New MEGA study website (30 November 2016)

[Dx Revision Watch]

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

CS

@charles shepherd

Dr Shepherd, if you objected to the very tight deadline why did you not refuse to proceed as one of those with responsibility for reviewing applications until a more reasonable deadline had been negotiated?

The Patient Advisory Panel recruitment and selection process is already not fit for purpose. But you've evidently agreed to remain on the selection group for a process that you agree discriminates against those who would need longer than a few days in which to prepare an application.

The MEGA Team and the org reps are laying themselves open to accusation that in imposing such a tight deadline, the selection of patients for the advisory panel is a "done deal".

If it is proving so intractable to get basic things like this sorted - I have to ask what is the point of having patient org reps involved at all?

 

[Dx Revision Watch]

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 to his assistant.

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

 

[docsimsim]

Auto response from Prof Holgate:

"I am away at present and will only be reading my e-mails intermittently. For anything urgent please contact my assistant, Mrs Chris Vincent on 02381 206960 or e-mail cav@soton.ac.uk<mailto:cav@soton.ac.uk>"

It's odd how no one seems to be available ATM with 1.5 working days to go till deadline! Have phoned both MERUK and MEA and it's the same! "We don't know anything about this latest MEGA statement"!

 

[docsimsim]

I'm inclined to agree with @charles shepherd . I completely understand all your arguments and criticisms, Jonathan, but if MEGA is going to happen we need people like you inside the tent. There are some good scientists involved and if enough people like you were to join maybe, just maybe, it could be turned round. You already spend a great deal of time in discussions about MEGA so why not do it from a position of greater influence? What's the worst that could happen?

I agree. It's better to have individuals such as prof Edwards and Dr Shepherd inside than the outside. MEGA seems to be on its way to be another BPS runway train, like PACE. We need those who will stand up to its main oprators (Esther Crawley) who are set to pocket more millions of ££££ for more biased research

 

[Jo Best]

This is like watching a motorway pile up in progress and only able to shout 'stop!"

MEGA cannot be rescued by Jonathan Edwards joining because the evidence is increasingly overwhelming that MEGA is intended to cement the bio-psycho-social illness model into mainstream healthcare, as well as keep certain medics and researchers in business for years to come, quite probably until a comfortable retirement. This has been in the planning for years and again, I think the evidence is there that this is what the CMRC was created for.

Jonathan Edwards is doing more for ME research in his role on the Invest in ME Research Advisory Board and a translational biomedical research strategy is already underway. He has also, among other work, made an impressive contribution by his critiques of the PACE trial and speaking up for members of Phoenix Rising, noted by the Tribunal - http://informationrights.decisions....iversity of London EA-2015-0269 (12-8-16).PDF

 

[jodie100]

Deadline for applications to join the MEGA project Patient Advisory Group extended to 9am 13 December 2016 -

https://twitter.com/i/web/status/804337998221471744

 

[Dx Revision Watch]

Deadline for applications to join the MEGA project Patient Advisory Group extended to 9am 13 December 2016 -

https://twitter.com/i/web/status/804337998221471744

An extension of 7 days is still inadequate.

 

[docsimsim]

An extension of 7 days is still inadequate.

Yes it's not enough is it? And the December timing is quite a poor choice as many researchers might not be available for patients to obtain info?

 

[Dx Revision Watch]

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
http://www.megaresearch.me.uk/author/sonya/
http://www.megaresearch.me.uk/author/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.

 

[Wildcat]

.

'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.'


Who is the mainstream funder?

Do they have a website, for example.

Why such vagueness about funding application dates?
.


.

 

[Dx Revision Watch]

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.

2 days in which applications are to be reviewed and selection process carried out.

"29 or 30 December – Patient Advisory Group teleconference and/or e-group meeting held"

Between Christmas and New Year - when some applicants may be away or have increased family commitments or may be recuperating following holiday induced PEM and crashes.

 

[docsimsim]

I suspect that your earlier post (ie that the 'candidates' have already been selected) maybe right.
Has anyone emailed AfME to request a copy of the application form? (they say to do this if you have any problem downloading it). It would be interesting to see if they do/ their reply.

.

'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.'


Who is the mainstream funder?

Do they have a website, for example.

Why such vagueness about funding application dates?
.


.

The Welcome foundation? Let's hope they don't mean the NHS funding body who's already given Crawley £1 million only this year. She's like a money Hoover for talking therapies. Her coffers are veeeery deep

 

[BurnA]

Those schedule dates don't account for any input or changes do they.

Maybe it wouldn't be a bad thing if the early January date was missed? There is no way that everything wrong with MEGA can be sorted in one or two meetings.

 

[docsimsim]

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.

2 days in which applications are to be reviewed and selection process carried out.

"29 or 30 December – Patient Advisory Group teleconference and/or e-group meeting held"

Between Christmas and New Year - when some applicants may be away or have increased family commitments or may be recuperating following holiday induced PEM and crashes.

This is dreadful timing, as you say, in the Xmas period

 

[Dx Revision Watch]

Those schedule dates don't account for any input or changes do they.

Maybe it wouldn't be a bad thing if the early January date was missed? There is no way that everything wrong with MEGA can be sorted in one or two meetings.

I totally agree.

 

[trishrhymes]

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.

What a bizarre timetable. People chosen will be notified by Wednesday 14th December, but they won't send out the papers until the week commencing the following Monday 19th.

Looking at the best case scenario of sending them out promptly on 19th by e-mail, this means only 10 days, including Christmas to read, digest and sort out ideas about comments and questions.

If they literally mean paper copies, these will get caught up in the Christmas post, and may not arrive until after Christmas, ie Tuesday 27th December, then there's a 'meeting' on 29th or 30th, giving 2 or 3 days to study and prepare.

Why can't they send the stuff on 14th December. Presumably it's ready to go.

Or maybe it hasn't even been written yet.

Maybe it's on the back of an envelope somewhere and they've lost it.

Or the dog ate it for breakfast.

 

[Binkie4]

Point 2 of the revised schedule appears to require those choosing the eventual patient participants to read all the application documents, discuss them looking at what each applicant has said in their detailed application, select the most appropriate, deal with any disagreements between themselves, and contact the selected members, all in 2 days.

As far as I can see patient representatives would then need to work from when the papers arrive on 19th, assuming by email which will rely on everyone's technology working perfectly, throughout Xmas and be available without pem on 29th Dec. It is sure to be a mess and may then be used as an example of why patients can't be involved in future.

Nonsense!

 

[Jo Best]

I hope this will be reflected in the covering letter of the organisers of the Opposing MEGA petition. One of the commenters described it as an onmi-shambles and it's getting worse by the day since then. Considering the years patients/carers have waited and the fact that MEGA is by far the only game in town and they have so much planning to do, they should wait til 2018.

 

[Dx Revision Watch]

I hope this will be reflected in the covering letter of the organisers of the Opposing MEGA petition. One of the commenters described it as an onmi-shambles and it's getting worse by the day since then. Considering the years patients/carers have waited and the fact that MEGA is by far the only game in town and they have so much planning to do, they should wait til 2018.

Absolutely, and I put this to Chris Ponting, via Twitter. Better no funding application until 2018 than a rushed and shambolic application and a hastily cobbled together Patient Advisory Panel given insufficient time for the task for which they have been recruited.

 

[Dx Revision Watch]

What a bizarre timetable...

...Or the dog ate it for breakfast.

It is a dog's breakfast.