Counter petition to the MEGA petition, brainstorming stage

[suseq]

Dear All,
Hello! This is my very first post although I have long been a reader of the many excellent posts on this site and a quiet supporter of the superb advocacy. As someone who has been sick with ME for almost 6 years and lost reliable speech and the ability to function in life without impact and deterioration, I so appreciate everything that has been done and said to correct the misleading misrepresentation of ME, although I have tried to advocate and inform on an individual basis whenever possible.

There is so much hope and encouraging advocacy and research happening now which is why, in the wake of the PACE trial outcome, I am seriously concerned by the MEGA trial and it's aims, objectives and associates. I agree with many of the objections made and think a counter petition is an excellent idea. My suggestions for the wording is as follows:

THE MEGA TRIAL - NOT IN OUR NAME - we, the undersigned cannot give our support to the MEGA trial until it's objectives are made transparently clear and those associated with it do not include any investigators or advisors associated, affiliated or linked to PACE and/or any associated BPS, CBT, GET trials which have been shown to misrepresent our illness and not be in our best interests. We support organic bio-medical research which respects and considers the full range of signs and symptoms experienced by those who suffer all levels of the fluctuating illness known as ME.

I hope this helps - it's taken me a while to write and was going to include some background info but thought I'd save that for another time, not least because my vintage pc is typing on this page slower than me!

With kind regards to all.

 

[Yogi]

Also, the goal should be to shape the study, not shut it down.

Agreed but only if they are amenable to shaping it. That is what the counter-petition would be able to ascertain. Great if they take on board suggestions- I suspect they will not. If they just ignore everything and just go ahead with a TATT study which they use for ME then what?

 

[A.B.]

Guarantee not to use Oxford criteria.

Should be: that PEM is mandatory for patients, and that a definition of PEM is used to that is widely accepted by researchers and patients alike, and that patients are not excluded if they have signs of illness (the Oxford criteria exclude patients with neurological signs which many have).

The best broad criteria might be IOM criteria.

 

[Yogi]

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.

Agreed if they were open to communication. They will only pay lip -service to communication.

I hate badly worded petitions done in haste. However a well worded petition may be necessary in this case. CMRC and Crawley/White have already launched their bizarre petition and there is a case for a counter petition to neutralise the damage that one could possibly do. Many people have signed ME related petitions in the last year (i.e. Change Mary Gelpi's one, retract PACE trial, stop GET etc) and they may unwittingly sign this one given petitions are always beneficial for the community without fully understanding the motives and who is really behind it.

 

[snowathlete]

Should be: that PEM is mandatory for patients, and that a definition of PEM is used to that is widely accepted by researchers and patients alike, and that patients are not excluded if they have signs of illness (the Oxford criteria exclude patients with neurological signs which many have).

The best broad criteria might be IOM criteria.

PEM and never use Oxford definition. The first results in the second, I realize, but I think it would be wise to explicitly state that Oxford should never be used as well.

 

[Sidereal]

Should be: that PEM is mandatory for patients, and that a definition of PEM is used to that is widely accepted by researchers and patients alike, and that patients are not excluded if they have signs of illness (the Oxford criteria exclude patients with neurological signs which many have).

The best broad criteria might be IOM criteria.

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.

 

[TiredSam]

I think in this case a counter petition would be a good idea, because it will be the easiest way to counter their petition. So when they whip out their petition for whatever nefarious purposes they're trying to get us all to sign it for, it will be most helpful if we can whip out one with even more signatures that can be directly compared with theirs.

Agree the people we object to shouldn't be named personally but described broadly, because if we name White and Crawley (and Chowdhury if it was up to me), then even if they are removed they can just be replaced with Chalder or some other BPS supporter.

I would rather this whole project collapsed than went ahead without a thorough clean-up. Don't forget Wessely is still pulling strings behind the scenes advising on appointments and who knows what else. Shame about the good researchers, but it's an even bigger shame about the patients, and the good researchers will be able to do great things by getting involved in other projects with more integrity in the future.

If things don't change soon then any research coming out of the UK won't be taken seriously any more anyway, as the current researchers who seem to have the country sewn up with their network of friends are increasingly seen as a bunch of corrupt incestuous crackpots bestowing OBEs and knighthoods on each other whilst screwing over the patients. Any good researchers associated with this kind of project will suffer reputational damage when the inevitable politics and disputes start.

If they can't clean up their act then take their toys off them before they do any more damage.

 

[Sasha]

Whatever form action takes I think we need to bend over backwards to come across as reasonable.

I agree.

- 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.

I'm sorry, @snowathlete, but while that might look reasonable to some here, I don't think it will to the researchers. They'll never have come across a situation like this. They've got White talking directly into their ears. They're likely to assume that he's legit and we're crazy until there's so much out there in the published, mainstream literature and media that it's blindingly obvious what has gone on in PACE, and we're not there yet. And then there's all the politics to deal with within the CMRC.

This is all going to look very different to them than it does to us, as they sit around a table with their sandwiches in some university department, where their colleagues are their fellow doctors and where patients are just a few marks on a piece of paper.

Remember the total failure of this approach with Nath and the intramural NIH study. It didn't work for a reason, and we have to learn from that and adapt our approach to something more effective.

When groups are far apart, I think that questions can be a lot more powerful than demands.

 

[ukxmrv]

I'm not much help at the moment. Still mulling through the issues
Would like to throw something else in here

My feeling is that it would also be a complete disaster for AFME to be involved in patient representation. They did this on the PACE trial and see where that got us.

I'd like to see the patient representatives to be actual ME patients or people specifically chosen by ME patients if they are from a group too sick to participate

and from a diversity of the different charities (i.e also from IiME and the 25% group and ME Research UK etc)

Patient representatives were also used in the NICE guidelines and that went badly as well.

 

[aimossy]

I don't think a counter petition right now is a good idea. I think questions are needed and a huge push for patient consultation and involvement in the planning. I would rather we work and battle for this research to be what it needs to be and in the best interests of patients than kill something off that has the ability to change everything if it's done right.

 

[Sasha]

I don't think a counter petition right now is a good idea. I think questions are needed and a huge push for patient consultation and involvement in the planning. I would rather we work and battle for this research to be what it needs to be and in the best interests of patients than kill something off that has the ability to change everything if it's done right.

 

[A.B.]

My feeling is that it would also be a complete disaster for AFME to be involved in patient representation. They did this on the PACE trial and see where that got us.

AFME comes across as a charity that has been taken over by the bizarre psychosocial model lobby.

 

[snowathlete]

I agree.



I'm sorry, @snowathlete, but while that might look reasonable to some here, I don't think it will to the researchers. They'll never have come across a situation like this. They've got White talking directly into their ears. They're likely to assume that he's legit and we're crazy until there's so much out there in the published, mainstream literature and media that it's blindingly obvious what has gone on in PACE, and we're not there yet. And then there's all the politics to deal with within the CMRC.

This is all going to look very different to them than it does to us, as they sit around a table with their sandwiches in some university department, where their colleagues are their fellow doctors and where patients are just a few marks on a piece of paper.

Remember the total failure of this approach with Nath and the intramural NIH study. It didn't work for a reason, and we have to learn from that and adapt our approach to something more effective.

When groups are far apart, I think that questions can be a lot more powerful than demands.

Although there are similarities, I think this is a bit different from the situation in the NIH study. Patients have been invited in to have a say on this study by those running it. You cannot start a petition asking patients to support your study and only listen to patients who agree with you. Once you've opened it up to patients like that you have to be willing to take feedback from patients who explain rationally why they won't support it in its current form. The thing I find worrying is that the charities involved haven't pointed this out to those running the study. Having so called "ME experts" involved was always going to be a problem for patients. Why do it? It's not as if they bring anything of value to the table.

I think it's misguided to pretend everyone with vastly different beliefs can get along, and no one is going to have a problem with it. Unfortunately, we see yet again that some patient charities fail to stand up for what is appropriate for patients. Given how strongly patients feel about it, and with bucket loads of justification, it shouldn't just be ignored by charities because it would be convenient to ignore it.

I don't disagree with you entirely, it's true that we have to look at this from a perspective of how those receiving this information will perceive it and be mindful of that, and demanding is probably not the best approach with many of the issues, but I also think these are valid concerns that patients have a right to have heard, and acted upon. It's not about emotion, it's about logical, reasonable, justifiable concerns.

Some of those concerns are valid as demands. I think there is ample evidence that PACE investigators should not be seen as acceptable people to have involved in further ME/CFS research. Especially when patients are asked to back it! Whether you look at that on the grounds of beliefs about the disease, poor research practices, attitudes toward patients, misrepresenting research, non-disclosure of COIs, ethical concerns...the list goes on.

And there is ample evidence that Oxford is a junk definition, for instance. It's from the stone age and this research is going to impact patients, so they have a right to voice that it is not used.

It's about picking the most reasonable approach and voicing the most justifiable concerns. I think keeping it simple and being pragmatic is important, not every single concern should be voices as a demand as it wont be realistic achieving it, but for me, if White or Crawley are involved I won't be supporting it. I think that is a core view of many patients, a line they simply won't allow to be crossed. A letter might be better, at this stage, for instance - a petition could always be done later if concerns are ignored - but who is that letter from exactly, and how do patients ensure that those behind the study understand that the questions being asked are being asked by lots of patients?

 

[snowathlete]

This is why White must not be allowed to continue misleading the ME/CFS research field.
http://forums.phoenixrising.me/index.php?threads/peter-white-pace-in-the-guardian.47122/

 

[AndyPR]

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.

People have tried to communicate with both AfME and ME Research UK about the various concerns in regard to the study and have received almost no communication back. Via Facebook, AfME responded 1. to confirm that no selection criteria has been agreed yet, and 2. 'mistakenly' to explain the data privacy policy of Change.org when I was asking about the trial data policy. My question wasn't crystal clear in fairness but once clarified there was no further interaction. ME Research UK have only responded on side issues as well (although they did release the crystal clear statement that none of their researchers have ever been harassed).

The patients are the ones trying to communicate, there is, so far, a resounding lack of communication from MEGA and all involved.

 

[TiredSam]

This is why White must not be allowed to continue misleading the ME/CFS research field.
http://forums.phoenixrising.me/index.php?threads/peter-white-pace-in-the-guardian.47122/

Makes his newfound commitment to biomedical research look a little shakey, I'd say.

 

[Sasha]

People have tried to communicate with both AfME and ME Research UK about the various concerns in regard to the study and have received almost no communication back.

I'm not proposing comms via one of these charities.

 

[slysaint]

Makes his newfound commitment to biomedical research look a little shakey, I'd say.

Action for ME research funding:

2016 current projects
We are currently funding:
an autonomic dysfunction feasability study at Newcastle University Led by: Prof Julia Newton

• a study looking at severe paedriatic M.E. Led by: Dr Esther Crawley
• a study comparing patterns of mitochondrial DNA variation in people with M.E. and healthy controlsLed by: Dr Joanna Elson
• further development of the M.E. Disease Register at Buckingham New University.

We are also:

• managing the funds of research into the neurophysiology of pain in M.E., having accepted a donation of funds from the CFS Research Foundation Led by: Prof Peter White and Dr Julius Bourke
  
• working in partnership with the UK CFS/M.E. Research Collaborative.

Recently funded projects
Here you can find information on projects we have funded and which have recently concluded, along with project summaries from the researchers involved:

• a study into muscle dysfunction in M.E. at Newcastle University Led by: Dr Phil Manning and Prof Julia Newton at Newcastle University
  
• a study into immune responses in CFS/M.E. at Newcastle University
• the ME/CFS Disease Register

TAKEN FROM THE AFME WEBSITE

 

[BurnA]

So I came up with this....

 

[Esther12]

So I came up with this....

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".