Petition: Opposing MEGA

Chrisb

Senior Member
Messages
1,051
How normal is it in the world of medical research to submit funding applications in this manner? A group purporting to wish to study "bolomics" submits an application for data collection saying that it will make its application for what it really wants to do later, upon completion of the earlier work.

Imagine a developer wishing to construct a skyscraper. He goes to a commercial lending group saying here are my plans for putting in the services and foundations. Lend me some money to do this and I'll come back and talk to you, when that is done, about funding for the rest of the project. In the "real" world it would never happen. The laughter would follow him out of the door if it did.

One would reasonably expect funding for the entirety of the project to be in place before starting. Payments would be staged; later tranches of money only becoming available upon certification of completion of prior stages. Variations to the terms would inevitably be discussed as work progressed but there would be in place something rather more binding than a memorandum of understanding, and even that does not seem to be sought here.

Or if it is patients are expected to offer unconditional support without worrying their little heads about such matters.

Why can an application for funding for the whole project not be made at the commencement, with agreement about staged payments and what conditions must be satisfied before release of later tranches? Presumably one of the conditions would be regarding timing. One might not expect payment of a second tranche within, say, four years.

The way in which the matter appears to be dealt with gives a very unfortunate impression that the bolomics is merely an add on extra. The initial work is designed to be capable of standing and being accepted on its own merits. It is all very odd.

If this has already been discussed, I proffer apologies. I do forget.
 

eafw

Senior Member
Messages
936
Location
UK
Perhaps even Davey-Smith could be lured away from MEGA to participate in something that is very tightly medical and well organised with strong protocols and excellent science and that uses the biobank?

I get the distinct impression that GDS is only interested in bums on seats - the more the merrier - and something better organised around ME-proper is less likely to deliver people in large enough numbers. Would also be pretty sure that, despite his pathetic protestations that he "knows nothing about CFS", he has been well briefed by EC (they are both at Bristol), so I doubt he'd be for turning.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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UK
"MEGA is committed to meaningful engagement and communication with members of the ME/CFS community."

The deadline for submission of applications for the Patient Advisory Panel is a mere 6 days (5 days from this morning).

When challenged, last night, as to why the MEA signed off on that decision, Dr Charles Shepherd says:

"Simon - I agree with you and I took the position that this is a very short deadline for people to submit applications

"I will see if the others will agree to an extension and I will also raise this with Professor Holgate when he comes to the House of Lords meeting next week"

and (in response to me):

"I don't know if you have ever worked in a group where different people have different views on a specific decision that has to be made.

"But it's quite a common process out there in the real world and it does sometimes mean that you end up accepting a decision that you may not necessarily agree with………"

When further challenged about this offensive and patronizing response and the imposition of a 6 day window - a time frame that is wholly inappropriate for a disability group stakeholder recruitment exercise, he says:

"I was just pointing out what happens in real life when you are part of a decision making process that involves a group of people with differing views…."


So that's alright, then.


(Action for M.E. is acting as admin for the application process. Applications will be considered by a panel consisting of representatives from the ME Association and ME Research UK and a representative from the MEGA team, Prof Paul Little.)


 
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batteredoldbook

Senior Member
Messages
147
"MEGA is committed to meaningful engagement & communication with members of the ME/CFS community."

The deadline for submission of applications for the Patient Advisory Panel is a mere 6 days (5 days from this morning).

When challenged, last night, as to why the MEA signed off on that decision, Dr Charles Shepherd says:

"Simon - I agree with you and I took the position that this is a very short deadline for people to submit applications

"I will see if the others will agree to an extension and I will also raise this with Professor Holgate when he comes to the House of Lords meeting next week"

I feel Dr Shepherd says reasonable things, but in the end supports those who are doing unreasonable things.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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I feel Dr Shepherd says reasonable things, but in the end supports those who are doing unreasonable things.

If he was unable (or unwilling) to successfully make the case for a reasonable time frame for submission of applications, it does not bode well for how much influence the MEA is going to have in the project.

And what were the rest of the MEGA decision makers thinking of?

This is a disability group for Fs sake. Totally unreasonable.
 

TreePerson

Senior Member
Messages
292
Location
U.K.
If he was unable (or unwilling) to successfully make the case for a reasonable time frame for submission of applications, it does not bode well for how much influence the MEA is going to have in the project.

And what were the rest of the MEGA decision makers thinking of?

This is a disability group for Fs sake. Totally unreasonable.
Dr Charles Shepherd's position reminds me of Nick Clegg. Really not sure how well that worked. I am probably not allowed to say that. I mean does anyone on the MEGA team ever take any notice of him? I can't see any justification for such a short time frame. No genuinely open process with interests of patients at heart would impose this
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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On the new thread, started by Dr Shepherd, yesterday, he wrote:

"...If we are not happy with what is being proposed we will not provide any further support to the MEGA bid..."


But the MEA has already allowed itself to be co-opted into setting a ludicrously short time frame for submission of patient advisory panel applications.

I said on the thread last night:

@charles shepherd

I hope Dr Shepherd will contact Prof Holgate and whoever else was involved in the decision, this evening, and insist that an application window of only 6 days is grossly inadequate for any stakeholder group; that it fails to meet what a disability group should expect in terms of accommodations and that an extension of at least another 3 weeks should be agreed and announced before the weekend.

In the interests of transparency, I am not intending to apply for a place on the Patient Advisory Panel, as a carer. But if I were, given my commitments, I would certainly demand an extension to the submission date.

I despair that patients and carers have had to expend limited time and energy arguing for something which should have been a given.​
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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As sent today (1/11/16) via the Question form on the MEGA site:

http://www.megaresearch.me.uk/contact-us/

The deadline for application for consideration for a position on the Patient Advisory Panel is just 6 days.

This would be inappropriately short for any stakeholder patient group.

It is not at all acceptable for a disability patient group and it does not reflect expectations of provision of disability accommodations/inclusivity by NGOs, registered patient organisations etc.

1 Whose decision was it to place a time limit of just 6 days to prepare and submit an application?

2 What was the rationale for imposing such a tight deadline on a disability group stakeholder participation recruitment exercise?

3 Will urgent consideration be given to extending the deadline by at least an additional three weeks and announcing this before the weekend?

I shall be pleased to receive a timely response to these questions.

Suzy Chapman
[email address redacted]

Edited to add: Since this is a very time sensitive matter, I have emailed these questions and a request for an extension directly to Prof Holgate. I have CCd in Sonya Chawdhury; Dr Charles Shepherd and MEA's Neil Riley.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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UK
I have just been advised by AfME's CEO, Sonya Chawdhury, that Prof Holgate is currently in Australia and that my email has been forwarded on to his assistant.

Edit: I have asked that Prof Paul Little is also CCd in.
 
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batteredoldbook

Senior Member
Messages
147
On the new thread, started by Dr Shepherd, yesterday, he wrote:[/USER]

Am sorry to read Dr Shepherd decided to speak elsewhere rather than address Professor Holgate's behaviour towards 200 pwme. http://forums.phoenixrising.me/index.php?threads/petition-opposing-mega.47466/page-70#post-788915

As always, pwme, respect is fundamental. You can talk science, awareness & politics until you're blue in the face, but without respect, you will not make progress.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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http://www.parliament.uk/business/p...ts/written-question/Commons/2016-11-22/54353/

Date: November 30, 2016

[Written Answers]

Chronic Fatigue Syndrome: Research
----------------------------------

Kelvin Hopkins

To ask the Secretary of State for Business, Energy and Industrial
Strategy, if he will take steps to identify those responsible for the
Medical Research Council's policies towards ME research over the last
decade; and if he will seek those people's removal from positions of
influence over future of ME research. [54353]


Joseph Johnson

Management of individual staff within the Medical Research Council is a
matter for the MRC as the legal employer.

~~~~~~~~~~~~~~~~~~

Date: November 30, 2016

http://www.parliament.uk/business/p...ts/written-question/Commons/2016-11-22/54354/

[Written Answers]

Chronic Fatigue Syndrome
------------------------

Kelvin Hopkins

To ask the Secretary of State for Business, Energy and Industrial
Strategy, if he will review the policy of the Medical Research Council
(MRC) in so far as it relates to addressing the dissatisfaction of ME
patients with MRC's approach in this area. [54354]


Joseph Johnson

The MRC welcomes applications to support research into any aspect of
human health and these are subject to peer review and judged in open
competition. Awards are made on the basis of the scientific quality of
the proposals made. The MRC has promoted research into Chronic Fatigue
Syndrome/Myalgic Encephalopathy (CFS/ME) through highlight notices for a
number of years.

Concerning dissatisfaction of patients, I will write to the Chair of the
Medical Research Council to request an account of the development of
relevant policies and in particular how CFS/ME patients' views have been
considered. I will deposit a copy of his reply in the Libraries of the
House.

~~~~~~~~~~~~~~

Updates via Marc-Alexander Fluks
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
Concerning dissatisfaction of patients, I will write to the Chair of the
Medical Research Council to request an account of the development of
relevant policies and in particular how CFS/ME patients' views have been
considered. I will deposit a copy of his reply in the Libraries of the
House.

~~~~~~~~~~~~~~

Updates via Marc-Alexander Fluks

Thats very interesting.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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MEGA blog posting

http://www.megaresearch.me.uk/2016/12/01/patient-advisory-group-application-deadline-extended/

Patient Advisory Group application deadline extended

December 1, 2016 by Sonya

We have been contacted by a number of people asking if it’s possible to extend the deadline for applications to join the Patient Advisory Group.

We want to ensure that those who wish to engage with this process are able to do so, and so have extended the deadline to 9am 13 December 2016.


The reason that the timescale is so short is because the mainstream funder to whom we want to apply for MEGA funding has an application deadline in early January 2017. This deadline was only recently announced and was different to the timings we expected.

Financial costs need to be established before submission and so, as the Patient Advisory Group will play a part in shaping the design of the study, recruitment needs to happen urgently. Researchers are keen to gather the views of the group to inform decisions about which phenotypes are important to measure.

There will then be a couple of months for the Patient Advisory Group and researchers to develop a more detailed design.

If we miss the deadline for this funder, we will not be able to apply again until 2018.

The timetable for recruiting the MEGA Patient Advisory Group and holding its initial meeting is now as follows:




    • 9am 13 December 2016 – Deadline for applications to join the MEGA Patient Advisory Group
    • 13-14 December – Applicants contacted and group members confirmed
    • w/c 19 December – Papers and key information sent out to Patient Advisory Group members
    • 29 or 30 December – Patient Advisory Group teleconference and/or e-group meeting held
    • 4 January 2017 – Back-up call for Patient Advisory Group if needed, to address outstanding issues from December meeting.

 
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Snowdrop

Rebel without a biscuit
Messages
2,933
I get the distinct impression that GDS is only interested in bums on seats - the more the merrier - and something better organised around ME-proper is less likely to deliver people in large enough numbers. Would also be pretty sure that, despite his pathetic protestations that he "knows nothing about CFS", he has been well briefed by EC (they are both at Bristol), so I doubt he'd be for turning.

Sadly, you may be correct. I'm hoping the Jan 2017 deadline goes by without them having their ducks all in a row to apply for the funding. A lost hope perhaps.

But again, there must be some respectable researchers that could be put together for a 2018 bid by a group not tainted by BPS. Or do researchers already know that no funding would be forthcoming without their (BPS) inclusion?
 
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trishrhymes

Senior Member
Messages
2,158
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.
 
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