Are you on the MEGA PAG?

[charles shepherd]

@charles shepherd, having seen this, I hope the MEA will now publicly withdraw support from MEGA.

Simple answer is no

The MEA position has not changed:

We support the principle of the MEGA study - i.e. using a number of new investigative techniques including genomics, epigenetics, metabolomics, proteomics etc on a large group of people with research defined ME/CFS - with the aim of helping to increase our understanding of both sub-grouping and pathoeatiology of ME/CFS

We have a number of concerns and questions regarding the protocol and study design for MEGA. These have not yet been resolved.

When the study design is finalised we will come to a decision as to whether we want to support a bid to obtain funding for the MEGA study

We will take the views of our members, and the MEGA PAG (including the 3 members who have resigned), into account when we make our decision

As there are a number of things taking place at the moment where I have to maintain confidentiality agreements that is as far as I can go re MEGA this week

CS

 

[user9876]

Thanks for letting us know. As expected, Crawley holds the key role, and she is a disaster for patients.

She will probably be a disaster for any researchers involved in MEGA who want to do a proper job. If the sample collection is done badly the results could be meaningless. MEGA could end up as another way for Crawley to waste money because she hasn't thought out the details. The fitnes protocol is so bad that the results will be meaningless and hence £1m wasted.

 

[user9876]

Davey-Smith will have been well briefed by Crawley, despite his public protestations that he "knows nothing". For both of them this is about empire building and careers. Never mind that GDS is considered to do better quality work, MEGA is a means to an end: lots of publications, and the status of "largest CFS trial"/ "groundbreaking big data" etc.

He at least should realize that it could be career building but also career ruin - but maybe that is why he is keeping in the background and saying he knows nothing.

Crawley is convincing but not if you dig even a mm below the surface.

 

[slysaint]

I am more and more puzzled by Davey-Smith's commitment. Playing the card of the outsider after 10 years is becoming unsustainable and nearly ridiculous.

Just came across this from 2007:
Is chronic fatigue syndrome (CFS/ME) heritable in children, and if so, why does it matter?

1. Esther Crawley1,
2. George Davey Smith2

http://adc.bmj.com/content/92/12/1058

Which would suggest he knows more than he implies (?)

 

[TiredSam]

Just came across this from 2007:
Is chronic fatigue syndrome (CFS/ME) heritable in children, and if so, why does it matter?

1. Esther Crawley1,
2. George Davey Smith2

http://adc.bmj.com/content/92/12/1058

Which would suggest he knows more than he implies (?)

Not necessarily, it's perfectly feasible that he knew very little about ME then and doesn't know any more now. It does make him look duplicitous though.

 

[Cinders66]

Research defined ME

Simple answer is no

The MEA position has not changed:

We support the principle of the MEGA study - i.e. using a number of new investigative techniques including genomics, epigenetics, metabolomics, proteomics etc on a large group of people with research defined ME/CFS - with the aim of helping to increase our understanding of both sub-grouping and pathoeatiology of ME/CFS

We have a number of concerns and questions regarding the protocol and study design for MEGA. These have not yet been resolved.

When the study design is finalised we will come to a decision as to whether we want to support a bid to obtain funding for the MEGA study

We will take the views of our members, and the MEGA PAG (including the 3 members who have resigned), into account when we make our decision

As there are a number of things taking place at the moment where I have to maintain confidentiality agreements that is as far as I can go re MEGA this week

CS

Research defined CFS/ME?
Nice criteria are for clinicians and not used outside uk

 

[slysaint]

he knew very little about ME then and doesn't know any more now

Mind you.........you could say the same about EC

 

[Snowdrop]

Any fresh news from people on the MEGA PAG ?
Is there a dedicated place for updates from them to the ME community at large?

 

[Cinders66]

As the MEGA PAG was mainly selective of people who were from the start extremely positive about MEGA and MEA magazine readers will largely have only what has been told them by the MEA, if Dr Shepherd plans to disregard what I think can be summarised as large scale "informed patient" concern expressed on PR in favour of those sought opinions, it would be a shame.

 

[slysaint]

 

[slysaint]

Just an example of how EC et al could use the data:

Health care resource use by patients before and after a diagnosis of chronic fatigue syndrome (CFS/ME): a clinical practice research datalink study

Received:
27 February 2017
Accepted:
01 May 2017
Authors

• • Simon M. Collin
  • Inger J. Bakken
  • Irwin Nazareth
  • Esther Crawley
  • Peter D. White

http://link.springer.com/article/10.1186/s12875-017-0635-z

Our aim was to investigate patterns of health care resource use by patients before and after a diagnosis of CFS/ME, as recorded by Clinical Practice Research Datalink (CPRD) GP practices in the UK.

Methods
We used a case–control study design in which patients who had a first recorded diagnosis of CFS/ME during the period 01/01/2001 to 31/12/2013 were matched 1:1 with controls by age, sex, and GP practice. We compared rates of GP consultations, diagnostic tests, prescriptions, referrals, and symptoms between the two groups from 15 years (in adults) or 10 years (in children) before diagnosis to 10 years after diagnosis.

Conclusions
Adults and children with CFS/ME have greater health care needs than the rest of the population for at least ten years before their diagnosis, and these higher levels of health care resource use continue for at least ten years after diagnosis."

Just in case anyone was in any doubt what MEGA will be used for.

 

[Demepivo]

@slysaint thanks for that paper.

I understand that all feedback from the MEGA PAG goes through Clare Ogden of AfME.

In practice, this means Clare acting as PA for Queen EC.

Patients submit ideas to Clare then she passes them in to EC who ignores them.

Queen EC then gives out instructions to delivered by Clare.

Clare is available by email: clare@actionforme.org.uk if you want to raise any issues.

 

[trishrhymes]

You really don't need to keep giving me AfME s email addresses thanks I know what they are.

But other people might not know them and want to join in the discussion.

 

[Demepivo]

@slysaint The details on the MEGA PAG were for anybody interested to see.

You were thanked for posting the link.

 

[Demepivo]

@trishrhymes yes, the reason I post individual email addresses is so readers can contact people directly if they want to (& have the energy).

Writing to a generic mailbox doesn't really help, as the most junior member of staff looks after it.