Time for ME Assoc to quit the UK Research Collaborative?

[Wildcat]

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The ME Association writes to the SMC to complain/request correction of their statements and activities in press releases, etc. What of the other CMRC members? Are they aware of the SMC behaviour? Isn't Stephen Holgate concerned about the whole affair? The SMC is on the inside of the Collaborative, yet has acted, and continues to act against the interests of promoting and funding (and reporting) ME bioresearch.
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[nasim marie jafry]

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@nasim marie jafry wrote: "having for the first time just seen a clip of a news prog in 1996 when Simon Wessely told the UK that ME was now known as CFS and had a psychological factor, I am amazed we have any biomedical initiatives at all.'


With the developments in ME bioresearch of the last 20 years, I am amazed that the media headlines and stories are still 'ME just needs exercise and psychotherapy'. The narrative has not changed in the 20 years since 1996..
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It's particularly bizarre for me, this UK reverse gear into psychiatry, as my initial treatments when severely ill under Behan in mid 80s were plasma exchange, immunosuppression, Imunovir clinical trial etc - it beggars belief that you can just go on TV and apparently on a whim banish a neuroimmune illness. Although I know of course the ME narrative changed to CFS in 90s, it is so utterly galling to see it on the news like that! Glad I didn't see it at time!

 

[Tyto alba]

Did the SMC have anything to do with the newspaper articles reporting the findings of Julia Newton's muscle biopsy work?

 

[Wildcat]

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I think Newcastle University sent out its own press release direct. Or it might have been that NU sent their own press release out on the white blood cells research on children? Or both. Anyone remember?

 

[Dx Revision Watch]

For those not familiar with the document downloadable at:

https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf

Fiona Fox, referenced in the document, is Chief Executive of the SMC.


There is a reference under "Action Points" to Support4rs.

If readers are unfamiliar with this organisation, their website is here:

http://www.support4rs.com/about-us/

http://www.support4rs.com/about-us/strategic-relationships/


Under "Harassment"

- Harassment is most damaging in the form of vexatious FOIs.
- Complaints are also causing problems. Researchers are still dealing with complaints about them to the GMC.
- House of Lords Debates on CFS/ME can result in Parliamentary Questions which often require detailed responses​

Since when did the Parliamentary process of holding Debates in the House of Lords or the tabling of Written Questions by Members of the House of Lords or by MPs cease to be part of the democratic process?

 

[Dx Revision Watch]

And on the issue of FOIs:

The Information Commissioner’s Office (ICO) has ordered Queen Mary University of London to release anonymized PACE trial data to an unnamed complainant. Queen Mary has 28 days to appeal the decision...

http://www.meaction.net/2015/11/06/government-orders-release-of-pace-trial-data/

 

[charles shepherd]

Did the SMC have anything to do with the newspaper articles reporting the findings of Julia Newton's muscle biopsy work?

Yes, they arranged some positive and helpful coverage of Julia Newton's work, including a press conference, when the RC was launched in April 2013:

http://www.meassociation.org.uk/201...ope-for-me-sufferers-the-times-23-april-2013/

And when Ian Lipkin came one last year to give a keynote address to the 2014 RC conference in Bristol they arranged a press conference for him to talk in London. There was some other big health item broke on the day - cannot remember what it was now - so there was very poor attendance…...

So it's not all bad…….

 

[Esther12]

Something which is terrible can still not be all bad. The SMC are terrible for CFS patients. I think it would be better to avoid involving them with any aspect of CFS reporting.

If PACE starts to fall, it needs to be made clear what an important role the SMC played in misrepresenting the trial's results to the public.

 

[K22]

For me it's less being in or out of the CMRC & working with the establishment & more about what is actually asked by the charities regarding the name , criteria , numbers affected & funding. On these matters the CMRC & MRc/NIH are just doing what the establishment prefers ie CFS /ME, anything goes criteria , 600,000+ Reported affected, low funded fatigue research with Afaics no resistance.

Crawley, the unpopular chair is still getting the most (large) UK funds to do naf fatigue studies using the weak NICE criteria whilst ME & defining features & the severely ill are hardly even recognised and all yet we see acquiescence or promotion by the Inside charities on such issues. If you're going to be inside the tent then a stronger pro M.E, pro severe M.E, pro higher funding (including the ring fening MEA used to call for but now won't) , pro uniformity on stricter criteria voice etc is desirable. We have had so little funds from the state and that is directly why we have had little medical progress. I can't get excited about the odd few grand as if its enough it isn't &?don't understand why the Gibson report was not used and their recommendations taken up as charity demands.

I think there's many who aren't MEA members for precisely the reason of them being seen as too meek to the wishes and direction of an establishment & ineffectual in making real progress. Getting somewhere in the end isnt the same as over 30 years making decent progress& saving lives of those desperately afflicted from a young age. Those on here at or whove recovered to a reasonable level might be ok with that progress, the severe, believe me, are going almost insane in despair.

I never dreamt in the 90s that we would be where we are regarding name, criteria, medical education, severe services & most of all lack of research investment to making progress towards treatments. I know Charles is happy where they have reached 7-8 years after the formation of the MRC expert group culminating in a yearly conference with the CMRC , I'm not, as I still see very little severe m.e interest or hope of treatment. The severe didn't even get their own section at the research collaborative conference and excuses were made, again,, then we say oh people aren't interested in severe M,E, - hardly surprising when we are invisibilised. What do the severe have from the mrc research funds, nothing? .

Because I want a more radical and assertive call for departure from the big tent UK CFS approach I actually think that other charities such as IIME & the 25% group would possibly help the situation by joining the CMRC but that possibly compromises them as their logos will be used as a sign of endorsement of the MRC approach to CFS which I certainly don't think they do. 25% group probably havent the resources to attend meetings but only they have the severe at the fore of their minds


Carmine Pariante was brought onto the CMRC board probably to ensure that vital psychiatrist representation after White quit. Mark Edwards is there also. When you have Ed Sykes of SMC teaming up with AFME "CFS& ME are the same " CEO handling the presentation side of things i am afraid i don't feel in safe hands.

The past week in the press shows ME is not recognised as a serious multi system disease as it is now being in the usa, we are miles behind - we have behaviourally managed cfs in psych territory, regardless of what topics are included in a small yearly conference . What i want of any charity is to always push for that recognition and i don't agree with the MEA or AFME position of accepting the CMRC position of broad cfs/me umbrellas, big tent views and a pragmatic approach to criteria until research comes through in some years time.

The MRC, even if they do want to have lots of research applications (or do they want to keep us low funded and unexplained?) aren't going to get them for M.E in the current CFS climate (journals, medical lit, medical education, OT led rehab services, NICE guidelines, press coverage) but they are doing nothing except a conference to about this. Better defining the illness, making it a more strict criteria & preferably a name change, along with ring fenced money could improve things rapidly but they won't as their vision & ways aren't focused on getting help quickest to the very sick & the charlottes ok that.

#As an aside I also think the CMRC supporting charities would do well to merge and also to call more for volunteers so the MEA is less of the dr Shepherd association where any criticism is easily taken very personally but isn't meant so.

 

[RustyJ]

Carmine Pariante was brought onto the CMRC board probably to ensure that vital psychiatrist representation after White quit. Mark Edwards is there also. When you have Ed Sykes of SMC teaming up with AFME "CFS& ME are the same " CEO handling the presentation side of things i am afraid i don't feel in safe hands.

I agree. It is difficult to see how anyone could argue that the psychiatric presence has diminished in the CMRC. Or for that matter why it would mysteriously go away.

 

[RustyJ]

MEA can still criticize PACE and advocate for biomedical research from outside the CMRC. In fact it could play a leading role. So these are not arguments for staying.

CMRC could have been ME/CFS savior world-wide - it was a tremendous opportunity to make real progress, not diddle around with a shell game of spot the non-psychiatry research.

 

[SOC]

Boycotting only works if the organization is benefitting (usually financially) from your participation. They suffer from your lack of participation, which (hopefully) makes your point. When it's to their advantage for you to be gone, which is the case of with CMRC and supporters of the biomedical view of ME, then it's foolish to walk out. All you do is give them the entire stage to themselves and let them control the message. I imagine most involved in the CMRC would love to see the MEA not involved. Things would go more their way... which is why we don't want the MEA to quit.

 

[RustyJ]

Boycotting only works if the organization is benefitting (usually financially) from your participation. They suffer from your lack of participation, which (hopefully) makes your point. When it's to their advantage for you to be gone, which is the case of with CMRC and supporters of the biomedical view of ME, then it's foolish to walk out. All you do is give them the entire stage to themselves and let them control the message. I imagine most involved in the CMRC would love to see the MEA not involved. Things would go more their way... which is why we don't want the MEA to quit.

Why would the CMRC want the MEA gone? One very strong line of discussion here is that the MEA is not actually moderating any of the CMRC's decision-making processes, but rather contributing to them, in a way that is detrimental to patients, and misleading.

 

[RustyJ]

There has been some reference to the CMRC shifting its focus from psychiatric to biomedical research. At present this debate is very subjective, with time being the decider.

What is not so clouded is the visibly lack-lustre approach of the CMRC towards biomedical research, when compared to the resources gifted to the authors of the PACE trial, many of whom have deep associations with the CMRC.

PACE and its treatment modalities have been taken up by governments around the world, funded with bottomless pockets, garnered scientific consensus, constructed a 'rigorous scientific platform' to underscore illness definitions, underscored social programs including national treatment centres, and importantly, consigned patients as pariahs.

If even a moderate fraction of the planning and £5m pounds that was gifted to PACE was channeled into a rational long-term strategy for getting to bottom of this illness we would have had, if not a complete resolution of cause and good treatment options, then perhaps more compassionate social support.

The CMRC is a failure. It does not have the will to come up with answers.

 

[SOC]

Why would the CMRC want the MEA gone? One very strong line of discussion here is that the MEA is not actually moderating any of the CMRC's decision-making processes, but rather contributing to them, in a way that is detrimental to patients, and misleading.

Because they could get on with their BPS nonsense with no interference whatsoever. One could argue that the MEA isn't doing as much as it could to modify the CMRC's decision-making processes, but at least they're doing something. That's better than letting the BPS folks have free rein while giving the impression that there is no other point of view.

The political minefield of ME in the UK is almost, if not completely, impossible to navigate. There is no perfect and safe path through it. Many non-ideal situations exist in order for people and organization trying to help us to function at all. We are in the disgusting position of beggars can't be choosers.

I'm not fond of MEA's bedfellows, either. Unfortunately, there's only one bed in the UK right now, so better to be in it than out in the cold.

 

[SOC]

The CMRC is a failure. It does not have the will to come up with answers.

Not arguing that point. The issue is whether it would be even worse if there wasn't at least a tiny moderating voice in the organization. Is the MEA making the CMRC better? I'm not convinced it is. Is it stopping the CMRC from being even worse than it is? Probably. That may be the best that can be managed at present.

 

[RustyJ]

Because they could get on with their BPS nonsense with no interference whatsoever. One could argue that the MEA isn't doing as much as it could to modify the CMRC's decision-making processes, but at least they're doing something. That's better than letting the BPS folks have free rein while giving the impression that there is no other point of view.

The political minefield of ME in the UK is almost, if not completely, impossible to navigate. There is no perfect and safe path through it. Many non-ideal situations exist in order for people and organization trying to help us to function at all. We are in the disgusting position of beggars can't be choosers.

I'm not fond of MEA's bedfellows, either. Unfortunately, there's only one bed in the UK right now, so better to be in it than out in the cold.

The MEA is not doing anything to moderate the CMRC's behavior. They have raised objections in some instances, but they have not moderated. Please read this: https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf

 

[SOC]

The MEA is not doing anything to moderate the CMRC's behavior. They have raised objections in some instances, but they have not moderated. Please read this: https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf

Whether any moderation has happened is to some extent a matter of opinion. The level of moderation is apparently unsatisfying to you. It is to me, also. That doesn't mean it's non-existent. But at least the MEA is raising objections. Who would be doing that if MEA wasn't there? No one. Just raising objections moderates the headlong race down the BPS road, even if only a tiny amount. Better than nothing, which is what we would have if MEA wasn't there.

 

[RustyJ]

Whether any moderation has happened is to some extent a matter of opinion. The level of moderation is apparently unsatisfying to you. It is to me, also. That doesn't mean it's non-existent. But at least the MEA is raising objections. Who would be doing that if MEA wasn't there? No one. Just raising objections moderates the headlong race down the BPS road, even if only a tiny amount. Better than nothing, which is what we would have if MEA wasn't there.

It appears most of the decision making bypasses the MEA, as noted in the document above.

The MEA can still raise objections, arguably more effectively from outside the CMRC, because it would be unencumbered with the internal policies of the body and less tainted by notions that it is simply playing 'good cop'.

Regardless, as an operational failure when compared to PACE, the CMRC is not the way forward.

 

[K22]

The Gibson inquiry concluded in 2007 concluded we should have a well funded earnest research strategy with £11m ring fenced from the MRC. That was our due after the PACE & FINE research. The Gibson inquiry was made up of parliamentarians & was a substantial review in UK. 8 years on did we get anything like this? No. Are there criticisms from our charities over that? No , they all totally promote the CMRC& MRC & Holgate.

It seems to me charities have been effectively taken on side by having a some establishment set up, a semblance of respectable channels being worked through and a few research projects funded.

The CMRC, Like the PACE trial, NEEDS the validation of charities working with them. I disagree that they would want the MEA to leave, they love having the charities there, putting on the logos in their self affirming bubble advert they use everywhere. It's saying look what we are doing (yes it is slow mo& Negligible) we have support from patient groups and having charities in the tent has made them much less critical & demanding than they were before, if you read older literature.

To me the CMRC is the patient appeasing biomedical
arm of the establishment approach to the illness dressed up to look big & meaning business but so far since 2007, progress and funds have been slow & low. We aren't being told how it's difficult to make progress for ME by the ME charities (what's m.e anyway?) or seeing tough negotiations , we are being told how wonderful it all is. It doesn't feel wonderful to me in bed.