Petition: Opposing MEGA

[Snowdrop]

Yes, that looks more like it.

 

[batteredoldbook]

MEGA's Prof. Chris P Ponting confirms he thinks Pace Trial is bad science on Twitter today.

James David Chapman ‏@batteredoldbook
@CGATist I'm looking for dialogue and I'm asking you straight: do you think the PACE trial is an example of bad science?

Chris P Ponting ‏@CGATist
Hi. I answered this in previous tweet: it is. Its issues are well-documented including by pwme @batteredoldbook

 

[Dx Revision Watch]

From trishrhymes' link:

https://wellcome.ac.uk/funding/biomedical-resource-and-technology-development-grants

Dates
We consider applications once a year. You must submit your application by 17:00 (GMT/BST) on the deadline day. We don't accept late applications.

January 2017 round

• Preliminary application deadline
  13 January 2017
  
  
• Full application deadline
  3 April 2017
  
  
• Committee review
  6 July 2017
  

 

[Jan]

@charles shepherd Is there any reason why this could not have been done, after all MEGA is just going to be a huge bio-bank (plus questionnaires) in this round of funding? The existing bio-bank would have had 100% patient support and most importantly their trust.

I guess it might be this one. They have said the first stage will be to set up the Biobank.

Biomedical Resource and Technology Development Grants
These grants are for researchers who want to establish or maintain resources or technology for the benefit of the wider scientific community.

https://wellcome.ac.uk/funding/biomedical-resource-and-technology-development-grants

Deadline 13th January

It occurs to me that the existing ME Biobank could put in a competing application to expand it's own patient numbers.

 

[lilpink]

Interesting mailing from AYME today:

"
Children in Need funding gone – we urgently need your help!

At some point during the last three years, your family has been supported by AYME and we hope even in some small way this reduced the suffering your family has, or is experiencing.

The support may have been provided following contact with our help and information line and email service, or perhaps in some extreme cases via our emergency crisis line which operates 24 hours a day, seven days a week. Many of the families receiving support were and remain under threat of safeguarding proceedings and rely entirely on this support to empower them to challenge those taking proceedings against them.

These services have been funded by Children in Need since 2013, but funding will cease at the end of 2016. With severely limited general funds, AYME cannot continue to provide this level of support.

For some time, we have been desperately trying to identify other sources of funding but to no avail. Lack of awareness and understanding faced by many families we work with also poses a significant challenge when seeking financial support openly available for other more well-known causes. If you have appreciated the support you have received, no matter how little, I am begging you to ensure our services continue for those children with M.E./CFS and their families who are in crisis right now. If this is you and your loved ones we will continue to do our utmost for you.

If you are truly unable to help, then please ignore this email. However if you can spare even £1, believe me every penny will help keep AYME operating these support services.

You can help by:

· Donating regularly via AYME website or make a one off donation www.ayme.org.uk/donate

· Introduce AYME to potential corporate supporters (e.g. your employer)

· Hold a fundraising event no matter how small – see AYME’s website www.ayme.org.uk/fundraise for ideas or email Jo (Jo@ayme.org.uk)

· Do all of your online shopping via the AYME website www.giveasyoulive.com/join/ayme especially during the build up to Christmas! Every penny you spend will result in a donation to AYME, at no additional cost to yourself – don’t forget to tell friends and family friends and family. An important note is to go to the bottom of the page and under ‘Ways to Raise’ click ‘Donation Reminder’ and every time you shop online this will remind you by providing a short cut!


Your Charity really, really needs you right now. Thousands of children are still relying on AYME, so please help ensure we are there for them in 2017.

Thank you for taking the time to read this. Thinking of you all and especially those still dreaming of improved health.

Mary-Jane and team.
"

 

[Esther12]

MEGA's Prof. Chris P Ponting confirms he thinks Pace Trial is bad science on Twitter today.

Chris Ponting has always seemed like a decent person, engaging fairly with patients. Must be a bit of a bizarre situation for him!

 

[batteredoldbook]

Chris Ponting has always seemed like a decent person, engaging fairly with patients. Must be a bit of a bizarre situation for him!

Within context I think it is strong for Professor Ponting to say that Pace is bad science, but actions are what counts. He shouldn't be working with those who act as if Pace were good science.

 

[slysaint]

MEGA's Prof. Chris P Ponting confirms he thinks Pace Trial is bad science on Twitter today.

James David Chapman ‏@batteredoldbook
@CGATist I'm looking for dialogue and I'm asking you straight: do you think the PACE trial is an example of bad science?

Chris P Ponting ‏@CGATist
Hi. I answered this in previous tweet: it is. Its issues are well-documented including by pwme @batteredoldbook

Need to follow that up with the question;
"So,what do you think about Esther Crawleys comment that PACE was a great,great trial"?

 

[trishrhymes]

Need to follow that up with the question;
"So,what do you think about Esther Crawleys comment that PACE was a great,great trial"?

One could add a further question about whether he's looked at any of Crawley's own research. But I think it may be unfair to ask a busy biomedical scientist to dig into the murky world of PACE, FITNET etc. He probably has better things to do with his time - much as we might like him to join in our campaigns.

On the other hand he has signed up to join in a study that looks like it's going to be run by Crawley, so he might want to know what company he's keeping. Can someone perhaps point him in the direction of David Tuller's latest artices about FITNET.

 

[batteredoldbook]

Need to follow that up with the question;
"So,what do you think about Esther Crawleys comment that PACE was a great,great trial"?

Yes indeed. I wrote him this yesterday:

@CGATist I'm wondering how MEGA team can function when yourself &Prof Crawley hold opposing views on what makes good scientific methodology?

And to him and another I backed this up by quoting EC expressing her view that Pace was "well conducted" at the SMC website:
http://www.sciencemediacentre.org/e...nto-therapies-for-chronic-fatigue-syndromeme/

 

[batteredoldbook]

One could add a further question about whether he's looked at any of Crawley's own research. But I think it may be unfair to ask a busy biomedical scientist to dig into the murky world of PACE, FITNET etc. He probably has better things to do with his time - much as we might like him to join in our campaigns. On the other hand he has signed up to join in a study that looks like it's going to be run by Crawley, so he might want to know what company he's keeping.

Researchers are told that pwme will make their lives difficult. I think the reality is that their careers and reputations are in greater danger from their colleagues.

 

[Jo Best]

On the other hand he has signed up to join in a study that looks like it's going to be run by Crawley, so he might want to know what company he's keeping. Can someone perhaps point him in the direction of David Tuller's latest artices about FITNET.

Exactly my thoughts about any of the 'unwary' scientists assembled by Stephen Holgate for this enterprise. Are they aware the data they provide could be used (or misused) by those managing both the study and the media?

 

[batteredoldbook]

Exactly my thoughts about any of the 'unwary' scientists assembled by Stephen Holgate for this enterprise. Are they aware the data they provide could be used (or misused) by those managing both the study and the media?

I still have hope Prof Ponting will do the right thing by patients & science but in general considering these as the actions of the "unwary" is, I think, being overly kind. In my experience there is a refusal in medical science to process blatantly contradictory behaviour.
The fact is, if people choose to work with those who support PACE and FITNET then yeah, I will judge them on this. It's a rotten decision to make and risks imposing decades of misery onto another generation of pwme.

 

[batteredoldbook]

No reply from MERUK either. :*( #OpposingMEGA. #pwme

https://twitter.com/i/web/status/803277474608087040

"Have now sent my MEGA text ( https://justpaste.it/10o4c ) to MERUK via email. #pwme"

"@MEResearchUK Hi. Wanted to tell you why I'm losing confidence in UK M.E charities due to CMRC/MEGA&PACE. Thx. https://justpaste.it/10o4c #pwme"

 

[eafw]

@CGATist I'm wondering how MEGA team can function when yourself &Prof Crawley hold opposing views on what makes good scientific methodology?

I think that it is important that we talk to the scientists, but baiting them on twitter like this ? Don't think that is going to be very productive at all.

 

[batteredoldbook]

I think that it is important that we talk to the scientists, but baiting them on twitter like this ? Don't think that is going to be very productive at all.

I find your comment disrespectful because it attempts to reduce my efforts to mere "baiting". In fact I've put an inordinate amount of effort into determining which questions to put to Professor Ponting. I have discovered his view that Pace is bad science and, I think, I have nailed the issue as to why the MEGA team and the CMRC operate under a "big tent": They have to hide away because they actually disagree on how science is done. I think such disagreement needs to be resolved before the MEGA team can justifiably come to ME patients and ask us for support and assistance.

 

[Esther12]

I think that it is important that we talk to the scientists, but baiting them on twitter like this ? Don't think that is going to be very productive at all.

I think it's worth recognising that someone like Christ Ponting hasn't done anything shitty by pwME, and that he's in a difficult situation. The culture of UK science pisses me off, but within that culture he's a part of it seems that slagging off your colleagues on twitter is not the done thing.

I do think it's worth trying to nudge people to speak up, but that this should be done gently if we want to avoid turning away potential allies.

I think twitter is a pretty rubbish way of communicating with people, so I try to give people extra leeway when judging their tweets.

 

[batteredoldbook]

Sadly loyalty within medicine and medical science does keep issues that need light away from it. I yet don't know how to address this other than by saying I don't think researchers do each other or patients any true favours by leaving the contradictions in their behaviour unaddressed.

 

[Esther12]

Sadly loyalty within medicine and medical science does keep issues that need light away from it. I yet don't know how to address this other than by saying I don't think researchers do each other or patients any true favours by leaving the contradictions in their behaviour unaddressed.

Maybe a less public form of communication would feel less like you were trying to put him in a difficult spot?

I don't know. Also, I don't think that it's wrong to put people in difficult spots when we are campaigning for truth and justice! I just can see how they might resent it, and it could back-fire. I really don't know.

 

[Jo Best]

New post on Opposing MEGA - https://opposingmega.wordpress.com/2016/12/02/mega-shambles/

The MEGA state of affairs so far might be funny if it didn’t have such serious implications; particularly for children and young people, and future generations of people afflicted by a serious and life-threatening disease through no fault of their own; as the MEGA study would run for years to come and cost several millions of pounds. The question why MEGA had not set up a website was posed on a threadon Phoenix Rising forum about the Opposing MEGA petition. A contributor to the discussion kindly referred to our Opposing MEGA site as an example of how easily and quickly it may be done. The M.E./CFS Epidemiology and Genomics Alliance (MEGA) closed their petition to ‘mainstream research funders’ after 35 days on the evening of 2nd November 2016 stating..