Petition: Opposing MEGA

[batteredoldbook]

...the MEA sitting on the fence awaiting the details and currently consulting members, though not with full enough information in my opinion.

The MEA should be commended on taking strong public positions on PACE, CBT and GET. But actions speak louder than words. That the MEA consistently finds reason to trumpet and support the CMRC, an ME research group incapable of publicly discussing ME research, demonstrates a serious failure of judgement. Every single day that PACE is left unaddressed is a day when M.E patients suffer unjustified stigma, mistreatment and disrespect. That medical professionals can stand by and permit this outrage, beggars belief. That they can try to move on to new research (MEGA) without addressing the serious methodological problems exposed in previous research, beggars belief. Yet it seems British medicine will choose to dig their way to New Zealand before admitting what patients already know to be case, what we have always known: M.E patients described Post Exertional Illness and their physicians chose not to believe them. And they were very wrong. And decades later, here we all are.

@batteredoldbook

 

[AndyH]

I don't understand how one person can possibly represent all 4 charities? How?

They may take decisions agreed by all four to MEGA but I think it's clear they do not hold all the MEA and MERUK's views. A4ME, AYME and Crawley may as well be counted as one unit because they are intrinsically linked IMHO.

 

[Jan]

They may take decisions agreed by all four to MEGA but I think it's clear they do not hold all the MEA and MERUK's views. A4ME, AYME and Crawley may as well be counted as one unit because they are intrinsically linked IMHO.

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?

 

[Dx Revision Watch]

Posted 30 minutes ago on AfME Facebook and website:

https://www.actionforme.org.uk/news/why-we-are-supporting-the-mega-research-project/

Why we are supporting the MEGA research project
November 22, 2016

In response to questions asked by our supporters and others affected by M.E., we would like to clarify our position on the M.E./CFS Epidemiology and Genomics Alliance (MEGA) research project, and set out our reasons for supporting it.

MEGA is the culmination of the Grand Challenge, launched at the 2015 UK CFS/M.E. Collaborative (CMRC) conference. We are one of four charities who sit on the Board of the CMRC. The other three are the M.E. Association, M.E. Research UK and the Association of Young People with M.E.

It was agreed that Action for M.E. would represent all four charities on the MEGA team. We are not there as scientists, but instead to advise on patient engagement and to support the patient advisory group (see below).

The MEGA team is trying to understand more about the biology of the M.E. to improve the lives of people living with the condition.

Action for M.E. is working with the MEGA team because we believe there is a desperate need to better understand the biology of this illness, currently called M.E. and/or CFS in the UK, and the subsets that exist within it. If funding is successfully applied for, this big data study will be first of its kind in this illness field and will use samples and data from 12,000 people who have been diagnosed with M.E. and/or CFS.

Large biomedical studies like this one are essential if we ever hope to make a significant and lasting improvement to the lives of people with M.E.

Action for M.E. believes that researchers and people with M.E. should work together to design, implement and disseminate research. Our role is to play an active part in the MEGA team and to support, along with the other three charities, the open recruitment and development of an advisory group of 12-15 people affected by M.E., including carers. This advisory group will play a proactive role in the process of making decisions about key elements of the study, such as who is or isn’t eligible for participation in the study.

Biomedical research
Action for M.E.’s research focus is on biomedical research, investing in research infrastructure which includes bringing researchers into the field and increasing collaboration. This is approximately 20% of the charity’s work as a whole. The focus of the MEGA study is not psychological and does not test any form of treatment, behavioural or otherwise.

We know some people have concerns about the MEGA study. We would like to reiterate that no decisions have been made about the design of the study because the team has yet to recruit the advisory group that will play a role in making these decisions. In this field, the most severely affected are the most severely neglected and we have a responsibility to ensure that this study design includes people with mild, moderate and severe M.E.

The scientists and researchers involved in MEGA cover the spectrum of disciplines in the -omics field. Some of the scientists on the MEGA team are members of the CMRC, but the majority are not and come from different medical research fields. 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).

Unrelated to MEGA, both receive funding from Action for M.E. for individual research projects. Prof Newton receives £30,000 funding from donations made to the charity plus a £5,000 contribution from a non-M.E. research charity for an autonomic dysfunction study. Prof Crawley receives a £6,000 match-funding grant, fully funded by a venture capital company (who wish to remain anonymous), for a surveillance study to identify how many children and young people have severe M.E.

Researchers, plus advisory group members and Action for M.E. (representing the four charities as outlined above) make up the MEGA team, and decisions will be made using a mutually agreed process. You can find out more about the MEGA vision and engage with team on the new MEGA website which will be launched very soon. We will link to the site as soon as it becomes live.

[Ends]

 

[Solstice]

Another load of bull. If i were a patient with an afme membership i'd run like hell.

Part of me is really bothered with this. Another part thinks, Davis, Lipkin, Fluge/Mella are making such strides that this whole thing is gonna be absolete before they've even finished recruiting patients. Gonna donate some more, fuck em.

 

[Jo Best]

The smell of pants on fire is getting more acrid by the hour.

 

[Chrisb]

Everything seems to be based on the assumption that the interests of patients and researchers are identical

If funding is successfully applied for, this big data study will be first of its kind in this illness field and will use samples and data from 12,000 people who have been diagnosed with M.E. and/or CFS.

Is this statement entirely correct? It clearly gives the impression that the "and" in "samples and data" is to be construed conjunctively. I was under the impression that it had already been made very clear that although it was proposed that data should be collected from 12000, testing on samples would be from much smaller numbers, and only if second stage funding became available.

Perhaps I am wrong.

 

[Cinders66]

To be fair, I'd say at the moment it's
AFME and AYME supporting MEGA,
IIME and Tymes against,
and the MEA sitting on the fence awaiting the details and currently consulting members, though not with full enough information in my opinion.

I wrote my comments to the MEA (I'm a member) in an e-mail today. I had a brief reply from Charles Shepherd (amazingly prompt) thanking me and saying they will consult members again when the details of the MEGA bid are available. He also said he's on holiday so I guess he won't be on PR for a while.

I think the chances of MEA NOT endorsing MEGA whatever criteria, slim. I'm guessing they will use the bio bank samples in existence but that will be 300-500 of 12,000.

 

[Cinders66]

If this is the case, in which areas is Holgate advising AfME?

That's too incestuous for me. Especially in a climate where many feel MRC has failed pwME , to have an MRC rep on their board , where's the independence. Its being in bed together.

 

[Wildcat]

.
Where does the information that Holgate is advising AFME come from?

Holgate is not on the AFME Board of Trustees - https://www.actionforme.org.uk/about-us/board-of-trustees/


And he is not currently listed as a Medical Advisor to the charity - .... https://www.actionforme.org.uk/about-us/our-medical-advisers/

Was it that Sonia said or wrote something which stated that AFME is being advised by Holgate? Is it something to do with MEGA, for instance.

.

Edit: Found it. One of the questions to Holgate from IIME's letter to him:

""With your status as advisor to Action for ME do you not feel you have a distinct conflict of interest ....
http://investinme.org/IIMER-Statement-1611-02.shtml
.

 

[slysaint]

I know very little about the MEA apart from what I've picked up here so just had a shufty and was surprised:
Patrons
HRH The Duke of Kent KG GCMG KCVO
Etain, Lady Hagart-Alexander
The Countess of Mar
Professor Peter O Behan (Professor Emeritus of Neurology at University of Glasgow)
Rt Hon John Bercow PC MP (Speaker of The Commons)
Dr Anne Macintyre
John Rutter CBE (composer and founder of The Cambridge Singers)

ME Association Board of Trustees
Chairman Neil Riley
Vice-Chairman Rick Osman
Hon Treasurer Ewan Dale
Trustees Martine Ainsworth-Wells, Dr Charles Shepherd, Nicki Strong
Associate Trustee David Allen

Company Secretary Gill Briody

Panel of Advisers
Hon Medical Adviser Dr Charles Shepherd
Hon Dental Adviser Dr Richard Cantillon
Hon Diet and Nutrition Adviser Sue Luscombe

Apart from CS and the Countess of Mar have any of the others on the list 'spoken out' or engaged with the ME Community? (this is a real question not sarcasm)

 

[Dx Revision Watch]

.
Where does the information that Holgate is advising AFME come from?

Edit: Found it. One of the questions to Holgate from IIME's letter to him:

""With your status as advisor to Action for ME do you not feel you have a distinct conflict of interest ....
http://investinme.org/IIMER-Statement-1611-02.shtml
.

Where does Invest in ME's information come from and in what capacity and in what areas is Holgate advising AfME?

 

[trishrhymes]

I've been having a think about the barrage (?) of great letters Holgate is likely to receive from us in the near future. I've signed one and have seen a couple of others in draft, and there may well be others.

My impression so far is of some very well thought out detailed letters that are well worth sending.

I suspect Holgate will skim through them, draft a stock response on the lines of 'this is premature, the details haven't been finalised, it's not a clinical trial and is nothing to do with PACE, see our new website, blah, blah...'.

I wonder, now that he must have some inkling of our concerns, whether it's time for a letter just consisting of a set of straight questions. Here's my suggestion, drafted in haste. What do you think:

Dear Prof. Holgate,

You will by now be aware of the concerns of some ME sufferers and their families about the CMRC and the proposed MEGA study. We would be grateful for your answers to the following questions:

1 Will you publicly announce on behalf of yourself and the CMRC (via a Science Media Centre press release) your unequivocal understanding that the PACE trial outcome showed that exercise and CBT do not lead to recovery in ME patients, that the treatments do not work and can be harmful, that the biopsychosocial model of ME is unprovable and unproven, and that there is unequivocal evidence that ME is a biological illness that cannot be cured or significantly improved by psychological methods.

2. Will you publicly announce on behalf of yourself and the CMRC (via a Science Media Centre press release) your unequivocal withdrawal of support for FITNET, which you now understand not to be justified by any valid research evidence, whose claims of success have been wildly exaggerated, and whose methods based on increasing activity may be dangerous to patients with ME.

3. Will you act to remove Esther Crawley and all proponents of the BPS model of ME/CFS from any involvement with MEGA.

4. Will you ensure that MEGA is designed to provide a representative sample of ME/CFS sufferers as defined by internationally recognised research criteria, including a stratified sampling of age, duration of illness, severity of illness and gender, even if this means that the sample size has to be considerably smaller than envisaged.

5. Will you ensure that all biomedical studies done by MEGA are done in co-operation with and informed by internationally recognised experts in ME biomedical research so limited funding can be most productively focused.

6. Will you base the study on the already existing ME biobank that ME patients have confidence is properly set up with well diagnosed patients, expanding it as funding allows.

7. For a whole genome study which needs a larger sample, will you act in concert with international researchers, pooling data into a single database to avoid the need for so many thousands of British patients, this speeding up the process and avoiding pointless duplication.

8. Will you inform yourself and others of your team about current biomedical research in ME by reading reports of all papers presented at the recent International CFS/ME conference in the USA and other published papers.

9. Will you ensure that all studies using MEGA data are published in open access journals concurrently with openly available the raw anonymised data on which they are based.

10. Will you clarify the remit of the CMRC? Is it an advisory group to the MRC, a professional body of ME/CFS researchers, a body designed to promote and/or commission CFS/ME research, or a group setting up a clinical trial and applying for funding?

11. Will the MEGA group remove from its membership anyone with links to funding bodies, and apply through the normal peer review and competitive tendering processes for funding?

What think you? Anyone fancy signing this?

Edit: I would add a note to the letter stating that the letter and any response we receive from him will be published on a public forum on the Phoenix Rising website.

second edit. @TiredSam suggests I remove point 11. Will do. If you fancy signing, PM me with the name you want to be known by on the letter, so you don't have to reveal it publicly here if you don't want to. I intend to send it on or after Friday this week (25th November and will PM people with the final version before sending to make sure they are happy with the final wording. Does anyone have holgate's e-mail address to send it to?

Third edit: I will just send it in my name but make it clear that I will make my letter and the reply public. This gets around the problem of people not wanting to reveal real names, which I understand and respect.

 

[Dx Revision Watch]

As the question of who is part funding the Crawley study was raised earlier:

"...Prof Crawley receives a £6,000 match-funding grant, fully funded by a venture capital company (who wish to remain anonymous), for a surveillance study to identify how many children and young people have severe M.E."

Unclear, though, whose proposal it was that this donation should be used for a Crawley study.

 

[Cinders66]

No

I know very little about the MEA apart from what I've picked up here so just had a shufty and was surprised:
Patrons
HRH The Duke of Kent KG GCMG KCVO
Etain, Lady Hagart-Alexander
The Countess of Mar
Professor Peter O Behan (Professor Emeritus of Neurology at University of Glasgow)
Rt Hon John Bercow PC MP (Speaker of The Commons)
Dr Anne Macintyre
John Rutter CBE (composer and founder of The Cambridge Singers)

ME Association Board of Trustees
Chairman Neil Riley
Vice-Chairman Rick Osman
Hon Treasurer Ewan Dale
Trustees Martine Ainsworth-Wells, Dr Charles Shepherd, Nicki Strong
Associate Trustee David Allen

Company Secretary Gill Briody

Panel of Advisers
Hon Medical Adviser Dr Charles Shepherd
Hon Dental Adviser Dr Richard Cantillon
Hon Diet and Nutrition Adviser Sue Luscombe

Apart from CS and the Countess of Mar have any of the others on the list 'spoken out' or engaged with the ME Community? (this is a real question not sarcasm)

No

Many of the patrons are over 65 I think and have a low profile, the trustees are quite background. Dr Anne macintyre was a bigger ME name in the 90s. The duke of Kent was involved in the big media event which was the setting up of the CMRC, He was there as the celeb and may well have hosted it. This field, accept the Countess, isn't one acting as the tragedy it really is in my view.

 

[TiredSam]

What think you? Anyone fancy signing this?

Not sure about point 11, but yes, I'd sign it.

 

[Jo Best]

David Tuller inlcudes a reference to the Opposing MEGA petition in his article about FITNET -
http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/

Dr. Crawley is a professor of child health at the University of Bristol. She is also currently recruiting for the MAGENTA study of graded exercise therapy for children with the illness. She is a lead player in the U.K. CFS/ME Research Collaborative, an umbrella organization that is sponsoring an ambitious Big Data effort called MEGA, now in the planning stages. While patients and advocates are desperate for the kind of top-notch biomedical and genetic research being proposed, many oppose MEGAprecisely because of the involvement of Dr. Crawley and Peter White, the lead PACE investigator. (Dr. White is reportedly no longer involved in MEGA; Dr. Crawley still definitely is.)

 

[Jo Best]

p.s. by the end of the day 23rd November, the Opposing MEGA petition will have been open for the same number of days as the MEGA petition. There are currently 2,825 signatures and it would be good to reach 3,000 by then -
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[Dx Revision Watch]

I know very little about the MEA apart from what I've picked up here so just had a shufty and was surprised:
Patrons
HRH The Duke of Kent KG GCMG KCVO
Etain, Lady Hagart-Alexander
The Countess of Mar
Professor Peter O Behan (Professor Emeritus of Neurology at University of Glasgow)
Rt Hon John Bercow PC MP (Speaker of The Commons)
Dr Anne Macintyre
John Rutter CBE (composer and founder of The Cambridge Singers)

ME Association Board of Trustees
Chairman Neil Riley
Vice-Chairman Rick Osman
Hon Treasurer Ewan Dale
Trustees Martine Ainsworth-Wells, Dr Charles Shepherd, Nicki Strong
Associate Trustee David Allen

Company Secretary Gill Briody

Panel of Advisers
Hon Medical Adviser Dr Charles Shepherd
Hon Dental Adviser Dr Richard Cantillon
Hon Diet and Nutrition Adviser Sue Luscombe

Apart from CS and the Countess of Mar have any of the others on the list 'spoken out' or engaged with the ME Community? (this is a real question not sarcasm)

Board of Trustees Chairman, Neil Riley, has from time to time published letters. Ewan Dale used to engage with patients/advocates on FB, but I have not held a FB account for several years, now, and I don't know whether Ewan still does.

Note that the MEA operates without a CEO (or similar paid executive position) and has not had a CEO since the Val Hockey debacle in 2003/2004.

Dr Shepherd first stood for election to the BoT after he had lost his position as a salaried medical adviser to the MEA.

Since his election to the Board, the Board of Trustees has run the organisation with no paid CEO. Some of the trustees (CS, NR, ED, RO) have been trustees since the Board was reformed following the departure of the Chief Executive, Val Hockey.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1150994/

 

[trishrhymes]

Not sure about point 11, but yes, I'd sign it.

See second edit - will remove point 11.