Petition: Opposing MEGA

[AndyPR]

We vote 'no confidence' in MEGA research for M.E.

A UK medical research group called MEGA (M.E./CFS Epidemiology and Genomics Alliance) has set up a petition for public support to help them obtain millions of pounds (estimated minimum £9m) from research funding bodies for a prospective study of a neurological disorder known for research purposes as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).

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.

The MEGA petition includes words such as 'biological' 'biomedical' 'big data' 'potentially game-changing' - clickbait for patients/carers desperate for definitive diagnostic tests and medical treatments, yet updates show how little thought and planning has been given by the research team to their own proposal. They had not even thought of including the 25% most severely ill patient cohort in their proposed 12,000 participants.

A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'.

and in conclusion

Thus in signing this petition we reject calls from the ME/CFS Epidemiology and Genomics Alliance to create any proposal for a ‘big data’ study, or any study of any description, regarding it as inevitably and irrevocably tainted.

No more wasting time, money, lives – not in our name.

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'.

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

NB: I am not connected to this, the first time I was aware of this is shortly before I created this post.

 

[Jan]

They've brought this on themselves by refusing to acknowledge the very real concerns of patients. They choose which question to answer and ignore the huge issues. It really is time for the CMRC to be disbanded if anyone is to have any trust in present or future UK ME research, they are biased and they are not going to change.

 

[slysaint]

This is their website:
https://opposingmega.wordpress.com/about/
Who are they?

 

[Sidereal]

Very poorly worded petition.

 

[Jan]

Very poorly worded petition.

I thought it was quite good. I'm not involved with the petition btw

 

[Sidereal]

I thought it was quite good. I'm not involved with the petition btw

I don't think using terms like 'discredited', 'sham' and 'Wessley School' is helpful in trying to get one's point across.

 

[AndyPR]

I'm considering whether to sign it or not at the moment. My initial reaction is that the petitions statement, that MEGA not conduct any research at all, is too extreme for me. But that is just my opinion

 

[Comet]

I would prefer action to amend MEGA than to oppose it altogether (but I am not a UK citizen).

 

[AndyPR]

I would prefer action to amend MEGA than to oppose it altogether (but I am not a UK citizen).

To my knowledge, neither petitions (both pro and anti-MEGA) are limited to who can sign them.

 

[snowathlete]

I agree with Sidereal about the wording, those terms come across as a bit extreme and emotional. I expected it would be worse though, to be fair, the general gist is ok, however like AndyPR I am uncertain whether to sign a petition that leaves no room for modification of the study - though I have to say that having seen Crawley and White are involved, AfME and particularly AYME (the one charity which is 100% totally rotten), the focus on general fatigue, too much focus on mental health status, fob-off answers to questions that have been raised and no sign that they are going to actually see patients as true partners, etc. I am fairly close to being convinced that this study is irredeemable.

 

[Jan]

I would prefer action to amend MEGA than to oppose it altogether (but I am not a UK citizen).

The only problem with that is Crawley will remain and in a very dominant position as regards to who participates in the study. I can't support it with her in it

 

[A.B.]

I am fairly close to being convinced that this study is irredeemable.

It's probably irredeemable as long as the rest of the team falsely believes that the BPS lobby are experts that have produced useful work.

I am assuming that the rest of the team is unaware that White engaged in outright fraud in the PACE trial. The way the PACE authors have behaved is consistent with intention to deceive, and they have personally gained from this, which is the definition of fraud.

 

[Jan]

It's probably irredeemable as long as the rest of the team falsely believes that the BPS lobby are experts that have produced useful work.

I am assuming that the rest of the team is unaware that White engaged in outright fraud in the PACE trial. The way the PACE authors have behaved is consistent with intention to deceive, and they have personally gained from this, which is the definition of fraud.

I find it utterly insulting after all the ME community have been through that patients are expected to just agree to this with the perpetrators of PACE still involved. We should have been really happy to finally be getting some bio research in the UK, instead we are all scared of what they are plotting to do next and what harm will be done to the patient community this time.

 

[AndyH]

So much psychosocial bias in MEGA. It's absolutely appauling! I can't see there being any way to get MEGA changed with so many of them involved. I think it's clear who stands to benefit from the study and I don't believe it will be the sufferers for one minute.
How they have the cheek to advertise it as if it's a pure biomedical study is beyond me. The deceit started at step one, the lack of information appauling, the inclusion of White (although they cleverly left his name off the last post), the lack of engagement of sufferers dispicable, the size of the study impossible given the amount of funding, so what on earth is to come?
Good or bad petition wording, I'll sign anything to put a stop to this nonsense.
I don't think I could have anticipated a worse nightmare and mess of a study if I'd tried.
Perhaps more petitions and sending them all to Wellcome and the GMC could add weight to the sufferers plight?

 

[Jonathan Edwards]

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.

 

[JES]

So much psychococial biase in MEGA. It's absolutely appauling! I can't see there being any way to get MEGA changed with so many involved of them involved. I think it's clear who stands to benefit from the study and I don't believe it will be the sufferers for one minute.

No psychiatrist is officially involved in MEGA, so I'm unsure how much of the BPS school ideas actually will be represented in it. White retired from research, and whilst they say he still has an advisory role, to me it's a kinder way of saying he is more or less out. Crawley is not a psychiatrist, so she might even have some ideas related to the biomedical research, which after all is what this MEGA study is about, we shouldn't immediately assume the worst.

If we look at UK CFS/ME research, even with its imperfections MEGA is a step in the right direction, considering that up to this day all major UK research was basically around the BPS model and GET/CBT.

 

[Jonathan Edwards]

If we look at UK CFS/ME research, even with its imperfections MEGA is a step in the right direction, considering that up to this day all major UK research was basically around the BPS model and GET/CBT.

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.

 

[AndyPR]

Having slept on it I decided to sign it. As has been mentioned above, there is good research taking place both in this country and worldwide already, so potentially putting MEGA to sleep is not going to be the death knell of ME research, and while I would normally agree that we shouldn't assume the worst of people, the people that we are being asked to be charitable to have an awful track record - when the stakes are low is the time to be forgiving and to hand out second chances, when the stakes are high, when peoples health is at risk due to the actions of White and Crawley et al, then I'm not prepared to say "oh go on, I'm sure you meant well the first time around, have another go and see if you can get right this time".

 

[Hutan]

Crawley is not a psychiatrist, so she might even have some ideas related to the biomedical research, which after all is what this MEGA study is about, we shouldn't immediately assume the worst.

I think Crawley having 'ideas related to the biomedical research' is exactly what we are worried about.

Have you read any of her papers?

 

[A.B.]

If we look at UK CFS/ME research, even with its imperfections MEGA is a step in the right direction, considering that up to this day all major UK research was basically around the BPS model and GET/CBT.

One can interpret it differently: the failing BPS model now needs biomedical research to attach itself to. The MEGA study will generate questionnaire data relating to fatigue, anxiety, depression for 12000 patients selected according to weak criteria, from clinics likely run by people that already believe CFS to be a form of somatization (mental health problems being expressed as physical symptoms). 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.

One of the stated goals is to enhance existing treatments. We all know this means CBT and GET. The BPS proponents will not shy away from fraud to make CBT and GET look good.

The biomedical aspects of the MEGA study seem poorly thought out and overambitious. I'm skeptical it will be able to provide useful information. There is no good information on what is actually going to be measured! If they measure very basic things due to budget constraints, they may end up finding nothing! This is exactly what the BPS lobby would want to happen, and they are advising the other authors. Worringly, patient advisors will have the power to restrict testing, and we don't know how they will be chosen. If these advisors are influenced by the BPS lobby, they might remove important measures from the study, just like AFME OKed the removal of actimetry from the PACE trial. They don't have a credible patient recruitment plan. How can anyone claim to be able to stratify patients when recruitment is not random and will at best include a few percent of severely ill?

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. The BPS model is in very weak position: patients hate it, various US agencies have essentially rejected it, PACE was exposed as fraud, journalists and academics are now openly criticisng it. If we can avoid strengthening it, it will die out much sooner. Another indicator is that the quality of BPS studies seems to have further gone down since PACE, it's like they aren't even trying anymore.