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Are you on the MEGA PAG?

Cinders66

Cinders66

Senior Member
Messages
494
Resignations suggest a fixed path were supposed to bend to or maybe the pro MEGA just outweighed the modify MEGA so there was little point. I read many of the PAGs profiles and many seemed unquestionably supportive of it as it stood.
Anyway it's all taking so long this kind of thing is irrelevant to me, i look to Ron Davis who understands the urgency and severity.
 
Snowdrop

Snowdrop

Rebel without a biscuit
Messages
2,933
Valentijn said:
Very unfortunate. He's an intelligent guy, but too deferential to authority.
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And some people really have issues with identifying with the underdog. They want to align with success. RF had a career in London in finance I believe. He probably still wants to be seen as one of the Lads, not a sick individual needing help. And he was treated well by his employer according to his own words.

Being the underdog would signify a drop in status.
 
U

Undisclosed

Senior Member
Messages
10,157
It's not a problem to criticize the stuff Crawley has said and done. It's not a problem t0 criticize what Russell Fleming/Firestormm has said on social media. But attacking somebody just because they are on the PAG for MEGA with comments that are 0f a very personal nature and mere speculation is a problem. Don't give Crawley the satisfaction of writing about patients attacking other patients. Crawley needs to remove herself from MEGA and it's up to her. We have no idea what Russell Fleming is going to do. Preemptive attacks are not pretty.
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Posted on Facebook earlier today:
Voices From The Shadows said:
Three members of the MEGA patient advisory group resigned last Friday 17th March - myself Natalie Boulton, ‘Spoonseeker’ and Jim Wilson. ‘Spoonseeker’ writes a well informed and thoughtful blog https://spoonseeker.com, I made the collaborative book ‘Lost Voices from a Hidden Illness’ and co-produced/directed the film ‘Voices from the Shadows’; an advocate for ME patients like my daughter and her friends. Jim is a former research physicist and computer scientist. He has a wide ranging professional experience in senior business management and of delivering projects in both direct management and board level oversight roles, which involved partnership in working across organisations and cultures. He is also a trustee or chair of several charities. The professional experience he brought to the PAG has been invaluable. Both he and I are carers for daughters ill with ME. Spoonseeker is himself a patient and also a carer for his wife who has ME. A very active member of a ME support group, he has had a long involvement with a wide range of patients and their experiences. We all took our support for, and participation in MEGA, very seriously. We expended an enormous amount of effort and time on it; committed to applying our varied expertise to the project in a constructive way. I think the other two will soon make their reasons for resigning public, in so far as they are permitted to by a confidentiality agreement. Keep an eye on Spoonseeker’s blog for their accounts. I restrict this account to my personal impressions and publicly available material.

I applied to join the MEGA PAG believing that the public specification for the patient advisory group was a serious commitment to ME patients and to PAG members – at least until a more comprehensive Terms of Reference was agreed with the PAG. I also believed that the information given to Forward ME by Prof Holgate, to allay concerns expressed by the Countess of Mar and ME charities about MEGA, could be depended on.

I now find, almost three months since the PAG was formed, that both this public commitment and Prof Holgate’s answers have turned out to be misleading. Furthermore, no terms of reference have been agreed, to enable the PAG to operate effectively, despite this being a priority, and the minutes from the only meeting held while I was a PAG member ( last December) have still not been confirmed or made public.

I am, therefore, concerned that patients and ME charity representatives have been misled. In my view, over the last three months, the PAG has not been permitted to carry out the functions publicly ascribed to it. As an advocate for severely ill ME patients this puts me in a difficult position. Members of the PAG have been working and studying incredibly hard, both individually and collectively, in order to be in the best and most informed position to assist the MEGA team who, as a group, have very little knowledge of ME/CFS. I believe we are all desperate for good quality, relevant research to be done on ME and ME/CFS, so I have found it intensely frustrating to find our efforts to engage thwarted at every step. I have not felt that the PI representing the MEGA researchers has a genuine wish for a meaningful engagement with the PAG, nor for the collaborative relationship many PAG members hoped for and have been working towards. Now, sadly, my impression is that the PAG was hastily appointed at the last minute as a cynical attempt to try to make bioresource bids look more appealing to funders and to reassure patients.

I have not found an honest and open environment for discussion between PAG and PI. At the only official PAG meeting before I resigned, it became clear that critical design issues for the MEGA project had already been decided upon and were non-negotiable: no meaningful discussion of these issues would be permitted. All further research by MEGA researchers, whether a broad ranging Genome Wide Association Study or more in-depth research, will depend on the samples collected for the MEGA biobank, so the selection and identification of patients is crucial, as Prof Holgate and others including Prof Davey Smith have pointed out.

At her recent inaugural lecture, the PI made clear her understanding of ME/CFS in children as being a very common condition, responding very positively to the behavioural management regimes found to be so flawed in adults. She also expressed grateful thanks for the assistance that she has received from Profs. Peter White and George Davey Smith over the last 10 years, with helping her win research funding. Peter White is the psychiatrist who led the PACE Trial, https://goo.gl/MImd1O . George Davey Smith is an excellent researcher, but says he knows nothing about ME/CFS, even after 10 years of being associated with CFS research as Bristol University. As a PAG member I have seen no evidence that the MEGA biobank PI is willing to allow those who have lived with and developed a more realistic understanding of the severe illness known as ME, to engage in meaningful discussion about the selection of patients and to listen to our concerns about the potential danger of particular groups being under-represented in the biobank and even in a GWAS.

ME has a long history of definitions and criteria being used in a very ‘creative’ manner.
I decided a couple of weeks ago that, as an advocate for those with severe and long lasting ME, I could no longer remain a PAG member in a project whose value to ME patients:
1. relies entirely on how a few significant terms - such as PEM - or ME/CFS - will be defined at some future date
2. where crucial decisions, which will impact on future options, were made without any in-depth discussion being permitted
3. where no working relationship or discussion has been allowed between the PAG and MEGA researchers.

Since impending resignations were known about, there seems to have been a frantic attempt to placate criticism from the PAG, but this does not restore my confidence in the overall MEGA biobank project.

There has been a history of legitimate patient concerns being dismissed as harassment and persecution, even when these concerns are raised at terrible cost to patients own health. I hope that researchers, patients, carers and ME charities will recognise the legitimacy of the serious concerns raised by the resigning PAG members, rather than dismissing them and relegating them to the ’persecution of brave researchers by nasty patients’ narrative.
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https://www.facebook.com/VoicesfromtheShadows/posts/1306440276109499

ETA: Just for clarity, I want to make it clear this is not a post by me, just one I saw on Facebook, just in case there is any confusion. :)
 
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A.B.

A.B.

Senior Member
Messages
3,780
Thanks Natalie Boulton.

It is good to have further confirmation that our concerns were justified. MEGA is a potentially very serious threat to patients.

As a large study it will certainly have an impact and shape the views of this illness for many years to come. It is essential to get it right. Unfortunately it is likely that Crawley will introduce nonsensical definitions and descriptions of PEM, ME/CFS, and other important things into the study. If PEM were to be described as some sort of health anxiety (misinterpreting ordinary post-exercise muscle soreness as serious illness), then not only would it be impossible to learn anything about true PEM present in the sample, but it would mislead readers, introduce conflicting information into the literature, and create the false evidence in support of psychosocial interventions and studies.There are all sorts of ways that misleading definitions can harm a project and ultimately us patients. There is no reason we should have to put up with this.

Anyone in contact with the remaining PAG members should try to persuade them to resign. It's probably the best chance we have to prevent funding of MEGA, and the best chance to undermine its credibility if it does get funded and presents a misleading picture of the illness. As difficult as it is to abandon a large biomedical study, it is essential to get it right and it appears that there is no genuine intention to let patients influence the project. I am sure there will soon be opportunities to support better designed projects in the UK.
 
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dangermouse

dangermouse

Senior Member
Messages
430
I am struggling to understand why you would select anybody who was involved in PACE. I find myself being concerned rather than hopeful with MEGA. I just thank goodness that we have Ron Davis et al, Fluge & Mellar and others working so hard for proper treatment & possible cure.

I want us all to have a chance to get better and MEGA scares me.
 
eafw

eafw

Senior Member
Messages
936
Location
UK
AndyPR said:
Posted on Facebook earlier today:
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Sorry to hear about this but not at all suprised. Crawley/Holgate/MEGA/AfME were never going to genuinely engage with those who know what they're talking about

Cheshire said:
am more and more puzzled by Davey-Smith's commitment. Playing the card of the outsider after 10 years is becoming unsustainable and nearly ridiculous.
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Davey-Smith will have been well briefed by Crawley, despite his public protestations that he "knows nothing". For both of them this is about empire building and careers. Never mind that GDS is considered to do better quality work, MEGA is a means to an end: lots of publications, and the status of "largest CFS trial"/ "groundbreaking big data" etc.
 
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