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

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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.
Are you (repeatedly) suggesting that my opinion is irrelevant because I'm not living in the UK?
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.
Funny, it happened for decades (and still happens), except that it's biomedical research which is excluded from grants, publication, and being taken seriously. And that exclusion is widely tolerated.
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.
Who said that psych researchers aren't people? You're either imagining things or deliberately attributing things to me which I did not say. Psychologists and psychiatrist can do very helpful work with psychological and psychiatric conditions. We already have a gross excess of mostly useless psych research involving ME/CFS, and it's time to stop wasting very limited funding on it until significant progress has been made in biomedical ME research.
 
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@ Firestormm.... CBT for all (as a getting back to work national agenda to get people off benefits ) is economist Richard Layards baby. As is, people who want cbt cant get it in the NHS, but its being shoved down the throats of physically sick people in leui of treatment. CBT as national agenda to get 'em back to work is about mass therapy, not about best responding to the real needs of people with complex mental health conditions. Layard had to give up on his 'CBT for all' ideology when it emerged there were not enough therapists who were skilled enough, and not enough money to train them. Many people with mental health conditions say they would prefer longer term supportive person centred therapy...... but cbt has been so wrongly blown up into a supposed cure all that longer term (thus more costly) therapies have been blown out of the water. In britain cbt is political. CBT as mass national therapy for vulnerable people with anxiety or depression...... will inevitably be CBT on the cheap... a disaster in the making. 'cbt superiority questioned at conference' sorry, cant get the linkup.... but 'cbt superiority questioned at conference' will bring up the material by the strathclyde uni, miami uni and saybrooke institute which unpicks the myths about cbt.
 
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@NAWright..... i will attempt to respnd to your points over the next couple of weeks..... i hope you understand that i am limited in communications as cannot communicate well, or give links, on this bleedin tablet.... which is a spatial nightmare..... I need a big keyboard and my familiar computer xx
 

Purple

Bundle of purpliness
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489
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.

Correction: the MEA has NOT given £60k towards the UK rituximab trial so there is nothing to "give back". Nearly all of the £350,000 needed has been raised and pledged by Invest in ME supporters.

www.ukrituximabtrial.org - total stands at £346,000 as of today.
 

N.A.Wright

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quote – “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.”

Correction: the MEA has NOT given £60k towards the UK rituximab trial so there is nothing to "give back". Nearly all of the £350,000 needed has been raised and pledged by Invest in ME supporters.

www.ukrituximabtrial.org - total stands at £346,000 as of today.
Yes – the MEA has ‘pledged’ to co-fund the study along with others including the unnamed institution that has pledged £200,000; so to have been accurate I should have written “unless of course they are going to refuse the MEA co-funding the Rituximab study because the MEA is part of the CMRC.” ref: http://www.meassociation.org.uk/201...e-money-ring-fenced-for-2-years-29-july-2013/

Co-operation between patient groups would seem by far the best way forward, it is after all quite possible to be a supporter of more than one organisation without any need for a sectarian divide. IiME particularly faces the stresses of such a divide not only where co-operation on funding is needed but in the organisation of conferences – is it really feasible that IiME would exclude researchers who were CMRC members from future IiME conferences ? That seems very unlikely given how damaging it would be.

To emphasise the point I made previously – one can not make peace with one’s friends – by definition peace already exists. It’s those we are in conflict with that we have to talk to if progress is to be made, unless of course one takes a ‘death or glory’ attitude, which is a perverse position to adopt in the field of medical research. Will there be an absolute conjoining of positions between patient groups and biopsychosocial proponents – of course not, but peaceful co-existence is far more likely to produce benefits for patients than a perpetual state of war.
 

Min

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Invest in ME are jst £4,000 short of funding for their initial Rituximab trial. This shows what patients themselves
can do.


The field of medical research into myalgic encephalomyelitis in the UK could not be in a more perverse position, with nearly all tax payer funded research being into the psychology of vaguely defined fatigue. After waiting in vain 30 years for this position to change, many of us are not happy with the charities that collaborate with those responsible for the misappropriation of funds instead of speaking up against it.
 

Firestormm

Senior Member
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Invest in ME are jst £4,000 short of funding for their initial Rituximab trial. This shows what patients themselves
can do.


The field of medical research into myalgic encephalomyelitis in the UK could not be in a more perverse position, with nearly all tax payer funded research being into the psychology of vaguely defined fatigue. After waiting in vain 30 years for this position to change, many of us are not happy with the charities that collaborate with those responsible for the misappropriation of funds instead of speaking up against it.

Yep it is a terrific endorsement of patient support for this kind of research initiative. Of course £200k comes from the mysterious donor - a charity I believe - but that in itself was quite a surprise.

I can't wait to hear/read of the protocol for the initial pre-trial study, I think for me personally, that is the one I am particularly interested in. And then I suppose we might hear how much more money will be needed to proceed with the full clinical trial of Rituximab as I understand the current target was an initial one.

Let's hope some good things are gained from the all-out efforts over Rituximab. I certainly hope something is gained for all the support it has generated.

Do you recall how long they expect the actual Trial to take? And if Norway will report first?
 

Sasha

Fine, thank you
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Do you recall how long they expect the actual Trial to take? And if Norway will report first?

They expect it to be much quicker than the Norway trial - it's smaller and more focused (and I think the pre-trial work is part of making it more focused).
 

Sasha

Fine, thank you
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Invest in ME are jst £4,000 short of funding for their initial Rituximab trial. This shows what patients themselves can do.

I agree, this is tremendous - this is the sort of thing that the MRC should have been funding for years.

The field of medical research into myalgic encephalomyelitis in the UK could not be in a more perverse position, with nearly all tax payer funded research being into the psychology of vaguely defined fatigue.

It's very good news that this seems to be changing now.

After waiting in vain 30 years for this position to change, many of us are not happy with the charities that collaborate with those responsible for the misappropriation of funds instead of speaking up against it.

Charities have attacked the use of government funds for psychosocial research, repeatedly. I think all of us would like it if it had been possible to get more money for biomedical research - which the charities have been pressuring the MRC on for years - without having to set up a collaborative that had to included all parties (and my understanding is the same as N.A. Wright's on that - that it wouldn't have been possible to do it any other way and still have the MRC recognise it).

Prof. Holgate has experience from his own medical speciality of setting up such a collaborative and seeing funding from the MRC increase hugely. He's an experienced scientist and I trust him to have a good grip of the politics. I think it's better to increase the MRC's funding of ME research from its appallingly low historical baseline and have the majority of that going to biomedical research into ME, even if the BPS cadre are able to get some of the pie.

It's also worth bearing in mind that while this is a collaborative (in the sense of everyone wanting to boost funding), its members are actually in competition for funds. I'm sure the ME charities will be hoping that being in the Collaborative is going to boost total funding and that they'll get the lion's share for biomedical research.

Time will tell! Personally, I'm optimistic. :)
 

shahida

Senior Member
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120
But from a strategic point of view if charities which believe in ME as a neurological illness didn't participate then the whole show would be run by the psychos so, better to have a voice and fight your corner I think.
 

Min

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But from a strategic point of view if charities which believe in ME as a neurological illness didn't participate then the whole show would be run by the psychos so, better to have a voice and fight your corner I think.


If all the myalgic encephalomyelitis charities refused to work with the psychiatrists and other doctors who have harmed instead of helped us, there would be no Collaborative.

Better to speak up against evil than collaborate with it.
 

N.A.Wright

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If all the myalgic encephalomyelitis charities refused to work with the psychiatrists and other doctors who have harmed instead of helped us, there would be no Collaborative.

Better to speak up against evil than collaborate with it.
Of course if one has a perspective that groups of UK medical researchers are ‘evil’, and that sustained resistance against that ‘evil’ is philosophically demanded, then isolationism is a logical position. But if the force of that position is dependant upon an absolute solidarity, then it is already fatally weakened, which goes to point I made previously:

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.

For those casting disapproved of researchers as ‘evil’, the patient collaborators must necessarily become ‘tainted’. Does that make the supporters of MEA, AYME and AfME, themselves evil, or are they just dupes, too stupid or brainwashed to understand how they are pressed into the service of the darkside ?

Other illness advocacy movements certainly generate arguments and conflicts between patients, but I think ME/CFS is unique in the extent to which advocacy so frequently breaks down into sectarianism. It’s plainly unhealthy for the participants, it is obviously an inhibition to progress and only confirms the pathological nature of patient psychology to those who doubt the organic basis of the disease. I’ll repeat one other point I made above: “turning ME/CFS research into the Gaza of medical investigation strikes me as being unwise to say the least.”
 

Sasha

Fine, thank you
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Of course if one has a perspective that groups of UK medical researchers are ‘evil’, and that sustained resistance against that ‘evil’ is philosophically demanded, then isolationism is a logical position.

I think that the involvement of psychiatrists holding the BPS model in our disease has been hugely damaging to patients. I think we would be better off without that involvement. I think Min would agree with that.

However, I think where my position differs from Min's is what to do about that. I see the collaborative as a pragmatic means to get more funding for the field as a whole and as a way to boost funding for biomedical research. It was started by Prof. Holgate, and that's his intention for it. Researchers who favour the BPS model may get some of the pie, but the hope would be that that will be a small share. That would be a big improvement on the situation that has gone on for years.

For those casting disapproved of researchers as ‘evil’, the patient collaborators must necessarily become ‘tainted’.

I think that's the point at which PWME become polarised about this. I see that as a very black-and-white view and one that would keep us locked out of resources that could benefit us all. It's a position that keeps us frozen in a weak position. I think it's also a position based on pessimism: that the strong research coming out now (Rituximab, the Lights, the 2-day CPET, etc.) is incapable of tipping the balance of funding towards biomedical research.
 

Cheshire

Senior Member
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Of course if one has a perspective that groups of UK medical researchers are ‘evil’, and that sustained resistance against that ‘evil’ is philosophically demanded, then isolationism is a logical position.

You are turning down the debate into a moral question. I certainly don't consider the UK medical researchers as "evil", which is a moral claim. But I'd be happy if money were given to biological research after years of fruitless psychiatric trials. We just want good sound research.


Other illness advocacy movements certainly generate arguments and conflicts between patients, but I think ME/CFS is unique in the extent to which advocacy so frequently breaks down into sectarianism.


Are there other diseases that have been dismissed to the point ME/CFS have been?


It’s plainly unhealthy for the participants, it is obviously an inhibition to progress and only confirms the pathological nature of patient psychology to those who doubt the organic basis of the disease.

I partially agree, our anger is legitimate, but if we express it directly, it will confirm our psychiatric nature to those who think ME/CFS is somatization. But to a certain extent, I don’t think these people want their opinion to be challenged, they are sticking to their point of view whatever we do endorses it.

Victories of minorities have been won by different means (American civil rights, defeat of apartheid, fight of Aids sufferers) where different approach (peaceful or more violent) were used. But what is sure, one has to be firm on what is acceptable or not, and a too close collaboration with the other part (when the other part is not willing to compromise) is never useful.
 

Min

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I believe that the harm is being done to us, and to children with myalgic encephalomyelitis, by the Wessely school of psychiatry is evil, which is why I am horrified that these charities are working with some of those responsible.

I do not believe that biomedical research the Collaborative propose is evil, but it will be useless if it is done on people with vaguely defined fatigue.
 

taniaaust1

Senior Member
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I've never heard of this group but support the need to further research ME.

How are patients supposed to keep up with all the groups involved or classifications of ME ?

Tc .. x

Its actually a very well known group, a group that has been there strongly fighting against the Wessely stuff in England for a very long time. Im surprised you hadnt heard of this one.

but yeah, I can understand people not even knowing all the well known ME groups.
 

Gingergrrl

Senior Member
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@taniaaust1 I did not mean that there are not millions of doctors in the US who support a psych agenda or CBT/GET b/c there are!

What I meant is that the "True" CFS specialists in the US (who are few and far between) do not support these theories and are doing research and testing to try to find the real cause. Sorry if my post was unclear!
 

xchocoholic

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Its actually a very well known group, a group that has been there strongly fighting against the Wessely stuff in England for a very long time. Im surprised you hadnt heard of this one.

but yeah, I can understand people not even knowing all the well known ME groups.

I've been busy trying to understand my symptoms and medical jargon. Groups and cfs categories have taken a backseat.

But I'm glad others know this. Tc .. x
 

N.A.Wright

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You are turning down the debate into a moral question. I certainly don't consider the UK medical researchers as "evil", which is a moral claim. But I'd be happy if money were given to biological research after years of fruitless psychiatric trials. We just want good sound research.
I was simply following the logic of what other posters presented –‘evil’ wasn’t my choice of word.
Are there other diseases that have been dismissed to the point ME/CFS have been?
Isn’t that just an ‘oh poor us’ excuse. Sectarianism amongst patients is obviously a harm to our collective interests, so when organisations take different directions the only thing to do is ‘suck it up’ and acknowledge the validity of choice that patients are taking. There’s no requirement to ‘agree’ but using words like ‘evil’ only turns the whole thing into a war of religion.
I partially agree, our anger is legitimate, but if we express it directly, it will confirm our psychiatric nature to those who think ME/CFS is somatization. But to a certain extent, I don’t think these people want their opinion to be challenged, they are sticking to their point of view whatever we do endorses it.
The point about a scientific collaboration is that there is no faceless “these people” – everything is attributable and positions have to be justified within the context of the collaboration. Of course it may not work, but unless it’s tried, we are merely left impotently shouting across walls.
Victories of minorities have been won by different means (American civil rights, defeat of apartheid, fight of Aids sufferers) where different approach (peaceful or more violent) were used. But what is sure, one has to be firm on what is acceptable or not, and a too close collaboration with the other part (when the other part is not willing to compromise) is never useful.
Medical research is no place to play out civil rights issues, and the justifiable anger thing only leads to Gaza-isation – choose which side you identify with most and you’ve got your justification for whatever insanely murderous action you want. So ME is a bum rap – welcome to the world, we are not Apartheid era Black South Africans – a majority not a minority ! Neither are we collectively African Americans (I’d like to see the stats that show ME patients being x times more likely to be in jail) and as for AIDS activism –one can barely tell anything about that bit of history for all the self serving hype about a few individuals and groups which wipe the ranks of quiet diligent researchers and activists entirely from the story.

To the world at large we are and will remain, just another patient group, we can argue that certain medical specialisms have undermined the level of public sympathy we might otherwise have enjoyed, but is anyone going to listen – probably not. To progress we need to influence medical research, not merely via isolated one off studies or grand single focus institutes, but as part of the broad spectrum of medicine. The picture of ME as a single disease is no longer tenable, solving it for everyone who has a tentative diagnosis of ME/CFS under whatever criteria, will require interest from a broad range of specialisms, which is potentially what initiatives like the CMRC are able to deliver.