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Counter petition to the MEGA petition, brainstorming stage

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13,774
Trying to work on the wording of a possible petition doesn't prevent other attempts to get more information about the study and why White and Crawley are involved.
 
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2,087
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.

But the intention is simply to express dissatisfaction at the involvment of certain people. Regardless of how much money this may or may not get I will never support it with those people involved.

More information would be nice too, but that wasn't the main reason.

If there are better ways of expressing this displeasure then I will support that too, but I'd like a means of doing this, at the moment the only feedback mechanism is to support the petition, which is not necessarily an accurate reflection of some patients opinions.

Thanks.
 
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24
An alternative would be to vote for the MEGA petition and use the comment to register concerns. I just had a look at the comment section and have seen a few people who have done that.

Comments can also be upvoted/liked and are by default sorted to show the top rated first. Critical comments I have seen have not been upvoted/liked yet.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
An alternative would be to vote for the MEGA petition and use the comment to register concerns. I just had a look at the comment section and have seen a few people who have done that.

Comments can also be upvoted/liked and are by default sorted to show the top rated first. Critical comments I have seen have not been upvoted/liked yet.
Excellent idea. Now that 3-4 good comments have been made, anyone can join change.org with just an email address, then upclick the good comments without signing the petition. If we can get those comments to the top it will send our message without adding to the signature total. I've just done it!

https://www.change.org/p/support-th...ts-application-to-major-uk-research-funders/c

Here are some of the comments you might like to bump up:

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24
@BurnA That's pretty much what I'd like to do: showing my support while also making clear that I'm worried about the inclusion of certain people and patient representatives.

Of course, it may be that those who started the petition won't read the comments or ignore them.

@TiredSam I have done just that and upvoted some of them. :)
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
The top three comments (which show on the main page) are currently:

I am signing on the understanding that no one Invovled with the PACE trials are involved.

I now wish to withdraw my support after reading Peter White's comments in the Guardian.

There is no doubt that research is lacking but to back the same horse and follow the same strategy that gave us PACE and MAGENTA is woeful. No mention of the entry/diagnostic criteria, no mention of objective bio-markers. An expensive study to result in yet another PACE debacle. ME flares in response to exertion and there are physiological changes etc....its not random flares. In calling for research it needs to be based on the CCC and or ICC criteria if in fact ME is to be studied. Objective measures are required not yet another "survey" based fatigue study. Invest in ME has ground breaking research as do the USA and Australia. Meanwhile in the UK????
 
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2,158
The third of the comments Hutan quotes seems a little confused. I thought the idea was a large scale study of genome, epigenetics, proteomics and metabolic.

My concern is the involvement of White and Chalder who may exert influence to use Oxford criteria, ie make it a fatigue study, not an ME study.

Also the scale suggests breadth rather than depth, which for an exploratory study on a budget means likely missing important stuff.

And the time scale for such a vast study means no results for years,....

Sorry, rehearsing old arguments here.

What I meant to say is I like the idea of not signing, but up ticking comments we like. I'll have a go tomorrow when/if I'm properly awake.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Excellent idea. Now that 3-4 good comments have been made, anyone can join change.org with just an email address, then upclick the good comments without signing the petition. If we can get those comments to the top it will send our message without adding to the signature total. I've just done it!

https://www.change.org/p/support-th...ts-application-to-major-uk-research-funders/c

Here are some of the comments you might like to bump up:

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View attachment 17566

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View attachment 17569

View attachment 17570

This looks to me a more productive approach.
 
I have started looking for ways to contact the CMRC and/or the MEGA team direct to express my concerns and, unless I am missing something incredibly obvious, there is no straight forward way to do that.

My suspicion is that the charities that are involved are meant to deal with us pesky patients but so far there is no response to a query regarding a contact route on the AfME Facebook page, I have, this morning, contacted ME Research UK asking the same, perhaps @charles shepherd can offer any thoughts? I'm not going anywhere near AYME, even if I had two 10 foot bargepoles which I could operate remotely from a safe distance.

The only route I could see at the moment would be to take the list of researchers from the original petition and look for ways to contact them., and at what point does that then become harassment?

And on a personal level, I am shattered at the moment, it may be that I'll have to drop this soon.
 

Jan

Senior Member
Messages
458
Location
Devon UK
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.


Do we have any idea why they feel they need to study such a huge amount of patients, it seems like a ludicrously high amount?
 

Jan

Senior Member
Messages
458
Location
Devon UK
I've just seen this on the Iime fb page https://www.facebook.com/groups/5804522506/

Tony Bradstock I'm no legal mind, but how would it be if White et al were taken to court to answer the question of fraud ? Would the very fact of them facing charges exclude them from involvement in MEGA ? I only ask the question, but as they have caused doctors to be suspended pending investigation, would the same not apply ?

Any thoughts?
 
Hi all, I'm holding fire on this at the moment for a short while.

I have received this response from Charles Shepherd regarding contacting the CMRC;
Charles Shepherd said:
If you want your correspondence to be seen by members of the CMRC Board and placed on the Agenda for the next CMRC meeting I suggest you send it to Sonya Chowdhury (at AfME) who deals with the Agenda items. I will be making some personal comments on the MEGA study tomorrow (Monday).
So I want to see Dr Shepherds comments first and, probably being overoptimistic, I want to see if we get some kind of comment from AfME. I don't know when the next CMRC meeting is, though I suspect it won't be for some time, I have asked for this information though.

I can also see that the original MEGA petition progress, as I suspected, has slowed dramatically. Four days ago it had reached 1,500 signatures, as at the time of this post it has got to 1,980. Also of note is that it appears that signatures are not limited to the UK, as the second most liked comment is from someone in Queensland, Australia.