Crawley: How to deal with anti-science BRS2017

[keenly]

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

No it was not.

She is an ignorant con women, a charlatan and a sociopath.

 

[Dx Revision Watch]

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?

"Groundhog Day."

I first became involved in ME advocacy (and the politics surrounding it) in mid 2002. Not long after, in 2003, the MRC created a Research Advisory Group to develop a research strategy; in 2006, a joint Workshop; a CFS/ME Expert Group in 2008; a prioritizing meeting in 2010; a call for proposals in 2011...and so on...

They are all listed here on the MRC site:

https://www.mrc.ac.uk/funding/science-areas/population-systems-medicine/cfsme/#strategy

As Jan says, what is a "formal report" going to tell Prof Holgate that he should have worked out for himself, years ago?

As for "identifying...why medical scientists have not wanted to get involved in this field."

If the money is available, researchers will follow.

None of the allegations of "dangerous patients discouraging researchers" apparently discourages TC, R MM, EC, MS et al from keeping their snouts very firmly stuck in the trough.

And Holgate, himself, helped promote "patients discourage researchers" some years ago in media articles and in articles by the now folded, AYME.

 

[slysaint]

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

Has someone informed Claire Francis.......?
The fact that AfME have not yet mentioned #MM this year on their website speaks volumes.
They started a series of webinars for GPs on May 4th........anyone know anything?
https://www.actionforme.org.uk/news/gps-enthusiastic-to-learn-more-about-me/

On the FITNET-NHS info for parents :
"
What are the benefits of my child taking part in this study?
Your child may benefit from the treatment they receive, but we cannot guarantee this. Some
children with CFS/ME like to know that they are helping
other children in the future. Your child
may also learn about research."...........

 

[Dx Revision Watch]

The fact that AfME have not yet mentioned #MM this year on their website speaks volumes.

#MM?

 

[slysaint]

#MM?

sorry #MillionsMissing

 

[TiredSam]

"Groundhog Day."

I only became ill at the beginning of 2014 and have followed developments / ME politics since then. Looking at some of the links on this thread, I'm fairly shocked to discover that just about everything that's been said about this bunch of grant-grabbing psychopaths and their activities in the last couple of years is just a repetition of what was being said many years earlier.

It’s clear to me that the CMRC is just a front set up by the psychs so they can keep channelling grants to their network, and the inclusion of scientific researchers is just a gimmick to confer legitimacy on their continued squandering of funds. Their present proposal is to duplicate a biobank or something? With lots of squabbling about inclusion criteria and no guarantee of funding to do anything with it?

Surely anyone with an interest in solving ME should be supporting IiME. The idea of working together in the psych brigade’s tent in the hope of influencing them obviously hasn’t worked – EC hasn’t been influenced by anyone outside her psych bubble for years, and she’s obviously calling the shots. She has continued to squander grant funds on rubbish research whilst her disregard for the opinions of not only sufferers but those she is supposed to be collaborating with only becomes more outrageous with each passing year.

Even if she were to be thrown out of the tent on her ear, the CMRC would still be riddled with her cronies. What’s the point of staying in the tent just to confer legitimacy on the psychs (they are not “ME experts” and never were) and watch them squandering funds whilst blatently disregarding their colleagues and all the non-psych research of the last few years?

 

[Chrisb]

Le CMRC? C'est moi.

 

[Chrisb]

Holgate may think the CMRC has no official standing and in a sense he may be right. It is, so far as one can tell, not a legal entity .

However It would probably come as a surprise to members to learn that they were jointly and severally responsible for any liabilities of the organisation. The organisation is simply the sum of its members. Even though they seem not to have given the Board express powers, it may well be that from the point of view of third parties the Board has ostensible authority to bind members.

Strange that a body obtaining sponsorship for conferences, and organising conferences could regard itself as having no official standing.

 

[SamanthaJ]

If Crawley was appointed or elected vice-chair, by the board or the members, surely she is accountable to them and can lose that position if they object to her behaviour? After reading SH's response, I realise now I'm being naive in assuming real-world rules or structures apply. It's probably more like asking the king to sack the queen.

 

[lilpink]

Oh gosh! I feel as though I need to simply add this to my signature to save time: WHY oh WHY are the MEA and MERUK still sticking like limpets to this absurd non official organisation?

And don't forget your OMEGA which is creeping up little by little with each nonsensical episode: https://www.change.org/p/opposing-m...autopublish&utm_term=des-lg-no_src-reason_msg

 

[jimells]

It's interesting to think that the MRC hands out large checks to any informal group of yahoos who happen to ask the right person...

"The Medical Research Council (MRC) and the Science Media Centre (SMC) are two of the UK CMRC Observers... The MRC contributed nearly 5000 [pounds] to the launch of the Collarborative and have stated their willingness to be involved in and contribute further both directly and in kind."

Tymes Trust, Behind the Scenes - Research Collaborative-1.pdf
https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf

Is it correct to say that anyone who takes MRC funds is subject to FOI? I would like to know about all the money handed over to the CMRC, what they have spent it on, and all the correspondence concerning that money.

 

[dangermouse]

Why such apathy from Action for ME?

Why do they not make a stand? Isn't it part of their remit to protect pwME? And how do they not see who is (largely) making up the board?

How can they not see how wrong it is for anyone (absolutely anyone) who had links with PACE,or is a devoted BPS advocate, to have any input into MEGA or any other trial that is focused on finding out biomedical markers for ME.

We are decades behind. We've had PACE. Come on, for goodness sake, isn't it time to clear the decks, fresh start, fresh team (no BPS input) and let's get some answers.

I'm also thinking that the CMRC should be scrapped and a totally new, appropriate board be formed, or current members be reviewed and appropriately replaced. I say this because surely such a board should have patients interests first and foremost and I wouldn't expect such cruel antics as I have recently seen at the Renal conference.

 

[Dx Revision Watch]

I'm also thinking that the CMRC should be scrapped and a totally new, appropriate board be formed, or current members be reviewed and appropriately replaced. I say this because surely such a board should have patients interests first and foremost and I wouldn't expect such cruel antics as I have recently seen at the Renal conference.

But Holgate is the MRC's man.

http://www.southampton.ac.uk/medicine/about/staff/sth.page

 

[Dx Revision Watch]

Someone mentioned CMRC and sources of funding a page or two back:

http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/

http://www.meassociation.org.uk/201...arch-conference-newcastle-13-14-october-2015/

(...)

The CMRC Executive Board is delighted to announce that The Wellcome Trust and Arthritis Research UK have each made a £10,000 contribution to fund the CMRC’s second annual conference and support the ongoing work of the Collaborative. This commitment builds on the support from the Medical Research Council (MRC) which has, over the past two years, provided critical funding to support two conferences and the future work of the CMRC.

 

[Sushi]

Posts specifically responding to today's blog post by David Tuller have been moved to the thread:
Trial By Error, Continued: CMRC to Virology Blog: “F**k Off!” Please continue to posting your responses to the blog there.

 

[Somer]

http://me-pedia.org/wiki/Esther_Crawley
I've just been reading this link on EC. According to this EC has been awarded £2.3 million grants from various bodies since 2006.
Sorry but I'm starting from basics...
Are the National Institute for Health Research & the Medical Research Council the 2 main awarding bodies in this country?
Have they funded any biomedical research?
Apologies if question should be on another thread.

& as others have said above, I'm starting to wonder exactly what money given to the CMRC will be spent on? Donors (in whatever form) might think they are doing something positive by contributing to M.E research & yet it could be just being further squandered on studies that contribute nothing to actually furthering our understanding of the disease.

 

[Dx Revision Watch]

sorry #MillionsMissing

https://www.actionforme.org.uk/news/action-for-me-informs-scottish-parliament-debate-on-me/

Action for M.E. informs Scottish parliament debate on M.E.

 

[Solstice]

https://www.actionforme.org.uk/news/action-for-me-informs-scottish-parliament-debate-on-me/

Action for M.E. informs Scottish parliament debate on M.E.

Nice to see they apparently have time and resources to spare to do stuff like that. Now how about using some of that time to sign your name under the open letter regarding PACE retraction and issuing a statement about the horrendeous behaviour portrayed by Crawley.

 

[Daisymay]

I only became ill at the beginning of 2014 and have followed developments / ME politics since then. Looking at some of the links on this thread, I'm fairly shocked to discover that just about everything that's been said about this bunch of grant-grabbing psychopaths and their activities in the last couple of years is just a repetition of what was being said many years earlier.

Margaret Williams catalogue of articles illustrates the whole ME/CFS groundhog experience and how long this has been going on:

http://www.margaretwilliams.me

 

[slysaint]

How can they not see how wrong it is for anyone (absolutely anyone) who had links with PACE,or is a devoted BPS advocate, to have any input into MEGA or any other trial that is focused on finding out biomedical markers for ME.

They [AfME] are part of the 'Bristol Bubble'; they not only support EC, they fund her research.
A lot of the information sheets they supply are generally quite good and supplied free of charge and they appear to be supporting their members who are of course grateful as there is so little support elsewhere.

BUT a lot of the information they give their members is always spun in such a way that it appears to be for their (ie pwME) benefit; they let things happen with little resistance and then 'offer assistance' to members suffering the consequences. In fact quite often they collaborate with 'the powers that be' to enable a lot of it to happen in the first place.

As with the MEGA team and the CMRC they still cannot answer the question we have all been asking time and again;

If you don't agree with PACE, if you are against CBT/GET, if you believe ME is a biological illness and deserves more real scientific research, if you object to the NHS treatment of ME and the DWPs attitude towards ME disability claimants, if you do not agree with the NICE guidelines, if you are really on the side of people with ME..........then HOW can you support EC and her colleagues, their trials and treatments?