Crawley: How to deal with anti-science BRS2017

[JaimeS]

Someone should have warned them in Scotland.
http://forums.phoenixrising.me/index.php?posts/848528/

I commented on that thread but what can I say except that doing a wee bit of research before launching a new program is PERHAPS a good plan.

 

[Dx Revision Watch]

I think we are all wondering what the potential MEGA or other CMRC money would go on. Nothing that will advance biomedical research or help seriously ill people, with the current "leaders".

There is also the Wellcome Trust who fund a fair amount of science research.
I suspect that small amounts of non-charity raised money has been obtained by Julia Newton, for her work in POTs and muscles. Some of her earlier work, used PBC(primary biliary cirrhosis) as a comparison, alongside controls. As PBC is a "real" disease this may have attracted funding!

http://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf

AN OVERVIEW OF ACTIVITY BY MAJOR INSTUTIONAL FUNDERS INCLUDED ON THE DIMENSIONS DATABASE

LEAD AUTHORS
Giles Radford, ÜberResearch
Sonya Chowdhury, Action for M.E.
2016

Page 10

Table 2 – Research organisations receiving the largest grant awards, with funding recipients since 2006

Of the 20 grants identified in Table 2 above, Prof Peter White (Queen Mary University of London and
Barts Health NHS Trust) has received most funding, more than £3.5 million. Prof White and Dr
Crawley each hold four grants as principal applicants, so that eight of the 20 grants awarded were
held by two recipients.

This may reflect the current emphasis on funding epidemiological aspects or treatment trials. It may
also reflect the enthusiasm of the individual researchers, as grants can only be awarded to those
who apply for funding. Additionally, it is important to note that the table refers only to principal
applicants and not co-applicants who also ‘hold’ a grant.

Other major UK/European funders, such as the Biotechnology and Biological Sciences Research
Council or the European Research Council (ERC), had given no funding for research into ME/CFS over
the relevant period.

[Extract from Page 10 ends]


Perhaps someone can confirm whether the Mark John James Edwards listed above is one of the Mark Edwards that is a member of the CMRC.

My understanding is that Action for M.E. inherited the EC study from the CFS Research Foundation when that organization folded and the funds of the CFS Research Foundation and its existing study contracts were absorbed by Action for M.E.

 

[Dx Revision Watch]

I am hugely grateful for the brilliant thought provoking research writings and advocacy of Margaret Williams, Professor Malcolm Hooper, Eileen Marshall and Suzy Chapman, as well of those of the late, and sadly missed, Jodi Bassett on her www.hfme.org website, plus all the other wonderful advocates over the years who have worked tirelessly to highlight and document the medical and political history behind this illness.

All this information is a huge asset to the ME Community, and anyone else caught within the BPS framework, in realising and understanding what we are up against, and the shameful way we have been maligned and mistreated for far too many years.

It helped me enormously to recognise my illness and how I was being treated, and for that I thank you all.

Thank you, suseq, that was very kind to include me.

 

[Daisymay]

Thank you, suseq, that was very kind to include me.

Yes absolutely right you were included, you've done and are still doing SO much work for us all, very much appreciated x

 

[user9876]

My understanding is that Action for M.E. inherited the EC study from the CFS Research Foundation when that organization folded and the funds of the CFS Research Foundation and its existing study contracts were absorbed by Action for M.E.

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.

 

[slysaint]

they made a decision to fund Crawley

https://www.actionforme.org.uk/research/research-we-fund/
"
What is the severe paediatric M.E. surveillance study you're funding about?
Led by: Dr Esther Crawley


Aims: To measure the incidence, demographic and clinical features of severe paediatric M.E. in the UK."
"Cost: £12,000 made possible by a corporate donation to our Clare Francis Research Fund and match-funding with the University of Bristol."

 

[MEMum]

At some stage, we need to discover what the views of the Trustees and President/VP think of PACE and subsequent recommendations of GET/CBT.

 

[SamanthaJ]

https://www.actionforme.org.uk/research/research-we-fund/
"
What is the severe paediatric M.E. surveillance study you're funding about?
Led by: Dr Esther Crawley


Aims: To measure the incidence, demographic and clinical features of severe paediatric M.E. in the UK."
"Cost: £12,000 made possible by a corporate donation to our Clare Francis Research Fund and match-funding with the University of Bristol."

That's quite chilling, knowing EC's previous comments and behaviour with regards to severe ME. She couldn't be less appropriate.

 

[lilpink]

Point *4 seems to have been overlooked.

 

[Somer]

Sorry, my tech abilities minimal. Most of my time spent handing out info/chatting to people. Good speeches/talks by people and fair amount of interest from public.

Well done @MEMum

 

[Barry53]

http://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf
Table 2 – Research organisations receiving the largest grant awards, with funding recipients since 2006

Is there any equivalent information on rejected grant applications? Although the above table shows the BPS funding skew, it doesn't fully show what other research institutions might have otherwise been funded, but got nothing.

 

[ScottTriGuy]

Is there any equivalent information on rejected grant applications?

It may also be helpful to obtain copies of the grant reviewers' decisions on rejected applications.

 

[slysaint]

That's quite chilling, knowing EC's previous comments and behaviour with regards to severe ME. She couldn't be less appropriate.

As I posted on another thread, it would also be interesting to know if now MJW formerly of AYME is part of AfME,
if her role as Lead for patient and public involvement for FITNET still stands.

This would make FITNET also an AfME project (although not funded by them).

eta: anyone on FB fancy asking them?

 

[Large Donner]

Is Sonia Chowdhury paid for her position in AfME and if so how much?

 

[Chrisb]

Is Sonia Chowdhury paid for her position in AfME and if so how much?

Better for your blood pressure if you don't know.

 

[2kidswithME]

Is Sonia Chowdhury paid for her position in AfME and if so how much?

One can view accounts for any charity that gets over £10k in income on the Charity Commission site. The search function is poor, so easier to use th charity number, which for AFME is 1036419 (any registered charities will have this number on their website somewhere). From the accounts, I see that one employee earns over £60k; presumably this is SC as CEO.

I happen to work as an administrator for a larger charity, and have spent many hours extracting snippets of info from such accounts! My charity also has one person paid over £60k.

 

[trishrhymes]

Just found this thread from 2012 which suggests she was paid £75,000 salary then. I thought I'd read £60,000 somewhere. Anyway, it's the sort of salary a chief executive of a medium sized charity might expect to be paid I guess.

So about 15 times what someone with ME on ESA might get or 10 times state pension, or more than double a nurse's salary, or about the same as an MP...

And they still can't get their act together to tell us whether they will sign the letter asking for PACE to be retracted, or support David Tuller after he was labelled anti science by Crawley.

I think we know what their values are.

Edit: I meant to give the link to the thread and forgot. Now I can't find it...

 

[Chrisb]

Now how's that blood pressure? £75k was the figure I thought I had seen.

 

[trishrhymes]

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

Though one might have hoped that someone on that level of salary might have the capacity for independent thinking, and the guts to speak up if patients are telling her their approach is wrong.

In some ways having someone who has fibromyalgia running an ME charity is a mixed blessing. She has some understanding of chronic illness, but it's not the same illness. PEM and all the GET BPS crap makes it uniquely different from most other chronic conditions which don't have a treatment imposed on them that makes patients worse.

I've just glanced at some stuff about their guidance for employers about helping PwME return to work. It's full of stuff about helping them get past their fear of doing too much, and increasing activity and by 10% at a time. In other words it's BPS false illness beliefs and GET.

Does she not understand, after 5 years in the job that this is very very bad advice.

Huh, I started this post saying 'to be fair to SC...'. I've changed my mind. She's had her chance.

 

[RogerBlack]

https://www.actionforme.org.uk/research/research-we-fund/
"
What is the severe paediatric M.E. surveillance study you're funding about?
Led by: Dr Esther Crawley


Aims: To measure the incidence, demographic and clinical features of severe paediatric M.E. in the UK."
"Cost: £12,000 made possible by a corporate donation to our Clare Francis Research Fund and match-funding with the University of Bristol."

Just found this thread from 2012 which suggests she was paid £75,000 salary then. I thought I'd read £60,000 somewhere. Anyway, it's the sort of salary a chief executive of a medium sized charity might expect to be paid I guess.

So about 15 times what someone with ME on ESA might get or 10 times state pension, or more than double a nurse's salary, or about the same as an MP...

http://beta.charitycommission.gov.uk/charity-details/?subid=0&regid=1036419

One person is in the category of people getting over 60K.