Crawley: How to deal with anti-science BRS2017

[RogerBlack]

They remain a problem, despite the science moving on.
For example, the Wessley wikipedia page contains a controversy section entirely due to the guardian article.
This controversy section is largely based off the guardian article, and is hard to remove, as people are arguing there must be some basis in fact for a story in a national paper.
And where do journalists likely go first if they want to look at a name, but aren't familiar with it?

 

[Somer]

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.

I don't know where the 75% figure recovering in 2-3 years comes from but can you say 25% not recovering within 2-3 years is 'rare'??
& presumably, as 'specialist' services are few & far between a lot of these young people are recovering without any specialist input.
It's the 1/4 (or a 1/3 depending on which figures EC is using) who don't improve within a relatively shorter duration that EC seemingly refuses to accept have a longer duration M.E & where things like anxiety/depression/other barriers to recovery are blamed as the cause & which has such far reaching implications for dealing with education & other support services.

She appears to take credit for recoveries that would happen anyway (with good pacing) & yet won't take responsibility for saying that M.E has different trajectories for different people.

 

[Somer]

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.org/content/early/2016/01/22/peds.2015-3434?sso=1&sso_redirect_count=1&nfstatus=401&nftoken=00000000-0000-0000-0000-000000000000&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.

'Only attend two days a week of school on average' . This means that only the most severe cases are getting help?? To attend 2 days school a week, every week, you need to be functioning pretty well. I could be wrong but I wouldn't define that as 'severe'. This is of course unless those students are struggling into school & barely coping & crashing the rest of the time.
Tymes Trust advice on education is very sound. Improved health not increased school attendance should be the foremost aim with suitable education provided (often home tutors).

 

[MEMum]

Hard to know what the "CMRC" can do

I don't know where the 75% figure recovering in 2-3 years comes from but can you say 25% not recovering within 2-3 years is 'rare'??
& presumably, as 'specialist' services are few & far between a lot of these young people are recovering without any specialist input.
It's the 1/4 (or a 1/3 depending on which figures EC is using) who don't improve within a relatively shorter duration that EC seemingly refuses to accept have a longer duration M.E & where things like anxiety/depression/other barriers to recovery are blamed as the cause & which has such far reaching implications for dealing with education & other support services.

She appears to take credit for recoveries that would happen anyway (with good pacing) & yet won't take responsibility for saying that M.E has different trajectories for different people.

I vaguely remember that when i last looked into this, the high recovery rate was quoted by Dr DeMeiler.
No idea where that ref is now. Any ideas @AndyPR @Dolphin .....

 

[Jo Best]

The charity Invest in ME Research published a statement in April 2013, prior to the launch of the CMRC, titled 'A Tale of Two Collaboratives': http://www.investinme.org/IIME-Newslet-1304-01.shtml
It's quite a long piece but worth reading, I think, and has useful references. Just two quotes:

Research into ME needs a strategic approach - but it may be destined to fail completely by attempting to establish the way forward on foundations which include so much of what has been wrong in the past.

We believe there is a clear case to be made for segregating the biomedical from the psychosocial here and now. This could then force a separation of fatigue research from ME research and possibly also settle on the correct taxonomy for this disease which currently remains, to us, as myalgic encephalomyelitis.

 

[RogerBlack]

On the BRS twitter account they tweeted about all the presentations, but there’s no mention of Crawley’s. That could be a good sign. The sooner word gets round that she’s a toxic brand and anyone who collaborates with her gets tainted the better. And it can’t be blamed on ME militants any more, it’s respected journalists, academics and researchers. Tuller doesn't have to take it lying down like we do, he can stand up to it.

This is not correct. BRS tweeted a link to Sridharans collection of tweets with the slides.

After he deleted them, this went to the standard 'this tweet is unavailable'. I am unsure if the original tweet retweeting has been deleted.

 

[MEMum]

I have grave concerns re the CMRC as well
I remember that Charles Shepherd explained a while ago that it does not have staff or funds. The admin and conference are arranged with the help of AfME. Hope that's right @charles shepherd.

If the MEA and MERUK reps leave, who else knows much about ME? Prof Holgate's knowledge of the condition is limited, as he says himself. Dr Julia Newton knows a great deal, especially on POTS and muscles. If AfME and BACME are the only patient/advocate members what on earth would they get up to then? Be totally (even more so) under the Crawley influence.
I think Hugh Perry spoke at an IiME conference a few years ago - on sickness behaviour. I understand that many others are new to the ME field.....

Dr Shepherd is not likely to publish his emails to Prof Holgate or a reply. He is a discussion/mediation guy.
I have great respect for this stance, given his decades of experience.
Sure life is about instant response and action in our social media days but that's not the only way.

I would also prefer MEA and MERUK to remain in the conversation to provide some science-based input.

 

[Jo Best]

The charity Invest in ME Research published a statement in April 2013, prior to the launch of the CMRC, titled 'A Tale of Two Collaboratives': http://www.investinme.org/IIME-Newslet-1304-01.shtml
It's quite a long piece but worth reading, I think, and has useful references. Just two quotes:

Then in September 2013 Invest in ME Research published a statement on a research funding announcement for two research projects (the graded exercise trial went on to become known as MAGENTA). The RIGHT Stuff: http://future.cofeforme.eu/IIME-Newslet-1309-05 The Right Stuff.shtml

 

[Dx Revision Watch]

https://twitter.com/i/web/status/857880575415377921

Dr Shepherd is not likely to publish his emails to Prof Holgate or a reply. He is a discussion/mediation guy.
I have great respect for this stance, given his decades of experience.
Sure life is about instant response and action in our social media days but that's not the only way.

I would also prefer MEA and MERUK to remain in the conversation to provide some science-based input.

Both orgs should walk away. Crawley's continued involvement is untenable.

And I don't agree that exchanges between Prof Holgate and Dr Shepherd regarding the behaviour of an executive member of the CMRC should be "behind closed doors". Dr Shepherd sits on the CMRC as a rep for the members of the MEA. They have a right to know what was said in their names and how Prof Holgate fields what was said.

 

[Chrisb]

Another very obvious problem with the charter is that it does not state the duties of the Board members or what powers are delegated to them by the membership. It would appear that the board has no power to act in the name of the "collaborative" except in ways expressly authorised by the membership in general or other meeting.

 

[Dx Revision Watch]

https://www.actionforme.org.uk/uploads/pdfs/cmrc-board-meeting-270416.pdf

UK CFS/ME Research Collaborative Minutes of Executive Board meeting
27 April 2016

(...)

4
Board Membership

The current Charter is quite prescriptive in terms of membership and therefore it was proposed that further revisions would be made to the Charter (and outlined at the AGM) with a ‘terms of reference’ document being developed for the Board. This would also reduce the length of the Charter. Changes would then need to be re-circulated to members and final approval confirmed at the next meeting. SC will also include clarification as per discussions re communication/conduct.

 

[Chrisb]

https://www.actionforme.org.uk/uploads/pdfs/cmrc-board-meeting-270416.pdf

UK CFS/ME Research Collaborative Minutes of Executive Board meeting
27 April 2016

(...)

4
Board Membership

The current Charter is quite prescriptive in terms of membership and therefore it was proposed that further revisions would be made to the Charter (and outlined at the AGM) with a ‘terms of reference’ document being developed for the Board. This would also reduce the length of the Charter. Changes would then need to be re-circulated to members and final approval confirmed at the next meeting. SC will also include clarification as per discussions re communication/conduct.

Where in the charter under which the board was operating were they given power to co-opt a new member to the board. The organisation seems to have all the democracy and accountability which would be expected.

EDIT I would have thought that the board can only act in the name of the organisation if it has express, implied or ostensible authority to do so. It is not clear which of these they would claim.

 

[Dx Revision Watch]

Draft Minutes from meeting March 21, 2017:

http://www.meassociation.org.uk/201...rative-executive-board-meeting-21-march-2017/

"SC reported that MJW will be standing down from the Board due to the pending closure of AYME on 3 April 2017 and the launch of Children’s Services by Action for M.E. MJW will transfer to Action for M.E. as the new Head of Children’s Services. Action for M.E. representation will continue to be provided by SC."

So that answers that question.

 

[Dx Revision Watch]

http://www.meassociation.org.uk/201...rative-executive-board-meeting-21-march-2017/

"2. WHAT GOOD LOOKS LIKE: HOW TO OPTIMISE THE ACADEMIA, CHARITY AND INDUSTRY PARTNERSHIP

SH provided an introduction and background to the discussion. He outlined that this is an area of medical science that has been significantly neglected for many years. He would like to see a formal UK report identifying why this considerable group of people have been ignored and why medical scientists have not wanted to get involved in this field."

That'll be because you are all druggie, ex cons from abusive, disadvantaged backgrounds, with minimal education, living in rusty containers. Simples.

 

[Countrygirl]

That'll be because you are all druggie, ex cons from abusive, disadvantaged backgrounds, with minimal education, living in rusty containers. Simples.

Two typical members of the ME Association caught in the act.

 

[Jan]

http://www.meassociation.org.uk/201...rative-executive-board-meeting-21-march-2017/

"2. WHAT GOOD LOOKS LIKE: HOW TO OPTIMISE THE ACADEMIA, CHARITY AND INDUSTRY PARTNERSHIP

SH provided an introduction and background to the discussion. He outlined that this is an area of medical science that has been significantly neglected for many years. He would like to see a formal UK report identifying why this considerable group of people have been ignored and why medical scientists have not wanted to get involved in this field."

That'll be because you are all druggie, ex cons from abusive, disadvantaged backgrounds, with minimal education, living in rusty containers. Simples.

SH would like to see a formal report? Can he not work it out for himself why the money hasn't been going in the direction of biomedical research? Would he like a little hint? SW, PW, MS, TC, EC, etc seem to have no trouble whatsoever gaining millions of pounds of research funding, churning out one pointless study after another, adding nothing to the knowledge regarding the disease. What have the members of the board been doing btw? Can anyone tell me what it is they do achieve?

We would all also very much like to see a report, or better still, a public enquiry into why biomedical research has been so thoroughly neglected in the UK.

I expect nothing will change, the UK will continue to give all research funding to the BPS supporters. It's so embarrassing now when other countries are so far ahead in research and acknowledgement of the serious nature of the disease. Old Blighty is still stuck in the 80's, still trying to convince the world it isn't real.

 

[MEMum]

If we thought there would be media coverage of why two major ME charities were leaving the CMRC there might be merit in them exiting the tent.
But if it's not going to result in CMRC collapsing, or even being bruised what would the ME community gain?

 

[Somer]

The charity Invest in ME Research published a statement in April 2013, prior to the launch of the CMRC, titled 'A Tale of Two Collaboratives': http://www.investinme.org/IIME-Newslet-1304-01.shtml
It's quite a long piece but worth reading, I think, and has useful references. Just two quotes:

Thank you @Jo Best - just read
Really good for helping to understand the background to what's being discussed here

 

[Somer]

Then in September 2013 Invest in ME Research published a statement on a research funding announcement for two research projects (the graded exercise trial went on to become known as MAGENTA). The RIGHT Stuff: http://future.cofeforme.eu/IIME-Newslet-1309-05 The Right Stuff.shtml

Also excellent
@Jo Best
I am now stunned at the misdirection of funding

 

[MEMum]

I don't think his vice chair would want such a report.
Talking to Charles Shepherd/Tymes trust/ Invest in ME Research could be a good starting point.