Crawley: How to deal with anti-science BRS2017

Countrygirl

Countrygirl

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http://www.stopget.org/2017/05/refusing/

Missing More after graded exercise therapy is a series of posts from the perspective of people with ME for ME Awareness Month (May). If you have a story to share about exercise and ME see this post for instructions about how to contribute.

Graded Exercise Therapy (GET) is one of the two main ‘treatments’ for ME in the UK, under current clinical guidelines. Many people with ME are aware of the problems with exercise and ME and are reluctant to risk getting worse. A concern many of us have is about what happens when you refuse the official therapy, especially if you refuse on behalf of a child. Here Ann* shares her experience of trying to resist graded exercise therapy on behalf of her daughter Sara*:

My profoundly ill daughter Sara, was in hospital, bedridden unable to tolerate light, noise, most foods, the presence of people in her room, unable to talk without severely impacting on her health. She was deteriorating before our eyes.

The doctor recommended graded exercise therapy and when we refused it he wrote “resistant to care” in her notes. From that point on many of the nurses became abusive towards her, bright lights on needlessly, loud talking, the door left open. Her deterioration speeded up rapidly due to the “exertion” of coping with the lights, noise…

Graded exercise therapy can harm even if you refuse it.
The doctors wouldn’t look at the information we took from the Workwell Foundation but the physiotherapists did – they read the papers and said “we could do a lot of harm here, she needs to rest.”

People need to look at the neuroscience and exercise physiology, objective measures of the physiological changes in people with ME (ICC criteria) and ME/CFS (CCC criteria). Activity management and pacing with heart rate monitors, temperature changes, heat rate variability is useful as well. The CCC and ICC have guidelines for self management – dump the current NICE guidelines and bring the UK into modern day times!

[The £5m study into ME activity management with substantial methodological flaws] PACE has harmed people worldwide
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slysaint

slysaint

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slysaint said:
But then Crawley doesn't recognise the severely affected as having ME. Makes me wonder exactly what she considers 'chronic disabling fatigue'.
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Well wouldn't you know it...........she has created a new diagnosis CDF :

http://adc.bmj.com/content/early/2017/01/19/archdischild-2016-311198

"We identified adolescents who had disabling fatigue of >6 months duration without a known cause at ages 13, 16 and 18 years. We use the term ‘chronic disabling fatigue’ (CDF) because CFS/ME was not verified by clinical diagnosis."

"Conclusions The prevalence of CDF lasting 6 months or longer (a proxy for clinically diagnosed CFS/ME) increases from 13 to 18 years. However, persistent CDF is rare in adolescents, with approximately 75% recovering after 2–3 years."

The term CDF is used throughout the report.
 
C

Chrisb

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"As children in our study were not examined by a physician, we have used the term "Chronic Disabling Fatigue" (CDF) rather than CFS/ME, to indicate chronic fatigue that is disabling."

It would appear that chronic disabling fatigue in children is of such significance that it does not merit the attention of a physician.
 
S

Sean

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Just the latest in the endless parade of new names and acronyms and categories that is a core tactic in the distract-and-misdirect game.

The rate at which they propose new ones is a very good measure of how little they understand, and how reluctant they are to admit it. The faster the rate, the more they have to hide.
 
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Barry53

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Chrisb said:
"As children in our study were not examined by a physician, we have used the term "Chronic Disabling Fatigue" (CDF) rather than CFS/ME, to indicate chronic fatigue that is disabling."

It would appear that chronic disabling fatigue in children is of such significance that it does not merit the attention of a physician.
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And indeed may have nothing to do with ME/CFS in the slightest. Maybe just starting to concede that could have been the case all along.
 
slysaint

slysaint

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I'm pretty sure this report has been changed; I don't remember the acronym CDF being used before.
Anyone have the 'original'?

this was the aged 16:
http://pediatrics.aappublications.o...00&nfstatusdescription=ERROR:+No+local+token/

"RESULTS: The prevalence of CFS was 1.86% (95% confidence interval [CI]: 1.47 to 2.24). After excluding children with high levels of depressive symptoms, the prevalence was 0.60% (95% CI: 0.37 to 0.84). Authorized school absences were much higher (mean difference: 35.6 [95% CI: 26.4 to 44.9] half-day sessions per academic year) and reported depressive symptoms were much more likely (odds ratio [OR]: 11.0 [95% CI: 5.92 to 20.4]) in children with CFS than in those without CFS. Female gender (OR: 1.95 [95% CI: 1.33 to 2.86]) and family adversity (OR: 1.20 [95% CI: 1.01 to 1.42] per unit family adversity index) were also associated with CFS.

CONCLUSIONS: CFS affected 1.9% of 16-year-olds in a UK birth cohort and was positively associated with higher family adversity. Gender was a risk factor at age 16 years but not at age 13 years or in 16-year-olds without high levels of depressive symptoms."


Yet she still says "
Dr Esther Crawley, a consultant paediatrician specialising in CFS/ME and the senior author of the report, said:

This is an important study because it shows that CFS/ME is much more common in teenagers than previously recognised. Treatment at this age is effective for most children but few have access to treatment in the UK. Children attending my specialist service at the Royal United Hospital in Bath only attend two days a week of school on average. This means that only the most severe cases are getting help. As paediatricians, we need to get better at identifying CFS/ME, particularly in those children from disadvantaged backgrounds who may be less able to access specialist care."

the CDF thing seems to have been a new way to 'justify' the research.
 
Cheshire

Cheshire

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Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative

by David Tuller, DrPH

Not long ago, at the annual conference of the British Renal Society, your deputy chair disseminated the false accusation that I had libeled her. As a corollary to that, she also disseminated the false accusation that Dr. Racaniello, the Columbia University microbiologist who hosts Virology Blog, had libeled her by publishing my work. I provided Dr. Crawley with a reasonable opportunity to offer either an explanation, evidence to support her serious charge, or an apology. Dr. Crawley has done none of these things.
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http://www.virology.ws/2017/05/08/t...he-board-of-the-cfsme-research-collaborative/
 
Large Donner

Large Donner

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Chrisb said:
It would appear that chronic disabling fatigue in children is of such significance that it does not merit the attention of a physician.
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Well when you do things like random telephone surveys asking subjective open ended questions you can make up any kind of subset you want. I bet none of these people even knew their responses were being used in a medical paper and none of them have even considered themselves to be ill let alone visited a doctor with a symptom profile.
 
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A.B.

A.B.

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David Tuller said:
On June 1st, I am honored to be giving the keynote presentation at the dinner before this year’s Invest in ME conference. I was planning to talk about PACE, and why it is–in my opinion—an incoherent pile of nonsense. I had not planned on talking about Dr. Crawley or the CMRC. Thanks to Dr. Crawley’s attention-getting performance, my plans have now obviously changed. I will of course still discuss PACE’s failings. But I’ve never been accused of libel before, so I’m eager to share the experience with colleagues.
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Good job Crawley, now your reputation will suffer even more. CBT/GET are based on lies. The longer you refuse to admit this, the worse it will be for you in the end.
 
Y

Ysabelle-S

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The letter to the CMRC is terrific. Even better, Tuller has her slides and the opportunity to show what she was up to at the BRS. And that gives him further incentive to discuss the whole bloody shambles of the PACE trial and its supporters. As for the CMRC - I have absolutely no faith in them. None whatsoever.
 
Snowdrop

Snowdrop

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slysaint said:
As paediatricians, we need to get better at identifying CFS/ME, particularly in those children from disadvantaged backgrounds who may be less able to access specialist care."
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OR: especially we'd like to target those children we think will be less likely to have people who can stand up for them and make it stick because of their low social status thus ensuring a pool of children who I can continue to 'treat'.
 
2

2kidswithME

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Oxfordshire, England
2kidswithME said:
On further reflection I decided to write EC herself about using the World Vision photo, as it made me very angry. I've now done so, suggesting she apologise and send a generous donation towards their work in Armenia. I decided to copy World Vision Armenia and world vision U.K., so they are aware she has misused their photo, almost certainly without permission. In the unlikely event that EC responds, I'll post the response, after I've picked myself up off the floor!
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Just to say I've had a response from World Vision UK thanking me for letting them know about EC's use of their photo and their communications and legal teams will be investigating the matter.
 
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