Counter petition to the MEGA petition, brainstorming stage

[trishrhymes]

Hi all, I think perhaps there is so much confusion about what a counter petition should say, and what benefit or damage it might do that it might be best to abandon the idea and simply discourage people from signing the original petition if we don't like it.

I take Sasha's point that we are floundering a bit and in danger of making suggestions that make us a bit of a laughing stock to scientists. By getting caught up in the flaws of the PACE trial, and trying to ensure they are not repeated, we are in danger of saying things like 'no outcome switching' which are irrelevant to a trial that is exploring biomedical aspects of a disease, not testing a treatment on patients.

Perhaps we should concentrate on communicating in whatever way we can to the scientists involved (I mean the real scientists, not the biopsychosocial crowd) in the proposed study that it is vitally important that they divorce themselves from White, Wessley, Crawley etc. and use an internationally agreed definition for ME. It does worry me that that lot are being treated as experts on ME.

I would also want to encourage the scientist to communicate with some of the good American metabolomic, genomic etc researchers so they can co-ordinate research.

It would be a pity to put off scientists interested in carrying out a biomedical study of ME by being too critical. We need to find a way of making it clear that we want their sort of research, we just don't want the wrong people involved.

 

[AndyPR]

How about a, relatively, simple "By signing this petition, I support biomedical research for M.E. however I strongly object to any inclusion of any researcher who supports, or has previously supported, the biopsychosocial model of M.E. and it's associated 'treatments' of Graded Exercise Therapy and Cognitive Behavioural Therapy."

The original petition was started for people to demonstrate support for the MEGA project, ours is to show support for biomedical research and our rejection of the BPS school.

I have no illusions about the level of impact that this will have, it will probably be ignored by the powers-that-be, but at least our opinion will be expressed somewhere and it might add to the pressure on White et al.

 

[BurnA]

I take Sasha's point that we are floundering a bit and in danger of making suggestions that make us a bit of a laughing stock to scientists.

All good points.
I think Its normal to have differences in a brainstorming session, I am not worried about being a laughing stock - if only the scientists worried as much about being a laughing stock we wouldn't be in this situation....I don't think AIDS patients worried about being a laughing stock when they were advocating.

How about a, relatively, simple "By signing this petition, I support biomedical research for M.E. however I strongly object to any inclusion of any researcher who supports, or has previously supported, the biopsychosocial model of M.E. and it's associated 'treatments' of Graded Exercise Therapy and Cognitive Behavioural Therapy."

The original petition was started for people to demonstrate support for the MEGA project, ours is to show support for biomedical research and our rejection of the BPS school.

I have no illusions about the level of impact that this will have, it will probably be ignored by the powers-that-be, but at least our opinion will be expressed somewhere and it might add to the pressure on White et al.

I think this is a very good idea. It's important to ask for one thing clearly rather than many things halfheartedly.

The only point I'd make is there is no attempt in the proposal to explain why we object to the inclusion of these people. Of course we know why, but for an outsider it mightn't be so obvious.
My proposal was maybe a bit long winded but it did refer to other sources which at the very least shows that it's not just a few disgruntled patients complaining again. I am not sure how important that is ?

It's not easy is it !

 

[AndyPR]

The only point I'd make is there is no attempt in the proposal to explain why we object to the inclusion of these people. Of course we know why, but for an outsider it mightn't be so obvious.
My proposal was maybe a bit long winded but it did refer to other sources which at the very least shows that it's not just a few disgruntled patients complaining again. I am not sure how important that is ?

It's not easy is it !

Lol, nope, it's not.

I take your point but we won't be sending it to ousiders, or asking outsiders to sign it. Sufferers and their supporters will be those signing it, and it will be sent to the CMRC/MEGA in one form or another who should know why we object. Perhaps a brief explanation maybe, but the more concise we can keep this the better I think.

 

[trishrhymes]

if only the scientists worried as much about being a laughing stock we wouldn't be in this situation..

I said scientists, not charlatans! As far as I'm concerned the PACE researchers don't have a clue what real science is.

I'm also afraid that this dispute we have about the proposed trial will only be known and understood by very few people - not their fault, just most ME sufferers have enough to cope with, without getting involved in all this discussion.

What I'm afraid might happen is the original petition gets, say 3000 signatures, and our protest one gets, say, 100 signatures, and ends up being counterproductive - taken as evidence that the vast majority of ME people are on their side.

 

[mfairma]

There's also petition fatigue. I haven't signed one in a while. Every issue is important and it would be nice to have a petition countering their inclusion, but too many petitions tire the masses. Just something to consider. Maybe a poll or consensus statement or some other measure?

 

[BurnA]

There's also petition fatigue. I haven't signed one in a while. Every issue is important and it would be nice to have a petition countering their inclusion, but too many petitions tire the masses. Just something to consider. Maybe a poll or consensus statement or some other measure?

Yes. Despite my enthusiasm on this thread I would also be in favour of other methods if they could be as or more effective.

The question is how ?

 

[BurnA]

What I'm afraid might happen is the original petition gets, say 3000 signatures, and our protest one gets, say, 100 signatures, and ends up being counterproductive - taken as evidence that the vast majority of ME people are on their side.

There is nothing we can do about that though.

I simply cannot endorse any study with White or Crawley involved. I want to be able to state that loudly and clearly and I dont mind if one or none join me, I won't change my opinion. I also think it is disrepectful to all the patients harmed by GET to endorse such a study.

I don't care if people laugh at me, or try to silence me be cause of fear, I want to get better and I recognize that that can only happen with good biomedical research led by good scientists, with no involvement of pseudoscientists.

 

[Esther12]

I thought that the last draft I saw from @BurnA was a decent foundation, but maybe it needs more tidying up and even more details.

IMO we want a clear and easy to understand intro for the patients to give them an explanation of what we want, but then also we need text aimed at the research community, who will be instinctively hostile to the idea of a petition from patients criticising specific researchers in this way. Having something that explains our concerns to them is probably a good thing and could be quite tense and technical.

 

[TiredSam]

Anyone contacted IiME to see if they're thinking of a petition? They've already produced one brilliant text, maybe they have a view about whether there should be a petition and if so how it should be worded?

 

[AndyPR]

Anyone contacted IiME to see if they're thinking of a petition? They've already produced one brilliant text, maybe they have a view about whether there should be a petition and if so how it should be worded?

I started a similar discussion in the Invest in ME Facebook group brainstorming a potential petition and I've not had them say that they would/might do one - I can see the argument that it would be better a patient led initiative than a charity led one, also if it all goes seriously wrong then they aren't to blame

 

[trishrhymes]

I simply cannot endorse any study with White or Crawley involved. I want to be able to state that loudly and clearly and I dont mind if one or none join me, I won't change my opinion. I also think it is disrepectful to all the patients harmed by GET to endorse such a study.

I don't care if people laugh at me, or try to silence me be cause of fear, I want to get better and I recognize that that can only happen with good biomedical research led by good scientists, with no involvement of pseudoscientists.

Totally agree with you about not endorsing such a study with these people involved.

I'm not sure who you think is laughing at you or trying to silence you. I certainly wasn't and I hope you don't think anyone on here is doing so. We're all on the same side here, just trying to figure out the best way forward.

 

[Esther12]

They do loads of good work, but Invest in ME can be more niche in their approach than it would be best to be with this. We want something that would appeal to everyone with concerns about White and Crawley's involvement,

 

[A.B.]

Rumor is that Coyne will speak with Davey Smith. I am optimistic.

We do need some way to communicate with Davey Smith.

I suspect that White and Crawley are also filling some intermediator role between researchers and patients. If we can offer an alternative then there should be little reason to keep White and Crawley around, assuming that the remaining people haven't been compromised by the bizarre psychosocial model.

@charles shepherd do you have any ideas on how to establish more direct communication with Davey Smith?

PS: I find the arguments against a petition at this time convincing. Seek dialogue first. If that fails, then it's petition time.

 

[BurnA]

Totally agree with you about not endorsing such a study with these people involved.

I'm not sure who you think is laughing at you or trying to silence you. I certainly wasn't and I hope you don't think anyone on here is doing so. We're all on the same side here, just trying to figure out the best way forward.

Oh yes don't worry, I was just venting, nothing aimed at you or anyone !

Rumor is that Coyne will speak with Davey Smith. I am optimistic.

You dared to mention Coyne.

There is another angle here, and that is maybe some scientists like Davey Smith would rather not have anything to do with White. A petition might be exactly what they want from patients so that they have an excuse not to. Who knows.

 

[Large Donner]

The ME Association needs to issue a statement on behalf of its members to the proposed funders saying that they simply cannot endorse this study with Peter White and Crawley on it.

Simple.

 

[Hutan]

I suspect that White and Crawley are also filling some intermediator role between researchers and patients. If we can offer an alternative then there should be little reason to keep White and Crawley around, assuming that the remaining people haven't been compromised by the bizarre psychosocial model.

The impression I got from the CMRC conference was that Crawley and White were valued for their ability to bring in funds. If they are seen as the key to millions of pounds of research funding, then it may be hard to convince others to get rid of them.

I still support the idea of a counter petition. Perhaps one that calls for the mistakes of PACE to not be repeated and that for none of the PACE decision makers and ongoing supporters to be involved in ME research going forward. I am surprised there haven't been more signatories to the anti-GET petition though. Perhaps that doesn't bode well for the success of another petition - or perhaps it's just that many key people have been busy on the Millions Missing up until now.

I don't think we need to worry about any calls we make seeming to be naive with respect to science protocols. There are plenty of experienced people here to polish statements on those matters.

We do need to know what Davey Smith is thinking - and if our needs and his can align better. Maybe @charles shepherd and/or @Jonathan Edwards could help? (Sorry if that possibility has already been covered, remembering and thinking feels like wading through mud this morning.)

 

[Jonathan Edwards]

We do need to know what Davey Smith is thinking - and if our needs and his can align better. Maybe @charles shepherd and/or @Jonathan Edwards could help? (Sorry if that possibility has already been covered, remembering and thinking feels like wading through mud this morning.)

I personally think an anti-petition would be an own goal. I am dubious about the motives involved in the original petition but an anti-petition would seem to me simply acknowledge the existence of the original and put potential funders' backs up. I think there would be much better ways of making it clear that patients would like to know more about the study before signing up to it.

 

[worldbackwards]

Rumor is that Coyne will speak with Davey Smith.

Do you think he'll use his legendary charm if they disagree about something?

 

[AndyPR]

I personally think an anti-petition would be an own goal. I am dubious about the motives involved in the original petition but an anti-petition would seem to me simply acknowledge the existence of the original and put potential funders' backs up. I think there would be much better ways of making it clear that patients would like to know more about the study before signing up to it.

Well, as things stand at the moment, any petition would most likely have wording of support for biomedical research but call for exclusion of BPS researchers, so, potentially splitting hairs, I wouldn't consider that an anti-petition, more an alternative petition as an indication of what many patients would be willing to support.

Having said that, if there are better ways of getting our views across then I'm more than willing to consider them, unfortunately at the moment I don't see any. The advantage of a petition is that it can put a number on the level of support, that is obviously why MEGA wanted to use one in the first place, and even if we had direct lines of communication with anybody of substance within CMRC/MEGA, or the appropriate organisation, without something in place to prove a claim of "a lot of people are upset about the inclusion of White and Crawley" it would just be my word, which I would anticipate is easily discounted.