BMJ: Activists demand more funds for ME research

I'm pretty sure we're asking for more, like the end to a state of systemic discrimination that mounts to gross negligence and institutional violence. Literally the barest minimum of: let's move from a state where healthcare is harmful to us to one where it's helpful while, preferably, undoing decades of revolting harm.

But, yes, we're also asking for research as part of this. And a whole lot more that includes such hard concepts as basic respect.
 
bobbler said:
:thumbup:Good on everyone who is part of this.

I'm probably being slow but intrigued by the to lobby the Wellcome Trust being suggested - is there more detail on the why/what behind this specific?
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One of the event’s organisers, Denise Spreag of #MEAction UK, said, “We are asking all our supporters, people with ME, and people with other complex chronic conditions to start this campaign by lobbying the Wellcome Trust—which has approximately £29bn of funds—to commit significant funding to ME. It has been neglected, ignored, and stigmatised for far too long.”
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I don't know anything more myself. Seems a bit unusual to publicly lobby a charity like this but perhaps there is a precedent for it with this charity?
 
As far as I recall the Wellcome Trust traditionally does not fund biomedical research into ME, only the other sort - this may be why they have been specifically chosen as worthy of mention/lobbying.

Of course, not being involved in advocacy, or ME charities, I may be wrong, but that's my impression, that the Wellcome Trust only funds the 'other side'.
 
Wonko said:
As far as I recall the Wellcome Trust traditionally does not fund biomedical research into ME, only the other sort - this may be why they have been specifically chosen as worthy of mention/lobbying.

Of course, not being involved in advocacy, or ME charities, I may be wrong, but that's my impression, that the Wellcome Trust only funds the 'other side'.
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I'm a bit rusty on these things. I know that Lord Sainsbury's charities such as the Linbury Trust funded quite a number of biopsychosocial studies. I don't recall much funding for them from the Wellcome Trust.
 
Dolphin said:
I'm a bit rusty on these things. I know that Lord Sainsbury's charities such as the Linbury Trust funded quite a number of biopsychosocial studies. I don't recall much funding for them from the Wellcome Trust.
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As I said I'm just going off memory, I do have memory issues (diagnosed) so I could be wrong.

But that was the conclusion I jumped to.

I must admit that I was slightly confused as to why, you, who knows quite a bit more than I, were asking - which might add weight to the 'my being wrong' hypothesis.
 
There are the links between the wellcome trust and smc. Didn't the last couple of people running wellcome seem to have links to Wessely and some worrying signs on CFS? Maybe me action have some inside information? On what's public I'm not sure I'd want wellcome more involved.
 
I can't access the BMJ article so I'm not clear what the relevance of the Welcome Trust is to the protest but as far as I recall the only involvement of WT in ME/CFS research related to XMRV https://link.springer.com/article/10.1186/1742-4690-7-10

Acknowledgements
This work was supported by the UK Medical Research Council (file reference (KB) U117592729 and (JS) U117512710), The Wellcome Trust (grant ID 084955) and CFS Research Foundation, UK. We acknowledge The Cunningham Trust for funding to SH. KNB is a Wellcome Trust Career Development Fellow. We thank Leonard Evans for anti-MLV Env hybridoma supernatants and Robin Weiss and Nigel Temperton for helpful advice about neutralisation assays. We thank the following clinicians who provided patients for the present study; Dr Selwyn Richards, Dr Janice Main, Prof David J Nutt, Dr David Honeybourne, Dr Luis Nacul, Dr Amolak Bansal, Prof Peter Behan and Dr Abhijit Chaudhuri, and Mark Quinlivan for retrieving samples.
 
Esther12 said:
There are the links between the wellcome trust and smc. Didn't the last couple of people running wellcome seem to have links to Wessely and some worrying signs on CFS? Maybe me action have some inside information? On what's public I'm not sure I'd want wellcome more involved.
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They are being asked for funding - if they funded decent science then I'd definitely want them involved.

CRG said:
I can't access the BMJ article so I'm not clear what the relevance of the Welcome Trust is to the protest
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Link to article describing the demands of the protest is in this post, United Kingdom: News from #MEAction Network UK
 
Possibly it's just the association with events hosted by them - allowing various people on the other side to present their work?

One of what looks like several events they organised according to google;
https://www.bristol.ac.uk/research/impact/chronic-fatigue-syndrome/
These early findings were presented at an event hosted by The Wellcome Trust in London, in April 2013, at which CFS/ME researchers from around the UK shared research findings and identified gaps in current CFS research, with a view to defining future research priorities.

“The pilot study was funded by the University of Bristol’s Alumni Fund,” explains Jade. “The project also obtained additional funding from British Psychological Society for summer student scholarships and I am supervising two Masters students who are also attached to it. We have close links to the School of Social and Community at the University, working with Dr Esther Crawley who is the clinical lead.” The team is also working with Dr Rosemary Jones of Bristol and Avon MS Research Centre, Frenchay Hospital.
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Bolding mine.

There also seems to be something called the Wellcome Collection, which seems to be the same people (based on limited googling), a 'private' library (as in not accessible by me) which seems to have various CFS papers, of the BPS sort, in.

As my search string was 'Wellcome Trust CFS' I have no idea what other stuff is in there, it may be a few out of 34 billion papers, or it may be a significant number.

They may be 'neutral', simply holding random papers, or they may have an 'interest' in certain types of papers.

Maybe the association in my brain between the wellcome trust and the 'other side' isn't valid, but it's there ;)
 
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Andy said:
They are being asked for funding - if they funded decent science then I'd definitely want them involved.


Link to article describing the demands of the protest is in this post, United Kingdom: News from #MEAction Network UK
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Thanks. I find it a bit puzzling though - has any quality ME/CFS grant request ever been submitted to WT ? Seems a bit odd to complain about the org not doing anything if the usual process of asking for support hasn't been explored.
 
Wonko said:
Possibly it's just the association with events hosted by them - allowing various people on the other side to present their work?

One of what looks like several events they organised according to google;
https://www.bristol.ac.uk/research/impact/chronic-fatigue-syndrome/

Bolding mine.

There also seems to be something called the Wellcome Collection, which seems to be the same people (based on limited googling), a 'private' library (as in not accessible by me) which seems to have various CFS papers, of the BPS sort, in.

As my search string was 'Wellcome Trust CFS' I have no idea what other stuff is in there, it may be a few out of 34 billion papers, or it may be a significant number.

They may be 'neutral', simply holding random papers, or they may have an 'interest' in certain types of papers.

Maybe the association in my brain between the wellcome trust and the 'other side' isn't valid, but it's there ;)
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Venue hire - the fact an event happened doesn't necessarily mean that there was organisation wide approval. Welcome is like any massive research body, there's vast numbers of professional interactions with other institutions and academics, so booking a room or getting an official invite or any combination is possible, mostly will mean very little. Getting a 'prestigious' booking address is a standard PR tactic to give an authoritative gloss to an event.
 
CRG said:
I can't access the BMJ article so I'm not clear what the relevance of the Welcome Trust is to the protest but as far as I recall the only involvement of WT in ME/CFS research related to XMRV https://link.springer.com/article/10.1186/1742-4690-7-10

Acknowledgements
This work was supported by the UK Medical Research Council (file reference (KB) U117592729 and (JS) U117512710), The Wellcome Trust (grant ID 084955) and CFS Research Foundation, UK. We acknowledge The Cunningham Trust for funding to SH. KNB is a Wellcome Trust Career Development Fellow. We thank Leonard Evans for anti-MLV Env hybridoma supernatants and Robin Weiss and Nigel Temperton for helpful advice about neutralisation assays. We thank the following clinicians who provided patients for the present study; Dr Selwyn Richards, Dr Janice Main, Prof David J Nutt, Dr David Honeybourne, Dr Luis Nacul, Dr Amolak Bansal, Prof Peter Behan and Dr Abhijit Chaudhuri, and Mark Quinlivan for retrieving samples.
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The article is short. This is where the Wellcome Trust is mentioned:
—-
One of the event’s organisers, Denise Spreag of #MEAction UK, said, “We are asking all our supporters, people with ME, and people with other complex chronic conditions to start this campaign by lobbying the Wellcome Trust—which has approximately £29bn of funds—to commit significant funding to ME. It has been neglected, ignored, and stigmatised for far too long.”
 
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