Petition: Opposing MEGA

[trishrhymes]

I was very concerned that a counter petition of this sort would be an own goal. However, reading this I cannot really fault it and am actually impressed by much of the wording and argument. The up front reference to researchers whose work has been shown to be substandard may seem inflammatory but we are past that now and I think being to the point is a strength. The point that MEGA is not the only game in town is well made. From my point of view I have yet to see any information that would convince me that any original thought has gone into the project. I am not a fan of Big Data. They jumped the gun and it is entirely legitimate to say so because it is an insult to the patients' intelligence.

So I think I would encourage all members to sign. If the petition is there and is making a fair point good numbers of signatures would have impact.

Thanks everyone, and especially Jonathan Edwards whose judgement I trust. I will now sign.

 

[AndyPR]

Just shared the link to the petition on the ME Associations Facebook page with the following message

In the interest of a fair debate, and as a request from a ME Association member, please share this link. This would help members and followers of this page to make an informed decision on MEGA, Thanks in anticipation.

At the moment, I'm not holding my breath

 

[Keela Too]

I decided to think on this over night, and signed this morning with this comment:


"MEGA seems a very costly exercise that might not get useful results for the patients currently confined to bed and desperately awaiting reasonable medical attention.

A more focused study (or series of smaller studies), looking at the most severely affected in greater detail might be more immediately useful than a survey of a very wide cohort of fatigued patients.

I am also seriously concerned about the inclusion of researchers who buy into the biopsychosocial premise for ME aetiology.

Surely the funding directed to this study could be more usefully spent on trialling promising drugs, and investigating the pathophysiology of the most severely affected.

I am of course pleased that new researchers have been encouraged to enter the ME field of research, but am very concerned that the "experts" they encounter whilst working on this study might be those who take a biopsychosocial view of ME in the way that the PACE trial did.

I have too many concerns about this trial to be supportive of it. I urge a major re-think."

 

[A.B.]

Here is a link to Keela Too's excellent comment
https://www.change.org/p/opposing-m...dence-in-mega-research-for-me-cfs/c/522753572

It needs more upvotes!

 

[Simon]

I think this is a misconception. A lot of very good biomedical research into ME has been going on in the UK. You may not hear that much about it because it is not self-publicised or politically sensitive. MEGA is not the only game in town and will compete with good work already going on. The MEGA team could have collaborated with others and made a good start on the work by now.

I don't understand how this competes. MEGA haven't even applied for a grant yet, and only plan to apply to Wellcome initially - who to date have NEVER funded mecfs research, so I don't see how it competes for funds.

Which particular work do you think this will compete with, and how?

 

[Simon]

BPS proponents will be able to use this data to make claims that further BPS oriented research is justified. They will continue to divert funding from other useful projects, continue to create confusion, continue to inflict inappropriate treatment on unsuspecting patients.

BPS proponents have been tryinng this for years, and it culminated in the PACE trial that explicitly based CBT & GET on a BPS model. It was a bust. Let them continue to dig away, they still won't find anything because, as PACE showed, BPS can't explain mecfs. Personally I'd love to see a BPS vs biomedical data shakedown. I think the latter will finally start to provide real answers to our illnesss.

Not supporting MEGA on the grounds of White and Crawley involvement sends a clear message that patients are fed up with the BPS approach. This will help put research in the UK on the right track.

I'm not sure how ending MEGA will put UK research on the right track if a whole load of biomedical researchers get put off. The whole problem is we don't have lots of biomed researchers fighting over our illness, and even though there's some good research here its on far too small a scale. Shutting down MEGA won't help

 

[AndyPR]

Just shared the link to the petition on the ME Associations Facebook page with the following message

At the moment, I'm not holding my breath

And the reply was

I'm sorry, Andy. While I'm not about to 'hide' this petition, I don't think what you're asking is particularly fair. You asking us to actively promote a petition which is against something the MEA openly supports – at least in the early stages, while the various principles involved are being sorted out.

I quote this tweet from Leeds ME Network, who spoke with our chairman Neil Riley a few days ago:

Leeds ME Network
@leedsMEnetwork
Oct 17
Neil Riley @MEAssociation phoned to say our concerns will be passed to #MEGA & MEA will only support study if patient sample representative.

That's all that can be squeezed into a 140-character message, but we're well aware of all concerns and passing them on to the people most active in the MEGA project.

– Tony at the MEA.

 

[A.B.]

I'm not sure how ending MEGA will put UK research on the right track if a whole load of biomedical researchers get put off. The whole problem is we don't have lots of biomed researchers fighting over our illness, and even though there's some good research here its on far too small a scale. Shutting down MEGA won't help

It will help ensure that future studies are done without BPS influence by making it clear that patients are opposed to this ideology and its "experts".

There may not be many biomedical researchers now, but there will be in the future. The pressure to fund biomedical research will only increase. NIH will make more funding available. Pioneers such as the OMF and the Norwegians are opening up interesting lines of investigation. The researchers will come. And we want them fully committed to the biomedical approach, learning from real experts.

 

[BurnA]

I'm not sure how ending MEGA will put UK research on the right track if a whole load of biomedical researchers get put off.

Why would they be put off ?
The argument about putting off researchers really needs to have lot more justification for it to be trotted out so easily - it's been debunked many times on these forums already.

It's worth remembering people who are anti MEGA ( in its current format - which is the only format we can judge it by ) are not anti biomedical research.

The long term benefits of objecting to MEGA could in fact be hugely positive to ME research and should not be underestimed.

 

[Simon]

It will help ensure that future studies are done without BPS influence by making it clear that patients are opposed to this ideology and its "experts".

There may not be many biomedical researchers now, but there will be in the future. The pressure to fund biomedical research will only increase. NIH will make more funding available

The NIH are a US funder and that's where most of the money goes. OMF are US too, F&M Norwegian. I want UK research too. We've had years of no researchers coming in, I have no idea why you think we'll suddenly have a ton or researchers if we put off a dozen who have finally come forward.

Why would they be put off ?

Because if they see biomed researchers coming forward then their planned project get closed down, why would they bother? Sadly biomed researchers have been ignoring mecfs for years, closing down MEGA would be another reason not to get involved. Why would they want to come after MEGA when they didn't want to come before?

 

[Simon]

Yes, MEGA has Peter White and Esther Crawley on board, and they certainly wouldn't be in my dream team. But MEGA is mostly new biomed talent coming in to mecfs to do the world's biggest study. It will look at
Proteins
Genes
Gene expression
epigenetics
Metabolism

It will look for the molecular mechanisms for subgroups.

i've been waiting for a study on this scale, using many different biological approaches, for years. Plus it will generate at ton of samples, and data, for other researchers to use and explore.

That could be a game changer and spur on a whole new wave of biomed research. It is not another PACE. It's not perfect, and I hope MEGA will seriously engage with patients to improve the study, but I do think this study had the potential to make huge inroads into understanding mecfs.

 

[Jo Best]

I think it's doing any biomedical researchers new to the field a favour by letting them know in no uncertain terms what they may unwittingly be letting themselves in for by engaging in what I hate to see as the latest charade.

World-class UK biomedical researchers leading in their respective fields have taken a keen interest in ME/CFS by getting involved in the Invest in ME Research International Conference and Colloquium events.

 

[lilpink]

The long term benefits of objecting to MEGA could in fact be hugely positive to ME research and should not be underestimed.

Indeed. And one might conjecture the reason for the MEGA petition being created in the first place given it was so woolly in terms of its intentions (so woolly that some patients have expressed a desire to remove their names from it subsequent to recent discussion online over the last week or so). One might speculate it was a means to creating a 'data set' of patients who 'support' MEGA as a crowbar to lever funding from bodies such as the MRC. Ie: use that data set as their mandate from actual ME patients. So what about those patients who do not want this and want to make it clear that it is not 'in my name'? The only way to counter 'data' is with 'data'. OMEGA gives each patient or carer or family member or concerned party the opportunity to say 'no' to MEGA. One person one vote. Nobody has to sign it if they don't agree with it. Some people are opining that they wish they could sign it 100 times over. From my point of view there is no debate. But this is a shout out to give individuals a voice.

 

[Simon]

World-class UK biomedical researchers leading in their respective fields have taken a keen interest in ME/CFS by getting involved in the Invest in ME Research International Conference and Colloquium events.

Excellent, and world-class UK biomedical researchers are planning a huge biomedical study via MEGA. We should encourge both, not try to close down research.

 

[A.B.]

The NIH are a US funder and that's where most of the money goes. OMF are US too, F&M Norwegian. I want UK research too. We've had years of no researchers coming in, I have no idea why you think we'll suddenly have a ton or researchers if we put off a dozen who have finally come forward.

The problem with lack of biomedical research in the UK is precisely the BPS lobby and the perception of the illness it has created. MEGA will involve the BPS lobby and they will use it to promote their ideology further. I want UK research as well, but bad research is worse than nothing.

The recent developments in the US and Norway will result in a surge of interest into ME/CFS research in the rest of the world, including the UK.

Because if they see biomed researchers coming forward then their planned project get closed down, why would they bother? Sadly biomed researchers have been ignoring mecfs for years, closing down MEGA would be another reason not to get involved. Why would they want to come after MEGA when they haven't come before?

They will see who gets patient approval and who doesn't and make the necessary adjustments.

It's still possible to salvage MEGA, but major changes will have to be made.

 

[AndyPR]

Invest in ME (you know, that UK based organisation doing/enabling biomedical research) have released an updated statement on MEGA and OMEGA.

http://www.investinme.org/IIME-Newslet-1609-02a.htm

 

[Jo Best]

Excellent, and world-class UK biomedical researchers are planning a huge biomedical study via MEGA. We should encourge both, not try to close down research.

MEGA won't deliver what I want from a biomedical study.

MEGA chose to petition for public support therefore they must expect a counter-petition to provide the opportunity for those wanting to give a positive vote of no confidence rather than just not signing the MEGA petition.

 

[eafw]

The professional ethics of petitioning the public for support in order to obtain research funds and petitioning support of a vulnerable community of patients/carers is questionable.

Petitioning for public support is all part of the "patient involvement" box-ticking that researchers can add into their grant applications nowadays. In and of itself it is nothing that terrible, and if used properly as a genuine way to engage with patient communities it could be very useful.

The problem here is with MEGA - specifically those who have spent years denigrating and abusing patients and using their power to build their little empires at our expense. It is that CMRC, AfME, and the rest should be making a clear statement about PACE, NHS treatments etc and putting forward a clear apology to the patient community before even attempting to get our support for this project.

It shows their arrogance and sense of untouchable-ness that they think that they can just pretend PACE + BPS propaganda (and the seriously destructive consequences for us with this illness) never happened and we all can just move along now "nothing to see here".

 

[Countrygirl]

IiME support the Omega petition:

http://www.investinme.org/IIME-Newslet-1609-02a.htm

An update to our earlier comments about MEGA (M.E./CFS Epidemiology and Genomics Alliance) , following requests by supporters to comment on the recent OMEGA (Opposing MEGA) petition which opposes this project.

Our statement from September(below) detailed our concerns about the MEGA project.

Since that statement we have seen nothing which changes our earlier view.

The OMEGA petition [1] is a well worded document.

We agree with the OMEGA petition that the liberal use of the terms "biological" and "biomedical" is likely a purposeful act to encourage support from people who otherwise remain highly sceptical of those involved in setting up the original petition.

It was actually notable at the recent collaborative meeting in Newcastle how a known advocate of the behaviouralist view of ME seemed to liberally sprinkle their comments with the word "biomedical" - much like a converted atheist, though we doubt such miracles have actually occurred in this context. We do, however, feel that this change in terminology is a tactic.

In agreement with the OMEGA petition again regarding severely affected - Invest in ME has always been of the view that severely affected should not be excluded from consideration in any research into ME.

In our original statement in September we stated our lack of confidence in having anyone involved in any project researching ME, who also had connections to the PACE, SMILE or MAGENTA.

"We have already requested that the MRC refuse to allow grant applications from, or provide funding to those investigators who were involved in the flawed PACE Trial.

This project proposes some of those behind PACE or supporting it will be involved.

We have no confidence in these people."

Therefore, having already requested that the MRC refuse to fund any more research into ME by those involved in PACE then we cannot accept that these people are involved in any aspect of future research at least until an inquiry has been held into the flawed PACE trial.

These points alone do not allow us to consider endorsing the MEGA project as it is.

If one then looks at the patient representation and the organisations involved - including one organisation who was influential in setting up the PACE trial and another who resolutely refuses to denounce the PACE trial - then it is clear to see that Invest in ME would have no confidence in these organisations being part of any major research commanding large amounts of public funding either.

The OMEGA petition against the MEGA project states that -

"There are genuine opportunities for UK biomedical researchers to get involved in ME/CFS research and to really make a difference to millions of people's lives. It is not a case of 'MEGA or nothing' "

We agree.
We believe we have a better way of achieving real advances in research into ME [2] using far less funding than the estimate of the MEGA project (which is still not fully determined). We have already stated our vision of how research should be carried out [3] and we intend to continue that policy. Ours is easily attainable, given enough support, and we believe this will have a far more imemdiate and beneficial outcome for people with ME and their families than the MEGA project.

Though it is not our concern what the MEGA project and the organisations behind it are doing we have been asked to comment and we can easily state that we agree with the sentiments behind the OMEGA counter-petition.

Patients and their families who are suspicious of the motives of those organising the petition to support MEGA and the MEGA project itself have every reason to be cautious.

We have huge doubts that the MEGA project will lead to anything conclusive that will benefit patients in the immediate future.

We have no confidence in some of those proposing this study.

We do not believe it is the best way to use scarce public or private funding for research into ME at this time.

We do not support the MEGA project in the way it is presented because the effects of removing funding for other projects caused by a successful MEGA application will, we believe, ultimately fail people with ME and their families.

It is understandable that some are eager to support what is put forward as a change for all and hope it will lead somewhere, that suddenly ME is taken seriously, that progress will be made.

From our review of the IOM report we stated -

"What a waste of life has been allowed to occur by governments from their failure to monitor progress or listen to continuing and mounting patient concerns; how corrupt and immoral has been the attitude of those leading the organisations which use public funding of ME research, given mainly to researchers who consider ME/CFS a psychosomatic illness?"

So when we look at how this has been set up, by whom and the vagueness of the whole approach - and especially at some of those involved in this proposal - we are left to wonder how many second chances do these people and organisations deserve?

Progress is a fine word - but change is its motivator.

We really do not see change in the some of the people and organisations presenting this project.

We support the sentiments expressed in the OMEGA petition.

We do not support the MEGA project for the previously stated reasons.

References
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

2 Building the Future for Research into ME

3 Centre of Excellence for ME

 

[ianorourko]

Yes, MEGA has Peter White and Esther Crawley on board, and they certainly wouldn't be in my dream team. But MEGA is mostly new biomed talent coming in to mecfs to do the world's biggest study. It will look at
Proteins
Genes
Gene expression
epigenetics
Metabolism

It will look for the molecular mechanisms for subgroups.

i've been waiting for a study on this scale, using many different biological approaches, for years. Plus it will generate at ton of samples, and data, for other researchers to use and explore.

That could be a game changer and spur on a whole new wave of biomed research. It is not another PACE. It's not perfect, and I hope MEGA will seriously engage with patients to improve the study, but I do think this study had the potential to make huge inroads into understanding mecfs.

Simon, sounds almost too good to be true, doesn't it? One thing that not many people have touched on yet is the financial feasibility of this study. When we begin to look at it, as Trishrhyrmes and others have done in the thread posted below, it really doesn't appear all that realistic at all to gather, test and study samples from 12,000 people to the level they've alluded to. In fact it would seem pure fantasy.

They've already said that "How much data we collect (symptoms/criteria ) will depend on what our patient advisory group ( AFME? PACE supporters? ) says will be acceptable to consenting patients and how much funding we get ( might not be enough funding to collect sufficient symptom/criteria data?? Kind of makes the study obsolete already... )"

That doesn't sound great as a basic start and as A.B. ( hope you don't mind me quoting you ) said on the thread below, "the likely outcome of all this is that they will only be able to afford superficial testing that is unlikely to give a clear picture of what is actually happening, defeating the purpose of the study. Confusion and uncertainty will result. The Wessely school will get nice data on fatigue, depression, anxiety questionnaire which can fuel their brand of pseudoscience for decades to come." Makes nout but sense.

http://forums.phoenixrising.me/inde...-mega-cost-and-an-alternative-proposal.47460/