Petition: Opposing MEGA

[Barry53]

Am sorry to see Prof Coyne's words used to support opposition to MEGA. The man called me assh*le as I stood up to him for the way he treated people with M.E.

He can be a bit cranky. But highly charged endeavours can lead to relying on strange bedfellows.

 

[Sean]

In a war the choice of allies is limited.

 

[lilpink]

Am sorry to see Prof Coyne's words used to support opposition to MEGA. The man called me assh*le as I stood up to him for the way he treated people with M.E.

You are not alone in that concern. Can you point to the particular reference you are unhappy with please?

 

[batteredoldbook]

You are not alone in that concern. Can you point to the particular reference you are unhappy with please?

Was referring to Invest in M.E's facebook last year where Prof Coyne called an M.E patient advocate "sick and crazy", told another person to f*ck themselves and then later told me that I was an assh*le when I asked him whether such an incident would happen again. [

https://twitter.com/i/web/status/719550381391523840

]

I think people with M.E deserve better treatment.

I repeatedly tried to raise the issue of abusive language in M.E advocacy with Tom Kindlon [ http://pwme.org/tom.html ], Dr David Tuller and many other well known M.E advocates. Most recently on virology blog: [ http://www.virology.ws/2017/07/03/t...out-professor-sharpes-special-ethics-seminar/ ]

I have now given up waiting for them to publicly address the issue.

Aside from being harmful to others, I think offensive behaviour drastically reduces M.E patient credibility. Certainly I think a lot less of those patients and advocates who throw personal insults, tell me swearing at people is ok, or stand in silence when I ask them to address the issue. After 30yrs of M.E I don't need further mistreatment in my life.

During the long MEGA discussion here I tried to make it clear that I felt the views of 200 patient advocates were ignored by Professor Holgate and I challenged Dr Shepherd to address his colleague's behaviour. [ https://justpaste.it/10z39 ]. Elsewhere I asked Prof Ponting to explain how he could work with Prof Crawley when they fundamentally disagree on what makes good scientific methodology [

https://twitter.com/i/web/status/804357918464372736

].

Ultimately, and with irony, I conclude that behaviour does keep people with M.E ill. Overall, poor quality behaviour from medicine, advocates and M.E patients creates a toxic political context where a rational and kind-hearted search for the scientific truth comes second to personal agendas.

The single most important thing anyone with M.E can do to oppose MEGA is to challenge mistreatment, and to resist the temptation to mistreat others. People with M.E need rest, research and respect.

All the best, PR.

@batteredoldbook

 

[lilpink]

Was referring to Invest in M.E's facebook last year

Sorry you misunderstood me.. can you link to the specific areas of concern at the OMEGA site please ( OMEGA personnel are all very unwell and so it simplifies matters to be directed to specific places/ links)?

 

[batteredoldbook]

I'm afraid I have limited power also. Please feel free to link to my post here on OMEGA if you think that will help.

 

[AndyPR]

>We vote 'no confidence' in MEGA research for M.E.

>A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'.

In addition

• They are still not including serious ill ME patients (they might be included in the request for funding after next), and will only be determining their definition of PEM after they've secured funding.
• The Patient Advisory Group has been shown to be nothing but lip-service to the concept of including patient input.
• The ME "expert" is still Esther Crawley, who now gives lectures on how to deal with "anti-science" patients, with this petition as a main piece of "evidence", and on how to deny data release.
• George Davey-Smith, the "heavyweight scientist" in MEGA has resigned from the editorial board of the Journal of Health Psychology citing the publication of "anti-science" articles that criticise PACE.

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

3,284 have signed so far.

 

[lilpink]

Invest in ME July Newsletter sent out today to those who have signed up for such, and in reference to the NICE Consultation:

""Having read the whole document it became clear to us that there was little point in being nice to NICE or to give support to organisations such as cmrc & MEGA that seem to us to have been set up to delay any real progress and keep people busy and forever hopeful.
We prefer to say it straight and not play along the silly establishment games which merely maintain the healthcare scandal typified by the PACE Trial, embellish the egos and careers of some commentators and keep patients in the scandalous status-quo.
"

Quite so.

I imagine the full newsletter will be uploaded here in due course: http://www.investinme.org/newsletter.shtml

 

[Jo Best]

From 'Looking at the Evidence': https://spoonseeker.com/2017/08/05/looking-at-the-evidence/

As for Prof George Davey Smith, who left the JHP’s editorial board in protest at the PACE-related special issue, he seemed to positively gloat about his ignorance of ME at last year’s CMRC conference, this in spite of his involvement with the much vaunted though controversial MEGA study, and even referred to it as CSF rather than CFS, apparently mixing up chronic fatigue syndrome with cerebrospinal fluid.

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[AndyPR]

>We vote 'no confidence' in MEGA research for M.E.

>A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'.

In addition

• They are still not including serious ill ME patients (they might be included in the request for funding after next), and will only be determining their definition of PEM after they've secured funding.
• The Patient Advisory Group has been shown to be nothing but lip-service to the concept of including patient input.
• The ME "expert" is still Esther Crawley, who now gives lectures on how to deal with "anti-science" patients, with this petition as a main piece of "evidence", and on how to deny data release.
• George Davey-Smith, the "heavyweight scientist" in MEGA has resigned from the editorial board of the Journal of Health Psychology citing the publication of "anti-science" articles that criticise PACE.
• Crawley thinks that the Lightning Process can help kids with ME, having subjected them to it in the SMILE trial.
• She also has claimed that the MEA opposes any treatment for kids with ME.

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

3,298 have signed so far.

 

[Jo Best]

The NICE decision occurred not long after the Medical Research Council rejected an application from Professor Crawley’s much-ballyhooed Big Data project, the ME/CFS Epidemiology and Genomics Alliance. These successive events suggest that the public controversy over PACE and related CBT/GET studies might have reached a tipping point. Perhaps the anti-scientific arguments advanced by these researchers are finally losing credibility, even among academic and medical colleagues. http://www.virology.ws/2017/09/25/trial-by-error-nice-rejects-current-guidance-plans-full-update/

In his welcome talk at last week’s annual conference of the CFS/ME Research Collaborative (CMRC), the chair, Professor Stephen Holgate, praised his colleague and second-in-command, Professor Esther Crawley, for her “stunning” and “amazing” work on the group’s main research initiative. There was just one problem: That initiative, the ME/CFS Epidemiology and Genomics Alliance (MEGA), had recently failed in its second high-profile bid for major funding. http://www.virology.ws/2017/09/18/trial-by-error-megas-latest-failure/

 

[lilpink]

It's exactly one year since OMEGA went live. It has been an interesting 12 months. Has OMEGA achieved its remit? Very probably... at least at the one year mark Esther Crawley has had two MEGA proposals turned down, from Wellcome and from the MRC. Has she finished trying to finagle funding for MEGA? Doubt it... remember OMEGA is still open for business until we can be sure its reason to exist is no longer an issue.


https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs