United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

Don't worry about the questions, it helps me get things clearer in my own mind (my cognitive function is poor), and yes, you're spot on, I don't object in theory, but I do think it a waste of time and money to test hypotheses of ME as a functional disorder.

 

Thanks Jo, all clear now. Sympathies about cognitive problems, am the same hence many questions!

 

I'm concerned about this too

 

Thanks @Melanie. Really need to stop typing today but will try and come back to this replying properly.

 

Your analogy reminds me of a comment on David Tuller's blog about the CMRC changes, @NelliePledge.
pinklil wrote, "I think the CMRC changes are simply a case of rearranging the deckchairs on the Titantic." http://disq.us/p/1qq6hyr

Seriously though, Stephen Holgate seems to have been quite proactive in the role of CMRC Chair and capable of steering the ship in the same direction without the unruly crew member at his side. One of his early acts as CMRC Chair was to email Simon Wessely for advice, and he shared Keith Geraghty's private emails about the PACE trial with Peter White. He has many years of involvement with ME research and of working with the CMRC member ME charities, including on the MRC CFS/ME Expert Group, the group that preceded the formation of the CMRC.

 

https://www.s4me.info/threads/neura...tis-chronic-fatigue-syndrome-cook-light.2863/

 

For me I don't really care if they test to see if ME is caused by whistling while you walk, so long as the trial is scrupulously well designed and run, and 100% honestly published. Provided those criteria are met, then whatever the truth is then it will be good. And in the case of the functional disorder stuff, would prove once and for all it's a load of rubbish.

 

It's the definition of ME that worries me. If we continue with yet more studies with 'fatigued' patients who do not have clearly defined ME, then we will never get anywhere with research in this country.

 

That is, to my mind, part of being "scrupulously well designed ...".

 

The question is, are 'Functional Syndromes' (or whatever name is used) well enough defined for any study using them to meet the definition of "scrupulously well designed". If all it takes is "We can find no medical explanation for this symptom" then I say not.

 

Trying not to be overly dramatic but this is what it feels like to me. Whilst scientists in our community have said that their conversations with him have meant they believe he is looking at things in a different way that are better for us, if he is still saying the same old stuff in public then that is what most people are going to hear. It seems dangerous to think that his views are changing when he isn't publicly supporting this (let me know if it's wrong and he has done this).
If one BPS supporter has been ousted it would seem reasonable to assume that there may be another one lined up to sneak in.
This comes from the paranoid side of me. The scientific side agrees with our scientists but the history in this case seems to be quite weighted and worth remembering.

 

AfME seem to be taking a move from the BPS playbook and are redefining "defamatory" to suit their purposes. A statement is never defamatory if it's true, and opinions about someone would also not be defamation.

Activism from ME patients has hostile organizations like the CMRC and AfME under threat of complete destruction. They are at the point where they have no choice but to evolve if they want to survive.

It's progress, but it's not victory. These changes are likely not ones they particularly wanted to make, and some parties will certainly be dragging their feet and trying to sneak in more BPS involvement. Patients vociferously opposing their actions and statements has resulted in this progress, and it may result in more progress, or at least a prevent of back-sliding. But only if patients continue to demand meaningful change.

Lanced-boil pudding ... AfME's signature dish, perhaps?

It would be great if psychobabblers could learn something from the real scientists. But if they were capable of doing so, they would have abandoned their preposterous theories decades ago. An alliance with BACME is only bad news.

The use of CFS/ME is still a major problem. Someone correctly pointed out that switching terminology to something more acceptable to patients doesn't mean they're sincere, but the ongoing use of CFS/ME by an organization which knows better is sincerely oppositional to the expressed wishes of patients.

The CMRC should not be attempting to recreate the IOM report in their own style. They don't have the funding or the skillset at this point in time. It also doesn't make sense to redo something which is already excellent - we'd probably end up with the BPS version of a bad remake of an award-winning movie But it's good that they're acknowledging that the IOM report is influential, and we should push them hard to accept it officially, instead of just giving it lip service and attempting to replace it.

Their values statement regarding sharing data is extremely heartening to see. But again, we have to make sure there's no small print regarding "bona fide" researchers or others buddies-only clauses.

 

Good reminder of how terrible the man has been for us. He has got to go if they really want to earn back the patients trust.

 

Following on valentjin
Regarding the report thing,
1) could this mean that the report will be "waited on," before action from funding and policy makers?
2) is it necessary- can't uk just look and learn from the IOM report and CMRC commissioned funding report
3) can we trust uk to do as a good a job. The main success of the IOM report and SEID was the recognition of PEM as central , and they were moving away from Fukuda. They said it was unequivocally physical, gave it the name systemic disease etc. In the uk the push has been for broadest umbrellas which would then have several subgroups , the BPS inclusion, FND and supposed brain origins. The BMJ CFS info is now quite good except they still sell CBT get to some degree

Following on from David tuller, I can't see CFS being dropped or me/CFS being adopted. I don't know if uk is ready to move away from the chronic fatigue syndrome umbrella yet. For me personally the most we will get is a refinement of get/CBT recommendations and injections of cash to try to subgroup CFS. Progress in America will then just gradually change everything.

 

I know, this is what disgusts me, it really does. It epitomises the arrogance of a profession that says "If we don't have an answer, then it must be your fault. Oh and by the way, that gets us a lot of brownie points because the NHS can then pretend you don't have a real problem, so won't have to spend money trying to make you better again".

 

Some progress already, a presentation to the MRC Population and systems medicine board yesterday clearly went well:

https://twitter.com/user/status/972486996714311682

 

I agree that it sounds positive and I hope it is productive. However, this does seem to be a pretty weird organisation. I think I probably still belong to it. I find that the 'Board' have presented 'plans' that I know absolutely nothing of, to the MRC, presumably in the hope that some members of that said Board will get easy access to funds. That somehow seems to entail a 'new platform' whatever that might mean.

But not a whisper of whether or not the people already doing good research have been included in this platform or 'consolidation'. And it does not look as if the patients have been consulted about these new unknown plans.

Chris Ponting seems a good guy to be involved but this sort of costing up approach has never been something I would want to have anything to do with. Too many people want a slice of the pie and the end result is usually a few crumbs at best.

 

I guess that when someone is dropped into the middle of a big mess that needs sorting out, there are going to be some pretty odd goings on during the transition. Being as Chris Ponting seems to be good, let's hope things come out the other side OK.

 

I agree it’s positive. The CMRC has already said that they are looking for an open platform, which would be open to all comers. So it’s not a fund grab by the board. But yes, the pie has to be big enough to produce decent slices. That would mean at least an order of magnitude more money than anything in the MRC has come up with for biomed research to date (previously £1.6m).

Added: although they haven’t consulted about setting up a platform, as far as I know, they are consulting with patients about future priorities for the CMRC. Initially that will be with the patient group it set up, but they’re looking to consult more widely - according to the minutes. Those priorities will presumably influence which particular areas to research. Hopefully more details will emerge, but I think the situation is currently very fluid.