Time for ME Assoc to quit the UK Research Collaborative?

RustyJ

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Wessely has all but admitted the PACE study was a construct to influence the NIH in the USA in his latest blog: http://forums.phoenixrising.me/index.php?threads/the-mental-elf-simon-wessely-on-pace.40993/.

Given the links between the Wessely group and the UK Research Collaborative and commercial insurance interests, there is an increasing likelihood that the Collaborative is another construct to restrict, rather than advance biological research into ME.

It would appear that the Collaborative is firmly under the control of the Wessely group

This would also weaken claims by the MEA that they are trying to effect changes from within. So is it time for the MEA to leave the Collaborative?

I am floating this as a discussion topic, but it could be turned into a petition.
 

Large Donner

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Wessely has all but admitted the PACE study was a construct to influence the NIH in the USA in his latest blog: http://forums.phoenixrising.me/index.php?threads/the-mental-elf-simon-wessely-on-pace.40993/.
Can you show me a couple of sentences that back up this claim. I don't doubt he would do it just that I haven't read the article and I am really too exhausted from all this crap this week to subject myself to reading it all.

Given the links between the Wessely group and the UK Research Collaborative and commercial insurance interests, there is an increasing likelihood that the Collaborative is another construct to restrict, rather than advance biological research into ME.............It would appear that the Collaborative is firmly under the control of the Wessely group.
I suspected this from the offset and I must say I haven't become any more confident in this group as time has gone on.
 

Large Donner

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Hmm he certainly is a master of double talk and leaves his statements open to allow for the defense "contextual misinterpretation".

I get an eery feeling this blog is a kind of weird cult like pre warning of something else to come. Like a code for those in the know, those on his side, that something they have worked on is about to come true.

It could also be serving as a need to inform those opposed to his rhetoric that they have been informed.

This has happened many timed in the last 5 years. Its also a tactic well known in dirty politics. But that's a much bigger dynamic to understand.

I really wonder if that ship across the Atlantic was carrying a false flag.
 

Esther12

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Wessely has all but admitted the PACE study was a construct to influence the NIH in the USA in his latest blog:
With so much going on, I don't think it's worth dwelling on that.

If PACE falls/gets badly wounded, then I hope that patient groups should be able to get more traction with getting rid of some of the rubbish researchers who lurk around CFS.
 
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RustyJ

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With so much going on, I don't think it's worth dwelling on that.

If PACE falls/gets badly wounded, then I hope that patient groups should be able to get more traction with getting rid of some of the rubbish researchers who dwell around CFS.
I think the tone of Wessely's blog should tell you that PACE is not in any danger of failing. If the Atlantic theme is just click bait, so is his blog. That should tell you he is smugly confident.

The point is that the challenges to the PACE study, irrespective of their quality, do not challenge the interlocking interests propping up the Wessely group.

One of those pieces, aside from PACE, is the Collaborative. MEA's publicized departure would fire a broadside into it.

Is MEA's reluctance to criticize or leave the Collaborative, tacit admission that nothing can be done?
 

Esther12

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I don't know what's going to happen with PACE, but I think that Wessely will go on giving the impression of being smugly confident until after it is doomed beyond all hope. Some people fall for it and go on giving him the benefit of the doubt. He is pretty good at managing people.
 

SilverbladeTE

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Wessely is like a black-magic wielding version of Hannibal Lector:
he eats souls instead of flesh and he spins his words so as to weave a blanket of bullshit he can hide behind! :p


and yes they are evil, they are working to an agenda, and they will fight back.
Big Money is on their side.
but one day, when their kids/grandkids or whoever suffers and maybe dies from these damn diseases:
will they still be so f' smart? :/

so many of these things going on, various levels/areas, all chipping away at the foundations of our very civilization.
Rats gnawing away at the walls, thieves selling off the support cables, crocked contractors doing shoddy repairs on bridges and tunnels, traitors letting criminals and worse into the halls of power....
 
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We have had this discussion on many occasions before and I will repeat that the MEA has NO intention of leaving the Board of the UKRC

If you read my summary of the second UKRC conference in Newcastle you will see that there was a very strong, almost total, concentration on biomedical research over two full days of meetings

In fact, I cannot recall seeing or meeting a single psychiatrist during the three days I was in Newcastle in October and I feel proud to have helped to put on this meeting that was attended by almost 100 UK and overseas researchers

There has been a significant shift in the way that the MRC views this illness as a result of the MRC Expert Group on ME/CFS Research (CS was a member) and we now have people like Professor Hugh Perry, Chair of the MRC Neurosciences Board, helping to play a very active role in the development of the UKRC and helping to organise the sessions and workshops on neuropathology at Newcastle

Professor Peter White is no longer a member of the Board of the UKRC

Profesor Simon Wessely is not a member of the Board of the UKRC, has never been a member of the UKRC Board, and did not attend the meetings in either Bristol or Newcastle.

The UKRC has a wide range of professional membership and there are clearly people whom I disagree with who are included on this membership

When it comes to the DWP, DoH, NICE, MRC etc, we believe that it is far better being 'inside the tent' and putting forward your case rather than complaining/moaning from 'outside the tent'

We have no intention of changing our position - unless our growing number of MEA members tell us that what we are doing is wrong. Which is NOT the case…….
 
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We have had this discussion on many occasions before and I will repeat that the MEA has NO intention of leaving the Board of the UKRC

If you read my summary of the second UKRC conference in Newcastle you will see that there was a very strong, almost total, concentration on biomedical research over two full days of meetings

In fact, I cannot recall seeing or meeting a single psychiatrist during the three days I was in Newcastle in October and I feel proud to have helped to put on this meeting that was attended by almost 100 UK and overseas researchers

There has been a significant shift in the way that the MRC views this illness as a result of the MRC Expert Group on ME/CFS Research (CS was a member) and we now have people like Professor Hugh Perry, Chair of the MRC Neurosciences Board, helping to play a very active role in the development of the UKRC and helping to organise the sessions and workshops on neuropathology at Newcastle

Professor Peter White is no longer a member of the Board of the UKRC

Profesor Simon Wessely is not a member of the Board of the UKRC, has never been a member of the UKRC Board, and did not attend the meetings in either Bristol or Newcastle.

The UKRC has a wide range of professional membership and there are clearly people whom I disagree with who are included on this membership

When it comes to the DWP, DoH, NICE, MRC etc, we believe that it is far better being 'inside the tent' and putting forward your case rather than complaining/moaning from 'outside the tent'

We have no intention of changing our position - unless our growing number of MEA members tell us that what we are doing is wrong. Which is NOT the case…….
Some of the biomedical research that was presented at our conference in Newcastle in October:

http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/

Would it have helped people with ME/CFS if this conference had NOT taken place??
 
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When it comes to the DWP, DoH, NICE, MRC etc, we believe that it is far better being 'inside the tent' and putting forward your case rather than complaining/moaning from 'outside the tent'
I broadly agree with this. Our group has found engaging with the NHS very challenging indeed, but it has given us the opportunity to begin to build a picture of the push and pull factors going on and as far as possible to tailor our approach taking these factors into account.

It also gives the opportunity to build valuable personal relationships so that even when there is an 'agree to disagree' situation it is done with mutual respect, and the understanding that in the long run a compromise may be found. Also you can 'keep your friends close and your enemies closer'. Sounds a bit dramatic, but through dialogue you get a much better idea of the real motivations and opinions of those involved in the decision making process. You can then make much more informed decisions regarding the approach to take or what to do when things go awry.

In the absence of those relationships it is very difficult to make progress, and you cannot build those relationships from outside the tent. It is not enough to be right, or indeed to have the evidence that Commissioners, or NICE or the DWP are making poor decisions. It is difficult enough to get them to listen when you are inside the tent and nigh on impossible if you are outside - they just filter it out as background noise.

Some may see it as 'dancing with the devil' - and it can go horribly wrong as with AfME and PACE, so you do have to be careful.
 
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I broadly agree with this. Our group has found engaging with the NHS very challenging indeed, but it has given us the opportunity to begin to build a picture of the push and pull factors going on and as far as possible to tailor our approach taking these factors into account.

It also gives the opportunity to build valuable personal relationships so that even when there is an 'agree to disagree' situation it is done with mutual respect, and the understanding that in the long run a compromise may be found. Also you can 'keep your friends close and your enemies closer'. Sounds a bit dramatic, but through dialogue you get a much better idea of the real motivations and opinions of those involved in the decision making process. You can then make much more informed decisions regarding the approach to take or what to do when things go awry.

In the absence of those relationships it is very difficult to make progress, and you cannot build those relationships from outside the tent. It is not enough to be right, or indeed to have the evidence that Commissioners, or NICE or the DWP are making poor decisions. It is difficult enough to get them to listen when you are inside the tent and nigh on impossible if you are outside - they just filter it out as background noise.

Some may see it as 'dancing with the devil' - and it can go horribly wrong as with AfME and PACE, so you do have to be careful.

I know that some people on here will strongly disagree with this 'inside the tent' position

But I have always taken the view that you are not going to make progress regarding benefits, research, services, NICE etc unless you are prepared to go in a room and sit down and talk with people whom you disagree with, and sometimes that can involve a very strong disagreement

The big downside to this, as far as the ME patient community is concerned, that a significant minority are totally opposed to us/me ever sitting down with anyone they disagree with and they can make life very uncomfortable as a result

I can still remember all the abuse that came with signing up to work on the UK Chief Medical Officer's report. In the end, as some may remember, the psychiatrists walked out and refused to sign up to the final report - partly because we placed almost equal emphasis on clinical evidence, patient evidence and RCT evidence in relation to CBT, GET and Pacing
 
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I know that some people on here will strongly disagree with this 'inside the tent' position

But I have always taken the view that you are not going to make progress regarding benefits, research, services, NICE etc unless you are prepared to go in a room and sit down and talk with people whom you disagree with, and sometimes that can involve a very strong disagreement

The big downside to this, as far as the ME patient community is concerned, that a significant minority are totally opposed to us/me ever sitting down with anyone they disagree with and they can make life very uncomfortable as a result

I can still remember all the abuse that came with signing up to work on the UK Chief Medical Officer's report. In the end, as some may remember, the psychiatrists walked out and refused to sign up to the final report - partly because we placed almost equal emphasis on clinical evidence, patient evidence and RCT evidence in relation to CBT, GET and Pacing
I'm reminded of a quote from The West Wing in an episode where the administration was encouraging people to vote:
Decisions are made by those who show up
Our group has also been criticised for engaging with the NHS.

There are two issues I think. One is that the NHS is dysfunctional and engaging with a dysfunctional organisation is fraught with pitfalls, years of work may come to naught and engagement can be seen as condoning the current situation.

The second is that some are of the view that the issues surrounding ME are completely clear and are highly and vocally critical of anyone who sees things differently.

In my view a rigid approach does not allow for the realities of the way that organisations such as the DWP, NHS, NICE function. Incremental change in the right direction now is preferable to holding out for wholesale change in 10 years time if ever. And not engaging may mean that things worsen.

There will be a tipping point with ME as there has been with FIFA. There will come a point when the reality of misrepresentation and spin will become undeniable. In the meantime there is no point wasting energy wishing things were different. All we can do is the best we can, with the hand we have been dealt, hoping that bit by bit, every achievement along the way makes that tipping that little bit closer. Eyes on the prize.
 
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The trouble is .... during the collaborative conference, when Sonia Chowdhury was asked by a patient to ask a question about PACE, Sonia's response was, as long as its not abusive. The question was not asked at the conference, but the patients were yet again pre-emptively put in a bad light, by the association of asking questions about PACE with 'abuse'....

The Science Media Centre (on the inside of the CMRC) have not demostrated in any way that they are aiding the cause of funding biomedical ME research, either from inside or outside the CMRC.

Talking of Trojan horses inside the CMRC, the SMC is not on the side of the patients or biomedical ME research ..... with friends like the SMC .....

And with the unprecedented CMRC 'gagging' clause on individual members and charities, and Jane Colby's release of notes (FOI) from the setting up of the CMRC Collaborative, and the contribution of the SMC revealed in those notes,
https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf
or
http://bit.ly/1vSRhOI


...its easy to see why there is scepticism re the CMRC.
 
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The trouble is .... during the collaborative conference, when Sonia Chowdhury was asked by a patient to ask a question about PACE, Sonia's response was, as long as its not abusive. The question was not asked at the conference, but the patients were yet again pre-emptively put in a bad light, by the association of asking questions about PACE with 'abuse'.... The Science Media Centre (on the inside of the CMRC) have not demostrated in any way that they are aiding the cause of funding biomedical ME research, either from inside or outside the CMRC.

Talking of Trojan horses inside the CMRC, the SMC is not on the side of the patients or biomedical ME research ..... with friends like the SMC .....
And with the unprecedented 'gagging' clause on individual members and charities, and Jane Colby's release of notes (FOI) from the setting up of the CMRC Collaborative, and the contribution of the SMC revealed in those notes,
https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf

...its easy to see why there is scepticism re the CMRC.
Thanks for posting this - I wasn't able to access the pdf, I'd be really interested to read it, but it comes up with a blank dropbox page, would you mind checking the link please?