Counter petition to the MEGA petition, brainstorming stage

[trishrhymes]

I am also concerned that trying to study 12000 ME patients for a total of, say, £3 million only allows about £250 per patient. This could easily be eaten up just by costs of recruitment, sample collection, data analysis, admin, investigators salaries etc. leaving less than nothing to actually carry out any biological tests.

Given that I understand the Naviaux study costs over $1000 per patient just to do the testing, and the in depth Open Medicine Foundation study of seriously affected patients is costing $20,000 per patient, I can't see how anything meaningful can be discovered.

I therefore wonder whether a tiny range of cheap tests will be done, find nothing and be used to support the psycho-social model.

Also, given that it took about 5 years to recruit 600 patients for the PACE trial, how on earth do they expect to find 12000 in any reasonable length of time? Or is that the plan - make the study so big it eats up all the research funding and effort in this country for the next 20 years?

We need an awful lot more answers before we can support this study.

I wonder whether the petition might somehow raise these issues? Or does that make it too complicated?

I agree that the involvement of the wrong people is the key issue.

 

[TiredSam]

I am also concerned that trying to study 12000 ME patients for a total of, say, £3 million only allows about £250 per patient. This could easily be eaten up just by costs of recruitment, sample collection, data analysis, admin, investigators salaries etc. leaving less than nothing to actually carry out any biological tests.

Considerable savings can be made by having your conclusions ready before the study starts.

 

[Sasha]

We need an awful lot more answers before we can support this study.

A good reason to ask questions rather than have a petition.

I wonder whether the petition might somehow raise these issues?

A petition makes demands rather than asks questions. I think it's the wrong tool for the job at the mo.

 

[BurnA]

A good reason to ask questions rather than have a petition.



A petition makes demands rather than asks questions. I think it's the wrong tool for the job at the mo.

Then do you think it was the wrong tool for them to use ?

ETA A petition doesn't have to be demanding - it can just be a show of support one way or the other. In this case it's a show of support against any pseudoscientists having anything to do with ME research and destroying people's lives further.

 

[AndyPR]

A petition makes demands rather than asks questions. I think it's the wrong tool for the job at the mo.

Potentially it can demand answers though.

 

[slysaint]

Politics aside, IMO The whole idea of the MEGA study of ME/CFS is too big, too vague, and too costly (in terms of what benefits it might produce). But this is typical of how we do things in the UK. IE do nothing for ages, mess about with things when they go wrong, waste money on short-term idiotic 'solutions', then come up with some grand scheme that will take forever, cost a fortune and ultimately prove what you knew in the first place.

It would be far better to fund smaller projects, picking up where Naviaux's research left off, preferably liaising with him and Ron Davis.

 

[Sasha]

Then do you think it was the wrong tool for them to use ?

Sorry, who?

ETA A petition doesn't have to be demanding - it can just be a show of support one way or the other. In this case it's a show of support against any pseudoscientists having anything to do with ME research and destroying people's lives further.

That's still not comms, any more than MEGA demanding support and only allowing people who support the project to be counted (by signing their petition) was comms.

Neither side is communicating. I think it would be good if patients opened comms, given that MEGA have failed to do so. Set the example.

 

[BurnA]

Sorry, who?

MEGA

 

[Sasha]

Actually, he never said it was other researchers. Just researchers. The one he'd probably be most worried about is Dr Mark Hallett (and the other two people from his team), who has managed to get a fairly senior position for someone involved in so much low-quality and self-sabotaged research.

That's not how I read his response. This is from the transcript of his interview with Zaher Nahle (I've broken it up a lot for readability):

Team-members of the study.... So there are a lot of people who are on our.... Full-time people are only going to be a nurse and a coordinator, but everybody else who's on this study is actually lending their time towards this study.

They are doing it in addition to whatever else they've been doing, so those responsibilities haven't gone away but they are taking on additional responsibilities for this study. So in all, there are close to about 150 or so investigators who are giving variable amounts of time towards this study here.

There's lots of people involved. And.... But I think what has happened is because media were just so... and it started scrutinizing the few names I put up over there, that a lot of people now come to me and say that, “You know what, I don't want you mentioning my name,” and then the other people said, “I don't want to have anything to do with it, I've got enough things that I'm doing”.

And so that's become a bit of a challenge for me especially when there are very prominent scientists that I've approached that never will say no, but then they become reluctant to answer emails and so on, so you're going to kind of start getting a feeling that people feel that, do they really want their name out there on these kind of things?

So, I think people have to be a little bit careful as to how critical you become. You can end up....We're here to try and help. You can end up antagonizing all these people and they are, you know, busy doing other things. They're all.... There's no reason for them.... You can't force people to study your disease.

People have to do it because they think it's important to study. So you've got to think that we're on the same team. And we want to really try and help, but we can't do that if the very people you want to help become antagonistic towards you.

So the other thing is there are a lot of comments we've received about biases and stuff like that. So if you have a large team and you have hundreds of people studying this disease you can't just go and do a litmus test on everyone and say that, “OK, well, you have a bias. We're not going to let you study this disease”.

If you've got to eliminate all kinds of people, you’re never going to be able to study anything. Rather, you do as you're designing your study whereby you don't have to worry about people's biases. I think that's the way to do these things. If I, you know....

I‘ve made my career studying AIDS. If I said “OK, I'm going to do a litmus test on everybody who study AIDS in this country and if you have any kind of adverse views about gay people and this, that and the other, you know, you shouldn't be studying this”. And we'll never have made any kind of advances.

I think we made lots of advances and we know that people have all kinds of biases and we shouldn't worry about those kind of things. What we really need to do is focus on the disease and on the patients and try to get to the bottom of the disease. And that's what my goal really is.

Transcript here: http://www.meaction.net/wp-content/uploads/2016/04/Dr-Nath-SMCI-webinar-transcript-reformatted.pdf

Whether you read that as him not managing to get additional people in or not, the risk is clearly there - and MEGA is at an earlier stage than the intramural study was, so the risk of people getting scared off is considerably greater.

 

[Sasha]

Potentially it can demand answers though.

Petitions tend to be quite short things, and I think you'd need to get quite a bit of context in so that MEGA could understand why the questions you're asking are reasonable questions.

 

[Sasha]

MEGA

I think MEGA used the petition platform because it's well suited to asking a single thing and getting people to click a button. But I think they have asked for support too early - they should have had dialogue with patients first.

 

[Binkie4]

Am concerned that if something doesn't come out fairly soon we might lose the very many people who complained about the bio psychosocial school on the AfME Fb page in the last 2 days. I read names there that I haven't seen involved in advocacy before. It would be great to keep them.

Still thinking........but White and Crawley must go Imo. They were listed as the ME/cfs experts- not appropriate after their behaviour to pwme. They seem to have access to a " power elite" and never to be held accountable.

 

[Boronia]

A good reason to ask questions rather than have a petition.



A petition makes demands rather than asks questions. I think it's the wrong tool for the job at the mo.

There doesn't seem to be any avenue for asking questions or expressing concerns, which is worrying in itself.

 

[Sasha]

Am concerned that if something doesn't come out fairly soon we might lose the very many people who complained about the bio psychosocial school on the AfME Fb page in the last 2 days. I read names there that I haven't seen involved in advocacy before. It would be great to keep them.

Best not to panic and produce something poor in a rush to grab a bunch of people complaining on the AfME site.

Still thinking........but White and Crawley must go Imo. They were listed as the ME/cfs experts- not appropriate after their behaviour to pwme. They seem to have access to a " power elite" and never to be held accountable.

I'd be amazed if anything we can do will get anyone specific turfed off MEGA. Better to open comms and try to influence the study for the better - try to tackle the issues that White in particular has behaved badly over in PACE - so ask for guarantees on open data, sticking to protocol-specified analyses even if additional ones are brought in later, getting sensible inclusion criteria, etc.

Raise the question of the involvement of White and Crawley by all means but I think we need to be realistic about how things look to these MEGA scientists and how they're used to acting in a "collegiate" way - and a way that is influenced by the politics within their group. Remember Nath and the intramural study.

W/C might get the push at some point but it's not likely to be in a way that links it obviously to pressure from patients (even if we've had an effect).

 

[Sasha]

There doesn't seem to be any avenue for asking questions or expressing concerns, which is worrying in itself.

That's why we need to open comms from this side. They don't even have a website. Crazy.

 

[Liz_999]

I would also see the petition as a way to express support, but support for the study/research.

Unfortunately, I cannot sign the MEGA petition as it is, so a different petition that points out the problems with the advisory board would be a good alternative IMO. Personally, I would prefer if this was not done in a confrontational manner. The advantage of a petition would be that it would show the number of people supporting it.

An open letter is an excellent idea as well. The two are not mutually exclusive, i.e. both could be done and if coordinated, it would probably have a bigger impact.

 

[Sasha]

I would also see the petition as a way to express support, but support for the study/research.

Unfortunately, I cannot sign the MEGA petition as it is, so a different petition that points out the problems with the advisory board would be a good alternative IMO. Personally, I would prefer if this was not done in a confrontational manner. The advantage of a petition would be that it would show the number of people supporting it.

An open letter is an excellent idea as well. The two are not mutually exclusive, i.e. both could be done and if coordinated, it would probably have a bigger impact.

One could have a petition expressing support for the open letter. Best not to have two things on the go, IMO.

 

[Woolie]

The bizarre psychosocial model (BPS) h

 

[BurnA]

Raise the question of the involvement of White and Crawley by all means but I think we need to be realistic about how things look to these MEGA scientists and how they're used to acting in a "collegiate" way - and a way that is influenced by the politics within their group. Remember Nath and the intramural study

Science is Realistic.

White and Crawley are not realistic nor are they scientists.

I understand there is an air of desperation for research but the community have spent 4 years taking down PACE and we are still not out of the woods. We may never recover from the harms of PACE.

To turn around now and support anything to do with PACE authors is just ludicrous.

Worrying about whether or not a researcher thinks this or that is trivial. It's time for some perspective.

Could you look David Tuller in the eye and say thank you for all your work defending science but hey now I support research by White and Crawley after all. Cheers.

 

[snowathlete]

There may be a more effective alternative to a petition, though I am not against it. Whatever form action takes I think we need to bend over backwards to come across as reasonable. We should start by saying that we would welcome the MRC funding biological research, and patients want to support such efforts. But, patients have followed the research and the politics in CFS research in the UK and have been badly let down on multiple occasions and want to avoid that happening again. Patients want to ensure biological research is a success and money well spent. It is worth the effort for researchers to address these concerns, and show their respect for patients, as then patients will provide significant support. For patients to support research like this certain things need to happen.

- No one involved or still in vocal support of the misleading and now discredited PACE trial to be involved.
- No one who has taken part in a campaign to stigmatize patients and critics.
- No one who promotes behavioral models of the disease and promotes GET and CBT (which are completely in opposition to what 99.99% of patients say about their disease) - we shouldn't say "no psychiatrists", or anything like that.
- No charity who took part in PACE but has yet to apologize for their role in it
- No charity that promotes GET and CBT
- No one who has failed to inform participants in previous research of their conflicts of interests.

Before being asked to support research, patients should be given adequate details of what they are being asked to endorse and be given guarantees about certain things to protect their interests:
- Data sharing
- Publishing a protocol and sticking to the protocol.
- That researchers will, as much as is reasonably possible, actively ensure that press coverage of results is accurate and reflects the findings. A no spin guarantee.
- A promise that researchers will correct factual errors in journal papers when pointed out, as per normal expectations.
- Guarantee not to use Oxford criteria.
- Objective measures in preference over subjective measures, wherever possible.
- Patient input and engagement, not only through charities.

If patients are being asked to sign a petition to endorse a piece of research, I think a mechanism must be provided for the same people to withdraw their endorsement in the future and for that to be publicly visible. Else, it's a bit like asking someone to write a blank check.