Crawley: How to deal with anti-science BRS2017

[Wolfiness]

I.e. EC's talk was perfectly appropriate in this context and we are up against much more than isolated outbreaks of f*ckwits.

 

[Dx Revision Watch]

Crawley's employer, Bristol University, should also be informed, I think. Any volunteers?

I don't feel able to write to them, as I have already written to the Vice Chancellor a few months ago about her research, and had no response. I think it needs to be someone with either a charity behind them, or professional standing.

@charles shepherd, is this something you could do as spokesperson for the MEA?

If anyone does contact the university, I think they need to be sent copies the screenshots from her lecture, pointing out why they are inappropriate and unprofessional.

From another thread, response from Dr Shepherd:

http://forums.phoenixrising.me/inde...virology-blog-post-may-3rd.51174/#post-844917

As I/we have stated many times before, the MEA has no current intention of leaving our position as a charity representative on the Board of the CMRC

Belonging to a group such as this, which consists of a very wide spectrum of clinical and research opinion on both cause and management of ME/CFS, is obviously a very challenging and difficult task at times

But I/we believe it is far more important to be 'inside the tent' of an organisation such as this, especially when it has a considerable influence over the direction that research into ME/CFS is moving forward here in the UK

This means that I/we will agree with my colleagues on the CMRC Board at times

And I/we will disagree at other times

I/we apply exactly the same principle of being willing to sit down with people we may disagree with in relation to the work that we do on behalf of people with ME/CFS at the DWP (on benefits) and with NICE (on the 2007 NICE guideline) and elsewhere

In relation to the subject under discussion, I know and like David Tuller (I invited him to come down to stay with us in the Cotswolds in December last year) and I have been in contact with David over the past few days

I also wrote to Stephen Holgate and my colleagues on the Board of the CMRC yesterday to raise a number of concerns and objections about the presentation AND to make it clear that I/we fully support members of the patient community who have made constructive use of Freedom of Information Act to obtain unpublished data from the PACE trial.

Questioning the validity of the PACE trial data has nothing to do with either harassment or behaving in a vexatious manner

CS

Has Dr Shepherd's letter to Prof Holgate been published?
Has Dr Shepherd's letter received a response from Prof Holgate?

 

[Dx Revision Watch]

https://twitter.com/BritRenalSoc/with_replies

Well at least one person was...

https://twitter.com/i/web/status/857860048177049600

I see she was Keynote speaker, too:

https://twitter.com/i/web/status/857673112086818816

 

[TiredSam]

Dr Sridharan was a speaker at the conference:

https://eventmobi.com/brs2017/agenda/231871/1181432

Body Habitus, Physical Activity and Dialysis Requirement Speaker - Sivakumar Sridharan: Acting Consultant Nephrologist, Lister Hospital

His session was chaired by vice-president of the BRS council and Esther Crawley fan Paula Ormandy, Professor in long-term conditions research at the University of Salford:

Sivakumar Sridharan's research focus for his PhD was on energy expenditure in kidney disease and its implications for management. He received two BRS research project grants for his PhD. He is currently leading a BRS-funded study exploring physical activity in chronic kidney disease.

https://eventmobi.com/brs2017/speakers/231873/5184976

(from https://britishrenal.org/research-in-progress/#1484580618123-92bcf5c8-9da7)

Hi

I am not a member of BRS. I don't think there is any formal membership as far as I know. I do not know any specific persons to contact in BRS regarding this other than whatever is there on their website. I am not related to BRS organisation in anyway. Sorry.

Yeah right.

The conference app with details of attendees, speakers, program etc is available here:

https://eventmobi.com/brs2017/

 

[slysaint]

British renal society

I sent them a brief email with the link to David Tullers letter.

 

[lilpink]

[Edit: Honestly, this is totally shocking. Why ISN'T this published someplace else? You'd think a study this dramatic would have a lot of traction in a nice kidney disease journal at the very least...]

Indeed. And very pertinent to me personally now.

 

[TiredSam]

I am Dr Siva Sridharan and I am a nephrologist. I attended BRS conference just as a delegate like everyone else.

Not really.

As I said, I am just a delegate who registered for the conference just like many hundred others. I have no inside knowledge of how the conference was organised. I am not connected to BRS in any official way.

A speaker at the conference rather than a delegate. 2 BRS grants as a PhD student, currently doing research for them with another grant now. It’s clear from twitter how they all know each other – of course they do, it’s what these conferences are for. Just before the conference Dr Sridharan tweeted about how much he’s looking forward to networking. He’s an unofficial tweeter, they all know him. They all watch each other’s presentations, dine together, and end up in the bar with someone on the guitar while they have a jolly until the small hours. Excuse me if I don’t post the tweets. Then they all move on to the next conference and see each other again. As a speaker he would have to have had contact with the organisers before and during the event, he knows them. His presentation was chaired by the vice-president.

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.

When the BPS bubble claim that ME militants (the BPS definition of "militant" being someone who politely calls bullshit from their sofa when they are well enough to do so) are driving away researchers, what they mean is that they are discouraging researchers from working with the BPS bubble. That’s a good thing. If the CMRC collapses it will send a clear message to researchers who decide to suspend their critical faculties and work with these charletans. They will end up tainted by getting involved with people with no ethical standards or scientific integrity, and part of a failed enterprise. Everyone should now stand up to the BPS bubble and call them out on their bullshit.

 

[dangermouse]

What is in that document is utterly disgusting. It just shows the extent to which they are desperate to control the narrative, bringing in the harassment claims, and this line here: "Working with trusted journalists to cover the problems associated with CFS/ME research." Yes, we know all about them co-opting journalists, no doubt through the usual professional appealing to professional networks, but that won't make either the scandal or the rightful criticisms of their quack 'research' go away. The level of abuse directed at ME patients and the shocking treatment at the hands of so-called medical professionals is going to come out sooner or later. The CRMC is not fit for purpose, and I have no faith in this organisation whatsoever.

I shouldn't have been surprised, but I am. Its disgraceful. I agree, I have no faith in the CRMC and you are right in your observation, it's not fit for purpose.

 

[Dx Revision Watch]

...If the CMRC collapses it will send a clear message to researchers who decide to suspend their critical faculties and work with these charletans. They will end up tainted by getting involved with people with no ethical standards or scientific integrity, and part of a failed enterprise. Everyone should now stand up to the BPS bubble and call them out on their bullshit.

But I don't think it will collapse.

As I/we have stated many times before, the MEA has no current intention of leaving our position as a charity representative on the Board of the CMRC.

The ME Association should put their continued support for the CMRC out to their membership - not through a poll - but as a membership vote with the next trustee election ballot papers.

The Board of Trustees represents the membership - not its own position or the position of selected of its trustees.

 

[Dx Revision Watch]

http://www.meassociation.org.uk/res...e/cmrc-executive-committee-becoming-a-member/

As at March 2017, members of the executive committee were:

Chair Professor Stephen Holgate (University of Southampton) and
Deputy Chair Dr Esther Crawley (University of Bristol).

Dr Mark Edwards (University College London),
Dr Zoe Gotts (University of Northumbria),
Professor Paul Little (University of Southampton),
Professor Julia Newton (University of Newcastle),
Professor Carmine Pariante (King’s College London),
Professor Hugh Perry (Chair of Neurosciences Board, MRC), and
Professor Chris Ponting (Deputy Director of Functional Genomics Unit, MRC).

Charity membership is represented by Jan McKendrick (ME Research UK), Sonya Chowdhury (Action for M.E.), Dr Charles Shepherd (ME Association), and Mary Jane Willows (Association Young People with ME).

Michael Dalrymple from charity, MRC-Technology, has joined the board, along with Mark Jones representing UCB a leading biopharmaceutical.

Observers are Dr Neha Issar-Brown, (Medical Research Council), Ed Sykes (Science Media Centre), Dr Gabrielle Murphy (BACME) and others who represent Wellcome Trust and the National Institute for Health Research.

 

[Ysabelle-S]

If the Science Media Centre is anywhere near them, then I wouldn't trust this organisation. Sorry, but we all know the SMC's disgraceful history on ME.

 

[slysaint]

Mary Jane Willows (Association Young People with ME)

Is she still on it? Even when AYME no longer exists?..........as she is now a rep for AfME why does it 'need' the two of them (ie her and SC)?

 

[dangermouse]

But I don't think it will collapse.



The ME Association should put their continued support for the CMRC out to their membership - not through a poll - but as a membership vote with the next trustee election ballot papers.

The Board of Trustees represents the membership - not it's own position or the position of selected of its trustees.

I struggle to research/read into things (such as the creation of the CMRC) and only by being on PR have I discovered information about the involvement of the BPS ilk (which I have found thoroughly shocking).

I am a member of MEA and until recently I was unaware of the CMRC and the influence of the BPS (especially the formation of it, from the bits I've seen from Tymes Trust).

If I didn't know all of this then I'd be placing my full trust (as I have been doing) in the CMRC. I'm sure there are many in a similar situation who are MEA members.

I'm shocked and quite knocked for six at the moment. I had wondered how /why Dr Crawley was part of the CMRC and how/why she was involved with MEGA.

I'm considering cancelling my membership of MEA, it's not much but that bit of money could be going to Ron Davis instead.

 

[Dx Revision Watch]

Is she still on it? Even when AYME no longer exists?..........as she is now a rep for AfME why does it 'need' the two of them (ie her and SC)?

I don't know whether Mary-Jane Willows remains a member of the executive committee. The MEA's webpage has not been updated to reflect the folding of AYME.

 

[Dx Revision Watch]

If the Science Media Centre is anywhere near them, then I wouldn't trust this organisation. Sorry, but we all know the SMC's disgraceful history on ME.

SMC firmly embedded in the CMRC from the outset:

https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf

Extract:

(quote 18) from Action Points
- SMC – run FOI Act brainstorm
- ALL – look for opportunities to publicise CFS/ME research and give background information about the condition

- Support4rs – work with Peter White and Simon Wessely to develop resources for dealing with harassment
- SMC – run a press briefing on biosocial illness to improve public understanding. Fiona Fox to get information from Trudie Chalder and Rona Ross-Morris
.

 

[TiredSam]

Ed Sykes, SMC Head of Mental Health, attends the meetings of the Executive Board on behalf of the SMC

Why did the SMC consider that the appropriate person to send as an observer was their Head of Mental Health?

This whole project has been riddled with filth since the beginning.

 

[Ysabelle-S]

I struggle to research/read into things (such as the creation of the CMRC) and only by being on PR have I discovered information about the involvement of the BPS ilk (which I have found thoroughly shocking).

I am a member of MEA and until recently I was unaware of the CMRC and the influence of the BPS (especially the formation of it, from the bits I've seen from Tymes Trust).

If I didn't know all of this then I'd be placing my full trust (as I have been doing) in the CMRC. I'm sure there are many in a similar situation who are MEA members.

I'm shocked and quite knocked for six at the moment. I had wondered how /why Dr Crawley was part of the CMRC and how/why she was involved with MEGA.

I'm considering cancelling my membership of MEA, it's not much but that bit of money could be going to Ron Davis instead.

As far as I recall, I've only donated money to a Spanish study (can't remember which), and the OMF. I wanted to donate to the Columbia team but I think they wanted credit card rather than paypal.

SMC firmly embedded in the CMRC from the outset:

https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf

Extract:

(quote 18) from Action Points
- SMC – run FOI Act brainstorm
- ALL – look for opportunities to publicise CFS/ME research and give background information about the condition

- Support4rs – work with Peter White and Simon Wessely to develop resources for dealing with harassment
- SMC – run a press briefing on biosocial illness to improve public understanding. Fiona Fox to get information from Trudie Chalder and Rona Ross-Morris
.

Those names are the last straw for me. The CRMC is not fit for purpose, least of all with the involvement of the toxic PR machine that is the SMC.

 

[Chrisb]

I have been out of the world for a very long time, but every time I look at that CMRC Charter it seems a perplexing document.

The CMRC, although it has a charter, makes no mention of its legal status, or what other documents might be relevant. It appears to have no finances - at least it appears to have no treasurer. It is not clear that members have a right to see or call for the production of accounts. To put it simply, it is not at all clear what members are members of.

 

[lilpink]

Those names are the last straw for me. The CRMC is not fit for purpose, least of all with the involvement of the toxic PR machine that is the SMC.

Never forget your OMEGA : https://www.change.org/p/opposing-m...autopublish&utm_term=des-lg-no_src-reason_msg

 

[Dx Revision Watch]

SMC firmly embedded in the CMRC from the outset:

https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf

Extract:

(quote 18) from Action Points
- SMC – run FOI Act brainstorm
- ALL – look for opportunities to publicise CFS/ME research and give background information about the condition

- Support4rs – work with Peter White and Simon Wessely to develop resources for dealing with harassment
- SMC – run a press briefing on biosocial illness to improve public understanding. Fiona Fox to get information from Trudie Chalder and Rona Ross-Morris
.

And Bravo to Jane Colby and TYMES Trust for not wanting to put their names to a collaborative built on the foundations above.