STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

[N.A.Wright]

Mrc funded research has pumped tens of millions into fatigue research..... and has given white and crawley millions since the cmrc was founded

Some facts might be helpful - the five MRC grants awarded for ME/CFs research since the CMRC was founded in 2013:
http://www.mrc.ac.uk/documents/pdf/cfsme-current-projects/

The PI recipients being:

Professor Anne McArdle
Professor Julia Newton
Dr Wan Ng
Professor David Nutt
Dr Carmine Pariante

Neither Dr Crawley nor Professor White are named participants of any of these projects. Dr Crawley and her Bristol colleagues have recieved awards of NIHR grants of £864k in 2013 http://www.bris.ac.uk/news/2013/9741.html The priorities of the NIHR in respect of ME/CFS deserve critical attention. There was a long established charity now closed, called the CFS Research Foundation, which funded a three year study, now nearing completion by Professor White. The CFSRF was not part of the CMRC, although AfME, which is a member of the CMRC is administering the final stages of the grant given to Professor White.

Between them the three patient organisations that are part of the CMRC are supported by over 10,000 patient/carer households, and which is by far the most cohesive voice of those affected by ME/CFS anywhere. Clearly not every patient or carer wants to be signed up to that voice but denying that voice has validity only reflects poorly on the denyers. The CMRC is a new initiative, it can't be made responsible for the faliures of the MRC a decade ago under a then biased and partial leadership. Whether the CMRC is a success will have to be judged over the next decade, for now 10,000 plus people affected by ME/CFS are backing it via their supported organisations, as an approach to direct the smallish amount of public research that the UK can afford toward some of the priorities of MECFS patients.

 

[Valentijn]

Professor Anne McArdle
Professor Julia Newton
Dr Wan Ng
Professor David Nutt
Dr Carmine Pariante

40% of the recipients being psychiatrists is still far too many. We need rigorous biomedical research - the psych angle has been done to death and repeatedly proven to be a dead end.

 

[user9876]

Some facts might be helpful - the five MRC grants awarded for ME/CFs research since the CMRC was founded in 2013:
http://www.mrc.ac.uk/documents/pdf/cfsme-current-projects/

The PI recipients being:

Professor Anne McArdle
Professor Julia Newton
Dr Wan Ng
Professor David Nutt
Dr Carmine Pariante

Those all started in 2012 and hence were approved prior to the start of the CMRC

Neither Dr Crawley nor Professor White are named participants of any of these projects. Dr Crawley and her Bristol colleagues have recieved awards of NIHR grants of £864k in 2013 http://www.bris.ac.uk/news/2013/9741.html The priorities of the NIHR in respect of ME/CFS deserve critical attention. There was a long established charity now closed, called the CFS Research Foundation, which funded a three year study, now nearing completion by Professor White. The CFSRF was not part of the CMRC, although AfME, which is a member of the CMRC is administering the final stages of the grant given to Professor White.

Crawley got a recent grant of £295,826 from the MRC http://gtr.rcuk.ac.uk/project/92F6B9E6-B13E-4BC5-AD74-F2245F8B5D54 starting Oct 2013 so I'm not sure if that even covers the CMRC time given the proposal-> start date time can be quite slow. discussed here
http://forums.phoenixrising.me/inde...me-in-children-using-the-alspac-cohort.31254/

I believe those 6 make up all the active MRC projects for ME

 

[Wildcat]

So can it be explained exactly why Peter White and Esther Crawley, who have been, and continue to be, massively funded by the mrc and other sources, should be part of the mrc collaborative. Both those researchers use a broad and vague fatigue based definition of 'cfs' and continue to muddy the research water with chronic fatigue research.

Inclusion of Crawley and White in the collaborative is a travesty ofvwhat Prof Holgate promised the ME community at thevRSM conference in 2009.

Though at the time, astute patients suspected thatbPfofvHolgatesvproposal ton"bring the patientvgroupsvtogether" really meant that AFME, AYME, and thevMEA would run the show, and anyonevwho disagreed would be portrayed as obstructive. Which appears to be what NAWright is saying. No dissent. Astute and informed patients don't buy it.

 

[Wildcat]

I hope you can read my last post. Imam struggling hopelessly to type and edit on a tablet, and failing due to severe visual and spatial co ordination disabilities. I am sure you will try to interpret the poor spelling spacing on my last post. X

 

[Wildcat]

If the collaborative intends to fund biomedical research then it should dispence with White and Crawley. Or is there some specific reason why they are included? Perhaps
NAWright can explain the mrc view on why White and Crawley are always given funding and influence and status. Because, in terms of ME research.... White and Crawley are not merely redundant, but a positive hindrance,
?

 

[Wildcat]

Part of the reason to study history methodology is to enable one to recognise repeating patterns. We see repeating patterns of how the uk psychosocial school are always given status in previous projects such as the CMOs working group, and the Gibson Inquiry. If the objective of the CMRC is ME biomedical research, then White and Crawley are not required. So why are they involved?.. That is a central question.

 

[Tired of being sick]

MAY 2013
to clearly identify and separate ME from CFS, in order to ensure that ME is respected,
http://www.25megroup.org/info_news.html#CMRC


Very well said 25% Group!

CFS is a waste basket diagnosis, therefore CFS does not truly exist

So instead of "separate", we need to eliminate or dispose of CFS from the international center for disease control or what ever it's called......

 

[Firestormm]

If the collaborative intends to fund biomedical research then it should dispence with White and Crawley. Or is there some specific reason why they are included? Perhaps
NAWright can explain the mrc view on why White and Crawley are always given funding and influence and status. Because, in terms of ME research.... White and Crawley are not merely redundant, but a positive hindrance,
?

The CMRC is a non-funding body. It has no funds for research. It is hoped it will help stimulate research into and awareness of our condition. Biomedical applications for the money that even is available are not being made in anything like the amount or quality that you would hope to see. New initiatives are needed to try and stimulate more interest in ME and get more researchers of the ilk we would want to see involved and make applications. To not take part in this venture is to reduce even the possibility of having the views you all seem to want to be heard left unspoken and it leaves those whom you do not like at the table by themselves potentially dominating proceedings more than they have done to date.

 

[Min]

The amounts being spent on research by the MRC seem tiny in comparison to the enormous amount of money wasted on PACE and FINE.


Who is funding White's GETSET if not the MRC? The results are a forgone conclusion. Crawley's SMILE trial is being funded by the Linbury trust, a good reason to boycott Sainsburys as it is their charity.

I really don't see how working with Crawley and White helps us in any way, The Collaborative will ensure that the Wessely school of psychiatry will dominate UK Myalgic encephalomyelitis research for evermore.

 

[RustyJ]

Biomedical applications for the money that even is available are not being made in anything like the amount or quality that you would hope to see. New initiatives are needed to try and stimulate more interest in ME and get more researchers of the ilk we would want to see involved and make applications. To not take part in this venture is to reduce even the possibility of having the views you all seem to want to be heard left unspoken and it leaves those whom you do not like at the table by themselves potentially dominating proceedings more than they have done to date.

A straw man fallacy, if the colluding groups, and the MRC, have been involved in directing funding away from biophysical submissions towards psychological research..

Would it not be easier to stimulate such research without the involvement of White and Crawley?

To not take part in this venture is to reduce even the possibility of having the views you all seem to want to be heard left unspoken and it leaves those whom you do not like at the table by themselves potentially dominating proceedings more than they have done to date.

Firstly there is acknowledgement here that these colluding groups already dominate proceedings. I would agree. So any charity not of the colluding groups would probably not be able to influence agendas even if it were involved in the collaboration..

In fact it would be more likely they would be forced to publicly support agendas they don't believe in. This in effect would reduce alternative dissenting viewpoints, particularly in the eyes of the government and the industry groups supporting the colluding groups, and increase their domination.

I expect this is one of the major concerns behind the statement.

 

[Firestormm]

A straw man fallacy, if the colluding groups, and the MRC, have been involved in directing funding away from biophysical submissions towards psychological research..

Would it not be easier to stimulate such research without the involvement of White and Crawley?



Firstly there is acknowledgement here that these colluding groups already dominate proceedings. I would agree. So any charity not of the colluding groups would probably not be able to influence agendas even if it were involved in the collaboration..

In fact it would be more likely they would be forced to publicly support agendas they don't believe in. This in effect would reduce alternative dissenting viewpoints, particularly in the eyes of the government and the industry groups supporting the colluding groups, and increase their domination.

I expect this is one of the major concerns behind the statement.

BUT. The main instigator of this initiative is Professor Stephen Holgate:

A Dozen Different Diseases? Stephen Holgate Calls for Radical Change in ME/CFS Research

Do you honestly, honestly, want this man to go away thinking 'Nobody gives a shit so why should I bother'? Or that the only people who do are those who believe in the biopsychosocial disease causation theory?

However slight the chance. This is still an opportunity.


It ain't perfect. Nothing ever is. Even the biomedical research into ME/CFS leaves little impression on medicine (if any). Do you think charities and patient-funded bodies can 'go it alone'? The way things are increasingly across the western world - psychological interventions are being used more and more to 'help' try and relieve some of the burden (financial - health services - and emotional - patients) from chronic - no treatment little understanding - disease.

See it all the time. Witness the latest possible developments in terms of CBT for those on the dole with mental health problems.

I think I am wasting my time here. You guys have your opinions. I have mine. Neither 'side' will be right or wrong because the world - like it or not - is not black and white.

As I always say (and can be said of most chronic diseases). Got ME, live with it. Perhaps we will come in time to learn more about what is causing these mixture of symptoms and perhaps treatments will be developed that can provide relief even to the point of letting a person do more with their lives in greater comfort: but we are not there yet and never will be without at least trying to move forward.

We need the MRC to remain involved and interested in ME. We need it. Look at Ian Lipkin and what he said recently when applying for funding to the NIH 'No way. Not funding that. CFS is psychological.' (Paraphrase).

You have to try and try and try again. And keep trying to make yourself heard but by engagement and not by a refusal to engage.

Far easier - much easier - to refuse before something has really even begun on points of some principle. We are not a united community - we have little if any power and even if we did I doubt very much if we could reverse the tide of psychological intervention sweeping this and other nations.

Anyway. I have tried. I am not attending Bristol only because of the distance and expense but I do hope that something positive results from it and it is the first of many that sees attendance increase.

I will certainly be watching any recordings and reading any summations that follow this short and inaugural conference. Not expecting much but I think it's worthwhile to support.

 

[daisybell]

"You have to try and try and try again. And keep trying to make yourself heard but by engagement and not by a refusal to engage."

I completely agree. Yes, we have been and still are marginalised and misunderstood, but if we don't keep trying to engage at every level, with those who support us and also those who we feel don't, we are doing ourselves a disservice. If we can be seen as difficult or aggressive or extremist, then we play right into the psychosomatic camp.

Of course we have the right to feel bitter and angry, but those emotions don't move us forward. We have a better chance than ever to change the playing field, but we need to play a smart game.

 

[RustyJ]

The way things are increasingly across the western world - psychological interventions are being used more and more to 'help' try and relieve some of the burden (financial - health services - and emotional - patients) from chronic - no treatment little understanding - disease...

...Witness the latest possible developments in terms of CBT for those on the dole with mental health problems.

Really? In the middle of trying to sell biomedical initiatives you are promoting CBT. Is this reflective of how you see the collaboration working? I begin to see a role for Crawley and White.

 

[Sasha]

Really? In the middle of trying to sell biomedical initiatives you are promoting CBT. Is this reflective of how you see the collaboration working? I begin to see a role for Crawley and White.

I think that's the opposite of what Firestormm was saying - as I read it, "help" is in inverted commas to indicate that he doesn't think it really is help.

I agree that we need to engage. I don't think it hurts to have some charities in the collaborative and some outside it, either - that's possibly the best of all worlds.

 

[RustyJ]

I think that's the opposite of what Firestormm was saying - as I read it, "help" is in inverted commas to indicate that he doesn't think it really is help.

I agree that we need to engage. I don't think it hurts to have some charities in the collaborative and some outside it, either - that's possibly the best of all worlds.

Thanks for letting me know.

@FirestormmI've read it several times, and am too tired to work it out. Sorry, if I got it wrong there. Regardless, I see it that the main players in the collaboration are responsible for that situation.

 

[N.A.Wright]

40% of the recipients being psychiatrists is still far too many. We need rigorous biomedical research - the psych angle has been done to death and repeatedly proven to be a dead end.

In this case the ‘we’ is very particular, the thread is about UK patient organisations’ involvement with UK researchers based around UK taxpayer funded research. Maybe you have something to show how much better Netherlander patients are organized, how they are in co-operative discussions with Government supported researchers and how per capita spending on medical research is so much higher in Holland, as examples from which we can all learn. Or not.

The proposition that a whole medical specialism could be excluded from a grant giving processes is absurd. Other medical specialisms wouldn’t tolerate it, the wider research community wouldn’t tolerate it and it would almost certainly contradict the MRC charter. As for lumping all those with psychiatric training into a single ‘non person’ group, irrespective of the work they are carrying out, that serves only to exclude highly competent and imaginative researchers from involvement in ME/CFS research – David Nutt being a case in point. We cannot demand that ME/CFS be considered a neurological condition, and then demand that psycho-neurological research into ME/CFS be verboten, and still expect Government and researchers to take us seriously. At least not in the UK, perhaps things in Holland are different.

 

[N.A.Wright]

Those all started in 2012 and hence were approved prior to the start of the CMRC.

Crawley got a recent grant of £295,826 from the MRC http://gtr.rcuk.ac.uk/project/92F6B9E6-B13E-4BC5-AD74-F2245F8B5D54 starting Oct 2013 so I'm not sure if that even covers the CMRC time given the proposal-> start date time can be quite slow. discussed here
http://forums.phoenixrising.me/inde...me-in-children-using-the-alspac-cohort.31254/

I believe those 6 make up all the active MRC projects for ME

Correct – I meant to convey the sense of which groups were being currently funded, rather than the grant awards themselves being related to the existence of the CMRC. The point being that existence of the CMRC had not been contemporary with awards of £millions to White and Crawley. The £295,826 to Dr Crawley’s group was something I’d missed (still not £millions though as claimed above )

 

[N.A.Wright]

So can it be explained exactly why Peter White and Esther Crawley, who have been, and continue to be, massively funded by the mrc and other sources, should be part of the mrc collaborative. Both those researchers use a broad and vague fatigue based definition of 'cfs' and continue to muddy the research water with chronic fatigue research.

Inclusion of Crawley and White in the collaborative is a travesty ofvwhat Prof Holgate promised the ME community at thevRSM conference in 2009.

Though at the time, astute patients suspected thatbPfofvHolgatesvproposal ton"bring the patientvgroupsvtogether" really meant that AFME, AYME, and thevMEA would run the show, and anyonevwho disagreed would be portrayed as obstructive. Which appears to be what NAWright is saying. No dissent. Astute and informed patients don't buy it.

Perhaps instead of ascribing false intention to me (if I’d meant ‘no dissent’ that is what I would have written) you could have acknowledge your claim that Crawley and White had received £millions from the MRC coincident with the existence of the CMRC – was wrong.

There is no, and nor could there be, any basis to exclude from a research collaborative supported by the MRC and NIHR, any accredited UK medical research group. By astute and informed, you mean people who think like you, and in so doing you deny the validity of all the patient and carer supporters of those organisations who are involved in the CMRC, who by implication are either stupid/and or ignorant. Doesn’t seem a great way to build a consensus, but then most of the discussion on PR seems geared to sectarianism.

As to AfME, AYME, and the MEA ‘running the show’ – well if there’s no one else there who from the patient side ‘will run it. If one is not at the party you can’t join in the games, on which point how much better would the Scientific meetings be if IiME had nomination rights, and for example should he be willing, sponsored Jon Edwards to give a presentation ? It’s not as if the IiME are purists, unless of course they are going to give the MEA back the £60k it put towards the Rituximab study because the MEA is part of the CMRC.

 

[N.A.Wright]

The amounts being spent on research by the MRC seem tiny in comparison to the enormous amount of money wasted on PACE and FINE.

Who is funding White's GETSET if not the MRC? The results are a forgone conclusion. Crawley's SMILE trial is being funded by the Linbury trust, a good reason to boycott Sainsburys as it is their charity.

I really don't see how working with Crawley and White helps us in any way, The Collaborative will ensure that the Wessely school of psychiatry will dominate UK Myalgic encephalomyelitis research for evermore.

PACE and FINE (only part MRC) were funded under pre 2008 regimes, post the financial crash research money is much tighter and revisiting past injustices with the idea that one can gain some kind of balance in the present is a strategy doomed to fail. GETSET is completed and was funded by NIHR which is heavily motivated by the need to reduce health costs – dealing with the NIHR is a challenge because its structure is far more opaque than the MRC, it is also not a national body but effectively a creature of NHS England. The NIHR is a problem, but simplistic arguments of non engagement will achieve only the status quo.

Working with White and Crawley – you can’t make peace with your friends. Patients have to work with all parts of the medical research community, the alternative of selective co-operation, consigns ME/CFS patient supported studies to an isolated ghetto where significance is lost.