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UK Research Collaborative Conference in Newcastle: 13th - 14th October

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From the statements attributed to Professor Stephen Holgate in the Virginia Gewin gizmodo article, it looks like another 'Behind the scenes at the CMRC' FOI is required to clarify exactly what has been going on inside the Collaborative, behind the scenes and unknown to the UK ME population.


http://gizmodo.com/the-battle-to-finally-understand-chronic-fatigue-syndro-1741658406

"Unlike Jason’s emphasis on transparency and patient participation, however, the secret to the UK collaborative’s success, according to Holgate, is a membership charter that forbids harassment or abuse of researchers. In effect, patient groups are banned from whipping up a media frenzy over research findings.
The charter has already been tested a couple of times, says Holgate, who gave the aggressors a choice: apologise or leave. He’s even suggested that he’ll disband the collaborative completely if all parties don’t play by the rules.


“We set up the charter to protect researchers; anybody who joins us can’t abuse or upset that trust,” he says. “There is power in this to stop silly publicity which is quite destructive.”
.



An explanation from Stephen Holgate and the MRC is required by the UK ME community.
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lansbergen

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I see Mark Edwards has a new article in the Lancet Neurology, Title "Cranial functional (psychogenic) movement disorders". I don't see much room for doubt about his beliefs on so called functional disorders there. http://www.thelancet.com/journals/laneur/article/PIIS1474-4422(15)00226-4/abstract?elsca1=etoc&elsca2=email&elsca3=1474-4422_201512_14_12_&elsca4=Neuropsychiatry|Internal/Family Medicine|Neurology|Lancet
Although the specialty of functional neurological disorders has expanded, appreciation of cranial functional movement disorders is still insufficient. Identification of the positive features of cranial functional movement disorders such as convergence and unilateral platysmal spasm might lend diagnostic weight to a suspected functional neurological disorder. Understanding of the differential diagnosis, which is broad and includes many organic causes (eg, stroke), is essential to make an early and accurate diagnosis to prevent complications and initiate appropriate management. Increased understanding of these disorders is also crucial to drive clinical trials and studies of individually tailored therapies.
I do not see what is wrong with that.
 

daisybell

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I do not see what is wrong with that.
To me, the surety that they have ruled out organic causes, and that the disorder is therefore psychogenic is a dangerous one to hold. I don't see that perspective helping patients or indeed medicine. The only people I have met in my career in health who have been told they have functional neurological disorders were very distressed by symptoms and had been left without hope of help in many ways. What's so different from how we are perceived?
 

lansbergen

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In the word psychogenic.
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Understanding of the differential diagnosis, which is broad and includes many organic causes (eg, stroke), is essential to make an early and accurate diagnosis to prevent complications and initiate appropriate management.
 

daisybell

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The point being made is that organic causes need to be ruled out.... Which in their view means that once known organic causes are eliminated, only psychogenic disorder remains. No apparent room for the view than these issues might be due to an unknown organic disorder.
 

Woolie

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iansbergen said:
To me, the surety that they have ruled out organic causes, and that the disorder is therefore psychogenic is a dangerous one to hold.
Where do you see that in the article?
Can I say that my reading of Dr. M Edwards' work - elsewhere - is that he is very firmly of the belief that these disorders are indeed of psychological origin.

The reasoning is similar to ME, but actually far more damming of the patients themselves. He argues that there may be a genuine, temporary movement problem, which resolves, but the anxious/depressed/somatizing/obsessive/impressionable patient remains firmly and powerfully convinced the problems persists, and adjusts his/her movements in order to fulfill this expectation.

The apparent neurological sophistication of some of the work can sometimes serve to conceal this very core idea underlying his theory.
 

MeSci

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From the statements attributed to Professor Stephen Holgate in the Virginia Gewin gizmodo article, it looks like another 'Behind the scenes at the CMRC' FOI is required to clarify exactly what has been going on inside the Collaborative, behind the scenes and unknown to the UK ME population.


http://gizmodo.com/the-battle-to-finally-understand-chronic-fatigue-syndro-1741658406

"Unlike Jason’s emphasis on transparency and patient participation, however, the secret to the UK collaborative’s success, according to Holgate, is a membership charter that forbids harassment or abuse of researchers. In effect, patient groups are banned from whipping up a media frenzy over research findings.
The charter has already been tested a couple of times, says Holgate, who gave the aggressors a choice: apologise or leave. He’s even suggested that he’ll disband the collaborative completely if all parties don’t play by the rules.


“We set up the charter to protect researchers; anybody who joins us can’t abuse or upset that trust,” he says. “There is power in this to stop silly publicity which is quite destructive.”
.



An explanation from Stephen Holgate and the MRC is required by the UK ME community.
.
I would like to know what he was talking about, with at least one example because, despite having read a wide range of webpages campaigning against psychoquackery (does that term make me one of the guilty ones?) and rebutting fraudulent or nonsensical journal papers, I have seen nothing that fits the description 'harassment' or 'whipping up a frenzy'. Yes, of course there have been a few intemperate remarks, but you get that everywhere and I don't condone it.
 

MeSci

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This is Stone's weird website. I particularly 'recommend' this page to those who need convincing of his implacably psychogenic stance. A little less than halfway down he claims that "Most experts believe that these symptoms exist at the interface between the brain and mind". o_O

About halfway down he helpfully gives a list under the heading 'What other names have been used to describe these symptoms?'

I think that leaves no room for doubt.
 

Countrygirl

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This is an interesting set of e-mails including those from Profs Wessely and White, Dr Crawley and others relating the inside story of the launch of the Collaborative that was posted by Tymes Trust. Enjoy!


BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)
A Report from Tymes Trust: the inside story on the Collaborative. Our Report is based, not on speculation or conjecture, but on direct evidence from emails exchanged by the participants. We think this is key reading for the ME community. We are publishing the text here in case you have not seen it yet.

NB In the records of the meeting where 'harassment' of researchers was discussed, no mention was made of personal threats such as have been reported in the media. Freedom of Information (FOI) requests were listed as the most damaging type of 'harassment'.

Full Report follows: originally released August 2014

INTRODUCTION

When the UK CFS/ME Research Collaborative (UK CMRC) was set up in 2013, the Young ME Sufferers Trust declined to attend the launch, due to concerns we expressed in a Statement, the text of which is here:
http://www.tymestrust.org/txt/alert201305meawarenessday.txt

Our concerns continue. The following information is from 212 email chains and associated attachments received from an FOI request to the Medical Research Council (MRC).

We note:

In the run-up to the full formation and launch of the Collaborative, a
meeting was recorded by the Science Media Centre (SMC)'s outgoing head of Mental Health (details below). In attendance were key persons now involved with the Collaborative. Under their heading 'Harassment' (of researchers) they list:

* Freedom of Information Requests
* Complaints to the GMC and various institutions
* Parliamentary Questions

A series of Action Points include:

* 'Support4rs - Work with Peter White and Simon Wessely to develop
resources for dealing with harassment'
* 'SMC – Run a press briefing on biosocial illness to improve public
understanding.'

NB Two sets of written records are kept of Collaborative meetings; one for the Board, another for the public. This should be borne in mind when reading records that are placed online.
[We understand that this may have changed after our report was published.]

Timeline with numbered quotes for ease of use

The first section of emails below shows how Professor Stephen Holgate, Chair of what was initially called the UK ME/CFS Research Collaborative, initiated and facilitated discussions resulting in a
change of terminology, with 'CFS' now predominating.
The charities' views were overridden; however, they accepted the situation and still took part.

* On 12th January 2013, Professor Stephen Holgate, Chair of what was at that point called the UK ME/CFS Research Collaborative (UK MCRC) sent an email to Collaborative group members stating: “As you will know, we have firmed up the date and place for the Inaugural
Launch of the UK ME/CFS Research Collaborative (UK MCRC). I attach a list of people that I intend to approach as researchers or those interested in supporting research in the field …”
(quote 1)
* Professor Holgate then emailed Professor Simon Wessely with importance marked as ‘High’ and copied only to Dr Esther Crawley of Bristol University and Joe McNamara of the MRC. It read “Dear Simon, If you feel there is anything you can do to help in identifying
researchers or in other ways, I would be very grateful. Thank you so much. Kind regards, Stephen.” (quote 2)
* Simon Wessely replied “First of all, it looks very good…… can’t see many ommissions (sic). I would probably sprinkle one or two scientists/researchers not particularly connected with CFS into the mix myself. Experimental psychologist perhaps, joe, do you know one?....” Simon Wessely’s suggested researchers were redacted. (quote 3)
* Stephen Holgate replied “Wow! This is terrific, Simon – thanks so much. I will add your suggested names. Kindest regards, Stephen” (quote 4)
(NB At the end of January, Stephen Holgate sent an update on the issue of researchers to Collaborative group members (31st January 2013): “Please see attached list of research-interested people so far attending the launch… Could you see if there is anyone else we should include...?” (quote 5) The list of recipients
included Simon Wessely.)

* Again on Saturday 12th January, Stephen Holgate sent another email: ”To all: One point that I would like a view on is the terminology: CFS/ME or ME/CFS, NHS, NICE and MRC use
CFS/ME. I wish to be consistent so can I have a view from all please. I will then make any changes (including the name of the collaborative!)” (quote 6)
* Simon Wessely was on the list of recipients. He replied: “Thanks for asking. I think we should stick with CFS/ME frankly. Keeps it in line with MRC and NICE. Journals certainly only use CFS. USA doesn’t use ME at all. CFS/ME seems to be the best compromise.
Nervous that ME/CFS would alienate one or two researchers not actively involved in area but who you would like to see involved.” (quote 7)
* This view was endorsed by Peter White “…… I agree with Simon that CFS has to lead. The hybrid CFS/ME allows the broad church that encourages generalizable research, while allowing stratification where necessary.” (quote 8)
* Sonya Chowdhury, CEO of Action for ME (AfME) replied “ … my preference is that we use ME/CFS and I suspect if we were to ask members, there would be a preference for this form from them too. However, I am prepared to work with either as the importance here is
consistency and collaboration and if the general view differs, I will go with the majority.” (quote 9)
* The MEA stated a preference for ME/CFS but that they also were “happy to accept the majority view on this”. (quote 10)
* MERUK’s preference was also for ME/CFS, they added “we use ME/CFS as do the patient-based campaigning charities.” (quote 11)
* On 21st January Stephen Holgate emailed the group, “After undertaking a poll for preferences of a title, the CFS/ME terminology seems to be the option most wish to go for. It seems that the NHS, Research Councils and NICE use this terminology as do the majority
on Pubmed. I hope we can now accept this.” (quote 12)
· The Collaborative thus became the UK CFS/ME Research Collaborative (UK CMRC).


At the end of January a meeting was held at which 'harassment' of researchers was discussed:

The Medical Research Council (MRC) and the Science Media Centre (SMC) are two of the UK CMRC Observers. Ed Sykes, SMC Head of Mental Health, attends the meetings of the Executive
Board on behalf of the SMC, while Joe McNamara & Neha Issar-Brown attend on behalf of the MRC. The MRC contributed nearly £5000 to the launch of the Collaborative and have stated their
willingness to be involved in and contribute further both directly and in kind.

* 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
- Esther Crawley and Stephen Holgate are establishing a research collaborative including researchers, charities and other interested parties. There will be a launch event on 22nd April.
* (quote 18) from Action Points
- SMC – run FOI Act brainstorm
- ALL – look for opportunities to publicise CFS/ME research and give background information about the condition
- Support4rs – work with Peter White and Simon Wessely to develop resources for dealing with harassment
- SMC – run a press briefing on biosocial illness to improve public understanding. Fiona Fox to get information from Trudie Chalder and Rona Ross-Morris.


Subsequent action by the UK CMRC can be seen in the context of these Action Points (above).

* One SMC ‘strategy’ to reduce ‘harassment' was to “put minutes of meetings online.”
Following the 22nd May 2013 meeting of the Executive Board of the UK CMRC Sonya Chowdhury emailed “Hi all – please find attached the minutes of our meeting and a summary for public consumption. I have deliberately made the summary detailed so that people don’t feel we’re only providing limited information…In the future, I would suggest that the summary is approved by the Chair and Vice Chair so that they can go up immediately after the meeting.” (quote 19)
- 3rd June, Sonya Chowdhury to group “As agreed we can now share the above summary [“CFSMERC minutes 23.5.13”] on websites etc. and the minutes are for the Board only. (quote 20)
- 11th October, Sonya Chowdhury to group “Hi All – please find attached: Chair-approved minutes of our meeting on Monday; Chair-approved summary notes of the meeting which will go on our website, as previously agreed.” (quote 21)
- 14th January 2014, Sonya Chowdhury to group “Attached are the chair-approved minutes (for the Board only) and the summary notes (for public consumption).” (quote 22)


* Re the SMC Action Point regarding “opportunities to publicise CFS/ME research and give background information about the condition” (reference quote 18); on 17th April Esther Crawley informed the Collaborative that the press release regarding the launch had been rewritten and “hopefully incorporates most of your comments. I hope this is now the final version.” (quote 23)
* She clarified that this press release concerned the launch of the Collaborative, and not the press conference, which was to take place separately. Journalists were sent a separate invitation to the press conference. She explained: “journalists will already have received this invitation from the SMC about the press conference (pasted below).” (quote 24)
* The press conference invitation ‘pasted below’ began – “Science Media Centre News Briefing – What? Chronic Fatigue Syndrome – unravelling the controversy” (quote 25)
- It stated “Chronic Fatigue Syndrome (CFS; also known as ME) is an incredibly controversial field, not just in terms of public perception, diagnosis and treatment but even for the very researchers trying to help who have experienced campaigns of
harassment from some patients.” (quote 26)
- It went on to state that “The disease affects over 600,000 people in the UK” inviting journalists to come along to find out amongst other thing “What imaging studies are showing us about overactive brains”. (quote 27)
- For further information journalists were asked to contact Dr Edward Sykes, Head of Mental Health at the Science Media Centre. (quote 28)

* Dr Charles Shepherd of the MEA objected in an email of the 17th April:
- 1. I still don’t believe it is sensible to drag the harassment campaign into the press reporting of the launch of the collaborative …I just don’t see what is going to be achieved by encouraging journalists to include this aspect in their reporting of the event. (quote 29)
- 2. Could we also include myalgic encephalomyelitis (or encephalopathy) in the title and CFS/ME elsewhere. (quote 30)
- 3. I don’t know what ‘overactive brains’ are in relation to ME/CFS. Sounds a bit like anxiety …. I don’t think this is a good term to be feeding to the press. (quote 31)

* The response from Esther Crawley was “Just to clarify – the SMC invitation was included [in her previous email] just to explain why we have done the press release as we have. It is not for public consumption. It has already gone out.” (quote 32)

* Further to the SMC Action Point regarding “opportunities to publicise CFS/ME research and give background information about the condition” (reference quote 18): on 12th March

2014, Esther Crawley emailed to the group: “There is a competition to present research to Parliament. The aim is to provide information about research to try and ensure funding is secure for next year. If successful the winners will have posters about projects with
demonstrable benefits in parliament at a reception on June 3rd this year.” (quote 33)
- “I have prepared an application (attached) with help from both Stephen and Peter for the CMRC. We have only 300 words to describe a “project” which has already had health benefits. Looking at previous successful applications, they expect very lay friendly descriptions of projects that tell a story. As it is only 300 words, I have included snippets about research that I am familiar with that has already had health benefits (the category I think we should submit under).” (quote 34)
- “Stephen has obviously helped me a lot with this. Although we have mentioned the harassment, this is part of the previous story and is to help identify what is new and different at the moment…..” (quote 35)
- “The deadline is Friday but I will need to submit it tonight …. So if you have any comments, can you let me know as soon as possible? Can you please copy Stephen in please?” (quote 36)
- The original draft of the 300 word description by Esther Crawley, Stephen Holgate & Peter White included “In the past, the CFS/ME researchers and charities have been divided, with researchers leaving the field because of personal attacks and funding
difficulties.” (quote 37)
- The final submission included: “…Research has been a powerful tool for change in the UK with a small amount of funding producing significant health benefits. For example, n children and teenagers, we have shown that it is common, occurs in primary school
children; is more common in those from socially disadvantaged families and is very treatable with excellent outcomes. In adults we have shown it is more common in UK ethnic minorities, described inequalities to accessing health care and shown which treatments are safe and effective. This research evidence-based approach has
encouraged more commissioners to provide services and helped clinicians to improve services, increasing the numbers of children and adults offered treatment.” (quote 38)


- After Esther Crawley sent the draft version out to the Collaborative for comment she sent another email to Stephen Holgate and Peter White: “As you can see – I have sent the form to the executive. I mentioned the harassment bit in the email because early feedback suggested this might be a problem with the charities (sigh).” (quote 39)

The launch of the UK CFS/ME Research Collaborative (UK CMRC) took place on April 22nd 2013.

The Young ME Sufferers Trust (Tymes Trust)
August 2014
Formatted Report for ease of use: http://bit.ly/1vSRhOI
 
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The whole "you might recover" thing reflects that a minority (5-10%) do end up recovering spontaneously (though as we know on the forum, some of those people become ill again years later).

I think they say this to try and give people hope.

You know how it is, you have severe symptoms, you've been given a dead-end diagnosis, told their are no treatments and they say, hey keep your chin up, I know a guy who knows a guy who recovered!
I'm absolutely certain that with a correct and early diagnosis and with the right advice (rather than the 'just get on with it and exercise as much as you can' bobbins I did get) I would have recovered. Indeed, I improved in the first 2/3 months as it was the summer holidays from university and I was back playing some sport and feeling reasonably well. But Uni started up, I thought I'd be ok and threw myself headlong into it, ploughing on as advised despite worsening symptoms. The result was me in a bed for seven years and enormous pain and disability now (with a milder period in the middle). But I would have recovered if I'd been told to keep taking it easy for a while. ME is a chronic illness for most, but recovery in the early stages at least is certainly possible. After a longer period of time, I know of very very few who have made a meaningful recovery.
 

Woolie

Senior Member
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oh my, @Countrygirl, this is extraordinary reading! Some gems, for those not great with longer texts:

Under their heading 'Harassment' (of researchers) one email lists:
* Freedom of Information Requests
* Complaints to the GMC and various institutions
* Parliamentary Questions
Professor Holgate then emailed Professor Simon Wessely ... and copied only to Dr Esther Crawley of Bristol University and Joe McNamara of the MRC. It read “Dear Simon, If you feel there is anything you can do to help in identifying researchers or in other ways, I would be very grateful. Thank you so much. Kind regards, Stephen.”

Simon Wessely replied “First of all, it looks very good…… can’t see many ommissions (sic). I would probably sprinkle one or two scientists/researchers not particularly connected with CFS into the mix myself. Experimental psychologist perhaps, joe, do you know one?... * Stephen Holgate replied “Wow! This is terrific, Simon – thanks so much. I will add your suggested names. Kindest regards, Stephen .
Other extraordinary quotes from one of the meetings (around the issue of strategies to prevent harassment:

* ‘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. 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
* ….. 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...
- Coming together as a research community to respond to criticisms...
- Working with trusted journalists to cover the problems associated with CFS/ME research

Action Points raised at the same meeting:
- SMC – run FOI Act brainstorm
- ALL – look for opportunities to publicise CFS/ME research and give background information about the condition
- Support4rs – work with Peter White and Simon Wessely to develop resources for dealing with harassment
- SMC – run a press briefing on biosocial illness to improve public understanding.
Email from Esther Crawley:
“Stephen has obviously helped me a lot with this. Although we have mentioned the harassment, this is part of the previous story and is to help identify what is new and different at the moment…..”
in another email to Stephen Holgate and Peter White: “As you can see – I have sent the form to the executive. I mentioned the harassment bit in the email because early feedback suggested this might be a problem with the charities

I TOLD YOU THEY WAS ORGANISED!!!!
 
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This is Stone's weird website. I particularly 'recommend' this page to those who need convincing of his implacably psychogenic stance. A little less than halfway down he claims that "Most experts believe that these symptoms exist at the interface between the brain and mind". o_O

About halfway down he helpfully gives a list under the heading 'What other names have been used to describe these symptoms?'

I think that leaves no room for doubt.
The website is very strange and badly made too - impossible to read on my high-resolution screen as I can't zoom in at all. Obviously programmed by someone who doesn't believe in standards or has knowledge of accessibility.
 

MeSci

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The website is very strange and badly made too - impossible to read on my high-resolution screen as I can't zoom in at all. Obviously programmed by someone who doesn't believe in standards or has knowledge of accessibility.
It has actually improved - previously the pages didn't have their own URLs, and you couldn't do word searches on the pages!
 
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UK Research Collaborative Conference in Newcastle: October 14th and 15th 2015

The first part of the official conference report, which concentrates on the presentations on neuropathology and neuroimaging in ME/CFS, is now available to download:

https://drive.google.com/file/d/0B7UzrU_BPprNQ3BVTm5Gclh0RFk/view?pli=1

The full MEA summary can also be downloaded from the MEA website:
http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/

Dr Charles Shepherd
Hon Medical Adviser, MEA
Board member, UK Research Collaborative