New MEGA study website (30 November 2016)

[JoanDublin]

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The Patient Representatives to the NICE Guidelines (published 2007) were named.

The Patient Representatives to the Chief Medical Officer's Working Group on ME ( CMO WG 1998-2002) were named.

It’s just not conceivable that ME patients should be represented by anonymous/unaccountable Patient Reps for the MEGA study.


@charles shepherd – you have, in these threads, talked about ‘the MEGA Planning Group’ as though such a thing actually existed.

Now it turns out there is no ‘Planning Group’, but the list of names on the MEGA list are all supposed to be ‘the Planning Group’….. when it has been made clear that some of the ‘MEGA/Planning Group’ haven’t the foggiest idea of what the decision makers are doing or saying….. and its clear that somebody or other is making decisions and statements on behalf of MEGA … but its not made clear exactly who is in the driving seat …. And telling us to post our concerns onto the MEGA site has not resulted in answers to our concerns….
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Just about sums it up. Its a farce from start to finish. Transparency, my eye

 

[Esperanza]

As to the question of whether the identity of members of the PAG should be placed in the public domain, my understanding is that for fairly obvious reasons (i.e. some people with ME/CFS, as frequently occurs on PR discussions, do not want the fact that they have ME/CFS to become public knowledge) this is is a sensitive issue which the group needs to discuss and reach a decision on.

I am utterly baffled by this question of anonymity for PAG applicants.

How on earth can it be remotely sensible for applicants to be chosen without those on the selection panel knowing who they are....at some point, at any rate?

If AfME (who, after all, are one of the least trusted ME charities by informed patients) are collating applicants & anonymising them before passing them on to the selection group, how can we ensure they that will pass on ALL applicants if their names do not fit the AFME agendas....?

As no referees have been requested for applicants who is to say that what anonymised applicants write about themselves is TRUE ( after all without a name it cannot be checked...)?

Given this situation the determined applicant could presumably make multiple applications from different email addresses, giving a very different ME CV each time.

How is any of this fair & helpful?

 

[user9876]

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The Patient Representatives to the NICE Guidelines (published 2007) were named.

The Patient Representatives to the Chief Medical Officer's Working Group on ME ( CMO WG 1998-2002) were named.

It’s just not conceivable that ME patients should be represented by anonymous/unaccountable Patient Reps for the MEGA study.

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Patients who are on the PAG are not representatives they are just patients who give advice. They are not appointed by charities or elected. They will be a set of people selected by a MEGA committee hopefully because they can help ensure that MEGA does something worthwhile.

I know a lot of patents with ME get concerned about being seen to do stuff in case it affects their benefits. So I can see why some may want to be anonymous. But this could be done with an online presence to help communicate issues.

 

[Wildcat]

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The patients who were on the NICE Guidelines Group and the CMO's Working Group were simply referred to as 'patient reps' ..... we know that they were not elected, and goodness knows how they got to be in the position of supposedly representing us ....

For example, two of the 'Patient Reps' to the Chief Medical Officers Working Group (1998 - 2002) were Officials from the Kent and Sussex CFS Society - Colin Barton and Kate Robinson..... that powerful society has historically supported the psychosocial agenda, and the 'Patient Reps' had a very 'Pally' relationship with the Vice Chair of the CMO's WG (Professor Anthony Pinching), who was also Medical advisor to the Kent and Sussex CFS Society ....... it was all very incestuous .....


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[Anne]

Apart from the very problematic issues regarding the central position of Esther Crawley and the use of NHS clinics for patient selection, there are two other major issues with MEGA which I can't get my head around:

1. The budget and the actual scope of the study. We have heard the number £5 million, for 10,000 or 12,000 patients. Now, as @Rose49 says:

Ron Davis and his team doing the Severely Ill Patients Big Data Study of 20 patients are spending about $100,000 per patient on the extensive testing they are doing. The MEGA study has a pretty extensive list of things they are planning to do, and they plan to test 10,000 patients. If they did all the tests that OMF team is doing it would cost them 1 billion dollars (and more for controls). It seems unlikely that they can get that much money. So how much testing are they really going to do? It's all so vague it's hard to tell what they are doing.

What does this mean? With the £5 million budget, will we in fact mostly get a lot of questionnaires done (which will then be processed by Esther Crawley)?

2. We have heard that a very large number of patients is needed for the genetics part of the study. I understand large numbers are needed with these techniques to get a strong enough signal to tell you something about a certain disease. But, I dont see how enrolling 10,000 patients with various fatiguing illlnesses (which will be the case when the NHS clinics are used) will result in a strong signal for actual ME. Wouldn't you need 10,000 patients with actual, CCC-defined ME to get a strong signal which tells you something about ME?

@charles shepherd @Rose49 @Ben Howell @znahle @Jonathan Edwards

 

[Marky90]

When will the MEGA group actually outline the specific study with protocols etc.? They should be spending time on that, not trying to convince us of how great it is.

 

[Barry53]

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

That sounds eminently sensible to me, given how likely it is that identity might otherwise play an unwanted part in the process.

 

[Barry53]

We have heard that a very large number of patients is needed for the genetics part of the study. I understand large numbers are needed with these techniques to get a strong enough signal to tell you something about a certain disease. But, I dont see how enrolling 10,000 patients with various fatiguing illlnesses (which will be the case when the NHS clinics are used) will result in a strong signal for actual ME. Wouldn't you need 10,000 patients with actual, CCC-defined ME to get a strong signal which tells you something about ME?

Quite. You can point a telescope at the sky gathering many samples over time, to average out and see through the noise to the faint signals otherwise hidden from view, but you will never get to see any signals whatsoever from parts of the sky you are not looking at.

 

[Jo Best]

That sounds eminently sensible to me, given how likely it is that identity might otherwise play an unwanted part in the process.

Do you mean you don't trust the selection panel Barry?

 

[Barry53]

Do you mean you don't trust the selection panel Barry?

I am just wary by nature. To be honest I am finding this increasingly confusing, and not sure what if anything about MEGA can be trusted. Just feels like a mega-cock-up.

 

[Jan]

@charles shepherd said

'There is quite a lot of misunderstanding about what is termed the NICE diagnostic criteria for ME/CFS

And I don't think this NICE criteria has any significant standing outside the UK

As I'm sure you are aware, the MEA has consistently been very critical of the 2007 NICE guideline and we do not regard it as being fit for purpose
And we do not believe that the NICE diagnostic criteria is a satisfactory way of diagnosing ME/CFS'


We, (the MEA) do not believe that the NICE diagnostic criteria is a satisfactory way of diagnosing ME/CFS and it's not fit for purpose?



Yet MEGA are going to use NICE guidelines from the NICE protocol run clinics to recruit the patients. Crawley uses NICE (sometimes even more vague symptoms) to diagnose.

So therefore, I presume, the criteria for recruiting patients for MEGA is 'not fit for purpose' then?

 

[lilpink]

it's just dishing out the label to anyone with fatigue plus headaches or fatigue plus unrefreshing sleep issues or fatigue plus aches

Indeed or dishing out same label to anyone (though disproportionately women) and *mis*-diagnosing with a *missed*-diagnosis of something which is not ME but which is equally life affecting but which does at least have treatment options available (unlike ME in the UK). I'll give a few examples within my own family and friends: i) Lupus misdiagnosis as 'CFS', ii) Gynae problems requiring hysterectomy misdiagnosed as 'CFS' iii) Chiari one malformation and other diffuse neurological issues misdiagnosed and purposefully ill-diagnosed as 'CFS' / functional neurological syndrome iv) Parkinson's misdiagnosed as 'CFS' and contrarily ME misdiagnosed as 'catastrophising' leading to grave iatrogenic harm. This is what the NICE Guideline has to offer.

Criteria are the cornerstone to care and to research until such time as we have a biomedical test (or at least one which is easier to complete than a VO2 Max..which after all IS pretty much a test to determine authentic ME from anything else.)

Oh btw: those illustrations above? All women. Quelle surprise!

 

[Dx Revision Watch]

I am utterly baffled by this question of anonymity for PAG applicants.

How on earth can it be remotely sensible for applicants to be chosen without those on the selection panel knowing who they are....at some point, at any rate?

If AfME (who, after all, are one of the least trusted ME charities by informed patients) are collating applicants & anonymising them before passing them on to the selection group, how can we ensure they that will pass on ALL applicants if their names do not fit the AFME agendas....?

As no referees have been requested for applicants who is to say that what anonymised applicants write about themselves is TRUE ( after all without a name it cannot be checked...)?

Given this situation the determined applicant could presumably make multiple applications from different email addresses, giving a very different ME CV each time.

How is any of this fair & helpful?

For future reference, I have converted the Application Form to PDF and attached a copy to this post.

The form requires provision of a street address and phone numbers in addition to an email address, which should reduce the potential for multiple applications.

It requires these sections to be completed:

"Please can you tell us why you are interested in joining the MEGA Patient Advisory Group."​

and

"Please provide a summary of the skills, knowledge, experience and qualities that you would bring to the role. We will be considering applications based on how individuals meet the stated person specification criteria so please consider this fully and include this in your summary."​

These sections which will be used for "scoring" the applicant against the person spec might be rather difficult to anonymize, depending on how much personal information the applicant has worked into their text.

The application page says:

Advisory Group members should meet the following criteria/person specification:

hold experience from one or more of the following (preferred but not essential):

• research
• health care
• science communication
• sciences
• statistics
• education
• ethics
• charitable funding
• work in voluntary committees.

They may be an office holder or volunteer for a national ME patient organization or for a local ME group.
They may run a forum or maintain a website.
They may set out their experience of serving on committees or have been a patient rep on an ME, CFS consultation exercise or sit on a local NHS patient panel.
They may be a researcher, clinician or allied health professional and list publications or posts held.

Information about these activities is likely to be included in support of their application. I don't see how the sections on which scoring for suitability for the task are to be based can be readily redacted of personal identifiers.

​

 

[Dx Revision Watch]

I wouldn't necessarily expect a list of those who have been offered and accepted a seat on the PAG to be made publicly available any time soon.

The deadline for applications is tomorrow morning. Successful applicants are scheduled to be informed this week, by Wednesday 14 December.

They aren't scheduled to receive key papers until week beginning 19 December.

We are now given to understand that at some point, the entire group is going to need to discuss whether or not PAG members should be given the right to remain anonymous.

But the first teleconference or e-group meeting isn't scheduled until 29 or 30 December.

So until a decision has been made about PAG membership anonymity, the PAG membership list may not be disclosed until after the New Year - that's if the "Team" intend for it to be disclosed, at all.

And if they don't, if I had accepted a seat on the PAG, I would step down immediately, and make it publicly known why I was stepping down.

I would not sit on any advisory group where its membership was undisclosed and where the potential for post assembly decisions about transparency had not been noted in the person spec or draft ToR.

As I've said before, if the PAG agreed that the option should be available for individuals not to have their names disclosed, then in theory, all members could opt for that - and that is not in the draft ToR either.

 

[Jo Best]

MEGA appears to have more holes in it than a string vest, which could trap patients to keep the BPS crew toasty throughout the next leg of their journey into the foreseeable future.

 

[Esther12]

I can see the advantages of (semi-)anoymising applications to try to avoid the selection panel's prior knowledge/prejudices about an individual affect things.

It just seems like, even ignoring the problems with distrust caused by Crawley's history of quackery, they've not given themselves enough time to engage with patients in any worthwhile way, so even when they're trying to do things reasonably it's often going to end up looking bad.

 

[charles shepherd]

Some really good news to finish the day on the PAG applications….

As I'm going to be working away on Tuesday and Wednesday this week I've been carefully going through all the PAG applications that have been sent in so far - 32 in all

Am I'm very pleased to be able to report that the quality of the applications, along with the background information on the applicants (several of whom have severe ME/CFS) that has been provided, has been excellent and quite outstanding in a number of cases

In addition, I have not had any problems whatsoever with the selection process and the anonymisation of the applicant details has not created any difficulties in assessing the applications

I will deal with any of the remaining applications that come in before 9am on Tuesday (13th) tomorrow morning

I'm afraid I only have a very limited amount of time to spend on being interrogated on PR this evening but I will try to look in later to answer any questions

I won't be available on Tuesday or Wednesday as I have various commitments in London, including a meeting of the ME Biobank Steering Group - where (amongst other topics) we will be discussing the MEGA research study

CS

 

[eafw]

Am I'm very pleased to be able to report that the quality of the applications, along with the background information on the applicants (several of whom have severe ME/CFS) that has been provided, has been excellent and quite outstanding in a number of cases

I am not at all suprised that you have had top quality applicants. Many on these boards alone (as well as the wider ME community) have backgrounds and experience that meet the criteria for selection to the group - which would make them perfectly capable of engaging productively with academics, clinical researchers and committees. I would guess it's a large part of the frustration for many of us, we recognise a bureaucratic s*t-show when we see it and know we could could do a much better job given half a chance.

 

[charles shepherd]

Some really good news to finish the day on the PAG applications….

As I'm going to be working away on Tuesday and Wednesday this week I've been carefully going through all the PAG applications that have been sent in so far - 32 in all

Am I'm very pleased to be able to report that the quality of the applications, along with the background information on the applicants (several of whom have severe ME/CFS) that has been provided, has been excellent and quite outstanding in a number of cases

In addition, I have not had any problems whatsoever with the selection process and the anonymisation of the applicant details has not created any difficulties in assessing the applications

I will deal with any of the remaining applications that come in before 9am on Tuesday (13th) tomorrow morning

I'm afraid I only have a very limited amount of time to spend on being interrogated on PR this evening but I will try to look in later to answer any questions

I won't be available on Tuesday or Wednesday as I have various commitments in London, including a meeting of the ME Biobank Steering Group - where (amongst other topics) we will be discussing the MEGA research study

CS

As of 9am today (Tuesday 13th) we have 45 applications to join the MEGA study PAG - and the same high standard of written information has continued, along with a good proportion of applications coming from people with severe ME/CFS

As soon as I've finished my assessments (which has taken much longer than expected!) I'm off to London for meetings, including a Biobank Steering Group meeting, and won't be doing any social media till Thursday

Again, everything is running smoothly from my point of view

And thank you to everyone on the PR forum who has applied to join the PAG

 

[Dx Revision Watch]

As of 9am today (Tuesday 13th) we have 45 applications to join the MEGA study PAG - and the same high standard of written information has continued, along with a good proportion of applications coming from people with severe ME/CFS

As soon as I've finished my assessments (which has taken much longer than expected!) I'm off to London for meetings, including a Biobank Steering Group meeting, and won't be doing any social media till Thursday

Again, everything is running smoothly from my point of view

And thank you to everyone on the PR forum who has applied to join the PAG

To what extent have Prof Paul Little and ME Research UK been involved in assessing the applications and who from MERUK is undertaking assessments?