Counter petition to the MEGA petition, brainstorming stage

[Yogi]

Perhaps I am stupid, but I can't see any difference between
1. an open letter on PR setting out our concerns and questions that then gathers expressions of support and is sent to the CMRC, and
2. a petition on a site like change.org setting out our concerns and questions that then gathers expressions of support and is presented to a recipient or recipients that are yet to be determined

apart from:
1. by keeping it on PR, its reach is diminished with respect to gathering support;
2. by sending it to the CMRC only it makes it very easy for them to go - 'ah, that's from those hot-head baby-stranglers on PR' and file it in the bin.

Can anyone explain?

No you are not stupid and we are not stupid.

There is no difference apart from this one letter can be dismissed and ignored easily with thousands of signatures (quantifiable) for their MEGA petition despite many now feeling deceived into signing and regret that they signed.

The counter petition could not be dismissed so easily given it will have a quantifiable level of support as strong and potentially stronger than the original petition.

 

[BurnA]

Give this MEGA project a chance to fly – don’t try to strangle it at birth, says Dr Charles Shepherd | 3 October 2016

@charles shepherd I am really taken by surprise at your use of the word strangle in this context.

In all seriousness did you expect patients would all nod and agree with the inclusion of White and Crawley?

I really do appreciate your input here and indeed all the work you do for MEA so I hope you don't think I am being ungrateful, but I do wonder whether there is a disconnect somewhere if you or other charities didn't consider the likelihood that patients would be at the very very least, upset at their inclusion.

Would it have been better to say something more like :
( In light of recent revelations regarding the PACE trial) We understand some patients concerns regarding the membership of the MEGA team and are working hard to ensure the patients concerns do not go ignored "

Really that is all most people would like to hear a charity say, it is really worrying that not only was this not said but it was suggested patients are strangling research.

 

[BurnA]

No, I meant hosting it on PR while expressions of support are accumulated, before sending it off, as opposed to hosting it on a website like change.org before sending it off.

(I think) The idea is to draft it here, after that we can collect as many signatures as we like.

 

[Wildcat]

.
Why is it OK for AFME to encourage patients to sign a petition in favour of MEGA (stating that its important that its is known that patients support the study) ...

But Not OK for patients to independently create and sign a petition stating we do not want the study (or definitely in its present condition).?


Does the first represent patients being compliant with what the CEO of AFME suggests.... but the second represent patients who expect, at this stage, (considering the dire history of MRC funded ME research, and AFME's involvement in PACE) to have a voice and use it, without the 'guidance' of AFME?
.

 

[charles shepherd]

@charles shepherd

Did the MEA support PACE?

You are not up to speed on the position the MEA has taken on PACE since it was first announced !

We declined to join the steering/advisory group

We organised a petition which made it very clear that we did not believe that the research would tell us anything that was not already known and that the money would be far better spent on biomedical research

We have consistently refused to support the PACE trial and I have written several critical letters to the journals that have published the various PACE trial results - some of which have been published

I have also provided assistance to those who have been trying to get the trial data released and attended the FoI tribunal with David Tuller

 

[BurnA]

We organised a petition

 

[Fred1234567]

Support Invest in ME - who has a proven track record of choosing good scientists doing good research not CMRC.
MEGA can't even say what diagnostic criteria it uses- not good.
CMRC are gagged from commenting on each other's work- that's not how good science gets done.
MeAssociation and Action 4 ME are letting Me patients down by getting into bed with the CMRC- why?
Why aren't MeAssociation and Action 4 ME backing and supporting Invest in Me?
Patients want quality research NOT politics and more PACE quality crap science.

 

[Fred1234567]

Charles why do you think it's a good idea to back MEGA - when Peter White and Ester Crawley are involved? Why do you think it's a good idea to back a study that hasn't stated it will use the CCC plus mandatory post exertional malaise or the ICC diagnostic criteria?

 

[Yogi]

Too militant for that are we?

I thought that SMC narrative was dismissed by the Courts. Surely we can't be dismissed again as vexatious militants as was widely done in the mainstream media in 2011 when reasonable concerns are being raised.

 

[AndyPR]

I thought that SMC narrative was dismissed by the Courts. Surely we can't be dismissed again as vexatious militants as was widely done in the mainstream media in 2011 when reasonable concerns are being raised.

It would appear that Dr Shepherd would seem to think that about a certain number of us on this forum which, I think, is a shame.

 

[snowathlete]

Tony has now put this MEGA statement on the MEA website for all to see and some people may find the website version easier to read:

http://www.meassociation.org.uk/201...irth-says-dr-charles-shepherd-3-october-2016/

@charles shepherd - I've given this some thought over the last few hours, I didn't want to react in a knee-jerk way. But having considered it carefully, I object to this title the MEA has chosen. I think it's a very poor choice and the MEA should change it.

1. It wrongly implies that patients want to end this project and there isn't much evidence of that, if any.
2. Strangle at birth isn't a very pleasant expression and makes patients sound extreme, which I know is not your intention because you and the MEA have worked hard over the years to stop such impressions about patients being written and said by other parties.
3. Patients did not ask for this situation. It was a situation which should have been foreseen by those involved before patients even knew about it, and should have been addressed at that stage. To blame patients if the project now received criticism from patients that harms the projects chances is not at all fair on patients.

I hope you'll just change the title, as I'm sure the MEA created it in haste and didn't mean to cause upset with it. Thanks.

 

[Ben H]

There are so many well informed comments on here.

I have the same huge reservations about this as everyone else. I also find it utterly perplexing that the MEGA petition was started so quickly and seemingly so rashly.

We need a dialogue. The twitter stuff with Sonya just isn't working.

@charles shepherd Why not perhaps contact the experts on this-some that are already ahead of the game? Dr Davis might be able to spare some time for potential metabolomic based UK research. Though I am not sure where he would stand knowing the psychiatrists involved...@Rose49

Thankyou for your efforts at getting a dialogue, though the militant reference really saddens me. I don't see any militancy, just very ill patients wanting unbiased, solid science.

Though all this being said, I still cant sign it with Crawley onboard.

Just thinking out loud.


B

 

[Jan]

[/QUOTE]

.
@charles shepherd wrote:

"...I asked the question on patient selection at the conference. The nearest information we have was the reply from Dr Esther Crawley in which she stated that patients will meet NHS diagnostic criteria for ME/CFS and will be recruited from the NHS hospital based referral centres for people with ME/CFS"

.
Recruiting from the NHS CFS referral centres excludes many long term patients who did not seek referral/diagnosis from the centres, who had been pacing for years, or who seek private treatments anyway as the clinics offer so little, recruiting from the centres also excludes more severely sick patients.....


.

There is a huge fundamental flaw here. How many ME patients in the UK have any sort of long term follow up? (perhaps we need a poll) I was under the impression that the cfs clinics only see patients in order to diagnose and to teach cbt and get. Then patients are in effect 'discharged' with no long term follow up. If this is the case then they will be trying to recruit 20,000 patients from just the newly diagnosed and most of the rest of us will be excluded. I have not been to a cfs clinic for over 20 years, I could be dead for all they know.

 

[Yogi]

There are so many well informed comments on here.

I have the same huge reservations about this as everyone else. I also find it utterly perplexing that the MEGA petition was started so quickly and seemingly so rashly.

We need a dialogue. The twitter stuff with Sonya just isn't working.

@charles shepherd Why not perhaps contact the experts on this-some that are already ahead of the game? Dr Davis might be able to spare some time for potential metabolomic based UK research. Though I am not sure where he would stand knowing the psychiatrists involved...@Rose49

Thankyou for your efforts at getting a dialogue, though the militant reference really saddens me. I don't see any militancy, just very ill patients wanting unbiased, solid science.

Though all this being said, I still cant sign it with Crawley onboard.

Just thinking out loud.


B

Thanks for your comment. There is so much going on in the last few months to keep up with. One other concern I have with MEGA is the sheer scale of it at 12,000. How they will be able to recruit 12000 properly diagnosed patients who knows. I will leave that question aside and focus on another major danger.

The big concern is that if Dr Davis's END MECFS project is successful and succeeds with lots of good research and results it could be undermined by MEGA as it may not have much weight and be dismissed as too small especially if as I suspect MEGA (with12000 participants) has contradictory results.

End MECFS is top notch and Dr Ron Davis is good as gold and we are all so confident and supportive of that project. Why is the CMRC so blind to the obvious and why can they not be capable to produce a research project without the clear obvious defects?

I am unsure what the main thread for Dr Ron Davis OMF study. I hope everyone discussing End ME/CFS is aware of MEGA. If not could you let me know or could you add or mention the main MEGA thread to that thread so no-one is left unaware of MEGA there given the possible wider implications of MEGA.

Thanks @Ben Howell for all your great work as our OMF correspondent!!!

 

[AndyPR]

I think it is very obvious now that even the pro-patient patient charities have seriously misunderstood what the patient community reaction might be to this. Another flag for me how poorly managed the situation is is that AfME is listed as "Sonya Chowdhury, Action for M.E., representing the patient charity members of the UK CFS/M.E. Research Collaborative Board" - yet she/they have been effectively silent about the patient concerns that have been raised. The ME Association are the only charity that has responded and unfortunately haven't been able to address our main concerns i.e. White, Crawley et al.

Also, browsing patients comments elsewhere, a big concern is the selection for the study. If selection is from the CFS clinics in the UK (and I don't think there are any in Scotland, am I right there?) then, even setting aside selection/diagnostic criteria, the selection will come from the few of us who might attend those clinics, typically newly diagnosed and mainly mild cases. The vast majority of those with ME in this country, I believe, do not attend those clinics, we have either got whatever minimal benefit we can from them (how to pace, may be some proper CBT about living with ME rather than ignoring it) and then left them or, as in my case, I went to one once, they confirmed my diagnosis and then said that they could do nothing more for me - that was the best part of 10 years ago and my one appointment was the only contact I've ever had with ME 'specialists'. I do wonder if some appreciation of this has occurred to the MEGA team and hence the petition - they can't demonstrate that they can get enough subjects from the CFS clinics and hoped to reconnect with ME patients 'in the wild' via the petition.

This announcement should have been a fantastic, fabulous breakthrough event for ME patients in the UK, instead it's just confirmed how depressing the situation is for us again.

Yours,
Downhearted of Hampshire

 

[Cinders66]

Yes, respresentation is important. But those comments above are true about so much biomedical research in general. Quite of lot of studies use self-selected samples of teh wiliing (these often have incredibly high levels of patients with post-grad qualifications an an immediate red flag). In other words, most research to date, including probably just about everything quoted approvingly on PR, has questions about how representative samples are. Large clincis are likely to be more representative. Ron Davis's study is about the only one I know of with severely-afffected patients (thankfully the UK biobank now has banked samples from 50 severely-affected patients, but as the biobank points out, these patients are themselves unlikely to be representative of the wider severely-affected patient population (conveniencce sample).

A lot of research to date has been small, the absence of the severe from this research has never been nodded through approvingly by the severely ill themselves, it's been a huge concern. It's just few severe use their energy if they have any engaging on these sort if forums. I'm an odd exception. But as they were small studies and many not being blood based and as nowhere around world has good inpatient facilities to accommodate the severe in their research (I think Australia and Norway have tried to overcome this a little) then we have had to accept it's the best the authors Can manage.

That's quite different from a setting out to be vast, well resourced study. The uk bio bank & Ron davis' study & the Australian nk cell research has already shown its possible to get blood samples from a lot of severe, even very severe, it's more the extremely ill who are not reachable. I'd be very disappointed if there wasn't the desire or willingness to include the severe (house and bed bound) while at the other end we are being told CF might be included. The severe have the strongest singnals and have been abandoned the worst. And are the neediest. Talking of the bio bank could not that be used as a resource or is there a need for more from the patient?

 

[TillyMoments]

I know @AndyPR has already commented on this but I'd like to too.
Thanks for the update and the additional information @charles shepherd

Nobody is attempting to strangle this. I think that is clear from the comments on this thread.
We are looking out for ourselves, which is prudent given past research involving White and Crawley. We welcome biomedical research but there us no justification for their involvement in ANY research into ME.

I am disappointed you don't object to their inclusion. This is a great opportunity to remove the pseudoscientists from ME research and it seems like it is an opportunity wasted.

I have just joined
I have been guilty of strangling on the grounds of those involved and there are many mothers like me who have. Crawley is the only one many can turn to to help with school now Dr Speight has been taken out. I hear on a daily basis how her work hams very young children and speaking from experience, which is on going, we are all constantly threatened with being taken to court if we do not comply. The hospital we were under threatened with changing my son diagnosis(then 9) and a hospital stay for 2-4 weeks to rehabilitate him, without the influence of me! A common tactic used by Crawley. He was light, sound and noise sensitive, so therefore had other issues other than CFS. I am confident that the hospital we were under talked to Crawley and feel confident the new hospital is seeking her guidance. I have had to push for PoTS test and Coeliac, he has both.
You can see why the anger and frustration boil over. I live in Suffolk and the paediatric we are now under advocates the LP as per Crawley SMILE trial, we have a lot to loose. I have read the minutes of the collaborative in which they use a code to smoke screen and are trying to bring in migraines as a useful leaver? The other thing is I have been reading an old paper on travel by P White and I do not understand it. I feel confident that it shows a TGF alpha response and TGF beta response to exercise (possible not the place to put it but it is why I do not want White involved) there were a lot of scientist involved. I have no idea what it means it goes well over my head, but I have a very uneasy feeling about the results. I have attached the graphs and would appreciate some guidance one way or other to clear my mind.
We desperately want the research, but researchers such as Bansal have had to curb their practice because of the pressure of being taken out by these people. Children with EDS are under threat too, and if your child has both it is heart breaking. I am sure this is why Dr Shepard takes a on the fence approach, and maybe this is why he is involved? but bullies can only bully you if you let them!
So if we make it clear we do not want White or Crawley on the team, only to find volunteers, mothers like me would feel a lot easier. Perhaps ask why Julia Newton is at the bottom of the pile? Prof Malcolm Hooper and Dr Speight are trusted so why not have them at the head of biomedical research? They know the difference between ME and other conditions? But I would expect they somehow have put the idea forward? Invest in ME never get a look in and have been held back from a research centre at Norwich, which is a point that gets missed.

 

[slysaint]

we are being told CF might be included

From what I've read so far, more and more I'm coming to the conclusion that this will be studies into chronic fatigue the symptom and not CFS or ME.

 

[JoanDublin]

The thread on ME Association FB page is very interesting. There is a huge amount of well thought out criticism on this project
https://www.facebook.com/permalink.php?story_fbid=1167373163320340&id=171411469583186

 

[Simon]

PWME in the UK actively AVOID the CFS Clinics.

And the evidence for that is? I'm sure some do, but does this mean we have clinics of PEM-free patients? I'd love to see some evidence of that. My guess is that the vast majority of UK patients aren't as well-informed as those on PR and won't all be boycotting the clinics because they don't trust them.

I'm pretty sure that Lenny Jason ran a study with patients from Newcastle and found most Fukuda patients there also met Canadian criteria. The NICE criteria require post exertional malaise or post-exertional fatigue (I know the two are differen,t but that's the definition in the Canadian criteria too). So more evidence would help, but I don't thin sweepiing statements get us very far.

No study is perfect. Take the Lipkin/Hornig cytokine study, the largest biomed study in the world to date so far, which I wrote about here
New era for ME/CFS research as top cytokine study attracts media headlines (Hornig/Lipkin)
It's the most-lauded published study in our history. But the sample is not ideal. The samples for that came from the top US clinics. Again these clinics have a bias to highly-educated patients, not least because they all have to have health insurance (or since insurances don't always cover mecfs, tragically, the means to pay privately). There are only half-a-dozen of these clinics in the US, biasing the sample to people well enough to travel long distance, much further than UK patients would travel. These are inevitably biased samples, though they are drawn from different parts of the US.

I agree that patient selection is very important. But I'm concerned about knee-jerk damning of an approach in one study when no such scrutiny is shown for other large studies. A perfect sample won't be possible, but we do need a good one.

I'd be very disappointed if there wasn't the desire or willingness to include the severe (house and bed bound)

I think that's an issue worth raising. Obviously the severely-affected are much harder to reach and diagnose (way more expensive per patient). I don't know if using the biobank for severely-afffected is an option. But I do think it's a question that should be put to MEGA.