Petition: Opposing MEGA

[AndyPR]

So you think PACE was better than no PACE. No comment.

I think you have it a bit turned around there Andy, @batteredoldbook was agreeing with the idea that no science is better than bad science, not bad science is better than no science. (Or at least that is my interpretation of is post )

 

[AndyH]

I think you have it a bit turned around there Andy, @batteredoldbook was agreeing with the idea that no science is better than bad science, not bad science is better than no science. (Or at least that is my interpretation of is post )

Apologies batteredoldbook

 

[batteredoldbook]

I think you have it a bit turned around there Andy, @batteredoldbook was agreeing with the idea that no science is better than bad science, not bad science is better than no science. (Or at least that is my interpretation of is post )

Yes, was trying to emphatically agree.

 

[batteredoldbook]

Apologies batteredoldbook

No probs.

 

[Cheshire]

Patients don't know what's good for them

They think they need to rest. No, they need to exercise. They think they need medical treatment, no they need cognitive restructuring. Et cetera.

(cynical sarcasm)

Yeah, why can't I remember the only good patient is a patient noding mutely.

 

[batteredoldbook]

Am I right in guessing that MEGA is going to go ahead anyway the despite objections of what I assume will be more than 3,000 M.E patients? To be clear: that's a ballsy move. Could appear very disrespectful (because it kinda would be).
Also with so many pwme against MEGA any patient advisory panel associated with the project would be very unlikely to be representative of the full range of patient opinion. There'd be a danger that like Action for ME's involvement with PACE or AYME and Fitnet that limited patient involvement would be used to tick the Evidence Based Medicine box for "patient values" without fairly expressing the full range of them.
Of course were I on the patient panel the first thing I would do is raise my hand and ask for a judgement of PACE.

 

[Ysabelle-S]

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 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. 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.

thats my story and perceptions of the CMRC - less collaborative and more cabal.

Keith, I follow your tweets on Twitter, and thoroughly respect the work you do in this area. I find the way you've been treated to be absolutely abhorrent, but it also flags up yet again why patients are right not to trust the people and organisations involved. This is abysmal behaviour, and the PR campaign the other week, which deliberately attempted to mislead people on the PACE trial, only shows they have no interest in doing the right thing. They have dug their heels in and just want, and arrogantly expect, funding to carry on their own work, regardless of how increasingly out of touch that work is. This is just cronyism of the worst kind. Between this and what's come out in the Invest in ME statement about behind the scenes bad behaviour... well the whole bunch are just beyond the pale. Everything they do now only makes things worse.

 

[eafw]

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

Clearly no need, their snoops are probably on it as we speak.

 

[Barry53]

Let's see if OMEGA gets a few more signatures in response to this

It is on the cards.

Edit: I have now signed.

 

[eafw]

Since I have joined I've not one been asked to attend a single meeting ... less collaborative and more cabal

The big tent seems to be very much an inner circle of schemers, and some well-meaning but largely excluded people and organisations on the periphery. Any chance for those of you with ethics to have a little chat, leave en-masse and let the wider world know exactly why ?

 

[worldbackwards]

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)

Were White's bleatings taken seriously? Did he manage to get you into any trouble?

 

[lilpink]

Wow.

Double wow! Exactly my remark on reading that. I've many a time hoped for whistleblower ... looks like the process has begun. Not sure many have the cahoonas to join @Keith Geraghty
But thank you Keith. We all presume this is how the CMRC works so it's good to have an insider view which supports our (non faulty) beliefs.

 

[BurnA]

What sort of character is Stephen Holgate ?

Reading his email to Jonathan Edwards he states:

I should add that MEGA nor the CMRC has any connection with PACE or Peter White now he has retired.

This implies he recognises that having no association with Peter White is a good thing or at least an appeasing factor.

But we know he stood by, never said anything critical about White, PACE nor BPS in the past. We know he was happy to share Keith's critical emails with White. We know he continues to support Crawley.

I'd like him to explain this. How can he suddenly recognise that having no association with White might be a positive now that he is retired.

 

[Daisymay]

As we have discussed many times before, the intention was to bring together a collection of researchers (current and new - with a wide spectrum of views on causation and management), research funders, the pharmaceutical industry etc

The glaring flaw with this is that you are not talking about a spectrum of VIEWS on causation and management.

This is such a major misconception and manipulation which has been used by the psychiatrists to their advantage for years.

The BPS perspective on ME is indeed merely a point of view, a view being a belief strongly held but for which there is no proof.

But the scientific, objective evidence shows ME is an organic disease. This is therefore not a point of view, it is verifiable fact, a fact being a concept which can be proven.

And these facts invalidate the BPS view, the BPS view has been proven to be wrong.

So there should be no place whatsoever in any ME scientific collaborative for the BPS view or for those who persist in promoting it, end of story.

I don't understand how any patient charity can collaborate with those who doggedly adhere to the BPS view in defiance of the scientific evidence? To me it's unethical as well as unscientific.

I think that by taking part in the CMRV, charities are in effect giving validation to the BPS view and seriously failing in their duty to their members.

Here's how the BPS brigade have used this lie about differing points of view over the years:

http://www.margaretwilliams.me/2014/uk-governments-three-pronged-strategy-for-cfsme.pdf

"The Wessely School repeatedly uses a well-thought-out strategy: first they actively ignore the extant biomedical evidence base, failing to reference it in their papers and websites (leading people to believe it does not exist), then they diligently promote the notion that the biomedical model of ME/CFS is merely a “view” or a “belief” held by a few misguided clinicians, patients and activists, yet the existence of ME as a neuroimmune disease is not a “view” or a “belief” but a fact.

A “view” is a belief firmly held but with no proof of its truth, whereas a fact is a concept whose truth can be proved.

By referring to the biomedical model as simply a “view”, they instantly downgrade its validity in public perception. This “view” or “belief” held by patients is further degraded to a symptom of the disorder, the more strongly the view is held being “proof” of the need for “cognitive restructuring” to change these “aberrant illness beliefs” (the Wessely School advises that there is no need for any biomedical testing, claiming that this would increase the wrong illness beliefs). 2

At the same time, aided by the lazy and unquestioning media, the Wessely School promote as fact the psychosocial model, when in reality it is nothing more than their own “view”, a view which is invalidated by the scientific evidence. Undaunted, they disseminate the impression that there are these two divergent points of view, as evidenced by the Judgment of Mr Justice Cranston – see below. "

 

[Jonathan Edwards]

@Keith Geraghty, I thought there was nothing new left to shock me about the BPS crowd. I was wrong.

I am so sorry you have been treated so appallingly.

And thank you for confirming what I'd been suspecting for some time. That MEGA is another Crawley project.

I can never support it now. NO MATTER WHAT.

@charles shepherd, @Jonathan Edwards - any comments on Keith's experience?

I am not shocked. I worked in Lilliput for twenty five years. But one forgets. I met a fellow bird listener recently who recommended me some new hearing aids so that I could hear goldcrests. He said they were so good he was shocked. I was not shocked, but everything did suddenly become clear again.

If Esther Crawley genuinely called PACE a great trial in the recent past I cannot see how she can put in charge of serious science. I actually thought she was too clever to make such a fool of herself.

 

[BurnA]

If Esther Crawley genuinely called PACE a great trial in the recent past I cannot see how she can put in charge of serious science. I actually thought she was too clever to make such a fool of herself.

Given how well you put it here :

To put things in a nutshell, the way to ‘End the damaging battle over chronic fatigue syndrome’ to quote Esther’s New Scientist article, is for Esther, and the CMRC as a whole, to put out a clear statement that the shortcomings of past (and perhaps ongoing) studies of psychological and exercise therapies are understood and taken on board in future plans. Regardless of whether or not we think regular talking sessions and exercise management may well be helpful in the path to recovery, if we are to set a standard for CFS/ME research then we need to acknowledge that the evidence from trials from the PACE team and colleagues in the Netherlands is not reliable enough to be useful. The transition to good science we are all striving for needs to be complete and uncompromising - and seen to be so.

@charles shepherd Could you put your membership of the CMRC to good use and request a clear unambiguous statement from the CMRC on the PACE trial ?

Would be nice to see this in the minutes of the next meeting.


ETA maybe @Keith Geraghty could do this when he gets invited to his first meeting

 

[snowathlete]

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

other PACE club member has made a similar complaints 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. 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.

thats my story and perceptions of the CMRC - less collaborative and more cabal.

Screening? Approvals? I guess there may be some circumstances I may not have thought of that might justify the need to do this for researchers of a disease joining a big tend research collaborative on that disease, but I'm not sure what they may be. I for one would like to know what the screening criteria are. @charles shepherd do you happen to know?

The complaint from White is particularly disturbing. It sounds like the complaint was motivated by you being critical of his research. I find it a bit creepy actually that he looked you up on the net, took screenshots, and complained about posts you made on a public forum.

Well done for speaking up about it, this sort of thing needs to be exposed. If people keep quiet when they are treated badly, when people try to damage their careers, such treatment will continue, and things will not get better. It may e tempting to keep your head down but that is the wrong response. But it takes bravery to speak up.

I think it very worrying that Holgate would forward your message to a third party without your knowledge, and for it to then be used in such a negative way.

The more I hear the more I am concerned about the CMRC. I personally have always thought it was a bad idea. I have never supported it, but hoped something good would come of it, that I would be wrong. I thought those involved were either rotten eggs or they were wrong about their being worthwhile benefits to involvement. Having said that I have respect for people like Charles who are there for the right reasons even if I do not think it will prove worthwhile. But I have to say I am at the point where I truly hope the CMRC fails and eventually collapses. It's actions suggest it is an organization that is only really interested in promoting certain researchers and certain models of the disease, while trying to look like an organization interested in biological research. I ask myself who has benefited from the CMRC so far? I can only think of one person, or perhaps two and they are the very people who patients have the greatest concerns about.

I'm wondering what will come to light next to be honest.

 

[snowathlete]

Am I right in guessing that MEGA is going to go ahead anyway the despite objections of what I assume will be more than 3,000 M.E patients? To be clear: that's a ballsy move. Could appear very disrespectful (because it kinda would be).
Also with so many pwme against MEGA any patient advisory panel associated with the project would be very unlikely to be representative of the full range of patient opinion. There'd be a danger that like Action for ME's involvement with PACE or AYME and Fitnet that limited patient involvement would be used to tick the Evidence Based Medicine box for "patient values" without fairly expressing the full range of them.
Of course were I on the patient panel the first thing I would do is raise my hand and ask for a judgement of PACE.

I predict it will go ahead and I predict that they will create a patient advisory committee or some-such that they will populate with selected patients (just like Keith, they'll probably go through screening and approvals) who they feel they can control or who are limited in some ways. And they will say to funders, see we listened to patients because of the concerns they raised blah blah blah. Of course, it sounds like the funders are already on board anyway! But that will give the funders an excuse should they ever get investigated for their funding of this study in the future.

 

[charles shepherd]

Given how well you put it here :



@charles shepherd Could you put your membership of the CMRC to good use and request a clear unambiguous statement from the CMRC on the PACE trial ?

Would be nice to see this in the minutes of the next meeting.

I'm afraid that you are not going to get the CMRC to produce a unanimous or unambiguous statement on the failings of the PACE trial - so there is no realistic chance of this appearing in the next CMRC Board Minutes!

As I keep saying, the CMRC covers a very wide range of views on both cause and management of ME/CFS

So there are some members of the CMRC Board who believe (like the Lancet and NICE and probably much of the medical establishment that has any interest in ME/CFS) that the PACE trial remains a sound and useful piece of medical research

This is life outside the ME internet village and is another reason why I believe it is essential that the patient voice on issues like the PACE trial have to be heard by the CMRC from 'inside the tent'

 

[user9876]

If Esther Crawley genuinely called PACE a great trial in the recent past I cannot see how she can put in charge of serious science. I actually thought she was too clever to make such a fool of herself.

Its not just her calling PACE a great trial. She is repeating the methodological failures in her latest FITNET protocol where she has the same open label trial with interventions aimed at changing perception of illness with only subjective measures. She has learned from PACE and dropped any form of objective test. She either doesn't get the issue or wants to have a successful trial.