Crawley: How to deal with anti-science BRS2017

[Large Donner]

Sonya Chowdhury, she is the employee paid to run the charity according to the path set by its board and medical advisors.

Who are the board members and medical advisers and where does the charity get its funding from and how much does it receive from the government if any?

 

[Chrisb]

There is a strange oversight on the AfME website which I noticed yesterday on the listing of Chairman and trustees. Information as to the professional or business interests of everyone is offered apart from those of the Chairman.

 

[Dx Revision Watch]

No they made a decision to fund Crawley. I think they even claimed that it fitted with what patients wanted after a survey they did (claiming it was research into severe ME i think).

The one you are thinking about is funding for Prof White which was initially funded from the CFS research foundation.

I'm quite convinced that AfME don't have the skills to provide oversight and hence fund research.

Thanks for clarifying.

 

[user9876]

There is a strange oversight on the AfME website which I noticed yesterday on the listing of Chairman and trustees. Information as to the professional or business interests of everyone is offered apart from those of the Chairman.

He is quite easy to trace. Fro his linked in page

A specialist in transformation, strategy, leadership and organisational development in the third sector.

Professional experience of over 15 years includes founding Headadvisory a niche third sector advisory services consultancy and co-founding Headrooms, Accipio Consulting and Eco-Chic Restaurants along with senior positions with Accenture, KPMG, A.T. Kearney and a variety of other roles in management consultancy, lobbying and public sector PR.

Clients include a wide range of global organisations in the private, public and voluntary sectors from healthcare providers and retailers through to telecoms, international education institutions, local delivery agencies, national and international charities and virtually every government department in the UK.

Currently Chair of the national charity Action for M.E. along with a variety of other charitable roles

 

[Dx Revision Watch]

Who are the board members and medical advisers and where does the charity get its funding from and how much does it receive from the government if any?

Board of Trustees:
https://www.actionforme.org.uk/about-us/board-of-trustees/

Medical advisors:
https://www.actionforme.org.uk/about-us/our-medical-advisers/

Accounts 2015-16
https://www.actionforme.org.uk/reso...s/strategies-and-accounts/accounts-2015-2016/

Accounts 2014-15
https://www.actionforme.org.uk/reso...counts/trustee-report-and-accounts-2014–2015/

Doesn't receive government funding.

 

[SamanthaJ]

Board of Trustees:
https://www.actionforme.org.uk/about-us/board-of-trustees/

Medical advisors:
https://www.actionforme.org.uk/about-us/our-medical-advisers/

Accounts 2015-16
https://www.actionforme.org.uk/reso...s/strategies-and-accounts/accounts-2015-2016/

Accounts 2014-15
https://www.actionforme.org.uk/resources/our-publications/strategies-and-accounts/trustee-report-and-accounts-2014–2015/

Doesn't receive government funding.

Just looked at the accounts from 2015/16. In 2015 and 2016 there were exceptionally large grants (compared to their other grants - I've lost the part now, but around 70k each) to QMUL, for a study called 'Brain in Pain'. Is this the study they inherited from another charity? (This bit is quite near the bottom of the document if anyone's looking for it)

ETA: Just answered my own question - yes it is that study, it's mentioned in 2014/15 document.

 

[Barry53]

One of several in a series by the look of it:-

http://www.wolfson.qmul.ac.uk/current-projects/brain-in-pain-ii#overview

 

[Daisymay]

Just looked at the accounts from 2015/16. In 2015 and 2016 there were exceptionally large grants (compared to their other grants - I've lost the part now, but around 70k each) to QMUL, for a study called 'Brain in Pain'. Is this the study they inherited from another charity? (This bit is quite near the bottom of the document if anyone's looking for it)

ETA: Just answered my own question - yes it is that study, it's mentioned in 2014/15 document.

Yes it seems it was inherited from the CFS Research Foundation. This from the AfME website:


https://www.actionforme.org.uk/reso...azine/m.e.-body,-m.e.-brain-our-new-research/

"Pain project

The third project was announced in July, having agreed to accept a donation of funds from the CFS Research Foundation funds for research. The Foundation’s Trustees decided to close the charity following the sad death of its co-founder and Honorary Director, Anne Faulkner, who was affected by M.E. since childhood. Founded in 1992 to fund biomedical research, the charity has awarded grants totalling £2 million since its inception.

Action for M.E. will manage the funding (already secured and allocated by the CFS Research Foundation) for the neurophysiology of pain in M.E./CFS study by contracted agreement with Queen Mary University, London.

Sonya Chowdhury, Chief Executive, Action for M.E., says, “We are enormously honoured to be carrying on the work of the CFS Research Foundation with this valuable study. I have met Anne Faulkner’s daughter Jane to express our thanks for her mother’s invaluable contribution to the field of M.E. research.”

This £231,410, three-year study, which began in January, uses cutting-edge technology to investigate how the brains of people with M.E./CFS experience pain and is being carried out by Prof Peter White and Dr Julius Bourke at Bart’s and the London Medical School and the Imanova Centre for Imaging Sciences, Hammersmith Hospital, London."


And links from Queen Marys University website about this research:

http://www.wolfson.qmul.ac.uk/current-projects/brain-in-pain-ii

http://www.wolfson.qmul.ac.uk/current-projects/brain-in-pain-iii

http://www.wolfson.qmul.ac.uk/current-projects/brain-in-pain-iv

 

[Cheshire]

Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther

And on Friday, I finally received from Dr. Holgate an enthusiastic endorsement of Dr. Crawley and her work. The statement made no mention of her recent multi-media spectacle, including her false libel accusation and her portrayal of legitimate requests for information as “vexatious.” In other words, the CMRC has sent me its second “f**k off” message. Happy International ME Awareness Day!

http://www.virology.ws/2017/05/15/t...mrc-affirms-full-support-for-libelous-esther/

The said letter really is a joke: "The CMRC exists to promote the highest quality of basic and applied evidenced-based and peer-reviewed research into CFS/ME and Prof Crawley helps us to do this."

 

[AndyPR]

Am I right in assuming that the charities aren't included in the "CMRC Executive Board", as in "Prof Esther Crawley has the full support of the CMRC Executive Board in her role as Vice-Chair."?

 

[AndyPR]

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs - Petition opposing the attempts of MEGA, with Esther Crawley in charge, to dominate the ME/CFS/Chronic disabling disease/whatever the hell she's calling it now research scene in the UK.

 

[jimells]

When one compares the accomplishments of Ron Davis and team, or the outstanding work of Fluge and Mella, with the accomplishments of the CMRC, well, there is no comparison, actually...

 

[AndyPR]

Posts questioning the charities positions on this statement on Holgate have been made on the Facebook pages of the MEA and AfME (with screenshots taken), I have also messaged MERUK as they have disabled the post to page option.

 

[Yogi]

Should we set up in the advocacy section for everyone to contact ME Research UK and MEA and AFME (the CMRC supporters) before they make their minds up. We could provide the email and telephone numbers for everyone to contact. They might just support Crawley but if they hear from all their members and those who have fund raised for her in the past they may support patients for once in their lives?????

What do you think???

 

[Chrisb]

"She is the clinical lead for the specialist child CFS/ME service at the Royal United Hospital in Bath and, sadly, is one of very few scientists in the UK actively trying to find a way to help children affected by CFS/ME."

At least that is something we can all agree on. Although I may have misunderstood.

 

[trishrhymes]

Should we set up in the advocacy section for everyone to contact ME Research UK and MEA and AFME (the CMRC supporters) before they make their minds up. We could provide the email and telephone numbers for everyone to contact. They might just support Crawley but if they hear from all their members and those who have fund raised for her in the past they may support patients for once in their lives?????

I would agree with promoting the idea of contacting the charities that are part of CMRC to express our strong disapproval of Crawley's criticism of patients, scientists and David Tuller who have questioned her research methods, and who she describes as anti science. We can ask them to make a public statement about this.

I think it's fine to list their organisation e-mail contact details. I don't think it makes sense to list phone numbers, as whoever answers the phone may be at secretarial level or a volunteer, rather than decision makers, and no records may be kept of the calls. We can keep and share (if we want to) our e-mail messages.

 

[Esther12]

Does anyone know exactly who is on the CMRC executive board?

 

[Yogi]

Does anyone know exactly who is on the CMRC executive board?

Science Media Centre , AFME, MRC and various cronies of Esther Crawley.

I knew this CMRC was a scam right from the beginning. This should show everyone else who had small bit of trust that how corrupt CMRC is. It was/is Simon Wessely and Peter White's psychiatric agenda continuing under the guise of biomedical. Holgate is friends with Peter White. This finally shows Stephen Holgate's true colours for anyone who still in doubt about the purpose of CMRC.

 

[user9876]

Holgate's letter has interesting wording. He seems to go out of his way to back Crawley but only by saying that her work is peer reviewed he doesn't seem to be able to bring himself to try to understand the criticisms or comment on them. I wonder if he is trying to leave himself room for deniability.

But it does suggest that the CMRC thinks good science is anything that gets past peer review.

 

[Esther12]

Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Esther



http://www.virology.ws/2017/05/15/t...mrc-affirms-full-support-for-libelous-esther/

The said letter really is a joke: "The CMRC exists to promote the highest quality of basic and applied evidenced-based and peer-reviewed research into CFS/ME and Prof Crawley helps us to do this."

I reckon it would be best to start new threads for new blogs like this, as many people might not want to flick through.

I started a thread here: http://forums.phoenixrising.me/inde...irms-full-support-for-libelous-crawley.51480/