New MEGA study website (30 November 2016)

[TiredSam]

I think if you decide to be representative you have to be willing to forsake anonymity.

I would have assumed that too, never occured to me that anyone would apply to be on the PAG and hope to remain anonymous. If I applied I wouldn't expect to be able to turn up in my superman outfit and say "never mind who I am, just call me TiredSam". Can't see EC approving an application with those conditions attached.

Then again it may suit her purposes - the PACE authors played the "concerned about protecting patient anonymity" card to defend FOI requests and hide what they had been up to, so it does have some BPS pedigree. Watch this space. If EC expresses concern about protecting PAG anonymity, we'll know why.

Otherwise it's just tokenism.

Indeed.

By the way, speaking of EC, haven't the real scientists on MEGA slammed the door in her face yet? Or addressed the concerns about her role (mainly the fact that she has one) at all? Did I miss it?

IMO, the project is still in gestation stage

I read that as "the project still in gas station stage", which for some reason brought to mind an image of ol' Clem in his dungarees with his hands on the pump. Brainfog.

 

[slysaint]

Can't see EC approving an application with those conditions attached

Unless they're from Bristol

 

[Dx Revision Watch]

I would have assumed that too, never occured to me that anyone would apply to be on the PAG and hope to remain anonymous. If I applied I wouldn't expect to be able to turn up in my superman outfit and say "never mind who I am, just call me TiredSam". Can't see EC approving an application with those conditions attached.

Then again it may suit her purposes - the PACE authors played the "concerned about protecting patient anonymity" card to defend FOI requests and hide what they had been up to, so it does have some BPS pedigree. Watch this space. If EC expresses concern about protecting PAG anonymity, we'll know why.

Indeed.

I can envisage this being put forward to justify anonymity for PAG members or selected of the PAG members.

 

[MEMum]

It's the last day to apply to be a patient representative.
I am hoping that some patients/carers who do not agree with PACE etc will apply.
Unfortunately I do not currently have the stamina or brain capacity, and would probably be rejected anyway as I signed the OMEGA petition
.
Given the huge volume of criticism on this thread I think any representative would be wary of identifying themselves.
My fear is that with such antagonism to those involved in CMRC, we will only be left with a PAG comprising those who are in agreement with the BPS model, and/or not informed of the flaws in PACE and the current exciting biomedical research.

The amount of criticism, verging on abuse, that Dr Shepherd gets on this thread, could be a huge deterrent to any PAG member liaising with this patient forum.

I totally agree that time is too short to provide a meaningful outline protocol, that the PwME included need to have ME! that money should be spent on expanding the current UK Biobank etc.....
BUT if we all refuse to participate they will go ahead anyway.

I agree with Dr Shepherd, people who know about this disease need to be in on the conversation.

I still sincerely hope that someone from here will get on to the panel and that other members can supply succint comments with references, to help them put forward concise, relevant reasons regarding the development, or not of this Biobank.

 

[Dx Revision Watch]

Discussion of FOIs and transparency has reminded me that in late 2009, I had to put in an FOI to Corporate Information and Policy, Medical Research Council for a copy of the participant list for the

MRC CFS/ME Research Workshop, 19th and 20th November 2009

which had not been publicly disclosed.

Archived, here, on my old MEagenda site:

https://meagenda.wordpress.com/2009/11/23/participant-list-mrc-cfsme-research-workshop/

PDF Participant List

 

[Dx Revision Watch]

It's the last day to apply to be a patient representative.
I am hoping that some patients/carers who do not agree with PACE etc will apply.
Unfortunately I do not currently have the stamina or brain capacity, and would probably be rejected anyway as I signed the OMEGA petition
.
Given the huge volume of criticism on this thread I think any representative would be wary of identifying themselves.
My fear is that with such antagonism to those involved in CMRC, we will only be left with a PAG comprising those who are in agreement with the BPS model, and/or not informed of the flaws in PACE and the current exciting biomedical research.

The amount of criticism, verging on abuse, that Dr Shepherd gets on this thread, could be a huge deterrent to any PAG member liaising with this patient forum.

I totally agree that time is too short to provide a meaningful outline protocol, that the PwME included need to have ME! that money should be spent on expanding the current UK Biobank etc.....
BUT if we all refuse to participate they will go ahead anyway.

I agree with Dr Shepherd, people who know about this disease need to be in on the conversation.

I still sincerely hope that someone from here will get on to the panel and that other members can supply succint comments with references, to help them put forward concise, relevant reasons regarding the development, or not of this Biobank.

If you are going to start making accusations of "verging on abuse", then I suggest you provide examples.

There are considerable, legitimate concerns about this project.

 

[Dx Revision Watch]

@MEMum

I don't understand your position. You've signed a Petition for a vote of no confidence in the project, but you are concerned about the amount of criticism of the project being expressed.

 

[Dx Revision Watch]

"The amount of criticism, verging on abuse, that Dr Shepherd gets on this thread, could be a huge deterrent to any PAG member liaising with this patient forum."

On what basis do you think PAG members would be "liaising with this patient forum"?

PAG members will be signing a confidentiality clause about the business of the PAG group.

 

[trishrhymes]

"The amount of criticism, verging on abuse, that Dr Shepherd gets on this thread, could be a huge deterrent to any PAG member liaising with this patient forum."

On what basis do you think PAG members would be "liaising with this patient forum"?

PAG members will be signing a confidentiality clause about the business of the PAG group.

There is nothing in the terms of reference of the PAG that I recall that says patients will be signing a confidentiality clause. Obviously members of the group will have to respect the privacy of others on the group by not naming who said what in discussion, but...??? Can anyone clarify this?

Will PAG group meetings be minuted and the minutes published? If the group is to advise the professionals it will need to make written recommendations. Who will have a right to see these? I haven't ever been on a PAG, so I'm unclear how they function.

Off to look up PAG on the MEGA site...

 

[charles shepherd]

I think when the GPs you describe as having no specific interest or knowledge in ME. are making the CFS/Me diagnosis "pragmatically" it isn't by making a judgement combined With info from various more respected Stricter criteria you describe, it's just dishing out the label to anyone with fatigue plus headaches or fatigue plus unrefreshing sleep issues or fatigue plus aches. I'm totally against a casual pragmatic approach with our label because it ends up diluting the illness to a rag bag, catch all less severe waste basket.
I think uk charities not endorsing stricter criteria, especially AFME who refuse to comment on such things and insist all CFS is ME is partly why things like CCC never got established here, along of course with resistance from people like White and Crawley.

The MEA has endorsed the Canadian guidelines - even though we do have reservations about some of the information/guidance being provided in relation to clinical practice here in the UK - and we distribute them as part of our literature list along with the MEA purple book

In addition, all patients (including those with severe ME/CFS who are seen at home) that are being recruited for the ME Biobank have a very careful clinical assessment to see if they meet Canadian diagnostic criteria

Whilst the varying views of the ME/CFS charity sector on diagnostic criteria are noted (in varying degrees) by health professionals working in this area of medicine, their views on diagnostic criteria do not carry much weight when it comes to the vast majority of health professionals who have no specific interest or knowledge of ME/CFS

 

[Wildcat]

.
@MEMum wrote: .'The amount of criticism, verging on abuse, that Dr Shepherd gets on this thread, could be a huge deterrent to any PAG member liaising with this patient forum.'


Provide examples of what you class as 'abuse' on this thread. Actual examples. And the names of the so-called 'abusers'.
Otherwise we are all under a cloud of being classed as 'abusers'..... which echoes the demonisation ('extremist/militant/dangerous') campaign, carried out by the Science Media Centre and the national press ... which was debunked at the Tribunal.





.

 

[Dx Revision Watch]

There is nothing in the terms of reference of the PAG that I can see that says patients will be signing a confidentiality clause. Obviously members of the group will have to respect the privacy of others on the group by not naming who said what in discussion, but...??? Can anyone clarify this?

Will PAG group meetings be minuted and the minutes published? If the group is to advise the professionals it will need to make written recommendations. Who will have a right to see these? I haven't ever been on a PAG, so I'm unclear how they function.

They will be signing up to:

"demonstrate tact and discretion and uphold confidentiality"

 

[charles shepherd]

Dr Shepherd, I was not referring to Terms of Reference for the PAG or when the draft PAG ToR will be finalized.

What I wrote in response to your response was:

"So, no Steering Group.

And no ToR for those with oversight for the project."​

The issue was the absence of a Steering Group for the MEGA project and Steering Group ToR - an issue you appear to have sidestepped.


In relation to the PAG:

I consider there is a difference between electing to use an anonymous username on a public forum and putting oneself forward for a position on a Patient Advisory Group where one is tasked with representing the interests of others.

If a decision were reached after the group has been assembled that members of the PAG (who may be a mixture of patients, carers and others classes of stakeholder) can choose to remain anonymous, potentially, we could have a situation where none of them choose to be identified.

Which would result in no transparency for the make up of the PAG group.

Perhaps the issue of disclosure should have been discussed and agreed upon before applications were invited?


It also begs the question: if the PAG is expected to agree on and sign up to a Terms of Reference, why is there no Terms of Reference for the project overseers?

Why the absence of a Steering Group that is accountable for the project?

Is the absence of a Steering Group/Committee not a matter of concern to the org reps?

It should be.

I said that my understanding at present is that there is not going to be a Steering Group

This is a decision for the MEGA Team/planning group and I am not a member of this group

If you really want to pursue the issue of a MEGA Steering Group I suggest you send in a question on this to the MEGA Team using the contact details on the MEGA website

 

[Dx Revision Watch]

I said that my understanding at present is that there is not going to be a Steering Group

This is a decision for the MEGA Team/planning group and I am not a member of this group

If you really want to pursue the issue of a MEGA Steering Group I suggest you send in a question on this to the MEGA Team using the contact details on the MEGA website

I've already done that, as I said in my post.

There has been no response as yet.

How do you feel about the absence of a Steering Group and the potential impact of that?

Currently, all there is a "team" with no clear lines of accountability and no ToR.

 

[charles shepherd]

It's the last day to apply to be a patient representative.
I am hoping that some patients/carers who do not agree with PACE etc will apply.
Unfortunately I do not currently have the stamina or brain capacity, and would probably be rejected anyway as I signed the OMEGA petition
.
Given the huge volume of criticism on this thread I think any representative would be wary of identifying themselves.
My fear is that with such antagonism to those involved in CMRC, we will only be left with a PAG comprising those who are in agreement with the BPS model, and/or not informed of the flaws in PACE and the current exciting biomedical research.

The amount of criticism, verging on abuse, that Dr Shepherd gets on this thread, could be a huge deterrent to any PAG member liaising with this patient forum.

I totally agree that time is too short to provide a meaningful outline protocol, that the PwME included need to have ME! that money should be spent on expanding the current UK Biobank etc.....
BUT if we all refuse to participate they will go ahead anyway.

I agree with Dr Shepherd, people who know about this disease need to be in on the conversation.

I still sincerely hope that someone from here will get on to the panel and that other members can supply succint comments with references, to help them put forward concise, relevant reasons regarding the development, or not of this Biobank.

On a point of factual accuracy:

I have not received any guidance or instruction to say that anyone who signed the OMEGA petition cannot be a member of the PAG and I will be assessing the applications this coming week

In addition, I will not know the identity of the individual applicants - because these are being anonymised before they are passed to members of the assessment panel

 

[Dx Revision Watch]

On a point of factual accuracy:

I have not received any guidance or instruction to say that anyone who signed the OMEGA petition cannot be a member of the PAG and I will be assessing the applications this coming week

In addition, I will not know the identity of the individual applicants - because these are being anonymised before they are passed to members of the assessment panel

What is the rationale for them being anonymized for the assessment and selection process?

Whose decision was that?

And is that for the "scoring" process or will selection based on "scores" also be undertaken on anonymized applications?

 

[charles shepherd]

I've already done that, as I said in my post.

There has been no response as yet.

How do you feel about the absence of a Steering Group and the potential impact of that?

Currently, all there is a "team" with no clear lines of accountability and no ToR.

As there is going to be a Patient Advisory Group - comprising of patients, carers, other interested people, who could include clinicians and researchers - it all depends on what you then want a MEGA Steering Group to do and what sort of people you want to include as members of the group

The ME Biobank Steering Group consists of staff from the Biobank, representatives from the ME/CFS charities, patient and carer representatives, and clinicians/researchers (including Jonathan Edwards) who may not be directly involved with the Biobank.

 

[Dx Revision Watch]

I would have thought that a project of this nature and size demanded both a Steering Group and a Patient Advisory Group.

 

[charles shepherd]

What is the rationale for them being anonymized for the assessment and selection process?

Whose decision was that?

And is that for the "scoring" process or will selection based on scoring also be undertaken on anonymized applications?

The applications for membership of the MEGA PAG are being anonymised so we do not know the names of people who are applying

The choice of people for the PAG is supposed to be based on the information that has been provided on the application form - not the person's identity

So I think it is fair enough to decide that the name of the person should not be available to the selectors

I accept that there is also a case for including the names - but this is the option we have chosen

If you feel very strongly about this I suggest you complain to the MEGA Team using the contact details on the MEGA website

 

[charles shepherd]

I would have thought that a project of this nature and size demanded both a Steering Group and a Patient Advisory Group.

As I have already said, I have not heard anything about setting up a MEGA Steering Group and there isn't any indication that one will be formed on the MEGA website

But it may be that the MEGA Team are planning to set up a Steering Group in due course - if/when funding has been approved and the study is going to proceed

There is clearly a very limited role for a Steering Group at this stage - which may be why a decision has not been made by the MEGA Team

I'm sorry but this is as far as I can go in answering questions about a Steering Group