Time for ME Assoc to quit the UK Research Collaborative?

[RustyJ]

The whole paradigm is false. Gizmodo presents it as 'vexatious patients vs very patient, but nervous researchers'.

The paradigm 'no treatment or diagnosis vs misdirected research, little funding' should be the focus of debate.

 

[Wildcat]

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"And can remember when he was criticised in the Times by someone...,probably one of the captain of the titanic's mates, when he was sticking up for ME patients years back)"

Now Stephen Holgate is publicly demonising ME patients by repeating, and embellishing the victim-researchers sob stories put about by the captain of the titanic and his mates at the Science Media Centre. And incorporating the demonisation of patients into the Collaborative Charter.


Stephen Holgate did not form the Collaborative as a response to SMC and anti-ME-patient Science Mediia Centre press propaganda in 2011.

I have posted information here about when Holgate first publicly announced he wanted to form a Collaborative, at the Royal Society of Medicine Conference of July 2008. (The Conference that the RSM organised after the Patient Protest about the RSM CFS Psychiatrists' Conference of April 2009. Petition, Postcard Campaign and live demonstration outside the RSM while the Psychiatrists inside (Peter White and Wessely included) misinformed the delegates, and trashed the Canadian Criteria. Mansel Aylward of the insurance company UNUM spoke there too, as he is so 'interested' in ME that he arranged for the DWP to give the PACE Trial £1million, when he was chief medical advisor to the DWP. )

Holgate did not say anything in 2008 about inviting Peter White to be on the Collaborative. Holgate did not announce in 2008 that he would be writing to Wessely and obsequiously seeking his advice on who to invite to become members of the Collaborative.

The Conference Holgate was speaking at in July 2008 only happened because Peter White and his friends were allowed to misrepresent ME at the earlier RSM Conference, and the patients visibly protested, to the great embarrassment of the RSM.

Holgate did not announce any Collaborative gagging clause either in 2008. I refer back to @Dx Revision Watch post #97 for evidence of what effect the gagging clause has had on the CEO of AFME Sonia Chowdhury, Collaborative member and Secretariat ..... 'no negative questions about specific research at the Collaborative conference' said Sonia.
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[Dx Revision Watch]

ME Association shared the #MEAction petition on their website and facebook page (http://www.meassociation.org.uk/201...ers-almost-10000-signatures-12-november-2015/), so either they are allowed to criticize research or they are choosing to take a stand despite the risks.

The MEA has reported on the existence of a petition.

The MEA has also RTd the petition on Twitter.

But has the MEA signed it, themselves, on behalf of the Board of Trustees?

I've asked Tony Britton but I've had no confirmation, as yet.

I don't consider reporting on the existence of a petition (on any issue by any party) can be taken as a firm indication that an organization's Board is backing that petition, themselves, or has put its name to it.

 

[rosamary]

I knew Prof Holgate was involved in that gene expression research :

http://www.25megroup.org/infomedical_cfsrf_battle_for_a_cure.html#top

 

[K22]

I knew Prof Holgate was involved in that gene expression research :

http://www.25megroup.org/infomedical_cfsrf_battle_for_a_cure.html#top

Interesting Rosemary, i was not online over these years. Im not sure if Holgate being involved since 1999 is admirable in a stigatised field or if it makes the horrendous feet dragging and low funding of the MRC since he took on the role of chair of the CFSME expert groups even more frustrating

 

[rosamary]

Interesting Rosemary, i was not online over these years. Im not sure if Holgate being involved since 1999 is admirable in a stigatised field or if it makes the horrendous feet dragging and low funding of the MRC since he took on the role of chair of the CFSME expert groups even more frustrating

I think it is clear from the information in the link I gave that these scientists were just trying to get on quietly with the aim of trying to establish what ME/CFS is and maybe working out what treatments may work.

Up until about 2008 or 2009 the MRC was run differently. Research applications went to panels whose members belonged to different specialist areas.

ME is classified as neurological and went to the panel comprised of psychiatrists and neurologists.

I don't think that is the case now.

But the group referred to in the link would have had any applications decided by psychiatrists and neurologists.

It's all about power I suppose.

 

[K22]

I think it is clear from the information in the link I gave that these scientists were just trying to get on quietly with the aim of trying to establish what ME/CFS is and maybe working out what treatments may work.

Up until about 2008 or 2009 the MRC was run differently. Research applications went to panels whose members belonged to different specialist areas.

ME is classified as neurological and went to the panel comprised of psychiatrists and neurologists.

I don't think that is the case now.

But the group referred to in the link would have had any applications decided by psychiatrists and neurologists.

It's all about power I suppose.

Pre 2007, i agree the groups were tryin to move forward in certain areas on limited funds (not that im a natural supporter of a group who distanced themselves from the ME community and went all CFS). My point is Holgate set up the Cfs expert group already very familiar with the field, the funding issues, the biomedical basis & uk resetch etc yet still they spent years on workshops and discussions on priorities with right to this day little cash from the MRC.

 

[rosamary]

I suppose that my feeling is: anyone who attempts to take biomedical research into ME forward, is eventually forced to compromise to get anywhere.

I think Professor Holgate, the Countess of Mar, Charles Shepherd et al deserve recognition.

 

[rosamary]

As opposed to being decried for their efforts.

 

[K22]

I have known several who have died over that period of what to me was either dawdling, proscrastination or enforced compromise. I don't know who would have been or still are forcing the compromise, maybe they should be named & held accountable.

I disagree with the broad tent, loose definition approach promoted by Holgate and accepted by the CMRC members, i don't like the CMRC gagging clauseand willingness to blam patients for lavk of research interest, i think its wrong that the Gibson reports recommendations for the MRC regarding ME were seemingly not lobbied for by the charities, i think its wrong to accept the UK pragramatic approach to and status quo of the current name & loose broad umbrella for the forseeable future, so Im afraid i see time and lives wasted unecesasrily.

 

[Esther12]

I suppose that my feeling is: anyone who attempts to take biomedical research into ME forward, is eventually forced to compromise to get anywhere.

I think Professor Holgate, the Countess of Mar, Charles Shepherd et al deserve recognition.

I have a lot of respect for Shepherd and Mar, rather less so for Holgate given his recent reported comments, but even people we respect might make mistakes, or let their hunger for a compromise which allows more worthwhile research to take place blind them from seeing all the costs. The recent Wellcome article made the CMRC sound pretty terrible, and also made it clear that we're not getting the full story about what's going on.

While I had been supportive of it, so far the CMRC seems like a net loss for patients, and I fear that there are more bad things about it we're not being made aware of. It's very hard for any of us to really know exactly what's going on.

 

[worldbackwards]

While I had been supportive of it, so far the CMRC seems like a net loss for patients, and I fear that there are more bad things about it we're not being made aware of. It's very hard for any of us to really know exactly what's going on.

I kind of know what you mean. I don't really feel that there's a strategic plan that's moving things forward, just a few individual projects that don't really add up to much. And in the meantime, who's in control? I hope the NIH initiative is a bit more like what's required.

 

[Wildcat]

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This is what was going on outside the Royal Society of Medicine on the 28th April 2008, whilst Peter White and Wessely and Mansel Aylward were inside misinforming the delegates.
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There was a an international campaign against this conference (which patients dubbed 'The Psychiatrists conference)... a postcards to the RSM campaign, a petition and Statement to the RSM, and a live demonstration, patients and carers. The traffic noise made it hell.

As a response to the demonstration, the RSM organised a second RSM ME conference later in July 2008, with bio researchers, MEResearch UK, Jane Colby, Professor Stephen Holgate and others.

The RSM CFS conference protest
. https://www.youtube.com/watch?v=cQ_WVWj7chA




It was at the second RSM Conference in July 2008 that Professor Stephen Holgate first publicly aired an intention to create a 'Medical Research Council Interdisciplinary Expert Group on M.E.' and publicly stated 'that a collaborative needs to be formed from charities [sic], the MRC and researchers' way back in July 2008.

Professor Holgate did not make any mention of any ‘broad church’, neither did he state that Peter White and Esther Crawley would be on the inside of the collaborative.

If he had, the attendees would have dismissed his proclaimed sincerity in wanting to further the promotion of Biomedical ME research.



Remember, the Conference at which Holgate announced his collaborative intention was organised by the RSM in direct response to hard campaigning and protesting by ME patients and carers against the Psychiatrists Conference at which Peter White presented the Video below. So what was Peter White doing on the Inside of the Collaborative?:

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Holgte was not open or honest about making it clear the Collaborative would to be a Broad church, and we did not find out that Peter White would be on the inside until after the Collaborative was formed.




2008 report on the RSM 'Medicine and me' conference of July 2008. Commentary on Stephen Holgates talk proposing an MRC/Charities Collaborative.

https://meagenda.wordpress.com/2009/07/25/rsm-medicine-and-me-event-commentary-by-john-sayer/

RSM “Medicine and me” event: Commentary by John Sayer (Chair, M.E. Support-Norfolk)



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[rosamary]

God! I get so muddled up with MRC and RSM.