Petition: Opposing MEGA

[worldbackwards]

And therein lies @worldbackwards ..

I can only relate my own (thankfully short-lived) experience at a CFS/ME clinic, in which I was given information on PACING and GET; the two constructs used interchangeably, and I was not convinced they were any the wiser as to which was which at that time - 2011?

Likewise, I suspect there was/is no agreement on what SMC means in practice, and so this cannot/could not be standardised either ..

No one really knows what GET is anymore. When I had it, it meant pushing through symptoms and it was clear that anything I said about them as a patient was deemed to be suspect and the product of a fear of either activity or the normal results of deconditioning. Which led to a good deal of pain and some deterioration of symptoms, not that anyone cared much.

But if we look at the article in The Observer earlier this year, we find Peter White practicing a GET that looks much like a version of pacing, where patient setbacks are validated and, apparently, patients can set their rate of progress to some degree, although it also seems clear that improvement, and indeed recovery, are taken as a given and I'd sincerely doubt that doctors weren't insidiously trying to force the pace one way or another. Interestingly, this case study dates from before White telling the NICE GDG that patients shouldn't have disability aids because it only encourages their delusions. Which of these are we talking about when we discuss GET? Does anyone know?

As James said earlier, the reality of Pacing is that patients should have autonomy, particularly in terms of assessing whether the effects of activity are tolerable or are reason to curtail it. It's about control but of course that shouldn't preclude increases in activity if possible, although APT in PACE seems to have been constructed specifically to stop patients moving forward. It's entirely possible that this is being offered under the branding of Graded Exercise/Activity for patients who are well enough to move on, alongside pragmatic advice to patients who will have to sit tight, and I've heard of centres operating along these lines. I wouldn't be averse to that happening, and there were times where I could have used some help from someone who knew what they were talking about, something ranking up there with hen's teeth in the NHS in my experience.

But the current situation seems ludicrous. One wonders how open a secret this is; it seems quite bizarre that better quality care has to masquerade under a label which is anathema to many patients. Could it really be possible that the powers that be don't know about the differences in approach, especially those who make it their business to root out "unsound practices"? And James is also right that a change of guard can quickly undo any good work that's been going on and leave patients marooned and potentially in danger. But I suspect that to put this on an official footing would basically be giving the green light to saying, "yes, this really is just a holding strategy", rather than being able to call it "treatment" and make spurious claims of "recovery". And we couldn't have that.

 

[trishrhymes]

If the MRC really wants to fund good biomedical research that could start almost immediately, why not get the good biomed researchers already lined up for MEGA like Chris Ponting to put in a bid to do their work using the existing biobank that @charles shepherd is involved with.

I think the fact that the MEGA group want to re-invent the wheel is all about the machinations of Crawley et al, and nothing to do with real science.

Also perhaps they are swept along by the ideal of a mega sized genetic study that would need lots of patients to find the fine detail. Surely this would be best done by international cooperation, since the genomics can be carried out anywhere and all put on a central database. I'm sure other researchers are collecting genetic data already.

 

[Jan]

@charles shepherd Is there any reason why MEGA could not go ahead without Crawley? It's blindingly obvious that patients have no trust in her whatsoever, or any confidence in her as an 'expert'. She is not even interested enough in the illness to bother attending conferences and has dismissed all the recent developments.

Do you really think she can be trusted not to use all that data against us?

Back to my other point, I presume the CMRC have so far achieved absolutely nothing? Are the CMRC responsible for all the behavioral studies? Is that their sole achievement?

Are you not concerned that all the applications for biomedical research are being turned down?

 

[Barry53]

Perfectly valid question

I'm sorry but I cannot prove the clarification you require

I am happy to add this to my list of questions for the planning group

CS

Yes please Charles. Could you please include as part of the question, whether data will be released whenever any results are published. My fear is that the trial will likely last years, but that interim results may prove highly influential re NICE etc, with no way of independent review until the whole trial has been concluded. My feeling is that for any clinical study/trial, results-release and data-release should be treated as matched pairs, never one without the other. Many thanks.

 

[Jo Best]

The Opposing MEGA counter-petition has been open for one month today - https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[Jo Best]

I know it's 10pm again and I'm logging off again now, but just reposting as a reminder @charles shepherd

hoping third time lucky that you will oblige by posting the other emails in the chain between Stephen Holgate and yourself @charles shepherd as Chair and member of the board of the CMRC. Thank you.

Regarding the email trail - I don't have this to hand.

It has been a long day and it is nearly 10pm and I'm clocking off to spend some time with my family

I second that request. Perhaps you could post the actual email exchange in the morning - in the interest of transparency. It's pretty quick and simple to do and I'm quite sure that everybody would appreciate it a lot!

Thanks!

 

[AndyH]

@charles shepherd whilst I'm affraid I can not agree with everything you say, I would like to commend you, and Chris Pontin for that matter, on being prepared to discuss the concerns with MEGA publicly.

It is quite obvious to most, that those who's methods are contended, do not engage in public debate. Why? I can only presume they have no answers to substantiate their claims.
So in order to get to the bottom if this quite serious concern and in the interest of patients and ME research in general, I wonder if you'd be good enough to see if you can convince those in MEGA, who have not so far engaged in public debate, to do so at their earliest convenience?

 

[Graham]

I'd like to add that I have every confidence that the MRC is very keen to fund biomedical research into ME/CFS. Just as I fully believe that Trump has a deep and sincere respect for women. But Trump has not so far managed to include any women in his executive team for probably the same reasons: he can't find any that are able to support the attitudes that he demands.

But all this talk of biomedical research is misguided. Our aim is to persuade government to put substantial funds into deep research. The solution is obvious. Fund research into making ME/CFS sexually transmittable. As soon as that happens, the politicians, the celebrities, the high and mighty, will realize that their lifestyles are at risk, and vast amounts of money will appear from nowhere. After all £350 million can be found even when money is tight to plumb and rewire the housing of a poor family living on state benefits.

(Do I need to add a smiley on this to warn people not to take it too literally?)

 

[Barry53]

(Do I need to add a smiley on this to warn people not to take it too literally?)

Your Trump belief removed all need for that .

 

[charles shepherd]

I did a comparison of funding for medical research between the USA and UK for 2011. The US economy is roughly seven times bigger than that of the UK, but it puts around 11 times as much as the UK does into medical research. In contrast, charities in the US raise 10c for every dollar of government money, only twice the amount raised by charities in the UK: 60% of the money raised by charities in the UK comes from the Wellcome Trust: in the US the Gates Foundation makes up a large chunk of the money raised there. In other words, the UK government is tight-fisted, the UK people give more to charity, and the Wellcome Trust is doing nothing for us, although it should.

In the UK state funding of research is split, roughly equally, between the Medical Research Council and the National Institute of Health Research. The latter has spent almost nothing on ME/CFS researh, but I gather is funding Crawley. When I checked the situation with them a few years back, their reasoning was that they supplied resources for ME/CFS research to use (but no doubt they charge!).

Unlike the NIH in America, neither the MRC nor the NIHR give any breakdown of spending in various medical areas, whereas the NIH set out their budgets for each area for each forthcoming year. However, the funds supposedly set aside for ME/CFS by the NIH have drifted into other areas, some has gone completely missing, and some was spent funding a series of experiments making rats swim until they nearly drowned, in order to study what fatigue did to muscles.

The 5 biomedical studies funded in 2012 by the MRC came to a total of £1.6 million, or around £320,000 each. The PACE trial costs must now be well over the £5 million originally set aside, with all their legal fees and appeals. The FINE trial cost over £1 million, and Esther Crawley's latest trial is likely to cost a similar amount. The numbers tell the story.

I forgot to add: in 2011, which is the year of this analysis, the MRC found £410,000 to investigate dog ownership and health.

Thanks Graham

All very useful

As you correctly identify, The Wellcome Trust is a major player in funding UK medical research and we must get them involved with ME./CFS research

I think they did actually fund one of the virology studies that put the final nail in the coffin of the XMRV link to ME/CFS

Otherwise they have shown no real interest in getting involved in ME/CFS research

Which is why the CMRC has been developing links with representatives from Wellcome Trust - who have been involved with the CMRC conferences and can attend CMRC Board meetings with observer status

I know that there are biomedical researchers who have considered applying to Wellcome Trust for funding and I hope that these initiatives will facilitate that process

 

[charles shepherd]

@charles shepherd Is there any reason why MEGA could not go ahead without Crawley? It's blindingly obvious that patients have no trust in her whatsoever, or any confidence in her as an 'expert'. She is not even interested enough in the illness to bother attending conferences and has dismissed all the recent developments.

Do you really think she can be trusted not to use all that data against us?

Back to my other point, I presume the CMRC have so far achieved absolutely nothing? Are the CMRC responsible for all the behavioral studies? Is that their sole achievement?

Are you not concerned that all the applications for biomedical research are being turned down?

Jan

The composition and leadership of the MEGA study is being decided by the MEGA study planning group - which is separate to the CMRC but obviously linked to it

I am not a member of the MEGA planning group and not involved in making appointments to the MEGA planning group

I know you don't like the CMRC but it is not accurate or fair to say that it has achieved absolutely nothing

It has held three successful and well attended two day research conferences that have succeeded in bringing in people who are new to research into ME/CFS,including a number of medical students (that the MEA funds each year)

It has developed links to the MRC, other research funding organisations (e.g. Arthritis UK, Wellcome Trust) and the pharmaceutical industry

It has brought together a group of experts in -omics to carry out the largest ever study using these technologies - again I know you don't like MEGA and I also have concerns and questions

It has started develop various forms f=of practical assistance for young researchers, especially in relation to obtaining research funding

And there are other things - but I'm not going to write another 500 words tonight…

As with many ME/CFS initiatives, we do not have any staff or funding and rely on the goodwill of people to fit all these extra hours into already busy schedules

Overall, with meetings, homework, conference planning, workshops etc relating to the CMRC adds another two weeks to my voluntary work schedule each year and like most other members who do basic 'hands on' stuff I just cannot do any more….

So there are limits to what it can achieve

 

[charles shepherd]

I know it's 10pm again and I'm logging off again now, but just reposting as a reminder @charles shepherd

As you can see I'm still dealing with comments and complaints at 11.30pm on a Saturday night and I haven't had time to dig out this email trail today

I'm sorry but I'm not going to be pressurised into publishing on an internet discussion forum what was basically a personal communication that also liked in to comments from another CMRC researcher (not DR C) without their permission to do so

As I've already said, I told Stephen Holgate that members of the Invest in ME scientific advisory board would not approve of aggressive or rude email correspondence being sent to researchers (I know what it's like because I have had some nasty stuff in recent weeks)

And as Jonathan had been making some very helpful, constructive and critical comments about the MEGA study I suggested that he should write to Jonathan - which he did

That's as far as I'm prepaid to go without contacting my colleagues to see if they are willing to publish the whole email trail to put these comments into context

 

[Barry53]

(I know what it's like because I have had some nasty stuff in recent weeks)

Not from people here I sincerely hope.

 

[Esther12]

I'm not sure if we do want the Wellcome Trust involved. The Mosaic piece on CFS, and the decision the make Suzanne Sullivan's All in the Head the Wellcome book of the year, kind of indicate that they're supporters of the sort of prejudices we've seen from Crawley and co.

We don't need more money for research if it's going to go to people like Crawley. The most valuable thing Wellcome could do for patients right now is acknowledge that it was a mistake to promote O'Sullivan's book without having checked the accuracy of the claims made within it first. It's important not to treat organisations with respect just because they've got a lot of money, and we don't want them giving more money to quacks who make life harder for patients.

 

[charles shepherd]

Not from people here I sincerely hope.

No - I am not accusing anyone on PR of bad behaviour

But personal attacks can sink to pretty low levels elsewhere on the internet - which is partly why very few docs are willing to interact on social media

I don't want to introduce yet another discussion on this thread but it can be pretty unpleasant for those of us who do have to put up with this nonsense from a very tiny minority from time to time - on one occasion I had to involve the police because falsified documents had been involved and another person (I think) still has a restraining order imposed by the courts

In fact, I was in contact with someone tonight (not a psychiatrist) who just would not do social media for this very reason….

 

[Esther12]

Not from people here I sincerely hope.

I think that it would be best if anyone getting unpleasant e-mails were to make them public rather than just provide reports of them. We've seen from Crawley and co how different people can have quite different views about what sort of correspondence could be considered nasty or threatening.

As researchers were saying in response to the recent accusation of 'methodological terrorism', a failure to name names and provide specific examples can lead to entire groups of people being wrongly stigmatised, while failing to reveal any genuine wrong-doing that may be taking place. If a minority are acting badly, then it would be good to call out these specific individuals in the hope of trying to change their behaviour. Just vague references to nasty e-mails leave us unable to do anything to change things.

 

[charles shepherd]

I'm not sure if we do want the Wellcome Trust involved. The Mosaic piece on CFS, and the decision the make Suzanne Sullivan's All in the Head the Wellcome book of the year, kind of indicate that they're supporters of the sort of prejudices we've seen from Crawley and co.

We don't need more money for research if it's going to go to people like Crawley. The most valuable thing Wellcome could do for patients right now is acknowledge that it was a mistake to promote O'Sullivan's book without having checked the accuracy of the claims made within it first. It's important not to treat organisations with respect just because they've got a lot of money, and we don't want them giving more money to quacks who make life harder for patients.

I think you have to accept that the Wellcome Trust is a vast organisation that funds all kinds of activities - not just biomedical research

So I think it would be crazy to say to WT: we don't want your biomedical funding money because someone in another part of the WT (who probably has nothing to do with biomedical research funding) but does deal with medical literature decided that this was a good book

Wellcome Trust >> All our websites: https://wellcome.ac.uk/all-our-websites

 

[charles shepherd]

I think that it would be best if anyone getting unpleasant e-mails were to make them public rather than just provide reports of them. We've seen from Crawley and co how different people can have quite different views about what sort of correspondence could be considered nasty or threatening.

As researchers were saying in response to the recent accusation of 'methodological terrorism', a failure to name names and provide specific examples can lead to entire groups of people being wrongly stigmatised, while failing to reveal any genuine wrong-doing that may be taking place. If a minority are acting badly, then it would be good to call out these specific individuals in the hope of trying to change their behaviour. Just vague references to nasty e-mails leave us unable to do anything to change things.

Again, I don't want to turn this into yet another issue on this thread because the numbers are small and occasional

Like most of my colleagues who have to deal with this sort of nonsense, I just put them straight into delete.

On rare occasions when something is more aggressive or libellous I will take further action

 

[Esther12]

Again, I don't want to turn this into yet another issue on this thread because the numbers are small and occasional

Like most of my colleagues who have to deal with this sort of nonsense, I just put them straight into delete.

On rare occasions when something is more aggressive or libellous I will take further action

If it's something you just want to delete, then that's certainly up to you, but I am concerned that if you're bringing these things into public discussion, but without providing specifics, that can end up stigmatising people who have done nothing wrong.

The recent on-line discussions about the 'methodological terrorism' accusation has made me think more about how vague accusations can end up being misused during debates about tone/practice/etc. It could be that this is something you find hard to know how to handle best, but I'd certainly like to encourage you to avoid vague statements, and replace them with specific examples and the naming of names.

edit: You could start a thread for the posting of e-mails titled: 'I don't appreciate being written to like this, and will not respond'? I think it would be good to try to get things more into the open.

I think you have to accept that the Wellcome Trust is a vast organisation that funds all kinds of activities - not just biomedical research

So I think it would be crazy to say to WT: we don't want your biomedical funding money because someone in another part of the WT (who probably has nothing to do with biomedical research funding) but does deal with medical literature decided that this was a good book

Wellcome Trust >> All our websites: https://wellcome.ac.uk/all-our-websites

It might be worth letting them know that people in another part of the organisation were causing problems and that "the most valuable thing Wellcome could do for patients right now is acknowledge that it was a mistake to promote O'Sullivan's book without having checked the accuracy of the claims made within it first."

Someone at that organisation should have a responsibility to make sure they're not promoting BS.

 

[Graham]

In no way do I support nasty or aggressive emails, but it's time to get a perspective on that. It's only pixels on a screen: they can be dumped and ignored. Naturally, anything libellous should be acted upon, but there are many workers out there who face real aggression and real violence from deranged people. The tribunal that ruled upon the release of the PACE data was clearly given a lot of waffle about aggressive patients, but as evidence, QMUL was only able to state one occasion where Trudie Chalder was heckled by one person at a meeting. My own small request for data was turned down with a 14 page diatribe, much of which was complaining about people on Phoenix Rising being critical of the PACE trial. I am worried that generalized comments, especially from the psych quarter, have caused a lot of damage, and yet have not been challenged. I suspect much of it is robust, scientific questioning. (I don't put you into that category, Charles!)

I lodged a complaint to the BBC about their unquestioning coverage of the interview with Esther Crawley. I have just received their reply, and, illustrating their wide range of reports on the illness, they quote four: striving to find a biological cause, the difficulties along the way, the threats sent to people researching the field and why discussing the disease has become so toxic.