Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

[Dx Revision Watch]

http://www.bristol.ac.uk/ccah/grants/

Active grants 2012-14

NIHR Senior Research Fellowship. Investigating the treatment of paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME). £864,736. Esther Crawley (Sole applicant) (2014-2019)

Medical Research Council (MRC) The epidemiology of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in adolescence. £ 305,242. Esther Crawley (PI). Co-applicants: Andy Ness, Charlotte Clarke, Glyn Lewis, Jon Tobias, Jonathan Sterne, Julian Hamilton Shields, Kate Tilling, Paul Gringras, Pete Blair, Stephen Stansfeld. (2013-2015)

NIHR RfPB. Early Intervention in adults with CFS/ME: Pilot Randomised Controlled Trial. £249,000. (PI Hazel O’Dowd). Co-applicants: Esther Crawley, Jenny Ingram, William Hollingworth, John Macleod, Alan Montgomery, Jonathan Sterne. (2012-2015).

The Linbury Trust and the Ashdon Trust. Pilot Randomized Controlled Trial comparing the Lightning Process with specialist medical care for CFS/ME. £164,000. Esther Crawley (PI) Co-applicants: Alan Montgomery, Nicola Mills, Will Hollingworth, Zuzana Deans, Jonathan Sterne, Alastair Gibson, Fiona Finch, Phil Parker and Jenny Donovan. (2010-2013).

NIHR. Clinician Scientist Fellowship. Evidence based prevention, identification and treatment of CFS/ME. Esther Crawley (Sole applicant). (Mentors: Alan Emond, George Davey-Smith, Andy Ness, Jonathan Sterne, Peter White). £873,579. (2009-2014).

Royal National Hospital for Rheumatic Diseases (RNHRD) Donated Funds. Patient Reported Outcome Measures for Paediatric CFS/ME: a qualitative study. £5311 Esther Crawley (PI). Co-applicants: Kirstie Haywood, Simon Collin, Lucy Beasant. (2012/13).

 

[Dx Revision Watch]

Worth remembering also, that some of those researcher/practitioners currently delivering CBT and other psychobehavioral therapies to CFS and ME patients are also researching the application of CBT in management of other diseases, like diabetes (Prof Chalder) and MS (Multiple sclerosis) (Chalder and Moss-Morris).

 

[seanpaul]

OMG: to all those shouting about how great the Collaborative is - Crawley is being funded to the tune of possibly more than £2.5 million pounds to carry out dubious research on children with ME/CFS that will not alter the course of this illness at all.

This may not include funding she attracts for her team also (junior researchers and Phds), and does not include funding for White and others in this psych clique UK. One could estimate a total of £10 million being spent on CBT and psychiatry derived studies in the UK over a 5-year cycle and we cheer about a conference at Bristol.

The outrage over the misuse of public funding for research into ME/CFS should continue and be even stronger.

Ask yourself this - £10 million given a team of virologists, immunologists, geneticists and so on - 10 years ago - where would we be today?

 

[Bob]

Of course, with all this division and hostility between ourselves, there's only one winner. Divide and conquer, so the saying goes.

 

[Bob]

BTW, I do understand most of the points of view that have been expressed in this thread, and I'm sympathetic to many of them. I just can't come to a conclusion about the collaborative before it's had a chance to thrive or fail. Also, I cannot base my conclusions on snippets of information selectively extracted from private emails, however reliable the source. We've all written loads of stuff in private emails that would not look good if single lines were extracted and then posted on the internet. Private emails are meant for an audience of one, and do not necessarily represent a person's outlook or world-view or personal opinions. For example, if communicating with an employer, I might say things that I think the employer wants to hear in order to facilitate a convenient outcome. I might say one thing to my boss and then do another thing in practice in order to make life easier for everyone. (Who doesn't in a work situation?) So the emails may represent people-management and office politics in practice, and that's one reason why I won't take the extracts at face value.

 

[Sidereal]

I don't quite understand why this conference has people jumping with joy. We have been hearing this talk of sickness behaviour, inflammation, cytokines, microglia activation, interferon treatment for Hep C causing fatigue & depression etc. etc. since the 1990s in depression research, in particular the field of (psycho)neuroimmunology. Psych journals are full of this stuff. Go to any mainstream psychiatry conference and attend the depression sessions. The vast majority of the talks will be biological there too. You won't hear much psychobabble there either, the odd "out of place" talk maybe. What you will hear is the exact same talks about fatigue & sickness behaviour using the exact same vocabulary as you heard in Bristol.

An enormous amount of money has already been spent (wasted) trying to figure out how these immunological concepts may translate into better treatments for depression-related fatigue and other symptoms and none of them - none - have panned out clinically thus far. People with that disease are still being treated by psychiatrists with medications based on the science of the 1950s and useless psychological approaches like psychotherapy.

So forgive me if we're not all optimistic and grateful about these wonderful new developments in ME/CFS research. I don't think that being "negative" about this Collaborative is treason or harassment or terrorism. Personally given my background I can't help but laugh at the things being sold to ME patients as some novel concepts. In reality all this talk of a broad church approach to fatigue is just another way for grant-chasing scientists to co-opt a large patient group of fatigued people to study (and get grants to keep the lights on and postdocs in their labs). It also easily allows for the psychiatrists to remain in control of our treatment. They're just updating their language a bit to sound more palatable in the 21st century so instead of aberrant illness beliefs we get cytokines but CBT and antidepressants are still the treatment of choice for these immunological markers; again, see the psych literature on this, this stuff has already been tried and written about extensively.

Quite clearly (to me at least), fatigue in this disease is not the same as fatigue in other diseases, and we should be trying to figure out why that is. I have never once heard a patient with primary depression tell me that they went to a wedding and ended up bedridden for a week or a year as a result. Or that they did an exercise programme years ago and never recovered from it. They will tell you that they feel extremely exhausted and don't feel like doing anything but if encouraged to get out of bed and do things, they are not harmed by activity, and sometimes even feel better from it. We all know that this is not the case for ME-related fatigue. I can agree that immune activation can explain this perception of fatigue and pain and flu-like malaise but I don't see how the sickness behaviour / microglia activation hypothesis can possibly explain the total metabolic breakdown seen in ME, at least severe ME, where people struggle to even digest food or use their breathing muscles.

To summarise, nothing I've seen reported from this conference makes me think we will be in a situation any time soon where an ME patient goes to the GP and doesn't receive extremely harmful medical advice to increase their activity levels and thus slide deeper into disability. In fact, we could well be in the same place in another 30 years.

 

[Esther12]

Private emails are meant for an audience of one, and do not necessarily represent a person's outlook or world-view or personal opinions. For example, if communicating with an employer, I might say things that I think the employer wants to hear in order to facilitate a convenient outcome. I might say one thing to my boss and then do another thing in practice in order to make life easier for everyone. (Who doesn't in a work situation?) So the emails may represent people-management and office politics in practice, and that's one reason why I won't take the extracts at face value.

I still want to see them so that I can make up my own mind. These sorts of correspondence can be really informative and helpful for people who do want to understand how those with power over them are making their decisions - in politics and history they can be really important for showing how what people say in public can be quite different to what they say in 'private'. I want to see the full e-mail chain before saying much more about them, but I don't think that these e-mails are likely to be more influenced by a desire to people manage than people's public statements.

 

[Bob]

I don't think that being "negative" about this Collaborative is treason or harassment or terrorism.

I absolutely agree.

My only concern in this thread is that conclusions are being drawn prematurely, without giving anything a chance to succeed. I don't accept that the collaborative is automatically and ultimately doomed to fail. I do accept that there is a good chance of it failing disastrously, and I'm deeply uncomfortable with its inclusivity, but I don't accept that it has failed before it has started. I want to give the project a chance to succeed or fail, and I'll base my conclusions on the outcomes.

Re 'fatigue', this isn't what I want to see being focused on either. I think it can be a massively unhelpful distraction, but there again, we've had discussions that show there might be some benefit in comparing overlapping illnesses, such as ME and Sjogren's Syndrome where one of their commonalities is 'fatigue'.

My personal preference is for investigations into immune abnormalities/dysfunction, autoimmunity, and genetic differences. But it seems that there was more to the conference than purely looking at fatigue. I get the feeling that the issue of 'fatigue' can be used as a sort of reference, or hub, that allows various researchers to converge their language and reference points, despite coming from different fields of research. Along with physical function, fatigue is also often used as a measure of outcomes in ME/CFS research, when there isn't a biomarker to measure.

Subjective fatigue was not the focus for all the researchers present. e.g. Prof Lipkin is carrying out a wide-ranging investigation of the immune system. And neuro-immune dysfunction seemed to be quite a central feature of the conference.

 

[Bob]

I still want to see them so that I can make up my own mind. These sorts of correspondence can be really informative and helpful for people who do want to understand how those with power over them are making their decisions - in politics and history they can be really important for showing how what people say in public can be quite different to what they say in 'private'. I want to see the full e-mail chain before saying much more about them, but I don't think that these e-mails are likely to be more influenced by a desire to people manage than people's public statements.

But my point is that selected private emails may not reflect someone's actual beliefs or opinions. For example, in a work situation, how honest are people when communicating with colleagues? One might tell a boss how lovely he/she is in an email, but then slag him/her off behind his/her back. Which version is the truth? So I think it may not be wise to read too much into emails that were meant for private consumption. That's not to say that they should be disregarded, but that it's perhaps wise to interpret them with caution, and with a nuanced and broad perspective.

 

[Esther12]

But my point is that selected private emails may not reflect someone's actual beliefs or opinions. For example, in a work situation, how honest are people when communicating with colleagues? One might tell a boss how lovely he/she is, but then slag him/her off behind his/her back. Which version is the truth? So I think it may not be wise to read too much into emails that were meant for private consumption. That's not to say that they should be disregarded, but that they have to be interpreted with caution.

Everything anyone says should be interpreted with caution, but I think I'd be more wary at taking public pronouncements at face value than e-mail correspondence. Who knows though - maybe there'll also be an e-mail with Holgate saying 'Bwah-ha-ha... I've suckered Wessely into agreeing to piss off.'

 

[Dx Revision Watch]

I absolutely agree.

My only concern in this thread is that conclusions are being drawn prematurely, without giving anything a chance to succeed. I don't accept that the collaborative is automatically and ultimately doomed to fail. I do accept that there is a good chance of it failing disastrously, but I don't accept that it has failed before it has started. I want to give the project a chance to succeed or fail, and I'll base my conclusions on the outcomes.

Setting aside concerns I have already written about here - this was a single conference.

As with the previous MRC CFS/ME working group, the key issue will be how the Collaborative's ongoing work translates into increased funding for quality research (and treatments); improved perception of the illness by GPs, specialists and allied health professionals, improved media coverage etc.

With regard to media coverage and the conference, I have not had time, today, to check but yesterday, I could find no media coverage of the conference. I could also find no media coverage as a result of Dr Lipkin's press briefing (though that would have had a broader scope).

 

[Min]

I don't quite understand why this conference has people jumping with joy. We have been hearing this talk of sickness behaviour, inflammation, cytokines, microglia activation, interferon treatment for Hep C causing fatigue & depression etc. etc. since the 1990s in depression research, in particular the field of (psycho)neuroimmunology. Psych journals are full of this stuff. Go to any mainstream psychiatry conference and attend the depression sessions. The vast majority of the talks will be biological there too. You won't hear much psychobabble there either, the odd "out of place" talk maybe. What you will hear is the exact same talks about fatigue & sickness behaviour using the exact same vocabulary as you heard in Bristol.

An enormous amount of money has already been spent (wasted) trying to figure out how these immunological concepts may translate into better treatments for depression-related fatigue and other symptoms and none of them - none - have panned out clinically thus far. People with that disease are still being treated by psychiatrists with medications based on the science of the 1950s and useless psychological approaches like psychotherapy.

So forgive me if we're not all optimistic and grateful about these wonderful new developments in ME/CFS research. I don't think that being "negative" about this Collaborative is treason or harassment or terrorism. Personally given my background I can't help but laugh at the things being sold to ME patients as some novel concepts. In reality all this talk of a broad church approach to fatigue is just another way for grant-chasing scientists to co-opt a large patient group of fatigued people to study (and get grants to keep the lights on and postdocs in their labs). It also easily allows for the psychiatrists to remain in control of our treatment. They're just updating their language a bit to sound more palatable in the 21st century so instead of aberrant illness beliefs we get cytokines but CBT and antidepressants are still the treatment of choice for these immunological markers; again, see the psych literature on this, this stuff has already been tried and written about extensively.

Quite clearly (to me at least), fatigue in this disease is not the same as fatigue in other diseases, and we should be trying to figure out why that is. I have never once heard a patient with primary depression tell me that they went to a wedding and ended up bedridden for a week or a year as a result. Or that they did an exercise programme years ago and never recovered from it. They will tell you that they feel extremely exhausted and don't feel like doing anything but if encouraged to get out of bed and do things, they are not harmed by activity, and sometimes even feel better from it. We all know that this is not the case for ME-related fatigue. I can agree that immune activation can explain this perception of fatigue and pain and flu-like malaise but I don't see how the sickness behaviour / microglia activation hypothesis can possibly explain the total metabolic breakdown seen in ME, at least severe ME, where people struggle to even digest food or use their breathing muscles.

To summarise, nothing I've seen reported from this conference makes me think we will be in a situation any time soon where an ME patient goes to the GP and doesn't receive extremely harmful medical advice to increase their activity levels and thus slide deeper into disability. In fact, we could well be in the same place in another 30 years.

Quite so. Invest in ME have now run 9 similar annual conferences focusing on biomedical research, but we in the UK continue to be abused, neglected and derided by the medical profession as a direct result of the misinformation put out by Crawley, White, Wessely etc.

These conferences do not appear to result in improved treatment; I have no idea why the Collaborative one is being singled out and lauded as a breakthtough.

 

[Bob]

I have no idea why the Collaborative one is being singled out and lauded as a breakthtough.

No one has said that the collaborative conference was better than the Invest in ME conferences. If there has been a 'break-through, then it's simply because this conference is an 'establishment' conference. Getting an establishment conference to focus on biomedical research seems like quite a breakthrough to me.

 

[Dx Revision Watch]

Evidently the MRC does not view them as "private emails" otherwise MRC would not have collated and provided them. They were written in connection with the Collaborative, for which MRC is a stakeholder and MCR is subject to FOI Act.

When I ran my Yahoo Group, I used to advise my members to never make any claims on a message board that they would not be comfortable putting in front of a solicitor. I guess those exchanging correspondence in the name of a working group for which the major stakeholder falls under the FOI Act should bear in mind that copies of all materials (which can include letters, minutes, meeting notes, summaries, electronic communications, presentations and notes of telephone calls) may at some point be requested under FOI.

 

[biophile]

The conference is a good sign, but the situation described in the recent Tymes Trust document is not. It is going to take more than a few relatively minor overdue grants and a conference to undo decades of neglect, abuse, ridicule, frustration, suffering, and mistrust. For some people it may take years to get over it even if positive changes are consistent.

 

[Dx Revision Watch]

A reminder of the 2009 MRC Workshop line up:

Participant List: MRC CFS/ME Research Workshop November 23, 2009

Received by Suzy Chapman from MRC Corporate Information and Policy under FOI:

http://wp.me/p5foE-2q2

MRC CFS/ME Research Workshop

19th and 20th November 2009

Participant list

Dr Neil Abbot – ME Research UK
Professor Jangu Banatvala – King’s College London
Dr Kate Bishop – National Institute for Medical Research
Dr Gijs Bleijenberg – Radbound University [Ed: Radboud Universiteit Nijmegen]
Professor Tim Cawston – University of Newcastle
Professor Trudie Chalder – King’s College London
Dr Charlotte Clark – Barts and the London
Professor Philip Cowen – University of Oxford
Dr Esther Crawley – University of Bristol
Professor Maria Fitzgerald – University College London
Dr Suzanne Hagan – Glasgow Caledonian University
Dr Kirstie Haywood – University of Warwick
Professor Stephen Holgate – University of Southampton
Professor Jim Horne – University of Loughborough
Dr Jonathan Kerr – St George’s University of London
Professor Paul Little – University of Southampton
Dr Samuele Marcora – Bangor University
Professor Chris Mathias – Imperial College London
Professor Paul Moss – University of Birmingham
Professor Rona Moss-Morris – University of Southampton
Dr Luis Nacul – London School of Hygiene and Tropical Medicine
Professor Julia Newton – University of Newcastle
Dr Derek Pheby – ME Observatory
Professor Anthony Pinching – Peninsula Medical School
Professor Chris Ponting – MRC Functional Genomics Unit
Professor Alan Rickinson – University of Birmingham
Dr Charles Shepherd – ME Association
Dr Vance Spence – ME Research UK
Sir Peter Spencer – Action for ME
Dr Jonathan Stoye – National Institute for Medical Research
Professor Chris Ward – University of Nottingham
Professor Peter White – Barts and the London
Mary-Jane Willow – Association of Young People with ME

MRC Head office Staff

Dr Rob Buckle
Dr Jo Latimer

 

[Dx Revision Watch]

http://meagenda.wordpress.com/2009/11/23/participant-list-mrc-cfsme-research-workshop/

[Ed: Note this is an unofficial note of the proceedings prepared by Dr Charles Shepherd MEA, not the official MRC note of the Workshop.]

MRC Expert Group on ME/CFS: Brief Notes on Research Workshop held on 19/20 November 2009

Monday, 23 November 2009 16:42

The Medical Research Council’s Expert Group Workshop on ME/CFS Research took place on Thursday 19 November and Friday 20 November at Heythrop Park, Oxford. Around 30 researchers and clinicians from various disciplines, plus MRC staff, took part.

Besides those with existing expertise in this area, there were others present who were new to the subject and consequently brought fresh thinking to the issues and questions being discussed.

PRESENTATION SUMMARIES AND SLIDES

The MRC will be publishing summaries and slides from all the main presentations that were given – once this information has been checked and approved by those who gave the presentations.

I understand that the MRC will also be publishing a full list of everyone who attended this meeting.

The MEA website will carry a suitable link in our news box when all this information appears on the MRC website.

PRESENTATIONS

There were presentations followed by discussions on the following key topics on the first day:

Epidemiology and clinical phenotyping – Dr Esther Crawley
Autonomic dysfunction – Professor Julia Newton
Sleep – Professor Jim Horne
Pain – Professor Maria Fitzgerald
Neuropsychology – Professor Gijs Bleijenberg
Neuroimaging – Professor Phil Cowen
New technologies – Professor Chris Ponting
Immune system dysregulation and infection – Professor Tony Pinching
Virology – Professor Paul Moss

Although not covered by specific presentations, a number of other topics – including muscle abnormalities, mitochondrial dysfunction, post-mortem and tissue bank research – were referred to, along with the way in which patients under the ME/CFS umbrella should be defined and selected to take part in research studies.

The second day consisted of group discussions which considered the following topics:

capitalising on current issues and UK strengths in the area of ME/CFS research
the use of new technologies
partnership models
research prioritisation
Each group then reported back to facilitate a whole group discussion.

The meeting closed with a summing up and an explanation of the next steps forward from Professor Stephen Holgate, Chair of the MRC Expert Group.

BACKGROUND INFORMATION

Background information provided by the MRC included a 351-page literature review of the current state of ME/CFS research and paper copies of the XMRV paper from Science.

The MEA provided copies of the latest edition (October 2009) of our guidelines – ME/CFS/PVFS – An Exploration of the Key Clinical Issues -on research, clinical assessment and management.

INFECTION AND XMRV:

There was a great deal of lively discussion relating to all aspects of XMRV infection – ie existing research findings; replication of the preliminary results from research groups both here and abroad; implications for blood donation; possible pathogenicity of the XMRV infection; future research priorities – during the formal sessions, over dinner, and well into the night on Thursday. We were fortunate in having four researchers present who are all involved with taking this research forward and are well aware of what is happening both here and abroad.

It was made clear to all the researchers present who are involved in retroviral work that the MEA Ramsay Research Fund has money available if this is required urgently to help fund any immediate or short term funding requirement. The MEA is also very willing to look at more major grant proposals relating to XMRV.A link to the latest MEA summary on XMRV can be found on the home page of the MEA website and we will be updating this information later in the week. The website also has details of our exchange of correspondence with Sir Liam Donaldson, Chief Medical Officer, on the subject of blood donation.

The All Party Parliamentary Group on ME has XMRV on the agenda when it meets at the House of Commons on Wednesday 2 December. The Rt Hon Mike O’Brien, Minister of State (Health Services) at the Department of Health, will be present to deal with the main item on the agenda: the APPG Inquiry into NHS Services for people with ME/CFS. This meeting is open to the public – more details re time and venue can be found on the MEA website. If you are intending to come to the meeting please check the MEA website the day before because the House of Commons venue can change at short notice. And do allow at least 30 minutes from arriving at the House of Commons to get through security and find directions the right room.

The Countess of Mar’s Forward ME Group also has research on the agenda when they meet on Tuesday 24 November at the House of Lords.

The MRC workshop also discussed other infections, in particular herpes virus infections, that have been implicated in ME/CFS.

AUTONOMIC DYSFUNCTION: PROFESSOR JULIA NEWTON

Professor Julia Newton and her team at the University of Newcastle, who are working on autonomic dysfunction in ME/CFS, have just had a new paper published in the European Journal of Clinical Investigation. The paper describes an interesting practical approach to the management of symptoms relating to orthostatic intolerance. Ref: Sutcliffe K et al. Home orthostatic training in chronic fatigue syndrome – a randomised placebo-controlled feasibility study. EJCI, November 12 2009. If we can obtain an abstract of this EJCI paper it will be placed on the MEA website news box. The MEA Ramsay Research Fund is currently funding another study at the University of Newcastle to examine muscle energy metabolism in ME/CFS patients. More information can be found in the research section of the MEA website.

MRC: NEXT STEP FORWARD

There are a number of ways in which the MRC can help with a research agenda, in addition to providing finance for good new research proposals. So the next step forward in relation to ME/CFS will be for the MRC Expert Group to meet early in 2010 to discuss the content of this research workshop, along with the conclusions and recommendations that were produced during further discussion on defining research strengths and priorities on the second day.

Personal note

On a personal note I would like to add that while I have been extremely critical of the MRC in the past I believe that Professor Stephen Holgate, who is leading this ME/CFS initiative, is genuinely determined to take forward the biomedical research that the patient population, along with many doctors and researchers, believes is so vital if we are going to find effective forms of management for ME/CFS.

Membership of MRC Expert Group on ME/CFS Research

Professor Stephen Holgate (Chairman)
Professor Jill Belch
Professor Philip Cowen
Dr Esther Crawley
Professor Malcolm Jackson
Dr Jonathan Kerr
Professor Ian Kimber
Professor Hugh Perry
Dr Derek Pheby
Professor Anthony Pinching
Dr Charles Shepherd
Sir Peter Spencer
Dr Rob Buckle (MRC)
Dr Joanna Latimer (MRC)
Dr Charles Shepherd
Hon Medical Adviser, ME Association

23 November 2009

 

[Wildcat]

.

On the quesstion of what is considered by the Collaborative to to constitute harassment, and whether or not the clause 3.2.3 of the Collaborative Charter consititutes a gagging clause.

The record of the meeting at the end of January 2013 specifically lists FOI's, complaints to the GMC and Parliamentary Questions in House of Lords Debates. (The bolding is mine to hilight the points for readers here):



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf?dl=0

.
On the 1st February 2013, an email was sent from the out-going Head of Mental Health at the SMC. It was a “write up of the main points to come out of” the ‘CFS’ meeting held at the Wellcome Trust the day before.


(quote 13)
All the best with this for the future, I hope the launch of the research collaboration goes well and that it gets easier to do research in this field.”


(quote 14)

Those in attendance at this meeting had included UK CMRC members Peter White
of QMUL, Joe McNamara and Carmel Turner of the MRC and Esther Crawley
of Bristol University. Simon Wessely & Trudie Chalder of IOP, King’s College London were also in attendance.


Quotes 15-18 are taken directly from this meeting's records in the email of 1st February.

(quote 15)

Current situation

Coming out’ about the harassment has led to increased support for CFS/ME
researchers, for example, from colleagues who were not aware of the situation.


(quote 16)

Harassment

Harassment is most damaging in the form of vexatious FOIs.

Complaints are also causing problems. Researchers are still dealing with complaints about them to the GMC.

House of Lords Debates on CFS/ME can result in Parliamentary Questions which often require detailed responses

•



(quote 17)

researchers are using strategies to reduce the impact of harassment and put
the case for research into CFS/ME including:

Learning about the FOI Act and using strategies to reduce time spent responding, eg
putting minutes of meetings online

Coming together as a research community to respond to criticisms eg the joint letter in response to criticisms of Simon Wessely receiving the John Maddox prize.

-
Working with trusted journalists to cover the problems associated with CFS/ME research.



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

[alex3619]

Of course, with all this division and hostility between ourselves, there's only one winner. Divide and conquer, so the saying goes.

Recently I have called it confuse and divide, with the conquer part in progress.

 

[Scarecrow]

.

On the quesstion of what is considered by the Collaborative to to constitute harassment, and whether or not the clause 3.2.3 of the Collaborative Charter consititutes a gagging clause.

The record of the meeting at the end of January 2013 specifically lists FOI's, complaints to the GMC and Parliamentary Questions in House of Lords Debates. (The bolding is mine to hilight the points for readers here):



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf?dl=0

.
On the 1st February 2013, an email was sent from the out-going Head of Mental Health at the SMC. It was a “write up of the main points to come out of” the ‘CFS’ meeting held at the Wellcome Trust the day before.


(quote 13)
All the best with this for the future, I hope the launch of the research collaboration goes well and that it gets easier to do research in this field.”


(quote 14)

Those in attendance at this meeting had included UK CMRC members Peter White
of QMUL, Joe McNamara and Carmel Turner of the MRC and Esther Crawley
of Bristol University. Simon Wessely & Trudie Chalder of IOP, King’s College London were also in attendance.


Quotes 15-18 are taken directly from this meeting's records in the email of 1st February.

(quote 15)

Current situation

Coming out’ about the harassment has led to increased support for CFS/ME
researchers, for example, from colleagues who were not aware of the situation.


(quote 16)

Harassment

Harassment is most damaging in the form of vexatious FOIs.

Complaints are also causing problems. Researchers are still dealing with complaints about them to the GMC.

House of Lords Debates on CFS/ME can result in Parliamentary Questions which often require detailed responses

•



(quote 17)

researchers are using strategies to reduce the impact of harassment and put
the case for research into CFS/ME including:

Learning about the FOI Act and using strategies to reduce time spent responding, eg
putting minutes of meetings online

Coming together as a research community to respond to criticisms eg the joint letter in response to criticisms of Simon Wessely receiving the John Maddox prize.

-
Working with trusted journalists to cover the problems associated with CFS/ME research.



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Would I be right in concluding that the meeting at the end of January was not in fact a meeting of the CMRC Executive Board but did include some of those board members, who are BPS school, a couple of their BPS cronies plus a couple of MRC observers?

At this meeting, the BPS school whined about the complaints and FOI requests they were receiving, which they equated with 'harassment'. What's new?

How in any way does that make the following clauses from the CMRC Charter 'gagging clauses'?

Members must:

3.1.3. Not take part in the harassment or abuse of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research.

and

3.2.3 Members will be required to sign a declaration that they will not take part in the harassment or abuse of researchers. Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research.