Petition: Opposing MEGA

[JohnM]

I don't know, but you are quite right. If AfME are acting as reps for the other three charity orgs, had the other three orgs reviewed the content of today's statement and approved it before it was released?

Edited to add: It's unfortunate that Dr Shepherd is taking some time out and is not around to clarify the MEA's relationship to this statement issued today by AfME. And how, if AfME release future statements re MEGA, readers are to determine when AfME is speaking on behalf of itself and when it is speaking on behalf of all the charity orgs involved.

My inner conspiracy theorist was suggesting on reading your original post, that AfME knew perfectly well that Dr Shepherd would be taking a well-earned break from today

 

[trishrhymes]

I've just visited the MEGA petition in a vain attempt to find Stephen Holgate's e-mail address to write to. Can anyone help?

While there I scrolled down and noticed this at the bottom:

'This petition was delivered to:

• Mainstream research funders
  in support of our biomedical M.E./CFS research project.'

That doesn't make sense. I thought they hadn't even clarified the detail of the bid yet, so why have they delivered the petition, and to whom? Weird. Any clues?

Edit: And can OMEGA be delivered to the same funders?

 

[Dx Revision Watch]

Thanks kindly @Dx Revision Watch .. seems my proof-reading skills are also deteriorating

It's easy done. As you may know, Action for M.E. was launched as "The M.E. Action Campaign", then changed its name in 1993.

But we also have ME Action UK website and Yahoo Group in the UK (owner: Stephen Ralph) and now #MEAction and its various arms.

 

[trishrhymes]

Response to "Why we are supporting the MEGA research project" Action for ME Nov22/2016; #pwme ~550 words.

Excellent, I hope you'll send it to MEGA (ie Holgate) and AfME.

 

[Dx Revision Watch]

Response from Invest in ME via Twitter

@dxrevisionwatch Trustee report and accounts 2014–2015 http://apps.charitycommission.gov.uk/Accounts/Ends19/0001036419_AC_20150331_E_C.pdf P14 "Research Panel ....... and Prof Stephen Holgate...."

2:34 PM - 22 Nov 2016
---------------

Trustee Report and Accounts 2014-2015

http://apps.charitycommission.gov.uk/Accounts/Ends19/0001036419_AC_20150331_E_C.pdf

P14

"The Research Panel meets quarterly and
comprises a mix of Trustees, Supporting
Members, medical adviser and Prof
Stephen Holgate. Alongside helping to
monitor the charity’s research-funded
activity, it also oversaw the development
of our new Research Strategy, launched
in April 2014."

https://www.actionforme.org.uk/research/our-research-panel/

Our research panel

Action for M.E.’s Research Panel is accountable to the Board of Trustees and meets four times a year to help steer our research strategy and ensure that research we are investing in is relevant and of value to people with M.E.

Chaired by our Trustee Jane Young, the Research Panel is responsible for helping develop Action for M.E.’s research strategy, overseeing the research strategy and ensuring it’s implemented properly, and monitoring research initiatives in the field of M.E. on behalf of the Board of Trustees to determine their relevance and potential value to people with M.E.

Jane is joined on the Panel by two additional Trustees, our Principal Medical Adviser, an independent research scientist*, our CEO, and a minimum of three patient/carer Supporting Members who have research experience (not necessarily in the field of M.E.).

We currently have no vacancies on our Research Panel.
​

*Presumably Stephen Holgate?

If this refers to Holgate, I hardly think he can be described as "independent".

 

[Dx Revision Watch]

"Action for M.E.’s Research Panel is accountable to the Board of Trustees and meets four times a year to help steer our research strategy and ensure that research we are investing in is relevant and of value to people with M.E."

So, as a member of AfME's Research Panel, would Holgate have been part of the decision making process that resulted in the donation of £6,000 being used for Crawley's £12,000 study on severe ME in children?

https://www.actionforme.org.uk/reso...ic-me-surveillance-study-youre-funding-about/

 

[Cinders66]

https://www.actionforme.org.uk/research/our-research-panel/

Our research panel

Action for M.E.’s Research Panel is accountable to the Board of Trustees and meets four times a year to help steer our research strategy and ensure that research we are investing in is relevant and of value to people with M.E.

Chaired by our Trustee Jane Young, the Research Panel is responsible for helping develop Action for M.E.’s research strategy, overseeing the research strategy and ensuring it’s implemented properly, and monitoring research initiatives in the field of M.E. on behalf of the Board of Trustees to determine their relevance and potential value to people with M.E.

Jane is joined on the Panel by two additional Trustees, our Principal Medical Adviser, an independent research scientist*, our CEO, and a minimum of three patient/carer Supporting Members who have research experience (not necessarily in the field of M.E.).

We currently have no vacancies on our Research Panel.
​

*Presumably Stephen Holgate?

If this refers to Holgate, I hardly think he can be described as "independent".

No and AFMEs research funding this year was disappointing seeing as it was supposed to be biomedical. One is a Crawley project

 

[Cinders66]

This year AFME gave awards to Crawley to study incidence & features i think of Paediatric Me& also funded this Newton trial to see if drinking more water can help ANS symptoms. Given that good fluid intake is something I'm sure all ambulant pwME bother with or try or can just do at home unsupervised I see it as a waste of time study. https://www.actionforme.org.uk/reso...nction-feasibility-study-youre-funding-about/

 

[AndyH]

That's exactly what I mean, how can they claim to represent everyone when they have such fundamentally different views? How did this come about, I'd really like to know?

Also, when representing joint decisions in MEGA, A4ME's own ideas can be viewed as those of the CMRC even thoughbthey may not be. We've seen how A4ME get away with this in their recent invention of the International ME Alliance.
Either all charities have their own representation in MEGA or they don't. It's odd for example, that the MEA say they are not part if MEGA, yet are purportedly represented by A4ME through the CMRC.

 

[slysaint]

AfME wrote:
"No-one now involved in MEGA has worked on the PACE trial. A number of researchers on the team represent clinical and research work with adults with M.E. (Action for M.E.’s medical advisor, Prof Julia Newton and a primary care researcher, Prof Paul Little) and children with M.E. (the Association of Young People with M.E.’s medical advisor, Prof Esther Crawley)."

"PACE was a great, great study" ???
MAGENTA.....PACE for children???
FITNET......more of the same.

talk about elephant in the room

AfME wrote:
EC "surveillance study to identify how many children and young people have severe M.E."

I thought she didn't believe severe ME existed in children? What's a surveillance study?

 

[lilpink]

Response from Invest in ME via Twitter

@dxrevisionwatch Trustee report and accounts 2014–2015 http://apps.charitycommission.gov.uk/Accounts/Ends19/0001036419_AC_20150331_E_C.pdf P14 "Research Panel ....... and Prof Stephen Holgate...."

2:34 PM - 22 Nov 2016
---------------

Trustee Report and Accounts 2014-2015

http://apps.charitycommission.gov.uk/Accounts/Ends19/0001036419_AC_20150331_E_C.pdf

P14

"The Research Panel meets quarterly and
comprises a mix of Trustees, Supporting
Members, medical adviser and Prof
Stephen Holgate. Alongside helping to
monitor the charity’s research-funded
activity, it also oversaw the development
of our new Research Strategy, launched
in April 2014."

Thanks. Banged to rights then!

 

[batteredoldbook]

I do want in writing from him an admission that he's unshiftable.

I am not sure you will get a reply.

 

[batteredoldbook]

Excellent, I hope you'll send it to MEGA (ie Holgate) and AfME.

I have tried to communicate to Prof Holgate twice previously. No luck I'm afraid. As to AfME, they blocked me during #CMRC2015 and I have yet to be told whether I have done something to offend them. When I decided to stop being an advocate and trying to represent other pwme this year, I blocked a hand full of UK ME charities and Action for M.E was one of these. Have been considering whether to add MERUK (due to their involvement in MEGA) today.
I have M.E and so naturally grow weary of being given the run-around.


Edit:

Oh, and sorry; thank you for the compliment. I find writing things longer than a tweet quite exhausting and so am glad to know it was worth it.

 

[Dx Revision Watch]

What's a surveillance study?

https://www.actionforme.org.uk/reso...ic-me-surveillance-study-youre-funding-about/

“...We will use a national surveillance unit to contact more than 3,400 UK paediatricians and find out whether they have seen a child with severe CFS/ME in the previous month. We will collect information including their age, gender, how the child presented, what treatment they received, how long they were unwell and information to determine if other diagnoses have been considered (eg. anxiety, depression, eating disorders).

“All completed questionnaires, shall be examined by an expert panel to determine whether the diagnoses of severe M.E. is correct or if further information is required. If necessary, we will examine the clinical notes to gather further information or to clarify the diagnosis. This study will tell us how common severe paediatric M.E. is, how it presents and what treatments are offered. We need to know this for future research, and to help inform current and future service provision.”

 

[slysaint]

determine if other diagnoses have been considered (eg. anxiety, depression, eating disorders)

expert panel to determine whether the diagnoses of severe M.E. is correct

sounds more like she is trying to disprove it's existance.

 

[daisybell]

sounds more like she is trying to disprove it's existance.

I wonder how many children will be suggested to have pervasive refusal syndrome during this study..
The potential for harm here seems huge - very worrying.

 

[Wildcat]

.
For interest:

List of Dr Esther Crawley's research as far back as 1991.

http://research-information.bristol...5-961b-db30939cfc55)/publications.html?page=0

.

 

[lilpink]

Please excuse me butting in but just want to give my thanks to those PR members who signed an email to Stephen Holgate to help him address his 'perplexity' about the OMEGA petition. Copies have also been sent to the rest of the MEGA team (or at least those who keep their online contact info up to date). I've also posted it on my blog. Good luck with your letter here. https://spoonseeker.com/2016/11/22/the-omega-petition-email-to-professor-holgate/

Potbatch aka Spoonseeker

But it does need to be made clear this mail does not emanate from the OMEGA Petition team.

 

[Countrygirl]

AfME wrote:
"No-one now involved in MEGA has worked on the PACE trial. A number of researchers on the team represent clinical and research work with adults with M.E. (Action for M.E.’s medical advisor, Prof Julia Newton and a primary care researcher, Prof Paul Little) and children with M.E. (the Association of Young People with M.E.’s medical advisor, Prof Esther Crawley)."

"PACE was a great, great study" ???
MAGENTA.....PACE for children???
FITNET......more of the same.

talk about elephant in the room

AfME wrote:
EC "surveillance study to identify how many children and young people have severe M.E."

I thought she didn't believe severe ME existed in children? What's a surveillance study?

I have it on excellent authority that she informs paediatricians that severe illness is 'not on the ME/CFS spectrum'

 

[slysaint]

One last blast at EC (for today). As others have pointed out, she's stayed very quiet about SMILE.......
https://frownatsmile.wordpress.com/2016/02/14/smile-trial-summary-of-concerns/

"
We have now finished recruiting and we plan to break the code and conduct the analyses in May/June 2014. We hope that we will be able to publish the results at the end of the 2015.

We have finalised the analyses plan which you can look at here (PDF, 696kB)"

Anyone know who/how to ask where the results are?