"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

[Esther12]

Crawley will always find patients to involve in her "research", even if every M.E. sufferer in the UK boycotts her trials. She can just round up a load of teenagers whose parents have answered a questionnaire saying the kid isn't sleeping properly (teenagers - duh ) and call them M.E. patients instead.

I probably wasn't clear here.

When there's a chance for patient involvement, we want the best people possible to volunteer. But also, there should be a willingness to push against researchers' interersts and walk away if things do not go well. It's in researchers' interests to have a PAG that they can 'manage', advise them to avoid being publicly critical of research, etc.

I think that the CMRC has been bad for us, but I wonder if it would have gone better if the MEA had been clearer that it was willing to resign? eg: when Crawley smeared Tuller for producing 'libellous' blogs and Holgate responded by saying that she had the full support of the board? When you signal that they can get away with things like that, and continue to claim to have patient support, that's a bad thing - why wouldn't Crawley smear the MEA in the way she has this week, when they've shown her that their willing to let her get away with it? If researchers know that patients will do what is necessary to stay in the tent just to have their views listened to, that makes patients more manageable and reduces their power and influence.

 

[Jonathan Edwards]

http://www.potsuk.org/who_are_we

PoTSUK

"Dr Morwenna Opie-Moran, Trustee, Morwenna is a Clinical Psychologist based in London and specialising in anxiety and mood disorders. She has a special interest in maximising psychological well-being in the context of compromised physical health – an interest brought sharply into focus when she developed PoTS in 2012.

Professor Julia Newton is one of several Medical Advisers to PoSTUK;
Dr Phil Hammond is a Patron.

The meeting seems to be run by a 'British Heart Rhythm Society' that sounds remarkably similar to the kidney society Esther Crawley spoke at. It seems that since I retired quasi-commercial organisations like this have sprouted up as swap shops for private practitioners wanting to know how to make money out of treatments. This is not a bona fide scientific meeting. There used to be meeting generating companies in my time but this is altogether harder sell I think. What a motly crowd of bedfellows.

 

[Jonathan Edwards]

Well, my apologies then as I read your post as being somewhat dismissive of the petition.

I wish I could share your optimism in the level of influence of patients "on the inside". If researchers truly want patient "buy-in" to their efforts, not only do they need to include something like a PAG but also allow that PAG to communicate as freely as possible to the wider patient community, otherwise, rightly or wrongly, a large part of the community will view them as mere window dressing, added into a project to make it look pretty.

Yes, I thought we might have had crossed wires. I tried to urge people to vote for OMEGA.

There are reasons why people communicate carefully through confidential channels - and they do so regularly. I had such an email just now. Part of being in a position to communicate is often an agreement not to go public and apart from anything you do not get invited again if you do, very often.

That's news to me. Can you elaborate please?

No, but I have just discovered even I did not know how far they were casting their net. Us official reviewers have to be protected by anonymity - because otherwise they might be open to abuse by disgruntled scientists. That has always been known to be necessary; scientists can get very abusive when peeved.

 

[AndyPR]

About BHRS
British Heart Rhythm Society (formerly known as Heart Rhythm UK) is dedicated to improving all aspects of arrhythmia care and electrical device based therapies along with acting as a unifying focus for those professionals involved.

The society was formed in 2005 by the amalgamation of the British Pacing and Electrophysiology Group (BPEG), the British Association of Arrhythmia Nurses (BANA) and the UK Interventional Electrophysiology Society (UKICES).

It is affiliated to Arrhythmia Alliance (AA) and British Cardiovascular Society (BCS).

British Heart Rhythm Society has close working relationships with Arrhythmia Alliance representing patient groups, medical regulatory and advisory bodies (MHRA) and with colleagues in the medical equipment and device manufacturing industries (ABHI).

http://www.bhrs.com/about-bhrs

 

[Jonathan Edwards]

why wouldn't Crawley smear the MEA in the way she has this week, when they've shown her that their willing to let her get away with it? If researchers know that patients will do what is necessary to stay in the tent just to have their views listened to, that makes patients more manageable and reduces their power and influence.

I personally think Charles should be allowed to play things his way. The other way of looking at it is that the point in time when the other side look as if they are gaily cooking their own goose it may come in handy to still be there to kindly ladle on the fat. Charles had to object to SMILE when he did. Leaving six months ago would not have prevented him being slandered. Presumably he will be able to raise the issue at the next meeting. There is something in the CMRC rules about not being abusive to...

 

[Jonathan Edwards]

'with colleagues in the medical equipment and device manufacturing industries (ABHI).'

Otherwise known as the free lunch providers.

 

[Jonathan Edwards]

I've just found 10 quacking rubber ducks for £2.29 including postage on ebay, what a wonderful gift idea for someone...

Charles could drop them off in that tent he goes in.

 

[BurnA]

Part of being in a position to communicate is often an agreement not to go public and apart from anything you do not get invited again if you do, very often

Does that mean Stephen Holgate won't be writing to you again ?

 

[lilpink]

No, but I have just discovered even I did not know how far they were casting their net. Us official reviewers have to be protected by anonymity - because otherwise they might be open to abuse by disgruntled scientists. That has always been known to be necessary; scientists can get very abusive when peeved.

Curiouser and curiouser....

 

[Jonathan Edwards]

Does that mean Stephen Holgate won't be writing to you again ?

I am not sure he ever wrote to me except to say he was puzzled about some peeving thing someone had said about MEGA.

 

[lilpink]

https://twitter.com/i/web/status/912658401834016769

 

[BS3boy]

Hi

Nice to see you on the forum.

My comment about 'stooge' was not directed at you on a personal level but as a general description of what happens when their is involvement with psychiatrists and BPS. Sorry if I caused you offence - I am really angry at this MEGA/CMRC shenanigans. You do know that MEGA and CMRC are the brainchild of Simon Wessely and Peter White? I cannot understand how anyone with ME in good faith can collaborate with them and Esther Crawley.

Patient involvement are there to be used for the BPS purposes and will be ignored as history has shown.

Have you read the history and politics of ME? Please read the MEActionUK articles (link in my signature). Once you have read these you will understand that patients are used for the BPS own ends and will have no meaningful input or ability to change things for the better. It is very naive to think given the 30 year history that things will change. To think that Wessely/White/Crawely leopard will change its spots is deluded.

This MEGA will be a disaster for the patient community. Please read up about MEGA and the OMEGA petition.

The fact that you were prohibited from criticising past trials shows everything about how much patient involvement there will be. Why are you silenced. That is unacceptable. If you cannot openly criticise and learn from the biggest science scandal the PACE trial then it means they will REPEAT those same mistakes (or in actual fact repeat the fraud).

You say:


THAT IS COMPLETELY WRONG. I am surprised you make this statement . Action for ME were fully involved throughout with the PACE trial from 2004-2011. We still got the PACE trial fraud. I am really surprised you are claiming this as it completely rewrites history!!!!

In fact patients being involved give them credibility and authority for them to do the "research" and get funding. If we speak with one voice and don't not collaborate then they cannot claim that patients support this research fund. However as with PACE when AFME collaborated and colluded with the PACE trial psychs they actively harmed the whole worldwide ME community.

You say "no patient voice - no influence". In fact if we are united as ME patients against BPS psych bad science then the "no patient voice - no funding, no bad research, no fraudulent science".



That can be proved as wrong. Esther Crawley has routinely shown she defines PEM as something else.
I am really surprised you claim that no-one on MEGA will not have properly defined PEM. in the PACE trial they could not even define ME properly.

I really think you should learn about the history of the politics of ME.

There is absolutely no need for MEGA and the CMRC as it is directly been set up to undermine the great work of InvestinME biomedical research and also undermine the London School of Hygiene Tropical Medicine UCL Biobank. That is its purpose.

The fact that the people involved with CMRC/MEGA cannot even define ME 50 years after it was recognised by the WHO show that the aim is to obfuscate the illness as they have done since the 1980s.

In my opinion anyone who collaborates with them is harming the prospects of biomedical research and treatments and is actively or unwittingly harming and causing needless and unnecessary suffering for everyone with ME.

well yogi, you failed earlier (calling me a "stooge"), but well done, you've now completely alienated me. if that was your intention, you succeeded. Just what the ME world needs - more alienation.

FYI I OWN a copy of "science politics & ME", have read it, know about the history of the illness very well, having been immersed in it since 1997 when I fell desperately unwell with post viral fat. syndrome (now resolved)

I am someone who is close to AfME - they even filmed me yesterday, for a promo they're doing. as i'm recovered, in the film, I "fake" having ME. perhaps you'd like to tear several strips off me for that as well?

i'm well. you try to help. and you get alienated. Not a great deal, is it? why do I do it? well as I said, having some influence is probably more useful to research than not being listened to by anyone.

AfME's chief exec at the time (Peter Spencer?) of PACE resigned, because they truly believed PACE would show pacing was best & CBT/ GET was harmful.

MOds: I'm new here, but think i'm not exactly pleased with this sort of response. I have no agenda & am hoping to help people with this terrible illness. Have I come to the wrong place?

 

[BS3boy]

I suspect one of the most important things will end up sampling the same people over time and looking how blood samples change with symptoms. That may prove easier than large scale studies if there is a lot of variation in the population.

Agreed. Also interesting to sample people in different states within stages, eg. relapse. I saw a study recently that showed a 24 hour delay in certain areas of inflammation following exertion . THis is the sort of science they need to study, to find physiological answers.

 

[daisybell]

@BS3boy please don't rush to leave....
People here have strong opinions. We disagree often - and usually can agree to disagree.
I may not agree with everything you have done or do, but it's very interesting hearing your reasons!

 

[Michelle]

It can be difficult to remember that two people can look at the same history and situation and come to very different conclusions. That may mean one person is wrong and another is right (or even both are wrong or both are right), but it doesn't mean one is bad or evil or a stooge or whatever. It means simply we each have a unique perspective. We can disagree -- sometimes vehemently so -- with that position and attack that position. That is very different from attacking the person.

@BS3boy: I'm really glad to hear you manage to recover from the hell that is ME/CFS. Of the tiny group who do recover, most flee and never look back. The fact that you have continued to advocate for those of us left behind says a great deal about your character. Thank you.

As for @charles shepherd collaborating with "The Enemy", we need people both in AND out of the tent (which I think is what @Jonathan Edwards is saying?). I think Dr. Shepherd has done an amazing job of maintaining his integrity and that of the ME Association. I have seen no evidence that he has backed down on his criticism of the BPS group or his advocacy of the very real and severe physiological affects of ME. Nor have I seen Crawley & Co. reference the ME Association to show she has their support (if anything, quite the opposite), so I fail to see what sort of fig leaf ME Association's involvement in CMRC gives them. I do understand that others vehemently disagree with this and I respect that they disagree. But I hope they can respect that others see this differently but care just as much about good science for the organic, physiological hell that is ME.

 

[Sean]

I personally think Charles should be allowed to play things his way.

As for @charles shepherd collaborating with "The Enemy", we need people both in AND out of the tent (which I think is what @Jonathan Edwards is saying?). I think Dr. Shepherd has done an amazing job of maintaining his integrity and that of the ME Association. I have seen no evidence that he has backed down on his criticism of the BPS group or his advocacy of the very real and severe physiological affects of ME.

Agree.

 

[Esther12]

As for @charles shepherd collaborating with "The Enemy", we need people both in AND out of the tent (which I think is what @Jonathan Edwards is saying?). I think Dr. Shepherd has done an amazing job of maintaining his integrity and that of the ME Association. I have seen no evidence that he has backed down on his criticism of the BPS group or his advocacy of the very real and severe physiological affects of ME. Nor have I seen Crawley & Co. reference the ME Association to show she has their support (if anything, quite the opposite), so I fail to see what sort of fig leaf ME Association's involvement in CMRC gives them. I do understand that others vehemently disagree with this and I respect that they disagree. But I hope they can respect that others see this differently but care just as much about good science for the organic, physiological hell that is ME.

It may have changed now, but academics I had attempted to raise concerns about PACE with in the past had referrred to the CMRC, and White and Crawley's roles within it, as reason to think that this was a non-issue. (Hard to see how anyone could claim that now). It's impossible for anyone to be certain, but I do think that the CMRC helped strengthen Crawley's position, and played a role in her recent success with funding (MAGENTA, FITNET-NHS, etc), and perhaps her being made a Professor.

Some people can be overly critical ofthe MEA and Charles Shepherd, and I'm grateful for a lot of the work he does, but I think that he has got things wrong on the CMRC (as did I, voting in favor the the MEA joining when it was first announced). I think it would have been best to pull out of the CMRC when ME Research UK did, in response to Crawley's smearing of patients and Tuller, and that this would have sent an effective message to the UK research establishment that things were going to have to change dramatically.

I relaise thatthere may be things happening behind the scenes that I am not aware of, but it's been four years with the CMRC now. If things were going great behind the scenes then surely we'd have noticed something by now?

AfME's chief exec at the time (Peter Spencer?) of PACE resigned, because they truly believed PACE would show pacing was best & CBT/ GET was harmful.

[I've not followed your dispute with Yogi, but...] And what lessons have they learnt from this? They've still failed to speak out about the way results from PACE were spun, they made a submission to the ICO which helped PACE avoid releasing importnat information and led to a patient being unfairly condemned for making a 'vexatious' request, they seem to view on-going criticism of PACE as an embarassment they want to disappear... a competent charity involved in such a scandal would have taken the time to go through the details and examine what they got wrong. I've seen no sign that Action for ME have done anything like this.

 

[Forbin]

The other way of looking at it is that the point in time when the other side look as if they are gaily cooking their own goose it may come in handy to still be there to kindly ladle on the fat.

 

[Jonathan Edwards]

I relaise that there may be things happening behind the scenes that I am not aware of, but it's been four years with the CMRC now. If things were going great behind the scenes then surely we'd have noticed something by now?

MEGA has been turned down

White has left

MEGA researchers have seen the opportunity to work with the real Biobank

NICE is reviewing guidelines

Cochrane is getting peer review from new sources

Critiques of PACE have been published in peer reviewed journals

BBC and newspaper journalists have come to understand that the SMC is phoney

The Times has written sensibly about PACE critique

The IOM has removed GET from guidelines

The medical academic community has become aware of the problem

The CMRC has come to be seen by the international research community as an irrelevant irritation

MERUK have left and even AfME have tried to indicate a shift in position, despite tied hands


Not sure what more you would expect to notice by now?

 

[Hutan]

Cochrane is getting peer review from new sources

This is a game-changer, I'm very happy. Organisations all around the world refer to Cochrane when deciding on the standard treatment for ME/CFS and it seems to be impossible to make headway with an argument that Cochrane is wrong.

I look forward to hearing more in due course.