New MEGA study website (30 November 2016)

[docsimsim]

I spoke to someone at the Afme office about this today and they claim that it's MERUK, MEA and someone from the NIHR who decide on the patients advisory group for the adult arm of MEGA and that Afme have no say?!!!!!! The children's arm advisory group is already in place and it's the same one used in FITNET! I think the whole thing is a farce and we're being stitched up again, a la PACE. There is a lot of conflicting info. Total shambolionics IMO

 

[JoanDublin]

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……….

So if you had to accept the decision, then why are you saying you will now challenge it with Stephen Holgate? And can I please ask you to find another phrase to replace 'in the real world'. I might be the only one, but I find it highly offensive as it suggests people who disagree with you are living in some kind of alternative reality. I can assure you as a carer of a child with severe M.E. I very much live in the real world.

I also work by the way, as a CEO of an NGO so on a daily basis I'm involved in negotiating with people who have different views to mine. In fact you don't have to even go as far as that to understand that these processes are daily occurrences in every family.

 

[Simon]

If they give money to MEGA then there is less money in the pot for everyone else, including anyone else who applies for ME research. This is true regardless of if they have never given out money before to ME or not.

They spent £600m on science last year, a few milllion for MEGA isn't going to make a significant difference to what's available to other applicants.

 

[Dx Revision Watch]

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….

Why on earth did you feel that was necessary?

If you are unhappy with the decision to have a very limited time frame for patient advisory group applications why was the MEA not prepared to stand up and properly represent its membership and the wider patient group and advocate for a longer time period?

It doesn't even sit well with disability inclusion accommodations.

 

[Dx Revision Watch]

So if you had to accept the decision, then why are you saying you will now challenge it with Stephen Holgate? And can I please ask you to find another phrase to replace 'in the real world'. I might be the only one, but I find it highly offensive as it suggests people who disagree with you are living in some kind of alternative reality. I can assure you as a carer of a child with severe M.E. I very much live in the real world.

I also work by the way, as a CEO of an NGO so on a daily basis I'm involved in negotiating with people who have different views to mine. In fact you don't have to even go as far as that to understand that these processes are daily occurrences in every family.

Well said, Joan.

Suzy

 

[docsimsim]

Charles, according to the press officer at the Afme office (whom I rang today) you are one of the 3 people involved in selection of the patient advisory group? Is that the case? If so how do you expect us unsuspecting patients to participate at such a tight dealine? Most of us are too ill to be able to do this in a mere 4 days

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

ames

 

[A.B.]

@charles shepherd

The ME Association is on the panel that will rate the suitability of applicants to the patient advisory group. If the advisory groups turn out to be a farce, the ME Association will be seen as being an accomplice that helped Crawley despite many warning signs.

I believe you're acting in good faith, but I hope that you have a plan B for this case.

 

[Dx Revision Watch]

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

But you've already allowed yourselves to be co-opted into setting a ludicrously short time frame for submission of patient advisory panel applications.

Suzy

 

[Artstu]

How many more decisions is MEA going to sign off on that it doesn't agree with?
What is the point of MEA being a rep on this project?

I was going to make the point that a patient representative isn't likely to have any influence whatsoever, given that the MEA get completely ignored.

 

[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

If they would not apparently agree to an extension before today's comments, here, and elsewhere, what will persuade them now?

What was the rationale of the others involved in this decision for not accepting that 6 days is far too short for a disability group and that this decision disregards inclusion recommendations?

It's as inappropriate as holding a meeting on the fourth floor, with no lift and no wheelchair access.

 

[Cheshire]

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….

First let me tell you that if don't always agree with you, I am very grateful for the work you're doing, Charles.

But I really must tell you that I find the way you refer to "real life" whenever someone disagrees with you, very offensive when dealing with people that are deprieved of "real life" because of this terrible disease.

Some of us didn't get the chance to know what "real life" is because they were stuck by the illness too young. Does that mean their experience is less valuable?
And a lot of us have professional skills that haven't been erased because of the disease and perfectly know what it's like to work with people with different viewpoints.

And I've met in my professional life a lot of brainless people that didn't learn a lot from what you call "real life".
What did Esther Crawley and her lot learned from "real life", apart from skills to improve one's career?

 

[slysaint]

I will also raise this with Professor Holgate when he comes to the House of Lords meeting next week

won't this already be too late? Couldn't you just email him?

eta: or don't you do that sort of thing in 'the real world' ?(too straightforward?)

 

[Wildcat]

.
"What was the rationale of the others involved in this decision for not accepting that 6 days is too short?"

The rationale is probably that they live in the real world, and preposterous 6 day deadlines for complicated applications, which sick/disabled people are unlikely to be able to meet, is what happens in the real world. The MEGA Board lives in the real world so they would know ... apparently we don't live in the real world so we wouldn't know (what goes on there).

'The real world' appears to be becoming a default excuse for defending the indefensible.

.

 

[Dx Revision Watch]

If those involved cannot even get this right, what confidence can any of us have that they can get any of it right?

Suzy

 

[Chrisb]

On seeing the difficulties which have arisen, it is clear why the legal principle "delegatus non potest delegare" arose. Those to whom power is delegated may not further delegate it without specific authority of the principal. I do not suggest that it is binding in this case, only that it is always worth considering when judging how one's actions might seem.

The difficulties in appearing to allow another charity to make decisions on behalf of one's members is clear.

 

[Artstu]

.The rationale is probably that they live in the real world, and preposterous 6 day deadlines for complicated applications, which sick/disabled people are unlikely to be able to meet, is what happens in the real world.
The real world' appears to be becoming a default excuse for defending the indefensible.

I wish their work rate was at the same pace, how long have they been working on Mega, they've not got much to show for how ever long it is. ..

 

[Dx Revision Watch]

won't this already be too late? Couldn't you just email him?

eta: or don't you do that sort of thing in 'the real world' ?(too straighforward?)

I agree slysaint. This needs sorting, now, tomorrow.

Not next week.

 

[MEMum]

Thank you for bringing this to our attention, Dr Shepherd.
Does anyone know of someone who might be able/well enough to apply.
@JaimeS are you able to contact any millions missing people who might be interested?
I'm sure Esther and friends would be delighted if the ME association and Charles left....
Is that really in the best interests of people with ME?

 

[Esperanza]

I was going to make the point that a patient representative isn't likely to have any influence whatsoever, given that the MEA get completely ignored.

Just wondering whether anyone on here, having read the patient advisory group criteria, feels inclined to put their time & energies into applying to be on the group. If we are desperate to make sure that this trial is not done badly, is it better to try to change things from within the 'tent' or from without?

 

[docsimsim]

@charles shepherd
If the MEA is on the panel for selection of the patient advisory group then surely they must have been aware of this announcement and the unfairly short deadline? MEGA went quite last month and then bam we have this bombshell dropped on us on the first of December, with the deadline only days away. Nice work, if all you want is to discourage patient participation and impose a pre-picked group on us