Trial By Error: Some Thoughts About an Upcoming Article

Exactly.

 

It would achieve what the BPS people want: that the press talks about anything other than BPS science being a fraud. I'm sure they don't mind articles about academics trading insults and accusations.

 

I'm only suggesting collecting the examples in one spot for potential reference. I am not saying they should be used offensively.

 

There was, i had mentioned it.
And that quote is completely correct, i could name several examples from recent news but it would bring politics into the thread so i will refrain.
I completely agree that any response to alternative fact articles should be very carefully measured and we should be ready to put malfeasance in the spotlight when necessary.

 

Wow, I never read that before. It is just shocking. What was the outcome of the complaints to his university?

As for Holgate, it just about says it all!

 

I think it also might be worthwhile to highlight that most PACE critics welcome relevant and sound science by psychologists or biomedical researchers alike. At the same time, it is widely accepted among PACE critics that bad biomedical research deserves equally rigorous criticism as bad psychological science.

Also, most PACE critics realize and accept failed replication even if it disproves highly promising biomedical research, be it on the illness' causes or treatment.

 

Keep calm and carry on
@dave30th

It’s horrible to be targeted, obviously because you are so effective and tenacious, like a dog with a bone.

You are honest. You report the facts as they are.

I thank goodness that we have you, thank you - it takes guts to tell the truth.

 

Oh this makes me sad reading that, and Keith's experience there. This was 2016. I'm in the patient advisory group for the CMRC (since December 2016), and we are (now!) much valued by Prof Stephen Holgate. I am also a big fan of Keith's work.

Anyone listening to the latest Gary Burgess podcast will have heard Dr Charles Shepherd mention the CRMC at least twice. Charles is at all the meetings & it's a real collection of members from all over the country, from scientists, to charities, to expert patients. https://www.meassociation.org.uk/themeshow/

I'll message Keith & see if we can get this turned around. I'm fully behind the CMRC's efforts to get massive funding for a biomedical research platform, and we should all be pulling together now, not fighting. None of us want anything more to do with the BPS approach. And no one I know in the CMRC would ever describe PACE as a "Great, great trial" ....

Obviously..... as if it needed saying... the change of vice chair in the CMRC in the past year has been ..... most...... helpful .....

 

Thank you @phil_in_bristol.

I remember reading about Geraghty’s treatment by Holgate, and being shocked. You are right that we should be working together and turning this round would be a step towards that and help demonstrate where the CMRC and Holgate really stand. I hope you succeed.

 

I do not remember that Stephen Holgate had anything to do with Keith's harassment - which I understand fortunately got no traction.

 

Keiths own words which I was referring to in my previous post relating to the conduct of Holgate...........

https://forums.phoenixrising.me/index.php?threads/petition-opposing-mega.47466/page-44#post-786584

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

 

@Trish posted a link in this post : https://www.s4me.info/threads/trial...t-an-upcoming-article.7944/page-5#post-140485

to a description by Keith himself of how Holgate got involved :

https://forums.phoenixrising.me/index.php?threads/petition-opposing-mega.47466/page-44#post-786584

 

Thanks @large donner, I don't think I previously knew of those details.

 

This is a shame. I think that UK medical profession has quite paternalistic approach stilland we the children supposed to be seen not heard. It’s a worry that this could be spun in a way which will elicit sympathy for them, the scientists, hostility to us the vexatious patients and I hope it doesn’t impact David Tuller adversely.

 

That is the point, they are the experts we should defer to and they can never make mistakes
If they do they will be protected because if their mistakes become known...

 

I'm hoping for the best for what, if any, article comes of this - but I'm brushing up on my Latin just in case.

 

I was contacted by a journalist in early September last year, following a tweet I posted in March, where I expressed the view that "I am really looking forward to Michael Sharpe's professional demise and his much-deserved public humiliation."

https://twitter.com/user/status/977919772884111360

The journalist said that the article was going to be about the fierce battle between CFS/M.E. patients and researchers and would probably not come out until the end of the year.
In light of my tweet, the journalist asked me what my views were about people who made death threats against researchers !!! They also wanted to know whether I thought that Sharpe was a bad person (or something like that) and whether I would like to meet him - to which I responded with words to the effect of "Why would I want to do that?"
I subsequently made notes about the near hour-long telephone conversation and have kept a record.

 

Sorry I am so clueless as I don't reside in U. K. What is Holgate's roll now and who is the present chair of the MRC... I gather the current chair is focused on biomedical research.. Is that correct?

 

I trust you enlightened him to the nature of the “fierce battle” - ie not patients vs researchers, but rather one group of researchers vs another group of researchers, scientists and informed patients!