Petition: Opposing MEGA

[Esther12]

I think that the views of @charles shepherd are to be valued, as someone who has spent a lot of time engaging with the UK medical establishment on these issues. The more I've learnt about the history of things the more I understand why the MEA would want to seize on any opportunity to move things in a slightly better direction than they have been. It's been a nightmare for so long that I'm impressed by anyone who's been willing to engage for so long and not been driven mad by it.

I do also wonder if this history could have lowered standards at the MEA too far, particularly now campaigners have been able to gain academic support for a lot of PACE concerns. I think that there is a real possibility of fairly revolutionary change, and the long history of disappointments could lead to MEA and CS being too cautious on this. The UK medical establishment have been acting like frustrating bigots for decades... I'm sure that it would have ground any of us down. Or it could be that I'm foolishly caught up in another momentary flash of hope that will soon fade!

I think that people like Crawley have behaved indefensibly and that publicly supporting their work at this point risks undermining a real chance to be rid of them.

The only thing I would add is that being ''nice'' and ''polite'' has got the MEA, (and us), nowhere. We need the patient orgs to make their opinions more vociferously, to make demands. We could learn a lot from the those who campaign in the US, it has actually got them somewhere. We are still in the dark ages, not moving forwards. The PACE data was only released because of a patient FOI request.

In some ways, MEGA could be seen as the culmination of a cautious, polite, 'big tent' approach. If we'd made no progress with PACE, I could see the benefits of going for it as an acknowledgement of our defeat and in the hope of gradually moving things in a less terrible direction. It does feel like it's been rather over-taken by events, and that at this point it would be a step backwards.

Good to have people taking different approaches - criticism of PACE had been dismissed for a long time, and this could well have continued. But as that work seems to now be paying off, it does alter the cost-benefit assessment of supporting MEGA while Crawley is involved with it.

 

[char47]

I feel your frustration, but I think this comes across as unfairly hostile to @charles shepherd who has devoted many years to unpaid help and advocacy for ME sufferers. He is on our side, and has been clearly critical of PACE etc. and is busy today advocating for us in parliament.

I am a member of the MEA, and, while I don't necessarily agree with everything it does, I value Dr Shepherd's work highly. I assume it was a decision of the MEA board to participate in the CMRC on the grounds that it's better to try to influence from within if one can. I may not have made the same decision if it were up to me, but I can see their reasoning.

Dr Shepherd has made it clear he is unhappy about some aspects of MEGA and is trying to influence it, even though he's not part of its planning group. I think that is a good thing. And he's listening to our comments here, even if he does get a bit frustrated when people, including me, are so pessimistic about MEGA.

By all means suggest the MEA withdraw from the CMRC, but lets reserve our hostility for those who really deserve it, like Wessley, White and Crawley.

I agree. And i for one am very glad he's there within the CMRC. Who the hell would speak for us among them if he resigned? God forbid they be allowed to go about their business without ANY appropriate voice for patients. I mean i can totally see how people want him to resign because it would send a message, but imo that msg wouldnt make much difference at the moment, i certainly dont think it would stop them... they would all just go on their merry way doing what they want regardless, & without him it would be without any kind of appropriate patient voice at all.
I shudder to think of what would go on there without his restraining influence!

 

[trishrhymes]

The only thing I would add is that being ''nice'' and ''polite'' has got the MEA, (and us), nowhere. We need the patient orgs to make their opinions more vociferously, to make demands. We could learn a lot from the those who campaign in the US, it has actually got them somewhere. We are still in the dark ages, not moving forwards. The PACE data was only released because of a patient FOI request.

I agree we could do with some fiery advocates who can get the ear of politicians as some in the USA have done recently. We have the whole political and much of the medical establishment to fight against. It takes a particular kind of person to have the fire and the skill to take that on head on. Particularly difficult when we're mostly in bed or struggling to keep some semblance of a 'normal' life going.

We also need good organisations like the MEA and Tymes to provide information and support for patients and to advocate doggedly on our behalf. I'm not sure it's fair to criticise the MEA for not being that fiery giant killer we'd love to see.

It may be more a case of an individual or a group who have those skills setting up a new advocacy organisation like ME Action in America. Maybe it's already happening. (anyone?) I sometimes wish a few senior and influential politicians would get ME. Preferably some who have been toughest on cutting disabled people's benefits (naming no names). Throw in a few BPS doctors becoming bedbound with ME and let them try GET. Then we might see some action!

 

[thegodofpleasure]

I agree. And i for one am very glad he's there within the CMRC. Who the hell would speak for us among them if he resigned? God forbid they be allowed to go about their business without ANY appropriate voice for patients. I mean i can totally see how people want him to resign because it would send a message, but imo that msg wouldnt make much difference at the moment, i certainly dont think it would stop them... they would all just go on their merry way doing what they want regardless, & without him it would be without any kind of appropriate patient voice at all.
I shudder to think of what would go on there without his restraining influence!

I would simply point to the total failure of that approach to date.

The CMRC is a lost cause.

 

[Yogi]

I think that the views of @charles shepherd are to be valued, as someone who has spent a lot of time engaging with the UK medical establishment on these issues. The more I've learnt about the history of things the more I understand why the MEA would want to seize on any opportunity to move things in a slightly better direction than they have been. It's been a nightmare for so long that I'm impressed by anyone who's been willing to engage for so long and not been driven mad by it.

I do also wonder if this history could have lowered standards at the MEA too far, particularly now campaigners have been able to gain academic support for a lot of PACE concerns. I think that there is a real possibility of fairly revolutionary change, and the long history of disappointments could lead to MEA and CS being too cautious on this. The UK medical establishment have been acting like frustrating bigots for decades... I'm sure that it would have ground any of us down. Or it could be that I'm foolishly caught up in another momentary flash of hope that will soon fade!

I think that people like Crawley have behaved indefensibly and that publicly supporting their work at this point risks undermining a real chance to be rid of them.



In some ways, MEGA could be seen as the culmination of a cautious, polite, 'big tent' approach. If we'd made no progress with PACE, I could see the benefits of going for it as an acknowledgement of our defeat and in the hope of gradually moving things in a less terrible direction. It does feel like it's been rather over-taken by events, and that at this point it would be a step backwards.

Good to have people taking different approaches - criticism of PACE had been dismissed for a long time, and this could well have continued. But as that work seems to now be paying off, it does alter the cost-benefit assessment of supporting MEGA while Crawley is involved with it.

I think this is a brilliant post. It is what I have been feeling about MEGA/MEA but have not written it yet.

This needs a superlike button.

I completely agree that the cost/benefit analysis has changed after the PACE scandal and we are in a position of strength and this is a once in a lifetime opportunity to be strong and united and get rid of the BPS school once and for all. We would be foolish to pass this opportunity by and now support MEGA with all the CMRC BPS baggage and White/Crawley etc.

The rule of the game have changed with the recent events with PACE and we should be bold and reject this MEGA as it currently stands.

I am also mindful that CMRC are playing games with us all these years. It is not an accident that such bad research has come from the UK and when the PACE trial is under threat of retraction they pull out MEGA (with good and bad bits) which has resulted in some who we respected in the ME community supporting it and others against it which results in division in the community.

P.S. We must not also allow this deliberate distraction of MEGA to take our eyes and pressure off the PACE trial.

 

[Cinders66]

The only thing I would add is that being ''nice'' and ''polite'' has got the MEA, (and us), nowhere. We need the patient orgs to make their opinions more vociferously, to make demands. We could learn a lot from the those who campaign in the US, it has actually got them somewhere. We are still in the dark ages, not moving forwards. The PACE data was only released because of a patient FOI request.

I agree. Being within a tent /collaborative part full of unhelpful thinkers is only worthwhile if the charitied seized the day and made demands and had agued for fair funding including RFA, argued for scrapping oxford and Nice criteria etc to be scrapped, gotten research on ME or a PEM based SEID or anything that got us away from CFS as uk knows it etc. It has seemed from outside as Holgate making the ideas and charities giving assent. I think being part of the MRC , even if no one was threatening a gagging clause, had made it very hard for MEA , MERUK to be vocal advocates as the pressure is to act respectably and cordially with establishment and accept the crumbs given whilst patients are still failed miserably. There is always there, start being too difficult and we will disband and leave you with nothing again.

There is an UK #ME action but , I don't know if it's just being British, but the campaigns so far they have run just aren't in the American feisty plain speaking, assertive mould, which hasn't ruffled the feathers it could have this year

 

[eafw]

we are in a position of strength

I'm not sure that we are, I mean what exactly is our leverage here ? What have we got that they need ? They'll find their guinea pigs without us (us being those who know enough of the history and politics to see what's going on and want to speak out about it).

The reality is we will not be taking down the CMRC here. Yes, some people will want to wash their hands of them which is totally up to them, but in a bigger picture sense what is it achieving ? I think the best we can hope for is to get the scientists set off on doing the research, supporting the science and at the same time continue to advocate against GET/NICE/MAGENTA etc

The science may as well be ongoing while we continue to fight this, honestly I think people are being very naive if they think the CMRC and BPS school are suddenly going to collapse overnight if we don't sign up to support the MEGA study. We need to gear up for an ongoing long-term campaign, get attitudes shifted in the media, the NHS - this is slowly starting to happen post-PACE release - and even better if we have a whole new group of proper scientists as allies - and potentially some revolutionary results coming out of the whole big-data-omics thing.

We could see MEGA as an opportunity to get more scientists on board, the more who realise what this illness is about and the history of it the better.

 

[Yogi]

@eafw Relative strength compared to the decades before.

If patients do not support them and pressure is put on the charities not to then they will not get funding. However if patients are united then it cannot go ahead without patient support.

I am concerned that this whole patient support thing is a charade and funding has been informally approved. That is another issue.

We need to leverage the PACE scandal and retraction which would mean White is finished. This would have implications for Crawley and like a domino she and others in BPS would then fall.

By supporting MEGA with White, Crawley, poor defintions and no severe patients we would be giving these people further support and harming our long term interests.

I agreed with MEGA at the beginning but there are clear red lines which have been elaborated on PR. However the birth and the poor communication of MEGA gives me grave doubts on whether we should halt this thing now before any precious money is wasted on it.

 

[Jonathan Edwards]

Are you listening @charles shepherd ?

Once again, Invest in ME and people like Malcolm Hooper, Margaret Williams and Jonathan Edwards are leading the way and making you look a bit out of step with patient opinion.

I think that it's high time that the MEA cast off the shackles of their membership of the CMRC and had the balls to criticise the unbelievable shambles that has been the birth of the MEGA study.

In fact, if the MEA want to retain the confidence of the patient population, they should send out a clear and positive message by leaving the CMRC altogether.

@thegodofpleasure
I actually disagree here - I go with trish and Ys. Charles is a crucial part of the advocacy machinery. As far as I am aware the only difference between he and I is that we found ourselves starting from different positions in this exercise. Unlike the present Foreign Secretary I think Charles has remarkable traditional diplomacy skills (and fortunately a thick hide). Singing from the same hymn sheet is good but it is even better if some people sing tenor and others bass. Unison gets monotonous.

 

[justinreilly]

As another patient said: “Burn me once, shame on you. Burn me twice, shame on me.” These charlatans- White, Crawley and friends- have burned us on hundreds of studies, probably substantially caused the early death of many many thousands of ME patients and incalculable suffering The only prudent course to take with any of these insurance lobbyists posing as scientists is to oppose any ME study they propose to undertake! This is a human rights issue. NO MORE!!

 

[eafw]

Relative strength compared to the decades before.

If patients do not support them and pressure is put on the charities not to then they will not get funding. However if patients are united then it cannot go ahead without patient support.

There are something like 250,00 with the condition in the UK and about 20,000 at the NHS clinics. A fraction of them are here, or even know about the whole sorry history. Any unity against MEGA is confined to a tiny proportion of the patient population as a whole.

I am concerned that this whole patient support thing is a charade and funding has been informally approved. That is another issue.

I think the CMRC have failed spectacularly on this from a public relations point of view. Hard to know much is basic clueless incompetence and how much is deliberate scheming.

We need to leverage the PACE scandal and retraction which would mean White is finished. This would have implications for Crawley and like a domino she and others in BPS would then fall.

White has already retired from the group and Crawley is going to take a lot more than lack of support for MEGA to shift. The BPS as a whole will take even longer still. I wonder if people realise just how protected by and entwined with the establishment these people are. We cannot wait until they have gone until we accept new research. We need to do both (ie a wider campaign against BPS and accept the project) similtaneously.

By supporting MEGA with White, Crawley, poor defintions and no severe patients we would be giving these people further support and harming our long term interests.

We have to be realistic. BPS will be smarming around in the background whatever we do. The CMRC will not get rid of them on our say-so. There is a good chance however to make the case to tighten up definitions and patient selection. Those are things we can press for, without ditching MEGA completely. BPS will find themselves slowly sidelined as the science comes forth, and again, meanwhile, there is plenty to be going at with regards to campaigning against Crawley/MAGENTA

I agreed with MEGA at the beginning but there are clear red lines which have been elaborated on PR. However the birth and the poor communication of MEGA gives me grave doubts on whether we should halt this thing now before any precious money is wasted on it.

The communication has been dreadful, but that money if not going to MEGA is not going to be coming our way for other projects. We lose it .

 

[Snowdrop]

I guess opinions vary depending on how one perceives the BPS influence.
Mine: One doesn't collaborate with cancer in the hopes of influencing it to see reason--one excises the tumour.

 

[BurnA]

but that money if not going to MEGA is not going to be coming our way for other projects. We lose it .

I don't think the goal is to accumulate money in the form of poor research.
The notion that this money is only available to MEGA is difficult for me to understand.
Have the Welcome trust stated that they categorically will not fund any other research into ME besides MEGA ?

The reality is we will not be taking down the CMRC here. Yes, some people will want to wash their hands of them which is totally up to them, but in a bigger picture sense what is it achieving ?

It's not necessarily the goal but it probably would achieve a lot. What have the CMRC achieved so far that we can't live without ?
If we didn't have them taking funds who knows there might be more room for iime and other charities to apply for funding. Even if not, the CMRC has too many links to the BPS for it ever to be much use. I think we would be better off without them on balance, mainly because it breaks the link to the past and seperates the bad from the good research.

We have to be realistic.

Likewise, we don't have to be narrowminded and constrained in our ambitions because others can't see what is possible or what is required to be done.
Everybody see things differently, change is only ever achieved by taking action, it doesn't just happen.

 

[thegodofpleasure]

I'm not sure that we are, I mean what exactly is our leverage here ? What have we got that they need ? They'll find their guinea pigs without us (us being those who know enough of the history and politics to see what's going on and want to speak out about it).

The reality is we will not be taking down the CMRC here. Yes, some people will want to wash their hands of them which is totally up to them, but in a bigger picture sense what is it achieving ? I think the best we can hope for is to get the scientists set off on doing the research, supporting the science and at the same time continue to advocate against GET/NICE/MAGENTA etc

The science may as well be ongoing while we continue to fight this, honestly I think people are being very naive if they think the CMRC and BPS school are suddenly going to collapse overnight if we don't sign up to support the MEGA study. We need to gear up for an ongoing long-term campaign, get attitudes shifted in the media, the NHS - this is slowly starting to happen post-PACE release - and even better if we have a whole new group of proper scientists as allies - and potentially some revolutionary results coming out of the whole big-data-omics thing.

We could see MEGA as an opportunity to get more scientists on board, the more who realise what this illness is about and the history of it the better.

You're missing the point.

MEGA is a sinkhole, which will not only swallow up all of the UK funding, but will also provide a convenient tick (indicating job done) for those who need to demonstrate that some research is being undertaken into this disease.

As such, it will be a waste of at least another 5 years.

 

[eafw]

Mine: One doesn't collaborate with cancer in the hopes of influencing it to see reason--one excises the tumour.

Using your analogy, just how are you going to achieve this excision ? This is not a rhetorical question, I would like someone to paint a scenario for me ...

us: we hate crawley, sack her (nicely written, referenced and signed by important people)
them: oh, OK then

Not a chance.

A similar recent example: think about the letters from Tuller et al to the Lancet. The response to that from the BPS lackeys ? - "yeah whatever, we're on holiday". This is what we are up against.

 

[jodie100]

In his comment on the Omega petition which was posted above Professor Hooper says that "the CCC and ICC provide a sound basis for diagnosis and treatment", however I don't think there is any consensus that this is the case, and I am worried that this and some of the other objections to Mega are premature or based on partial information or misunderstandings, and that a really good opportunity for research that may clarify the various subsets of M.E. will be lost as a result.

e.g. There is an interesting discussion in this article http://bmjopen.bmj.com/content/4/2/e003973.full of a review of CFS case definitions and, with the acknowledgement that it is limited by the fact that some of the validation studies reviewed showed "methodological weaknesses and inconsistent results", it states that:
"The most cited case definition (CDC-1994/Fukuda et al39) is also the most extensively validated one, whereas validation studies are few (Canadian-2003,22 ICC-201123) or missing (National Institute for Health and Care Excellence (NICE)-200746) for recently presented and debated case definitions. We found no empirical evidence supporting the hypothesis that some case definitions more specifically identify patients with a neuroimmunological condition."
Some of the studies reviewed actually found a higher rate of psychiatric illness in patients diagnosed with both Fukuda and CCC or ICC criteria than Fukuda alone, and some showed the opposite,. (I am just using this as an example of lack of consensus or evidence. I realise that Mega plans to use the NICE criteria initially, not Fukuda.)

 

[BurnA]

Using your analogy, just how are you going to achieve this excision ? This is not a rhetorical question, I would like someone to paint a scenario for me ...

us: we hate crawley, sack her (nicely written, referenced and signed by important people)
them: oh, OK then

Not a chance.

A similar recent example: think about the letters from Tuller et al to the Lancet. The response to that from the BPS lackeys ? - "yeah whatever, we're on holiday". This is what we are up against.

So would you rather concede defeat because you dont think you can achieve what you want ?
Did AIDS patients do this?
Did Civil Rights activists do this ?
Did the Suffragettes do this ?

I'm sure at some point in every struggle it appears unrealistic to some but thankfully for those people, others didn't give up.

 

[eafw]

You're missing the point.

No, I'm not missing the point we just have different stances. You think time will be wasted if MEGA goes ahead. I think time will be wasted if it doesn't

change is only ever achieved by taking action,

Yes, but there are some who think the right action to take is to ditch the CMRC and some who think the right action is to use them to get some of what we need for now, as our options in reality are quite limited.

I don't think there is an obvious clear cut decent choice here, it is between "not very good" and "worse", we just disagree about which way round they are.

 

[A.B.]

The best outcome is that the rest of the MEGA team reads about the PACE story as told by Julie Rehmeyer and decides they cannot possibly collaborate with the BPS school of thought. They decide to abandon MEGA. In part because they fear their own reputation will suffer, in part because the unethical behaviour disgusts them. They become even more determined to do research on ME/CFS, now knowing how much it is needed. They start looking for alternatives to the CMRC which they now perceive as organization that serves to protect BPS authors interests. They are invited to IiME and get involved in a new project, outside of the sphere of influence of the BPS school.

A little daydreaming.

 

[Snowdrop]

Using your analogy, just how are you going to achieve this excision ? This is not a rhetorical question, I would like someone to paint a scenario for me ...

us: we hate crawley, sack her (nicely written, referenced and signed by important people)
them: oh, OK then

Not a chance.

A similar recent example: think about the letters from Tuller et al to the Lancet. The response to that from the BPS lackeys ? - "yeah whatever, we're on holiday". This is what we are up against.

Instead of trying to influence and make changes to the MEGA research (which I understand might go ahead anyway) if the advocates of PwME withdrew from participation in anything CMRC they could turn their effort/energy toward networking to raise private funding, more time developing media connections that will help demolish PACE and show the real view from the very severely ill.
If George Davey-Smith woke up tomorrow and found that their was NO support from the ME community and that the charities were looking to find researchers who could collaborate internationally (perhaps US/Norway) and direct funds there how would he feel about how relevant his research will be given that it is now in support of the status quo that brought us PACE?

And there would be direct connection between money raised and where and how it's spent. As a few others have now said; the UK is extremely isolationist (explicitly) so isolate them. Let them be the silly people who keep throwing money at the lame horse. And let them have to justify it after when we all know they know better. I think G D-S should be put in a position of choosing which horse he's going to back.

I'm not that politically savvy perhaps this might seem a little impossible. But with the inroads we've made thanks to the 'shouty' Americans I think that it's just maybe possible to ignore NHS et al and seek private funds -- not overnight but I don't see any fast benefits from MEGA either.