New MEGA study website (30 November 2016)

[docsimsim]

The MEA aren't really in the 'tent' are they? Let's face it...

Precisely, it's Afme who are vetting the applicant. I'm almost sure that Charles Shepherd whom I believe above and over all others involved in CMRC and MEGA will have no influence/say in the process. I feel so sorry for us patients as this is exactly what happened with PACE only this is worse

 

[jodie100]

I think you may be mistaken about Afme's involvement or there are crossed wires some place. This is what the MEGA site says on the Get Involved page:
"Applications will be considered by a panel consisting of representatives from the ME Association and ME Research UK and a representative from the MEGA team, Prof Paul Little."

 

[docsimsim]

I think you may be mistaken or there are crossed wires some place. This is what the MEGA site says on the Get Involved" page.
"Applications will be considered by a panel consisting of representatives from the ME Association and ME Research UK and a representative from the MEGA team, Prof Paul Little."

Jodie, no i was right. I went to fill in the application form and it said at the top 'fill and post to Afme. Sorry I was hoping it wouldn't be but sadly it is

 

[docsimsim]

I find it a little strange that the AYME site has no mention whatsoever on it of MEGA. I thought they might be promoting it.

It's coz the advisory group for the children's arm of MEGA is already in place. It's the same one they used for FITNET (PACE junior)!!!

 

[jodie100]

Yes, I saw that the application forms were to be returned to Afme, but I assume that they will not be involved in assessing the applicants based on what the MEGA website says, and that they are just a collection point for the forms. That's how I understood it but I am not sure.

 

[docsimsim]

Yes, I saw that the application forms were to be returned to Afme, but I assume that they will not be involved in assessing the applicants based on what the MEGA website says, and that they are just a collection point for the forms. That's how I understood it but I am not sure.

You kidding? When I rang Afme (for the first time in my life) earlier today, their PR agent knew me by name!!! She had blocked me from their FB page back in 2010 when I joined FB! They have a black list of those of us who ask too many questions. You'd think they'd have better things to do with their time than to keep surveillance on bedbound patients! It's surreal

 

[Esther12]

Ok so the application form for patient advisory group goes through Afme! So the person I talked to at Afme office today was blatantly lying to me when she said 'Afme are not in any way involved in this process'.
Ok so Afme are doing the vetting and MEA and Charles shepherd are just there to rubber stamp those Afme has chosen for them to 'select' from!!!
The level of subterfuge is mind boggling

I'm not sure that right. It could just be AfME are doing that admin, and passing all applications on to MEA and co for 'vetting'?

 

[Robert 1973]

The site starts with a cringe-making reference to elephants in bed. MEGA is beginning to seem increasingly like a white elephant.

MEGA is not 'the first of its kind' - because it does not yet exist. We are not even told what it is going to study.

And no mention of the elephant in the room. In all the online discussion I have read here, on the MEGA petition website, the OMEGA website and on social media, one thing that everybody seems to be saying is that patients have no confidence in Professor Crawley. It is not personal, it is about our perception of her professional competence and her apparent lack of understanding of ME/CFS. And yet, MEGA do not even acknowledge this concern, let alone try to justify her continued involvement. There is no mention in her bio that she is behind SMILE, FITNET and MAGENTA, or that she is an enthusiastic supporter of PACE, which she recently described as a "GREAT, great trial." And there is no mention that she is the second highest recipient of UK state funding for ME/CFS research in history – more than all the money the UK government has ever given to biomedical ME/CFS research.

Another point that many people seem to agree on is that priority for research must be given to the most severely affected patients, and that patients who have been unwell for a long time and do not attend NHS clinics (because they are useless) must be included. Again these issues have not been addressed, as new site repeats the assertion that recruitment will come from NHS clinics because that's the cheapest way to get loads of crap data.

I was reading the excellent PR report on George Dave Smith's talk at the CMRC conference (https://t.co/urMPnSWOAI), which also led me to read Margret Williams's report of his scepticism towards the BPS model at a 2002 conference (https://t.co/4Tt5vbzJ33). Having read his reported comments I find it astonishing that he is willing to work with people who appear to adopt such an unscientific approach towards research. He does not appear to be somebody who is afraid to speak his mind. It would be very interesting to hear his views on PACE and FITNET.

In the meantime, the real elephant in the MEGA room has just been elected as the next president of the Royal Society of Medicine. It seems there is no shortage of doctors willing to shovel his dung.

 

[Robert 1973]

That sounds like an invitation to join the advisory group, although maybe it is just an invitation to apply to join.

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?

 

[jodie100]

In a post from Dr. Charles Shepherd on Page 1 of this thread it says "(please note that AfME are administering the applications but are not involved in the selection process)". The selection process seems to be by the panel mentioned above by scoring applicants against the criteria they have specified.

 

[A.B.]

What's the worst that could happen?

The worst that could happen is that MEGA goes ahead with all its problems because people such as Charles Shepherd and Jonathan Edwards make it easier for Crawley to create the impression that critical debate and patient representation are part of this project. MEGA needs to only convince the Wellcome Trust, not us. Just like their "research" papers only need to create the superficial appearance of there being an understanding of the condition.

Joining MEGA would make sense if there were signs of patients being taken seriously and criticism being acted upon. So far all I see are promises and actions that contradict these promises. MEGA seems to have reacted to criticism by entrenching itself more (Holgate defended Crawley, Crawley defended PACE, they gave evasive answers and some issues were not spoken about alltogether, and they just moved to a website where the public can no longer openly comment on this project).

 

[Robert 1973]

The worst that could happen is that MEGA goes ahead with all its problems because people such as Charles Shepherd and Jonathan Edwards make it easier for Crawley to create the impression that critical debate and patient representation are part of this project. MEGA needs to only convince the Wellcome Trust, not us. Just like their "research" papers only need to create the superficial appearance of there being an understanding of the condition.

Tha grant application has not yet been made. If @charles shepherd and @Jonathan Edwards were to join and then resign if they did not agree with the protocol, I believe that would have a more positive impact than not joining in the first place.

 

[Esther12]

Do you really thinks that's the case? I doubt it. It's all there for them to see and from what they seemed to know about me (including my name), I'm 100% sure they keep tabs on anyone who's questioned their actions the past few years. I'm defo on a black list as she seemed to know me, it was my first time of ever phoning them!!

I can't be certain, but that's what they've said, and I've not seen any evidence that it's not the case. I don't trust AfME, but it's worth trying to avoid complaining about AfME doing the vetting when the only public statements on this we have from MEGA claim that they are not.

 

[Binkie4]

MEGA is supposed to be a new project, a collaborative project of a size not seen before and including researchers from very different backgrounds from the BPS school, although we know that there are problems with that.e.g. Links between Prof Holgate and Simon Wessely.

But the patient representative committee for children is just being transported across from EC's FITNET study. That is illogical Imo. If it is a new study, it should be started from scratch in all respects, not unbalanced by importing parts of the BPS focussed work. There is no level playing field, not even a pretence of one. How do they think this will land on patients? Added to 6 days to submit an application to take part in the other patient advisory group, it seems a real mess.

 

[Barry53]

I can't be certain, but that's what they've said, and I've not seen any evidence that it's not the case. I don't trust AfME, but it's worth trying to avoid complaining about AfME doing the vetting when the only public statements on this we have from MEGA claim that they are not.

I agree, else we just lay ourselves wide open to accusations of paranoia. That does not mean of course that we should not still be mindful of the possibility there is subterfuge in play - give some (but only some) of the players.

 

[Skippa]

Another day, another pile of crap.

 

[Dx Revision Watch]

Professor Stephen Holgate has accepterd an invitation from the Countess of Mar to come and speak about the MEGA study to the Forward ME Group of ME/CFS charities at the House of Lords on Wednesday 7th December

There will also be an opportunity for charity representatives to ask questions during this meeting

Forward ME Group:
http://www.forward-me.org.uk

APPG on ME meetings have not been held as public meetings for some years. The Countess of Mar's Forward ME Group meetings are similarly not open to the public.

Forward ME meetings are held in a committee room in the House of Lords.

Some years ago, APPG on ME meetings were recorded and a transcript prepared and Minutes published. This arrangement was later replaced with a summary of the meeting.

If the room in which the ForwardME Group meeting on Wednesday 7th December to which Prof Holgate has been invited to speak is equipped with audio recording facilities, can consideration be given to recording that part of the meeting and posting a podcast?

This would also provide an opportunity for prospective applicants for the Patient Advisory Panel to review Prof Holgate's discussions with charity reps before preparing and submitting their applications (assuming that MEGA has accepted that setting a 6 day time frame for submissions for a position on a stakeholder panel was a gross error of judgement and has agreed and announced an extension).

 

[Dx Revision Watch]

As sent today (1/11/16) via the Question form on the MEGA site:

http://www.megaresearch.me.uk/contact-us/

The deadline for application for consideration for a position on the Patient Advisory Panel is just 6 days.

This would be inappropriately short for any stakeholder patient group.

It is not at all acceptable for a disability patient group and it does not reflect expectations of provision of disability accommodations/inclusivity by NGOs, registered patient organisations etc.

1 Whose decision was it to place a time limit of just 6 days to prepare and submit an application?

2 What was the rationale for imposing such a tight deadline on a disability group stakeholder participation recruitment exercise?

3 Will urgent consideration be given to extending the deadline by at least an additional three weeks and announcing this before the weekend?

I shall be pleased to receive a timely response to these questions.

Suzy Chapman
[email address redacted]


​

Edited to add: Since this is a very time sensitive matter, I have emailed these questions and a request for an extension directly to Prof Holgate. I have CCd in Sonya Chawdhury; Dr Charles Shepherd and MEA's Neil Riley.

 

[Dx Revision Watch]

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>"

 

[JoanDublin]

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>"

Well now...isn't that just fine and dandy