writing is (finally!) on the wall and though our understanding of the disease(s) may advance slowly, there's no reversing it. I'm convinced that in a few decades' time we'll look back at CBT, and especially GET, and marvel at our ignorance and folly, much like the way we shake our heads at medical folly of the past now. (A uranium bath anyone, or how about a lobotomy for those neurological issues?) And nobody wants to be the doctor that performed the last lobotomy, so to speak.

]
I don't know how many psychiatrists have ever been involved in treating ME/CFS.

What seems to have happened is a few powerful psychiatrists set the ball rolling, then the actual treatment of patients is done by OT's physios and psychologists, most of whom probably don't read any medical literature beyond their own professional magazines, and are probably completely unaware of the controversy or of the biomedical research.

With psychologists / CBT therapists running the services being rolled out around the UK offering to take any patients off the GP's hands with MUS / PPS, etc. in other words everything GP's can't diagnose, I'd say if anything, things are going backwards. Psychiatrists may be leaving the field, but psychologists aren't.

The only thing I can see rescuing us from this fate would be a change to the NICE guidelines specifying clearly that GET and CBT are not appropriate treatments for ME, because they don't work, and GET is dangerous.

 

[Graham]

Were they held the day after you (head of maths) bribed all the children with chocolate?

Who said anything about asking the children?

 

[user9876]

Who said anything about asking the children?

I assume you had a question in the form of
"Is maths the best subject" <yes> <no I am thick and as a stupid person prefer drama>

And I suspect you didn't use an intention to treat methodology so those not answering were not included in figures and to be extra safe only gave the survey to those students who you thought like maths (or would say they did).

 

[Barry53]

On a more serious note - I don't know if psychiatrists are actually leaving the ME field in some numbers, but it wouldn't surprise me for the simple reason that nobody wants to be on the wrong side of history. The biological writing is (finally!) on the wall and though our understanding of the disease(s) may advance slowly, there's no reversing it.

Agreed. The writing is on the wall. Finally realising they are on the losing side, so trying to change horses in midstream.

 

[Graham]

Actually, I asked the maths staff mostly, and a couple of A-level maths students. It's important to read the small print, as I kept pointing out to the students. I figured it was time that they got to grips with the way statistics can be carried out really badly, yet few people challenge it. My favourite was the distorted vertical scale. On one homework, the boys genuinely did do better than the girls - average mark something like 9.15 as opposed to 9.12 out of 10. So I did the typical BBC "pound plunges against the dollar graphs" and had them arguing for ages, until one of them finally spotted the vertical scale. The trouble is, one of them must have got employment with the PACE crew when they did their improvement graphs.

 

[Snow Leopard]

Who said anything about asking the children?

Whatever you say.

(I expect the delivery of chocolate to arrive tomorrow)

 

[JohntheJack]

I contacted the NIHR through the website. I suggested that as a publicly funded organization they should not take sides in a scientific debate. I pointed out that current best policy is to involve patients and that it would be only fair to allow a patient to respond to Crawley.

I offered them my own response (a bit of a rehash from by blog response to her 'New Scientist' comment piece). I did a word count and mine is marginally shorter.

My offering is here: https://justpaste.it/13jvb

I have received a response:

Dear Mr Peters,

Thank you for your email regarding the FITNET-NHS study. The content within your email was thoroughly reviewed. All applications to the HTA Programme undergo a comprehensive assessment as described in the ‘general assessment criteria’ document available on our website at http://www.nets.nihr.ac.uk/funding. This includes independent peer-review by both professionals and members of the public. We are content the FITNET-NHS trial has met the criteria listed. We are also content the study is accurately following NICE guidelines.


In addition, thank you for highlighting the inability to comment directly to Professor Crawley’s blog on the NIHR website. The NIHR website does not currently have the facility for responses to be made to blog posts. However, if you would like to direct your comments to Professor Crawley, her details are available online.


We are unable to enter into further correspondence on these issues, but we thank you again for voicing your concerns.

Best Wishes,

Nets monitoring

 

[Barry53]

In addition, thank you for highlighting the inability to comment directly to Professor Crawley’s blog on the NIHR website. The NIHR website does not currently have the facility for responses to be made to blog posts. However, if you would like to direct your comments to Professor Crawley, her details are available online.

This of course is a cop-out. EC's blog is publicly visible, and they are suggesting the only way to reply/refute is privately to the blogger, thereby achieving no public redress.

 

[slysaint]

This of course is a cop-out. EC's blog is publicly visible, and they are suggesting the only way to reply/refute is to privately to the blogger, thereby achieving no public redress.

And if you do email, adding another notch to the harassment charge for future use.

 

[A.B.]

This of course is a cop-out. EC's blog is publicly visible, and they are suggesting the only way to reply/refute is to privately to the blogger, thereby achieving no public redress.

They are very careful to avoid engaging in an actual debate with informed opponents. Wessely once made the mistake of replying to the statnews article on PACE and it didn't end well for him.

 

[Barry53]

When you look here http://www.nihr.ac.uk/news-and-events/features/nihr-blog/?&start=1& and here http://www.nihr.ac.uk/news-and-events/features/nihr-blog/?&start=21&, I see only one face that does not look openly at the camera.

 

[Esther12]

We are unable to enter into further correspondence on these issues, but we thank you again for voicing your concerns.

The poor little things... they're unable to enter into further correspondence on these issues! It must be so difficult to go through life with such severe restrictions. Please, send them my very best wishes for the future.

 

[JohntheJack]

This of course is a cop-out. EC's blog is publicly visible, and they are suggesting the only way to reply/refute is privately to the blogger, thereby achieving no public redress.

Yes, it's an appalling, desultory, dismissive reply.