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

[Valentijn]

I think the issue is arising because politics are driving what should be a purely scientific process.

CMRC should be a scientific endeavor. Research into any disease is a scientific matter. Yet the BPS approach regarding ME/CFS is inherently unscientific and often dishonest. This is highly objectionable to any rational human being who is not completely ignorant about the low quality of BPS research into ME/CFS.

Having BPS practitioners involved in the CMRC is equivalent to having hardcore fundamentalist creationists on a research collaborative regarding research into the theory of evolution. The very prospect is absurd. While we could say that everyone is entitled to their opinion, and should be allowed to give input, it's important to remember that not everyone's opinion is scientifically valid.

The fundamentalists who reject science are not going to renounce their views. There is not going to be a consensus. There will be constant disagreement between the factions, because they are working in entirely different frameworks.

But on the other hand there is a highly dysfunctional political involvement regarding certain diseases. Hence the CMRC is forced to allow the irrational and unscientific fundamentalists to participate. The entire situation is wrong, and despicable, and it should be remedied. But it's also unavoidable currently.

So I understand why it's happening, and I think real researchers are doing the right thing by participating and not allowing the fundamentalist BPS group to rule the CMRC unopposed. But I find it disgusting that fraudsters and quacks are put on equal footing with honest and diligent researchers, and I hope that situation ends as soon as possible.

And I hope that any real researchers on the council do not allow the fundamentalists to get a "fair share" of funding or other influence calculated based on there being X number of real researchers and Y number of quacks. The bottom line should be the science, even if the non-scientists can't be kept out of the CMRC entirely.

 

[Amused]

I've read the thread carefully - very interesting.

I'm a bit uncertain though - (I'm new, this is my first post so if I say things that are against the rules, I've read them, and trying not to, so it'll be by accident!) This is what I think I understand from what's above:

The 25% Group has said they're not joining this Collaborative Group.

This Collaborative Group seems to have official recognition and maybe (?) some degree of influence/ decision making powers (?) as to where research money is best spent. And the Collaborative Group has a broad spectrum of specialists (some of whose theories are more controversial than others), and the more controversial ones are included otherwise the Collaborative Group wouldn't have official recognition because whoever the official people are want to have as much ground covered as possible. And it also has a broad spectrum of Charities involved in it as well.

Which leaves me with a couple of questions that despite a google I couldn't find the answers to:

1. How much influence in reality does or will the Collaborative Group have on how research monies are spent in the UK?

2. So where IS the 25% Group Charity having a voice with regard to how research monies are spent and the extent to which the needs/ concerns/ issues of the severely affected are considered? What other avenues of influence are open to them?

One final thing that occurs to me, is that I'm a paid up member of both the AFME and the MEA. Have been for a while, and my perception is that the stuff I get from them has a pretty good balance of coverage for mild, moderate and severe sufferers - for example it's how I found out about Emily C's excellent Severe ME book from an article in the AFME magazine. And that both those charities do raise severely affected issues at the same time as mild/moderate ones during their activities. I've no idea how effective that is, but I do recognize that they are at least trying.

My point being that whilst the 25% Group is the only charity that concentrates on specifically severely affected ME/CFS sufferers, other charities include them in their wider remit - so the 25% Group charity is NOT the only voice that severe sufferers have. It's a strong one that has quite rightly gained a lot of respect over the years, but it can't possibly always have 100% buy-in from the group they help so splendidly.

Like any sufferers of any illness, people with severe ME/CFS are part of a 'group' of sufferers against their will, but they're still individuals with their own thoughts and ideas, and I personally don't feel it's necessary for every Severe Sufferer (or anyone else) to agree with everything that a particular charity does or doesn't do to support them. And at the same time, if any charity is supporting people and giving them a voice, then the charity (and it's supporters) have to accept that sometimes the voice they give someone isn't raised in their favour! If one wants to have a voice oneself, the corollary to that is that everyone else is allowed their own voice too.

I don't know much about any other charities and their activities, nor the historical difficulties. Though I am joining the 25% Group as a paid up member soon, so maybe I'll find out more about what they are doing instead then.

 

[Wildcat]

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The widespread and deep concern and disquiet about the CMRC (the Collaborative) is not a 'mild, moderate or severe ME' issue. The charities who have, as is their right, declined to sign up are the Tymes Trust, long standing childrens charity, Invest in ME, and the 25% Group, and the Grace Charity.


The issue is the involvement of Prof Peter White and Dr Esther Crawley, who do not subscribe to a biomedical definition of ME, and who have wielded unconscionable amounts of influence in reconstructing ME as Chronic Fatigue and as a psychosomatic/psychosocial entity. Those doctors have, over the years, received VERY many £millions in funding for CBT/GET and other psyche based studies into 'CFS', what they define as Chronic Fatigue, (whilst Esther Crawley claims to research ME, she, and Peter White, use a broad and vague fatigue definition).

But both have been given places on the CMRC, and Dr Crawley is Vice Chair.

AFME and AYME have long history of collaborating with Peter White and Dr Esther Crawley.


Prof Stephen Holgate, who proposed the CMRC, announced his proposals at a Royal Society of Medicine (RSM) conference in July 2008.....his proposals were for Biomedical Research, what he called 'omics' - genomics, proteonomics, metabolomics etc. NOT more CBT and other psychological based research, which has already consumed tens of million of UK Public Money over decades.

Since then the only UK ME genetics researcher (Jonathon Kerr) has lost his tenure (all of Dr kerr's applications for funding from the MRC were rejected, Dr kerr went on record stating that his applications were scuppered by psychiatrists on the MRC funding board, Dr Kerrs statements on that were recorded on video at an IIME conference).




It should be noted that the July 2008 RSM conference on ME at which Bioresearchers were allowed to speak, was ONLY arranged due to a very widely supported ME Patient Protest outside the RSM in April 2008. The Protest, Petition, Postcard campaign to the RSM was due to the RSM hosting a 'CFS' conference at which Biomedicine was not represented.

At that April 2008 RSM Conference Psychiatrists (Peter White included) promoted 'CFS' as a psychosomatic entity, and ridiculed the Canadian Consensus Criteria. The UNUM Representative, Professor Mansel Aylward also spoke at the RSM April 'CFS' Conference.


Due to the widespread and strong dismay about the 'Psychiatrists CFS Conference' of April 2008, but especially due to the Patient Petition, Protest outside the RSM, and a Postcard campaign to the RSM (post cards were sent from all over the world) the RSM convened a half day ME conference in July 2008, which patients and carers could attend as well as researchers.

At that July RSM Conference ME Bioresearchers spoke, alongside presentations from the children's charity Tymes Trust, and Prof Holgate floated his proposals for an ME research Collaborative. Prof Holgate did not propose more involvement of psychosocial proponents, who have wielded unreasonable power in ME research, policy, and perpetrated harmful, distorted portrayals of both the disease and the patients, over decades.



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The influence of Dr Crawley at least has been made clear in the CMRC Charter, due to the inclusion of the utterly bizarre and unprecedented demand issued in the CMRC Charter:

CMRC Charter:
"3.2.3 Members will be required to sign a declaration that they will not take part in the harassment or abuse of researchers. Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research."


Thats insulting to the charities, and could very easily constitute a gagging clause, inhibiting reasonable criticism of future 'CFS' psychosocial research..
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And last, but not least, the involvement of the Science Media Centre is a red warning sign.

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[Amused]

OK thanks for that explanation Wildcat.

So then maybe my second question should have been - not just what other alternative avenues are there for the 25% Group, but also TYMES, IIME and the Grace Charity?

Though I do know the IIME are fundraising for the Rituximab trial, so that's one avenue.

 

[Wildcat]

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I'm all done in for today. But here is Invest in ME's take on the CMRC .... IIME proposes a more effective and necessary way forward. Its rather long. And it was written before the bizarre and worrying CMRC 'gagging clause' was revealed, I think.

http://www.investinme.org/IIME-Newslet-1304-01.htm

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The argument that keeps being put forward is that if the charities and patients are not involved in the CMRC then we can't influence.

That argument has been shown to be redundant again and again. The CMO's Working Group (1988-2002) and NICE Guidelines (2007) showed that Involvement does Not equal Influence. When the Psychosocial Doctors are involved its them who wield the power and influence, and we only find out when its far too late.
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Those who are sceptical about the Collaborative can see history repeating itself already, even at this early stage of the CMRC.

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[Amused]

Oh dear. Well thank you for using your energy on my questions. I'll have a look at it.

 

[Sasha]

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The argument that keeps being put forward is that if the charities and patients are not involved in the CMRC then we can't influence.

That argument has been shown to be redundant again and again. The CMO's Working Group (1988-2002) and NICE Guidelines (2007) showed that Involvement does Not equal Influence. When the Psychosocial Doctors are involved its them who wield the power and influence, and we only find out when its far too late.
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Those who are sceptical about the Collaborative can see history repeating itself already, even at this early stage of the CMRC. .

I think that all that that shows is that involvement does not guarantee influence. It seems to be based on the assumption that if at first (or second or third) you don't succeed, you should give up.

Although it's true that if you do exactly the same thing in exactly the same circumstances you can expect the same result, things in the ME world have changed a great deal in the past few years. Since the XMRV issue in 2009 there's been an explosion of interest in ME among biomedical scientists. The research has been making real progress and biomedical researchers are in a much stronger position as a result. What happened in 2002 and 2007 is by no means necessarily a guide to what we can expect to happen now.

Plus, we have to remember that the CMRC is an initiative led by the biomedical side, even though the BPS school are hanging on its coat-tails.

 

[Wildcat]

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Sasha wrote: "Since the XMRV issue in 2009 there's been an explosion of interest in ME among biomedical scientists."
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But not in Britian. What has happened in Britian since 2009 was an actual intensive and extended frenzy of patient-defaming media reports (orchestrated by the SMC) designed to put off researchers (2011-2013), which started just after the publication of the International Criteria and the PACE Trial..

What I illustrated in previous posts is that the pattern of non-influence of charities (via involvement) has not changed, and is recognisable from earlier projects in which involvement did not equal influence. They were long drawn out processes, a lot of people were 'hopeful', and what resulted was same old same old.... in fact much more of it.

I would love good useful bioresearch to come out of the Collaborative's influence..... but am not optimistic....


I do think it would have been better for all the charities to have put their collective feet down and insisted that its Bioresearch that is needed now, not more muddying the water with wishy washy vague fatigue definitions or fatigue research.

 

[Valentijn]

What I illustrated in previous posts is that the pattern of non-influence of charities (via involvement) has not changed, and is recognisable from earlier projects in which involvement did not equal influence.

Yes, the increase in worldwide biomedical research and positive results have given the charities a good opportunity to legitimately break away from the BPS model. But perhaps they feel limited by the lack of good British research, much in the same way that many British (or Dutch, or Australian) doctors will arbitrarily reject foreign research or testing.

There's also the problem that funding for charities in the UK seems to be largely dependent on keeping the government agencies happy? Thus failing to toe the party line can result in failure to get sufficiently funded, resulting in charities trying to support real ME patients, but being afraid to really speak up. Though other charities might deliberately cling to the broader BPS view of "chronic fatigue" in the misguided hope that it will increase their membership numbers by attracting masses of fatigue patients - the attitude of AfME, for example, seems to conform with this model.

 

[Firestormm]

There's also the problem that funding for charities in the UK seems to be largely dependent on keeping the government agencies happy?

ME Association certainly doesn't get any Govt. funding.

 

[Sasha]

There's also the problem that funding for charities in the UK seems to be largely dependent on keeping the government agencies happy? Thus failing to toe the party line can result in failure to get sufficiently funded, resulting in charities trying to support real ME patients, but being afraid to really speak up.

I don't know about AfME - they've only fairly recently started funding research - I'm not aware that any of the other UK ME research charities receive government funding, even for their support work (as opposed to research work). MERUK only does research (not support).

Rather than receiving govt grants, the research charities are filling the biomedical research funding hole that the govt is leaving.

 

[Amused]

From my own personal perspective, I'm not sure it's that clear cut.

What I mean is that in my own personal experience, I first started symptoms of what is now full blown severe ME/CFS that now keeps me in bed 23 hours a day in the late 80s. It was very mild, and intermittant and eventually turned moderate around the millenium. Then severe very suddenly in recent years.

So for me, I suspect if I looked at all the different criteria - London, Canadian, Fukada etc, although I've not actually done so with that aim in mind - I may well find that I started off fulfilling the 'wishy washy' mostly fatigue criteria and now have ended up following (edit -fulfilling is what I meant sorry) the more 'strict' criteria than the 25% Group Statement would prefer the Collaborative to follow.

The unpalatable truth for me personally is that at every stage of this illness (which has fluctuated rather than progressed when I was experiencing but with hindsight maybe it's progresed more than fluctuated) - I've had to give stuff up, and that at the time, within the relative scope of my knowledge and experience at that time, where I found myself after I gave something up as compared to where I found myself after I gave it up - the emotions and impact on my quality of life were the same.

It's going to sound odd, but with hindsight, the impact of me only doing 2 fun things on a day out instead of 3, has actually generated the same reactions in me, as say, last year me eyeing up the glass of water with a straw 2 inches away and wondering how to best use the energy I wasn't sure I even had to get straw to lips and water to mouth. To an outsider, they're two very different things, but in the context of one's own abilities on any given day relative to other recent days, they're the same.

So from my personal point of view and I do realise that it's probably rather an unusual one (I blame the prescription drugs ) - keeping a 'broad church' and being inclusive of all those dumped in the bucket of 'ME/CFS' is more helpful than it is a hindrance?

I absolutely understand what people have said above on both sides about influence in reply to my original posting, but the one thing that keeps tripping me up is, there's going to be a lot of dead ends before significant progress is made (and I'm no scientist so am willing to be wrong) so I genuinely don't understand how it helps our community either as specific subsets or a whole to say - well fatigue isn't ME so therefore people with those symptoms should be excluded.

Don't you need to be able to do comparisons between different 'things' (sorry I don't have the right language) - symptoms or molecules or mitochondrial wotsit behaviours and they way they either are similar or different to determine whether or not a hypothesis has value?

And being entirely selfish, I do feel tired. A lot. Even though I'm not doing anything by normal people's standards. It's one of my symptoms. I'd like it controlled or fixed. The same way I'd like everyone elses' personal 'collection' of symptoms to be controlled and fixed.

So if I'm in a minority and there's more people with more severe/ debilitating symptoms that need to be helped first, fine, I'll wait at the end of the queue, but I don't want to be slung off it entirely?

And to me, as someone who doesn't know the history or the politics, it does feel a bit like that's what people are saying, that fatigue symptoms muddy the waters and need to be excluded? (I hope I've just misunderstood though!)

 

[Amused]

Sorry what I probably haven't made clear is that yes I totally agree biomedical research is the logical route, and has been for decades (though bizarrely underrecognised, and I can see why there's anger and frustration about that), and that funds are tight and priorities need to be made and there's tough choices that are unpalatable to many that have to be made cos it doesn't fit what they need themselves.

But I do feel some discomfort that people who are struggling with fatigue which may or may not be ME/CFS related, and who aren't able to determine what's going on, generally due to poor front line diagnosis services, appear to be being dismissed in some way? The only way I got help was cos my GP told me to go to websites like AFME and MEA cos they're accessible and inclusively written in simple terms that help you cope with the initial 'oh f**k' realisation something is wrong. And I don't understand why a charity deliberately choosing to support as many as possible is any different in terms of validity than say, choosing to support a particular subset? In my eyes AFME/MEA supporting a wide range of people is just as valid as 25% Group supporting a more closely defined subset of people?

Or am I hopelessly misunderstanding what people are saying here?

 

[Wildcat]

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@Amused.....

.Its not just about about severity (tho severe ME patients are the most neglected), its about properly defining the disease and more acurately diagnosing it.. research on vaguely defined fatigue does not help sufferers of a complex neuro-immune disease, and does not help people who have been misdiagnosed with 'CFS'.

Its the Fatigue-Based definitions that are the problem.... ME is not defined by fatigue plus a couple of vaguely defined symptoms. But those are the damaging vague criteria used in Britian that has created a 40%+ misdiagnosis rate. Thats people who sufferr from entirely different conditions, of which fatigue is one, who are wrongly given a 'CFS' diagnosis, when so often their actual condition could be treated, or better treated. And people with ME (including subtypes) are only offered useless or actually damaging 'management'.


See The terms 'PEM' and PENE' as the central defining feature of ME (but not the only symptom).

see 'Oxford Criteria problems....... CDC Criteria problems ...... NICE Criteria problems........


See 'Canadian Concensus Criteria (CCC) 2003'

'The International Concensus Criteria (ICC) 2011.'

Canadian Concensus Criteria (CCC) 50 Experts letter to US Health Department (HHS)'....
http://phoenixrising.me/archives/19618



I really can't do anymore..... to clarify this to you at present.

I know it sounds complicated. Sorry. But there are very many threads on this Forum that could inform you about the problems with Fatigue based definitions and its harm to research and harm to patients. Will take a bit of searching, but there is a lot of info and explanations here..


And I don't think that people responding here are motivated by "anger and frustration" (those terms are frequently used and can be rather insulting to people who have made informed reasoned arguments with referenced evidence).

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[lansbergen]

@Amused.....

For instance Do you want every person with fever to be included in spanisch flu research?

 

[Min]

.I do think it would have been better for all the charities to have put their collective feet down and insisted that its Bioresearch that is needed now, not more muddying the water with wishy washy vague fatigue definitions or fatigue research.

I do not believe that the current awful, and worsening situation will change for us in the UK until they do.

 

[Wildcat]

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Wildcat said: ↑
."I do think it would have been better for all the charities to have put their collective feet down and insisted that its Bioresearch that is needed now, not more muddying the water with wishy washy vague fatigue definitions or fatigue research."

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In fact we could do with a UK version of the '50 World ME Experts urge the US Health Department to adopt the use of the CCC as a matter of urgency, and failure to do so will hold back research and harm patient care'... We need that Statement to the UK DOHealth as well.

Bearing in mind that the 50 Experts letter included the proviso of updating the CCC as new evidence is revealed, which it is being yearly now, and including material from the ICC.
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It would be great if the Charities and Groups would sign up to such a letter. International ME Experts could sign it too.

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[Amused]

@Amused.....

For instance Do you want every person with fever to be included in spanisch flu research?

If Spanish flu had no known cause or treatment and was part of a bucket diagnosis where other people with otherwise unexplained fevers that shared key characteristics with Spanish Flu were also deposited by diagnosis by exclusion - then yes. I would (want the fevers experienced by those in the bucket to be investigated). Because everyone who is in a bucket that demands that certain characteristics/symptoms are shared to be placed in it, deserves all their symptoms being controlled if not explained.

I would also like people not to be put in said bucket due to misdiagnosis, because they are doubly unfortunate in that if they were diagnosed properly their symptoms may be able to be controlled and explained and maybe even fixed.

 

[Amused]

@Wildcat I perceive 'anger' and/or 'frustration' as a perfectly reasonable response to the decades during which the psychologically based theories have taken centre stage over organic hypotheses. And one can be angry and frustrated whilst also being well reasoned & factual.

 

[Wildcat]

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I'd use the terms "horrified" and "disgusted" to describe my feelings about the relentless damaging nonsense that passes for ME policy, (mis)treatment of the patients, and such quantities of grotesque misleading media reporting in Britain.......and the psychosocial/CBT research funding gravy train that has consumed gross amounts of public money, instead of being put into well designed bioresearch on a well defined patient population.


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