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Petition: Opposing MEGA

Jo Best

Senior Member
Messages
1,032
Some good news about some of the best stuff :) http://future.cofeforme.eu/IIME-Newslet-1611-03.shtml
Extract -
The preliminary B-cell research paper was published in 2016 click here.

After an expression of interest from UEA/IFR it was agreed to relocate the rituximab trial to Norwich Research Park, home for the UK Centre of Excellence for ME.

In January Dr Oystein Fluge and his team will visit Norwich to work with the UK researchers in planning the trial - click here.

The original target for the rituximab trial was set by our advisor back in 2013. Having shown great vision and determination in looking at other areas of research linked to their phase III trial experiences and developing an incremental, evolutionary method of research then we feel the Norwegian Haukeland researchers have exactly the model of how good research should proceed. With the progress made by the Norwegian researchers and the increased knowledge now gained by them it will be interesting to see how the UK trial planning will progress with this new collaboration.
 

Keith Geraghty

Senior Member
Messages
491
my dealings with the CMRC

I just want to recount to you all what joining CMRC meant. I contacted Prof. Holgate to join the CMRC - in good faith thinking it was a new beginning in ME/CFS research, with myself being a junior UK-based ME/CFS researcher. My first emails to Prof. Holgate were ignored. I actually sent three emails over months that were all ignored. I then had to contact the University of Southampton Press office to get Prof. Holgate's direct line. I eventually got to send his secretary an email and she forwarded to him and he eventually got in touch with me. I intially asked could I have a chat on the phone - he said no, he asked me to travel to see him, now thats roughly an 8 hour car journey and meeting time just to have a talk, I could easily do in 25-30 mins by phone.

I was sent forms to complete to join the CMRC. Months went past and I heard nothing back. I phoned his secretary to ask whats happening to my application - she told me that my application had gone to Esther Crawley in Bristol for screening -- I was like "what". It then turned out that my application for membership had to be approved by the CMRC at their next meeting - this happened, and I was informed I needed to supply factual evidence of CFS/ME publciations in the last year - at the time I was only beginning to publish in this field.

To cut a long story short I think it took over 1/.5 years to join the CMRC. Since I have joined I've not once been asked to attend a single meeting. Recently, Prof. Holgate organised a meeting of researchers he and Crawley picked to come to Bristol to discuss MEGA - they obviously didnt invite me -- after all who am I, only one of the few active ME/CFS researchers in the UK and unlike the very respected George Davy Smith who has told the CMRC conference two years in a row that he knows nothing much about ME/CFS - I would argue, I do.

Now lets move on to the even better story. In late 2014 I officially applied for access to the PACE trial data set from the PACE team. At first I was ignored (see a trend here) - I then contacted Prof. Holgate to ask him if he could ask fellow CMRC board member, Prof. White, if I could have access *given this was meant to be a collaborative, Any ways - my request was denied, with absolutely no reason given *such is the social etiquette of these so-called famous scientists. I went back to Holgate who advised me to make a complaint to the MRC. I considered this but later decided not to . however ........

within weeks, a complaint was made to my home institution, the University of Manchester - from Prof. Peter White, stating I was acting in a highly unprofessional manner. (he had not contacted me)
wait for the best bit --- when I asked the nature of the complaint I was supplied with screenshots of my posts on Phoenix Rising (as an individual) and copies of emails. I looked at these emails and realised that they were not emails I had to sent to Prof. White or anyone one else - they were emails I had previously written to Prof. Holgate telling him how upset and proplexed I felt about the PACE trial and the way patients have been treated (including copying in some statements from patients about their anger)
.....so essentially, Prof. Holgate had shared my personal emails with White and I assume the whole PACE club.
.....yes, Prof. Holgate shared my emails complaining about the PACE trial, with the PACE trial author/authors

other PACE club members have recently made a similar complaint to my University about a recent PACE-gate editorial I wrote in the Journal of Health Psychology.

What faith could I have in Prof. Holgate or Esther Crawley, given my personal experience of the CMRC? Imagine any other researcher had to endure what I had to? - yet Prof. Holgate recently went to support Esther Crawley give a talk to journalists at the Science Media Centre in London to promote FITNET. Its not a collaborative in my experience - thats a misnomer, it appears to be a PR and body to seek funding (primarily for Esther Crawley it would appear from the outside), via MEGA, which she will control and lead from Bristol.

Given the outrageous statements Crawley made last week of radio BBC Bristol, that PACE was a "great great trial" and that critics were a "tiny minority" and that rates of CFS among kids is 2% and that CBT-GET (FITNET) can bring about a 63-67% recovery rate - I have no faith in her as an informed and knowledgeable ME/CFS researcher.

thats my story and perception of the CMRC
 
Last edited:

Molly98

Senior Member
Messages
576
Some good news about some of the best stuff :) http://future.cofeforme.eu/IIME-Newslet-1611-03.shtml
Extract -
Fantastic news :)- can we highlight to the BBC that given the extensive and enthusiastic coverage of Crawley's FITNET trial then the news of this trial needs to be given the exact same coverage to avoid bias, perhaps the Countess of Mar would be a good one to push for this, but the more of us that bring this up with them the better.
 

Molly98

Senior Member
Messages
576
my dealings with the CMRC

I just want to recount to you all what joining CMRC meant. I contacted Prof. Holgate to join the CMRC - in good faith thinking it was a new beginning in ME/CFS research, with myself being a junior UK-based ME/CFS researcher. My first emails to Prof. Holgate were ignored. I actually sent three emails over months that were all ignored. I then had to contact the University of Southampton Press office to get Prof. Holgate's direct line. I eventually got to send his secretary an email and she forwarded to him and he eventually got in touch with me. I intially asked could I have a chat on the phone - he say no, he asked me to travel to see him, now thats roughly an 8 hour car journey and meeting time just to have a talk, I could easily do in 25-30 mins by phone.

I was sent forms to complete to join the CMRC. Months went past and I heard nothing back. I phoned his secretary to ask whats happening to my application - she told me that my application had gone to Esther Crawley in Bristol for screening -- I was like "what". It then turned out that my application for membership had to be approved by the CMRC at their next meeting - this happened, and I was informed I needed to supply factual evidence of CFS/ME publciations in the last year - at the time I was only beginning to publish in this field.
To cut a long story short I think it took over 1/.5 years to join the CMRC. Since I have joined I've not one been asked to attend a single meeting. Recently, Prof. Holgate organised a meeting of researchers he and Crawley picked to come to Bristol to discuss MEGA - they obviously didnt invite me -- after all who am I, only one of the few active ME/CFS researchers in the UK and unlike the very respected George Davy Smith who has told the CMRC conference two years in a row that he knows nothing much about ME/CFS - I would argue, I do.

Now lets move on to the even better story. In late 2014 I officially applied for access to the PACE trial data set from the PACE team. At first I was ignored (see a trend here) - I then contacted Prof. Holgate to ask him if he could ask fellow CMRC board member, Prof. White, if I could have access *given this was meant to be a collaborative, Any ways - my request was denied, with absolutely no reason given *such is the social etiquette of these so-called famous scientists. I went back to Holgate who advised me to make a complaint to the MRC. I considered this but later decided not to . however ........

within weeks, a complaint was made to my home institution, the University of Manchester - from Prof. Peter White, stating I was acting in a highly unprofessional manner. (he had not contacted me)
wait for the best bit --- when I asked the nature of the complaint I was supplied with screenshots of my posts on Phoenix Rising (as an individual) and copies of emails. I looked at these emails and realised that they were not emails I had to sent to Prof. White or anyone one else - they were emails I had previously written to Prof. Holgate telling him how upset and proplexed I felt about the PACE trial and the way patients have been treated (including copying in some statements from patients about their anger)
.....so essentially, Prof. Holgate had shared my personal emails to him, with White and I assume the whole PACE club.
.....yes, Prof. Holgate shared my emails complaining about the PACE trial, with the PACE trial author/authors

Now - that was in 2015, just this week I find another PACE club member has made a similar complaint to the Unviersity of Manchester about a recent PACE-gate editorial I wrote in the Journal of Health Psychology.

What faith could I have in Prof. Holgate or Esther Crawley, given my person experience of the CMRC? Imagine any other researcher had to endure what I had to? - yet Prof. Holgate recently went to support Esther Crawley give a talk to journalists at the Science Media Centre in London to promote FITNET. It appears only researchers hand-picked by Holgate and the PACE club are brought into the CMRC - the same appears true for MEGA. Its not a collaborative in my experience - thats a misnomer, it appears to be a PR and body to seek funding (primarily for Esther Crawley it would appear from the outside), via MEGA, which she will control and lead from Bristol.

Given the outrageous statements Crawley made last week of radio BBC Bristol, that PACE was a "great great trial" and that critics were a "tiny minority" and that rates of CFS among kids is 2% and that CBT-GET (FITNET) can bring about a 63-67% recovery rate - I have no faith in her as an informed and knowledgeable ME/CFS researcher.

that's my story and perceptions of the CMRC - less collaborative and more cabal.

Thank you for sharing your experiences of CMRC with us Keith.
It gives good insight into its workings and the way certain peoples who hold the power operate and I think confirms what many of us were thinking and feeling.

It disgusting actually.

Any serious scientist , and I think charities now, ought to leave it well alone.
 

Cheshire

Senior Member
Messages
1,129
I just want to recount to you all what joining CMRC meant.

The complaints made to your university and the sharing of private emails made my jaw drop, even though this team has often acted beyond anything I would have expected.
They have no ethics...

How can they say they are acting for the good of patients when they so obviously act against our interests?
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
@Keith Geraghty - thank you for telling us.
I am now signing OMEGA - I had been waiting because I was holding out for glimmers of hope that MEGA might be able to sort itself out. The nails are firmly in the coffin now.
Stephen Holgate has shown his colours.

I think this post should be forwarded to Stephen Holgate so he can better understand why OMEGA is outplaying MEGA