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

[beaker]

@Chickadee9

Only folk with "pure" ME have ME.
Folk with "CFS" have some undiagnosed problem that is not pure ME.
Yes, their troubles need investigated, for example, my friend had heart failure and needed a pacemaker, but got lost to the "CFS" label for 10 years.

Only folk with "pure" ME, the kind with PEM, the kind that are made worse by GET and CBT, have ME.

Anybody trying to submerge true ME under the CFS label is guilty of pursuing the psychological agenda.

And of ignoring the real problems folk with "CFS" have.

ie. the recommending of "no further testing" once the label has been stuck on somebody, is the problem there.

And the stupid assumption of; "if all the standard tests show nothing it is hysterical conversion disorder".

By your statement above you think Peterson, Bateman, Klimas, Bell, Cheney, Enlander and on and on here in the states are "pursuing the psychological agenda " ?

ETA: There is too much of a divide between the US and UK and other parts of the world.
What the UKers don't seem to get is that in the US these docs use the terms interchangeably But they use the CCC or ICC.
But when you try to divide it up like you have and diss CFS-- you diss the large lump of patients here in the US. I can't use the ICD code for ME for my disability and such.
I am stuck w/ the CDC's CFS. AND it is a BIG step in the US for the agencies to now use ME/CFS or CFS/ME. HUGE.

 

[Gingergrrl]

@beaker, I agree with you and was trying to explain that in my former post. In the US, some of it is simply that we are using different semantics and terms than the UK. The true CFS experts in the US use the CCC and ICC criteria and the patients that they diagnose and treat have PEM and all the "pure" symptoms. We (the patients and doctors) in the US are forced to use the horrible name CFS b/c that is the name and diagnostic ICD code given by the CDC. It is the name we must use for disability, insurance, etc. We cannot use the term ME in the US b/c it is not an official term here. But to imply that the patients in the US with CFS are less ill, is patently untrue.

ETA- The CFS specialists in the US are not pursuing any kind of psychological agenda and are horrified that this goes on.

 

[Min]

The initial post, a statement from the UK's 25% M.E. Group for the severely affected, addressed the increasingly appalling siuation in the UK.

No-one is suggesting that people in the US, where different terms are used, are less ill.

 

[Gingergrrl]

@Min Thank you for saying that and it means a lot.

 

[beaker]

The initial post, a statement from the UK's 25% M.E. Group for the severely affected, addressed the increasingly appalling siuation in the UK.

No-one is suggesting that people in the US, where different terms are used, are less ill.

The problem is, it's out there. We may know what you mean, but the general public and those doing google searches do not. I don't know what the solution is. Well I do { new name} but it seems impossible to implement at this point. Research research research is what is needed -- with a focus on the definitions and NOT on the labels.
I'm sorry things suck so bad in the UK.

 

[Chickadee9]

This has certainly been an interesting thread with a lot of good points made. Just let me come back to 2 of them.
I still worry that the desire to work with a better definition - which we all agree is an important objective - will slow down/delay/prevent important research if, as I think some argue, that "there is no point in doing research until we have this".

Second, Min has still not explained to me why s/he posted something from the 25% group that is 15 months old. Is there something new we should know about the CMRC? I actually looked up what I could find on the conference. There were no details of the speaker line-up but according to ME Research UK the 3 plenary sessions are on inflammation, infection and pain. No sign of anything psych but admittedly we don't know all the details yet. And Lipkin is coming over to speak at it.

 

[Min]

The point is that so-called reearch in the UK is being done on people with mild vaguely defined fatigue, much of it being done by Collaborative member Prof Peter White, and the results used to 'treat' people with myalgic encephalomyelitis, many of whom report being made much more ill as a result.


Chickadee9, I was not aware that there was a ban on posting anything 15 months old here, or that we had to justify to you anything we posted. I have only just come across the 25% Group's statement.

 

[Chickadee9]

The point is that so-called reearch in the UK is being done on people with mild vaguely defined fatigue, much of it being done by Collaborative member Prof Peter White, and the results used to 'treat' people with myalgic encephalomyelitis, many of whom report being made much more ill as a result.
My point is that that this WAS true but is no longer true...thankfully things have moved on. At least I hope they have.

Chickadee9, I was not aware that there was a ban on posting anything 15 months old here, or that we had to justify to you anything we posted. I have only just come across the 25% Group's statement.

I never mentioned anything about a ban. People usually put things up here because they think they are significant and others should be aware of them. As I said originally, I was curious that something so old was reposted. That often means there has been some development so I wondered what it was. That's all. I'm signing off from this thread now.

 

[Wildcat]

I think its very important indeed to be informed about why the long established charities the 25% Group, The Young peoples ME Trust ((Tymes Trust)
! nd Invest in ME have refused to sign up to the CMRC.

http://www.tymestrust.org/txt/alert201305meawarenessday.txt

The tymes trust statement on why it will not join the collaborative.

 

[Firestormm]

There has been a call out from the MRC for over a year now for new research applications. It is still there on their website. If we don't try and work on new initiatives and attract new researchers to apply to the MRC then the money that is available will not remain available and neither will there be any chance of it increasing.

 

[Wildcat]

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

 

[Wildcat]

Ayme, which supported the smile trial lightning process study (in favour of its medical advisor esther crawley and its president esther rantzen) isof course on board the CMRC.



But the Tymes trust, which has represented the very many families whose kids have been persecuted by the uk Cfs policy, by white and chalders policy andcresearch.... the tymes trust continue to represent kids with me.

 

[Wildcat]

Not a great deal has changed for kids with ME since the Tymes trust/BBC documentary in 1999 c which exposed the unlawful sectioning of kids with ME, and the wrongful child protection investigations which are stll going on, are out of control, and are only reportedon by Jane Colby and the Tymes Trust. Whilst AYME are totally in bed withbtheir medical advisorvEsther Crawley and her chronic fatigue research funding gravy train.

 

[Wildcat]

The millions given to Crawley and White by the MRC for psychosocial fatigue studies since the CMRC was formed gives us a clear view of the intentions of the MRC

 

[Sidereal]

In my humble opinion, bad research is worse than no research at all because once bad research gets published, it attains a halo of truth and can be quoted over and over again as gospel by proponents of the construct of chronic fatigue syndrome. These bogus studies then serve as the evidence base for terrible policymaking decisions, fatigue clinics, GET, denial of benefits, sectioning of patients in psychiatric hospitals etc. - pernicious outcomes all round for persons with the condition some of us refer to as ME (imperfect name, granted) which I believe is a disease of unknown aetiology characterised by inability to produce sufficient energy on demand which is made even worse by exertion.

For these reasons I think that any bona fide ME charity should have a zero tolerance approach to psychobabble which has not been the stance taken by the major ME/CFS charities in the UK.

I also don't believe the answer to this disease will be found by the MRC throwing money at some vaguely scientific sounding research proposals. It should be kept in mind that the vast majority of medical research in general is pure shit, designed not to uncover some pertinent truth but to keep researchers in jobs. While the amount of money spent on medical research has increased exponentially, very little concrete progress has been made in medicine in the last several decades.

 

[Min]

Scientists have been quite deliberately put off myalgic encephalomyelitis research by Wessely et al claiming, without ever supplying any evidence, that they have been harassed and issued with death threats by patients (the only person ever convicted of harassment of an ME researcher did not have myalgic encephalomyelitis). This has of course left the Wessely school of psychiatry to rake in all research funding for themselves. Nice one. Plus of course, the MRC has a history of turning down myalgic encephalomyelitis researchers such as Jonathan Kerr in favour of research into the psychology of mild fatigue. Patients with myalgic encephalomyelitis would have bern far better off without PACE FINE etc. We now have the results of White's GETSET to anticipate in horror.

The research situation has been deliberately engineered and blaming patients who no longer trust AfME, AYME and the MEA to work in their interests is nonsense. The charities have had years in which to speak out against what is going on, but have chosen not to. AfME were involved in PACE and have stated they see no reason to object to the SMILE trial of the Lightning Process on children.

(Quite how these charities can work in the Collaborative alongside the person partly responsible for Karina Hansen's incarceration , Peter White, is beyond me, or with a chair trialling LP on vulnerable physically ill children when one 13 year old has already tried to commit suicide as a result of the process)

It is naive to imagine that the MRC will do anything other than support another 30 years of psychobabble and cruelty from the psychiatric profession whilst generation after generation are lost to this horrible neurological illness. That is why I am supporting Invest in ME's research and not the Collaborative.

 

[Undisclosed]

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[Undisclosed]

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[Valentijn]

The research situation has been deliberately engineered and blaming patients who no longer trust AfME, AYME and the MEA to work in their interests is nonsense. The charities have had years in which to speak out against what is going on, but have chosen not to.

I agree with your other statements, but I haven't seen MEA supporting the psychobabble at all - did I miss something?

 

[Min]

I agree with your other statements, but I haven't seen MEA supporting the psychobabble at all - did I miss something?

No, but I haven't seen them speak out against it either as the charities who refuse to join the Collaborative with White and Crawley have done. Did I miss something?