Counter petition to the MEGA petition, brainstorming stage

[Sasha]

@BurnA - I didn't want to download a PDF from an unknown source (your computer may have viruses that you're not aware of) but if Esther's quote here is correct:

"The MEGA team is comprised of researchers who have aligned their beliefs to a biopsychosocial model of ME and who support the published findings of the PACE trial."

The usual meaning of "comprised of" is "consists of" and so you seem to be saying that MEGA consists entirely of BPS researchers.

Is that really what you think?

Very hard to talk about the harassment narrative in an accurate way that doesn't go beyond the documented facts, as you seem to have done.

I'm sorry, but this is the kind of petition that worries me. If it contains errors and exaggerations it won't reflect well on our community or help us get what we want. These things are not best done in haste.

 

[BurnA]

@BurnA - I didn't want to download a PDF from an unknown source (your computer may have viruses that you're not aware of) but if Esther's quote here is correct:



The usual meaning of "comprised of" is "consists of" and so you seem to be saying that MEGA consists entirely of BPS researchers.

Is that really what you think?

Very hard to talk about the harassment narrative in an accurate way that doesn't go beyond the documented facts, as you seem to have done.

I'm sorry, but this is the kind of petition that worries me. If it contains errors and exaggerations it won't reflect well on our community or help us get what we want. These things are not best done in haste.

Thanks for the suggestions. I wouldn't worry too much, i am throwing this out there for comment - of course it can be improved on and may contain errors but everything starts somewhere. The more comments the better.

 

[BurnA]

I thought that was good. There are lots of different approaches that could be taken with this though, and I don't know what the best one would be.

Some possible 'tweaks':

"The MEGA team is comprised of researchers who have aligned their beliefs to a biopsychosocial model of ME and who support the published findings of the PACE trial."

That's a difficult sentence to get right. When the biopsychosocial model can mean so many different things to different people (and can be defined in a way that rejecting it is absurd), maybe try this edit:

"The MEGA team is comprised of researchers who have made exaggerated claims about the benefits of the biopsychosocial model of ME and the efficacy of biopsychosocial treatments assessed as a part of the PACE trial."

Maybe the section on the SMC harassment minutes needs to be slightly reworded too, so that it's more a summary of them than an interpretation of them, eg they didn't actually state that they "used claims of patient harassment as a mechanism to downplay legitimate scientific concerns raised by patients".

Thanks - I had similar reservations but couldn't think of appropriate wording.

Tweaked to rev 1. Plenty more tweaks to come i'm sure.
BTW - I dont want to take this away from @AndyPR - this is just what i would say, but others mightn't agree, so far be it from me to make exaggeratted claims ...

 

[AndyPR]

BTW - I dont want to take this away from @AndyPR - this is just what i would say, but others mightn't agree, so far be it from me to make exaggeratted claims ...

I'm only operating at "make snarky, bitchy comments on social media" level at the moment, but what I've looked at seems good so far, and if other people are also having input then that was the intention of this thread. But also I would like to see any dissenting voices if there are any, if anybody disagrees but doesn't speak up, we can't take your views onboard.

 

[Hutan]

When the biopsychosocial model can mean so many different things to different people (and can be defined in a way that rejecting it is absurd)

Yes, it is quite likely that a large percentage of scientists who are very competent in their fields believe that emotional stress can contribute to the onset and worsening of ME (and other illnesses). There's no point in preventing those scientists undertaking, for example, a genomic study.

It's the ongoing support of PACE and its findings of the effectiveness of GET and CBT that is the worry - as that demonstrates a mind that is so biased that it can not engage in scientific rational thought.

I support the idea of a second petition that is a calm call for the key requirements of good research, as outlined by a number of people already in this thread. It needs to be reasonable enough that many people who have already signed the MEGA petition simply because they want to support biological ME research feel able to sign this one too in order to indicate conditional support.

 

[BurnA]

For anyone who hasn't read the attachment I tweaked it ever so slightly but will post it here for general critique :

We the undersigned are wholeheartedly in favour of well-designed biomedical research into Myalgic Encephalomyelitis (ME) and support the general intentions of the MEGA research.

However, we would like to express our reservations about the proposed makeup of the current MEGA team and state that we do not support this research proceeding with the current members.

The MEGA team is comprised of some researchers who have made exaggerated claims about the benefits of the biopsychosocial model of ME and the efficacy of biopsychosocial treatments assessed as a part of the PACE trial.

The design of the PACE trial was never robust,[1] however the subsequent changes to the PACE trial protocol raised even more concern from patients, doctors and academics around the world, as documented in an open letter to The Lancet and its editor Richard Horton.[2]

To date, this letter has gone unanswered, with the consent of the PACE trial authors.[3]

A recent analysis of the raw data from the PACE trial has revealed that patient improvement and recovery rates from CBT and GET were grossly inflated in published PACE papers when compared to the original trial protocol. Indeed, the recovery rates have been shown to be not statistically significant.[4] We understand that errors can happen in life, however it is a measure of a person’s character and scientific integrity to acknowledge their errors and take action to rectify any harm these errors may have caused. To date, the PACE trial authors have failed in this regard with one author recently claiming that the re-analysis “makes not a ha’porth of difference”.[5]

It is also documented that researchers on the proposed MEGA team have made claims of patient harassment, which have discredited members of the patient community. We believe that harassment is never justified nor indeed is it appropriate for FOI requests to be described as harassment. [6]

An apology from the PACE trial authors to the patient community is long overdue. Until then, we cannot support any research which involves a member of the PACE trial team, nor any researcher who supports the current published findings of the PACE trial.

We value the World Health Association Declaration of Helsinki and request that all scientists involved in ME research have abided by this declaration in the past and will continue to do so in the future. Any scientist who has shown or continues to show a disregard to The Declaration of Helsinki should have no involvement in ME research.

We welcome any proposals you may have to alleviate our concerns.


[1] http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/

[2] http://www.virology.ws/2016/02/10/open-letter-lancet-again/

[3] http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/

[4] http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/

[5] http://www.bmj.com/content/354/bmj.i5053

[6] Science Media Centre CFS meeting minutes 31 Jan 2013

 

[TiredSam]

An apology from the PACE trial authors to the patient community is long overdue. Until then, we cannot support any research which involves a member of the PACE trial team, nor any researcher who supports the current published findings of the PACE trial.

Don't see much point in demanding an apology, they won't apologize and then we'll be in a trench. I also wouldn't support research involving a member of the PACE team even if they do apologize, and this text implies that I might. Even if Crawley and White apologize and retract I wouldn't want them anywhere near ME research.

 

[Esther12]

Just a little language thing for the bit Sasha pointed out:

The MEGA team is comprised of some researchers who

"The MEGA team includes researchers who"

Don't see much point in demanding an apology, they won't apologize and then we'll be in a trench. I also wouldn't support research involving a member of the PACE team even if they do apologize, and this text implies that I might. Even if Crawley and White apologize and retract I wouldn't want them anywhere near ME research.

As you say, very difficult to see them apologising. Maybe asking for one makes the request seem gentler though?

I'm not sure how 'gentle' we want to be with them!

 

[BurnA]

Just a little language thing for the bit Sasha pointed out:



"The MEGA team includes researchers who"



As you say, very difficult to see them apologising. Maybe asking for one makes the request seem gentler though?

I'm not sure how 'gentle' we want to be with them!

Yes it's hard to get the right balance.
I have no doubt that they wont apologise but the last line allows us to reconsider our position if they make any offering. I have no intention of supporting them as long as White is involved - the main reason for this petition is that the other researchers understand our position ( which any reasonable minded person would )
Its worded more with them in mind than anything else.

 

[Woolie]

My only worry here would be regarding how PEM would be ascertained. "Do you feel tired after activity?" is not PEM but it seems like something White/Crawley would come up with.

Yea, PEM won't save us from the BPS crap.

The concept of "PEM" can be integrated quite nicely into the PACE researchers' model of CFS. Remember, we are all just terribly unfit. So, when we exercise beyond our usual levels, we experience the symptoms of an-unfit-person-having-overdone-it. And we are too stupid and mentally dysfunctional to realise we've just overdone it a bit, so we cry "illness".

Hey presto - PEM is totally explained!

 

[Emma]

If anyone launches a good counter petition, asking that CCC be used, that all researchers with a history in research involving CBT, GET, or psychological/BPS models of the disease mechanisms are excluded, and that data be shared -- I would sign that and share widely!

 

[eafw]

This MEGA study seems like a way to suck up all the funds and effort in the UK (for the next however many years) into useless studies that will be nothing more than a way for these researchers to churn out a load of easy, but meaningless papers.

I'm sure that Prof Davey (who I'm completely unimpressed with btw, thought he was supposed to be some sort of whizz kid type?) and his new pal Prof White will be feeling very pleased with themselves as they throw around the latest buzz words: "big data !" and watch their careers march on as those of us suffering are left in the ditch as usual.

 

[slysaint]

My only worry here would be regarding how PEM would be ascertained.

Like this:
http://solvecfs.org/post-exertional-malaise-perception-and-reality/

 

[trishrhymes]

While I think @BurnA makes lots of good points, I think perhaps it's a bit too detailed for a petition. I like the example posted earlier:

Suggested wording:

To the United Kingdom Medical Research Council:

We, the undersigned, hereby register the following concerns about the proposed M.E./CFS Epidemiology and Genomics Alliance (MEGA) research study, which is being promoted by the charities Action for M.E. and M.E Research UK

1. That the full trial protocol should be published and a formal consultation subsequently undertaken, with patients,
advocates and other interested parties, before any application for funding is made to the Medical Research
Council.

2. That any researcher who has previously been involved in the now discredited PACE trial (or who has supported
the bio-psychosocial model of M.E /cfs) should not be involved in the study.

3. That the illness definition which is used to recruit patients onto the trial shall be the Canadian Consensus criteria
(or a derivative thereof), which includes Post-exertional malaise (worsening of symptoms) as a mandatory
requirement for inclusion.

4. That the researchers involved in the study shall fully commit to the principles of data sharing with regards to any published work and complete transparency with regards to the conduct of the trial.

5. That the trial will be conducted in accordance with the published trial protocol, with no post-hoc changes or subsequent deviations.

 

[Sasha]

@trishrhymes - that petition you're quoting is so divorced from the realities of how even a well-conducted study is run that we'd be a laughing stock. No post-hoc changes? That's abnormal, unnecessary, and would get in the way of good science. The issue with PACE was the manner in which they made the changes, and their failure to report results according to the original protocol.

I'm sorry, but nothing happening on this thread is giving me any confidence at all that any petition is going to do anything other than make us look confused, ill-informed and unreasonable.

Doing something like this properly needs people with the relevant expertise and experience in how to do it - even if a petition was a good idea at this stage, which it isn't, IMO.

I'm very worried that a big, knee-jerk response from some patients is going to bring the whole thing crashing down.

There are other diseases that all these people could be studying, with their metabolomics and their ability to pull in millions. Are we really so confident of the strength of our position that we're going to risk destroying the whole project?

I'm not. I see no need at all for this headlong rush into a high-risk petition strategy that could wreck things for UK PWME for another twenty years.

Comms! We need to open a dialogue, and stop shouting demands at each other.

 

[BurnA]

There are other diseases that all these people could be studying, with their metabolomics and their ability to pull in millions. Are we really so confident of the strength of our position that we're going to risk destroying the whole project?

I'm not. I see no need at all for this headlong rush into a high-risk venture that could wreck things for UK PWME for another twenty years.

I think you've missed the point.

The reason for the petition is we don't want to wreck things for PWME for another 20 years.

If they could pull in millions so easily we wouldn't even be having this conversation, they are the ones who requested patients petition for funding into a study with absolutely no details whatsoever. Nobody knows what they are supporting but they still signed a petition - that is bizarre.

I think you are over playing the impact any petition will have, if only we had the power to stop dodgy trials from taking place - that would be a great world to live in. Sadly the best a petition can hope for is register our displeasure and give people reason to pause and think. Which on the balance I still think it's worth it.

Everybody voiced their displeasure at the article in the guardian by PWhite but now it's time to turn a blind eye and let him continue research into ME? No thanks.

 

[Sasha]

I think you've missed the point.

No, I really don't think so.

The reason for the petition is we don't want to wreck things for PWME for another 20 years.

That's it's aim but I think it's more likely to achieve the opposite.

If they could pull in millions so easily we wouldn't even be having this conversation,

They are big names, and when they apply for big money, they're generally going to be successful. Getting an indication of support from patients seems to be part of the new "patient involvement" funding tick-box environment. If they don't get support from ME patients, they can go and find patients with a less controversial disease who won't drag them into this sort of aggro.

they are the ones who requested patients petition for funding into a study with absolutely no details whatsoever. Nobody knows what they are supporting but they still signed a petition - that is bizarre.

Nothing bizarre about it - patients want biomed science and either didn't notice all the co-authors or didn't think their presence outweighed the benefits.

Sadly the best a petition can hope for is register our displeasure and give people reason to pause and think.

And what's the worst the petition can hope for? Wrecking the chances of the study going ahead. This isn't a petition with only upsides.

Everybody voiced their displeasure at the article in the guardian by PWhite but now it's time to turn a blind eye and let him continue research into ME?

So everyone who doesn't support your petition and is arguing for a different and possibly more powerful and productive way to handle the situation is "turning a blind eye"?

 

[BurnA]

Getting an indication of support from patients seems to be part of the new "patient involvement"

Yes. We're so involved in this study aren't we.

So everyone who doesn't support your petition and is arguing for a different and possibly more powerful and productive way to handle the situation is "turning a blind eye"?

It's not my petition, but what are the more powerful and productive ways that you are suggesting - have I missed something ? The more powerful and productive the better, I'll support that.

And yes anyone who supports a study with PWhite involved is turning a blind eye - absolutely.

 

[Sasha]

It's not my petition,

You drafted one in a PDF and have been revising it in response to comments.

but what are the more powerful and productive ways that you are suggesting - have I missed something ?

Apparently so, and repeatedly - starting with this post, which was "liked" by 15 people.

And yes anyone who supports a study with PWhite involved is turning a blind eye - absolutely.

I didn't say "Is any one who supports a study by White turning a blind eye?" You've misrespresented my question. My question was this:

So everyone who doesn't support your petition and is arguing for a different and possibly more powerful and productive way to handle the situation is "turning a blind eye"?

There can come a point at which a thread does not appear to be worth continuing with, and for me, this thread is at that point now. I won't be returning to it.

I've made my views on this issue clear and people can make their own minds up about whether a petition produced on this thread is likely to be well-executed and worthy of support.

 

[BurnA]

There can come a point at which a thread does not appear to be worth continuing with, and for me, this thread is at that point now. I won't be returning to it.

I've made my views on this issue clear and people can make their own minds up about whether a petition produced on this thread is likely to be well-executed and worthy of support

The purpose of this thread was to discuss a counter petition - the title says quite clearly - brain storming stage.
Everyone is well within their rights to brainstorm and that means making suggestions or proposals. Some will get support some won't. But participation is key to any brainstorm. Of course people will make their own minds up - that is what the thread is for.
Everyone's suggestion and opinion is welcome. I don't think that could be any clearer from the posts.

It doesn't mean all of a sudden it is my petition or indeed anyone else's petition, it hopefully would represent as many people as possible, if indeed it ever happened - remember it's a brainstorm, with a nod to seeing how much support it might get, nothing else.

You say I misrepresented your question, I didn't mean to I was stating my opinion.
However I found your question misleading in its own right - it was based on an incorrect assumption and didn't represent my views so I wanted to be explicit.

I do find your comment "likely to be well executed" strange. It implies people on this thread can't execute a petition well, when in fact all I have seen are good plans, proposals and suggestions which are exactly the type of things you need to execute something well.

Nothing may ever come of this thread but I am glad to have had the opportunity to express my opinion and listen to other peoples feedback and opinion too.