MEpedia - User contributions [en]

King's College London

2022-08-29T12:47:55Z

Violet202:/* The clinic */ tiny correction

'''King's College London''' is one of the oldest universities in the [[United Kingdom]].<ref name="history">{{Cite web|url=https://www.kcl.ac.uk/aboutkings/history/overview.aspx|title=About Us - History|last=King's College London|first=|authorlink=|date=|website=www.kcl.ac.uk|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> Several other notable institutions have merged with King's College over the years, including '''Guy's, King's and St Thomas's School of Medicine''', and '''The Institute of Psychiatry.'''<ref name="history" />

==Notable people==

[[Florence Nightingale]] is one of King's most notable historical people.

==History ==

== The clinic ==
Professor Sir [[Simon Wessely]] was treating patients with Chronic Fatigue Syndrome at the clinic for many years. <ref>{{Cite web|url= https://www.rsm.ac.uk/latest-news/2017/qa-with-sir-simon-wessely/}}</ref>

==ME/CFS Researchers ==

* [[Simon Wessely]]
* [[Alicia Deale]]
* [[Trudie Chalder]]
* [[Rona Moss-Morris]]

== Freedom of Information Act requests ==
King's College London refused to provide information requested about "substantiated claims of harassment of allegations of threats" to staff under the Freedom of Information Act, claiming this information was exempt from disclosure on the grounds that it may identify individuals.<ref>{{Cite web|url=https://www.whatdotheyknow.com/request/370916/response/921879/attach/3/F366.16%20Response.pdf|title=Freedom of Information Act request 370916, response 921879|last=King's College London|first=|authorlink=King's College London|date=Jan 17, 2017|website=|archive-url=|archive-date=|url-status=|access-date=}}</ref> However, controversial researcher Sir [[Simon Wessely]], who is employed by King's College has repeatedly identified himself as the victim of harassment, abuse and even death threats in a number of news articles.

==Online presence==
*PubMed
*Twitter
*Facebook
*[http://www.kcl.ac.uk Website]
*YouTube

==ME/CFS website==

Kings was the UK’s biggest promoter of the biopsychosocial approach to CFS. From 2006-2021 it ran a multi-page website which gave an insight into the model. An archive of the website can still be found [https://web.archive.org/web/20110811080536/http://www.kcl.ac.uk/projects/cfs]

Their unit website said:

"The Persistent Physical Symptoms Research and Treatment Unit [&] is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS, sometimes known as ‘ME’).
The unit is a partnership between King's College London, South London and Maudsley NHS Trust and NIHR Biomedical Research Centre."

& until 2022 stated that:

"Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases. "

[https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1]

In response to the 2021 NICE guidelines update, the website was changed and service became targeted towards “fatigue, pain, irritable bowel symptoms and non-cardiac chest pain“ with Chronic Fatigue Syndrome notably largely removed and chronic fatigue put in its place. An assertion that “Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME” still remains:

https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

although it is absent from their other website: https://slam.nhs.uk/service-detail/service/persistent-physical-symptoms-research-and-treatment-unit-278

[[David Tuller]] covered this transition & Dr [[Charles Shepherd]]‘s letter to the service following the NICE update, in his blog:
https://www.virology.ws/2022/08/09/trial-by-error-kings-college-london-still-promoting-discredited-cbt-get-deconditioning-paradigm/

==Further links==
*Wikipedia
*[http://www.kcl.ac.uk Institution]

==References==
{{Reflist}}

[[Category:Universities]]
[[Category:British universities]]

King's College London

2022-08-29T12:46:25Z

Violet202:/* The clinic */ Detail link

'''King's College London''' is one of the oldest universities in the [[United Kingdom]].<ref name="history">{{Cite web|url=https://www.kcl.ac.uk/aboutkings/history/overview.aspx|title=About Us - History|last=King's College London|first=|authorlink=|date=|website=www.kcl.ac.uk|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> Several other notable institutions have merged with King's College over the years, including '''Guy's, King's and St Thomas's School of Medicine''', and '''The Institute of Psychiatry.'''<ref name="history" />

==Notable people==

[[Florence Nightingale]] is one of King's most notable historical people.

==History ==

== The clinic ==
Professor Sir [Simon Wessely]] was treating patients with Chronic Fatigue Syndrome at the clinic for many years. <ref>{{Cite web|url= https://www.rsm.ac.uk/latest-news/2017/qa-with-sir-simon-wessely/}}</ref>

==ME/CFS Researchers ==

* [[Simon Wessely]]
* [[Alicia Deale]]
* [[Trudie Chalder]]
* [[Rona Moss-Morris]]

== Freedom of Information Act requests ==
King's College London refused to provide information requested about "substantiated claims of harassment of allegations of threats" to staff under the Freedom of Information Act, claiming this information was exempt from disclosure on the grounds that it may identify individuals.<ref>{{Cite web|url=https://www.whatdotheyknow.com/request/370916/response/921879/attach/3/F366.16%20Response.pdf|title=Freedom of Information Act request 370916, response 921879|last=King's College London|first=|authorlink=King's College London|date=Jan 17, 2017|website=|archive-url=|archive-date=|url-status=|access-date=}}</ref> However, controversial researcher Sir [[Simon Wessely]], who is employed by King's College has repeatedly identified himself as the victim of harassment, abuse and even death threats in a number of news articles.

==Online presence==
*PubMed
*Twitter
*Facebook
*[http://www.kcl.ac.uk Website]
*YouTube

==ME/CFS website==

Kings was the UK’s biggest promoter of the biopsychosocial approach to CFS. From 2006-2021 it ran a multi-page website which gave an insight into the model. An archive of the website can still be found [https://web.archive.org/web/20110811080536/http://www.kcl.ac.uk/projects/cfs]

Their unit website said:

"The Persistent Physical Symptoms Research and Treatment Unit [&] is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS, sometimes known as ‘ME’).
The unit is a partnership between King's College London, South London and Maudsley NHS Trust and NIHR Biomedical Research Centre."

& until 2022 stated that:

"Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases. "

[https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1]

In response to the 2021 NICE guidelines update, the website was changed and service became targeted towards “fatigue, pain, irritable bowel symptoms and non-cardiac chest pain“ with Chronic Fatigue Syndrome notably largely removed and chronic fatigue put in its place. An assertion that “Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME” still remains:

https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

although it is absent from their other website: https://slam.nhs.uk/service-detail/service/persistent-physical-symptoms-research-and-treatment-unit-278

[[David Tuller]] covered this transition & Dr [[Charles Shepherd]]‘s letter to the service following the NICE update, in his blog:
https://www.virology.ws/2022/08/09/trial-by-error-kings-college-london-still-promoting-discredited-cbt-get-deconditioning-paradigm/

==Further links==
*Wikipedia
*[http://www.kcl.ac.uk Institution]

==References==
{{Reflist}}

[[Category:Universities]]
[[Category:British universities]]

King's College London

2022-08-29T12:39:19Z

Violet202:/* The clinic */ heading added

'''King's College London''' is one of the oldest universities in the [[United Kingdom]].<ref name="history">{{Cite web|url=https://www.kcl.ac.uk/aboutkings/history/overview.aspx|title=About Us - History|last=King's College London|first=|authorlink=|date=|website=www.kcl.ac.uk|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> Several other notable institutions have merged with King's College over the years, including '''Guy's, King's and St Thomas's School of Medicine''', and '''The Institute of Psychiatry.'''<ref name="history" />

==Notable people==

[[Florence Nightingale]] is one of King's most notable historical people.

==History ==

== The clinic ==
Professor Sir [Simon Wessely]] was treating patients with Chronic Fatigue Syndrome at the clinic for many [https://www.rsm.ac.uk/latest-news/2017/qa-with-sir-simon-wessely/ years]

==ME/CFS Researchers ==

* [[Simon Wessely]]
* [[Alicia Deale]]
* [[Trudie Chalder]]
* [[Rona Moss-Morris]]

== Freedom of Information Act requests ==
King's College London refused to provide information requested about "substantiated claims of harassment of allegations of threats" to staff under the Freedom of Information Act, claiming this information was exempt from disclosure on the grounds that it may identify individuals.<ref>{{Cite web|url=https://www.whatdotheyknow.com/request/370916/response/921879/attach/3/F366.16%20Response.pdf|title=Freedom of Information Act request 370916, response 921879|last=King's College London|first=|authorlink=King's College London|date=Jan 17, 2017|website=|archive-url=|archive-date=|url-status=|access-date=}}</ref> However, controversial researcher Sir [[Simon Wessely]], who is employed by King's College has repeatedly identified himself as the victim of harassment, abuse and even death threats in a number of news articles.

==Online presence==
*PubMed
*Twitter
*Facebook
*[http://www.kcl.ac.uk Website]
*YouTube

==ME/CFS website==

Kings was the UK’s biggest promoter of the biopsychosocial approach to CFS. From 2006-2021 it ran a multi-page website which gave an insight into the model. An archive of the website can still be found [https://web.archive.org/web/20110811080536/http://www.kcl.ac.uk/projects/cfs]

Their unit website said:

"The Persistent Physical Symptoms Research and Treatment Unit [&] is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS, sometimes known as ‘ME’).
The unit is a partnership between King's College London, South London and Maudsley NHS Trust and NIHR Biomedical Research Centre."

& until 2022 stated that:

"Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases. "

[https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1]

In response to the 2021 NICE guidelines update, the website was changed and service became targeted towards “fatigue, pain, irritable bowel symptoms and non-cardiac chest pain“ with Chronic Fatigue Syndrome notably largely removed and chronic fatigue put in its place. An assertion that “Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME” still remains:

https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

although it is absent from their other website: https://slam.nhs.uk/service-detail/service/persistent-physical-symptoms-research-and-treatment-unit-278

[[David Tuller]] covered this transition & Dr [[Charles Shepherd]]‘s letter to the service following the NICE update, in his blog:
https://www.virology.ws/2022/08/09/trial-by-error-kings-college-london-still-promoting-discredited-cbt-get-deconditioning-paradigm/

==Further links==
*Wikipedia
*[http://www.kcl.ac.uk Institution]

==References==
{{Reflist}}

[[Category:Universities]]
[[Category:British universities]]

King's College London

2022-08-29T12:33:34Z

Violet202:/* ME/CFS website */ correction

'''King's College London''' is one of the oldest universities in the [[United Kingdom]].<ref name="history">{{Cite web|url=https://www.kcl.ac.uk/aboutkings/history/overview.aspx|title=About Us - History|last=King's College London|first=|authorlink=|date=|website=www.kcl.ac.uk|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> Several other notable institutions have merged with King's College over the years, including '''Guy's, King's and St Thomas's School of Medicine''', and '''The Institute of Psychiatry.'''<ref name="history" />

==Notable people==

[[Florence Nightingale]] is one of King's most notable historical people.

==History ==

==ME/CFS Researchers ==

* [[Simon Wessely]]
* [[Alicia Deale]]
* [[Trudie Chalder]]
* [[Rona Moss-Morris]]

== Freedom of Information Act requests ==
King's College London refused to provide information requested about "substantiated claims of harassment of allegations of threats" to staff under the Freedom of Information Act, claiming this information was exempt from disclosure on the grounds that it may identify individuals.<ref>{{Cite web|url=https://www.whatdotheyknow.com/request/370916/response/921879/attach/3/F366.16%20Response.pdf|title=Freedom of Information Act request 370916, response 921879|last=King's College London|first=|authorlink=King's College London|date=Jan 17, 2017|website=|archive-url=|archive-date=|url-status=|access-date=}}</ref> However, controversial researcher Sir [[Simon Wessely]], who is employed by King's College has repeatedly identified himself as the victim of harassment, abuse and even death threats in a number of news articles.

==Online presence==
*PubMed
*Twitter
*Facebook
*[http://www.kcl.ac.uk Website]
*YouTube

==ME/CFS website==

Kings was the UK’s biggest promoter of the biopsychosocial approach to CFS. From 2006-2021 it ran a multi-page website which gave an insight into the model. An archive of the website can still be found [https://web.archive.org/web/20110811080536/http://www.kcl.ac.uk/projects/cfs]

Their unit website said:

"The Persistent Physical Symptoms Research and Treatment Unit [&] is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS, sometimes known as ‘ME’).
The unit is a partnership between King's College London, South London and Maudsley NHS Trust and NIHR Biomedical Research Centre."

& until 2022 stated that:

"Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases. "

[https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1]

In response to the 2021 NICE guidelines update, the website was changed and service became targeted towards “fatigue, pain, irritable bowel symptoms and non-cardiac chest pain“ with Chronic Fatigue Syndrome notably largely removed and chronic fatigue put in its place. An assertion that “Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME” still remains:

https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

although it is absent from their other website: https://slam.nhs.uk/service-detail/service/persistent-physical-symptoms-research-and-treatment-unit-278

[[David Tuller]] covered this transition & Dr [[Charles Shepherd]]‘s letter to the service following the NICE update, in his blog:
https://www.virology.ws/2022/08/09/trial-by-error-kings-college-london-still-promoting-discredited-cbt-get-deconditioning-paradigm/

==Further links==
*Wikipedia
*[http://www.kcl.ac.uk Institution]

==References==
{{Reflist}}

[[Category:Universities]]
[[Category:British universities]]

King's College London

2022-08-29T12:32:07Z

Violet202:/* ME/CFS website */ punctuation

'''King's College London''' is one of the oldest universities in the [[United Kingdom]].<ref name="history">{{Cite web|url=https://www.kcl.ac.uk/aboutkings/history/overview.aspx|title=About Us - History|last=King's College London|first=|authorlink=|date=|website=www.kcl.ac.uk|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> Several other notable institutions have merged with King's College over the years, including '''Guy's, King's and St Thomas's School of Medicine''', and '''The Institute of Psychiatry.'''<ref name="history" />

==Notable people==

[[Florence Nightingale]] is one of King's most notable historical people.

==History ==

==ME/CFS Researchers ==

* [[Simon Wessely]]
* [[Alicia Deale]]
* [[Trudie Chalder]]
* [[Rona Moss-Morris]]

== Freedom of Information Act requests ==
King's College London refused to provide information requested about "substantiated claims of harassment of allegations of threats" to staff under the Freedom of Information Act, claiming this information was exempt from disclosure on the grounds that it may identify individuals.<ref>{{Cite web|url=https://www.whatdotheyknow.com/request/370916/response/921879/attach/3/F366.16%20Response.pdf|title=Freedom of Information Act request 370916, response 921879|last=King's College London|first=|authorlink=King's College London|date=Jan 17, 2017|website=|archive-url=|archive-date=|url-status=|access-date=}}</ref> However, controversial researcher Sir [[Simon Wessely]], who is employed by King's College has repeatedly identified himself as the victim of harassment, abuse and even death threats in a number of news articles.

==Online presence==
*PubMed
*Twitter
*Facebook
*[http://www.kcl.ac.uk Website]
*YouTube

==ME/CFS website==

Kings was the UK’s biggest promoter of the biopsychosocial approach to CFS. From 2006-2021 it ran a multi-page website which gave an insight into the model. An archive of the website can still be found [https://web.archive.org/web/20110811080536/http://www.kcl.ac.uk/projects/cfs]

Their unit website said:

"The Persistent Physical Symptoms Research and Treatment Unit [&] is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS, sometimes known as ‘ME’).
The unit is a partnership between King's College London, South London and Maudsley NHS Trust and NIHR Biomedical Research Centre."

& until 2022 stated that:

"Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases. "

[https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1]

In response to the 2021 NICE guidelines update, the website was changed and service became targeted towards “fatigue, pain, irritable bowel symptoms and non-cardiac chest pain“ with Chronic Fatigue Syndrome notably largely removed and chronic fatigue put in its place. An assertion that “Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME” still remains:

https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

although it is absent from their other website https://slam.nhs.uk/service-detail/service/persistent-physical-symptoms-research-and-treatment-unit-278

[[David Tuller]] covered this transition & Dr [Charles Shepherd]]‘s letter to the service following the NICE update, in his blog:
https://www.virology.ws/2022/08/09/trial-by-error-kings-college-london-still-promoting-discredited-cbt-get-deconditioning-paradigm/

==Further links==
*Wikipedia
*[http://www.kcl.ac.uk Institution]

==References==
{{Reflist}}

[[Category:Universities]]
[[Category:British universities]]

King's College London

2022-08-29T12:31:37Z

Violet202:/* ME/CFS website */ correction

'''King's College London''' is one of the oldest universities in the [[United Kingdom]].<ref name="history">{{Cite web|url=https://www.kcl.ac.uk/aboutkings/history/overview.aspx|title=About Us - History|last=King's College London|first=|authorlink=|date=|website=www.kcl.ac.uk|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> Several other notable institutions have merged with King's College over the years, including '''Guy's, King's and St Thomas's School of Medicine''', and '''The Institute of Psychiatry.'''<ref name="history" />

==Notable people==

[[Florence Nightingale]] is one of King's most notable historical people.

==History ==

==ME/CFS Researchers ==

* [[Simon Wessely]]
* [[Alicia Deale]]
* [[Trudie Chalder]]
* [[Rona Moss-Morris]]

== Freedom of Information Act requests ==
King's College London refused to provide information requested about "substantiated claims of harassment of allegations of threats" to staff under the Freedom of Information Act, claiming this information was exempt from disclosure on the grounds that it may identify individuals.<ref>{{Cite web|url=https://www.whatdotheyknow.com/request/370916/response/921879/attach/3/F366.16%20Response.pdf|title=Freedom of Information Act request 370916, response 921879|last=King's College London|first=|authorlink=King's College London|date=Jan 17, 2017|website=|archive-url=|archive-date=|url-status=|access-date=}}</ref> However, controversial researcher Sir [[Simon Wessely]], who is employed by King's College has repeatedly identified himself as the victim of harassment, abuse and even death threats in a number of news articles.

==Online presence==
*PubMed
*Twitter
*Facebook
*[http://www.kcl.ac.uk Website]
*YouTube

==ME/CFS website==

Kings was the UK’s biggest promoter of the biopsychosocial approach to CFS. From 2006-2021 it ran a multi-page website which gave an insight into the model. An archive of the website can still be found [https://web.archive.org/web/20110811080536/http://www.kcl.ac.uk/projects/cfs]

Their unit website said:

"The Persistent Physical Symptoms Research and Treatment Unit [&] is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS, sometimes known as ‘ME’).
The unit is a partnership between King's College London, South London and Maudsley NHS Trust and NIHR Biomedical Research Centre."

& until 2022 stated that:

"Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases. "

[https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1]

In response to the 2021 NICE guidelines update, the website was changed and service became targeted towards “fatigue, pain, irritable bowel symptoms and non-cardiac chest pain“ with Chronic Fatigue Syndrome notably largely removed and chronic fatigue put in its place. An assertion that “Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME” still remains:

https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

although it is absent from their other website https://slam.nhs.uk/service-detail/service/persistent-physical-symptoms-research-and-treatment-unit-278

[[David Tuller]] covered this transition & Dr [Charles Shepherd’s]] letter to the service following the NICE update, in his blog:
https://www.virology.ws/2022/08/09/trial-by-error-kings-college-london-still-promoting-discredited-cbt-get-deconditioning-paradigm/

==Further links==
*Wikipedia
*[http://www.kcl.ac.uk Institution]

==References==
{{Reflist}}

[[Category:Universities]]
[[Category:British universities]]

King's College London

2022-08-29T12:30:21Z

Violet202:/* ME/CFS website */ detail added

'''King's College London''' is one of the oldest universities in the [[United Kingdom]].<ref name="history">{{Cite web|url=https://www.kcl.ac.uk/aboutkings/history/overview.aspx|title=About Us - History|last=King's College London|first=|authorlink=|date=|website=www.kcl.ac.uk|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> Several other notable institutions have merged with King's College over the years, including '''Guy's, King's and St Thomas's School of Medicine''', and '''The Institute of Psychiatry.'''<ref name="history" />

==Notable people==

[[Florence Nightingale]] is one of King's most notable historical people.

==History ==

==ME/CFS Researchers ==

* [[Simon Wessely]]
* [[Alicia Deale]]
* [[Trudie Chalder]]
* [[Rona Moss-Morris]]

== Freedom of Information Act requests ==
King's College London refused to provide information requested about "substantiated claims of harassment of allegations of threats" to staff under the Freedom of Information Act, claiming this information was exempt from disclosure on the grounds that it may identify individuals.<ref>{{Cite web|url=https://www.whatdotheyknow.com/request/370916/response/921879/attach/3/F366.16%20Response.pdf|title=Freedom of Information Act request 370916, response 921879|last=King's College London|first=|authorlink=King's College London|date=Jan 17, 2017|website=|archive-url=|archive-date=|url-status=|access-date=}}</ref> However, controversial researcher Sir [[Simon Wessely]], who is employed by King's College has repeatedly identified himself as the victim of harassment, abuse and even death threats in a number of news articles.

==Online presence==
*PubMed
*Twitter
*Facebook
*[http://www.kcl.ac.uk Website]
*YouTube

==ME/CFS website==

Kings was the UK’s biggest promoter of the biopsychosocial approach to CFS. From 2006-2021 it ran a multi-page website which gave an insight into the model. An archive of the website can still be found [https://web.archive.org/web/20110811080536/http://www.kcl.ac.uk/projects/cfs]

Their unit website said:

"The Persistent Physical Symptoms Research and Treatment Unit [&] is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS, sometimes known as ‘ME’).
The unit is a partnership between King's College London, South London and Maudsley NHS Trust and NIHR Biomedical Research Centre."

& until 2022 stated that:

"Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases. "

[https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1]

In response to the 2021 NICE guidelines update, the website was changed and service became targeted towards “fatigue, pain, irritable bowel symptoms and non-cardiac chest pain“ with Chronic Fatigue Syndrome notably largely removed and chronic fatigue put in its place. An assertion that “Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME” still remains:

https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

although is absent from their other website https://slam.nhs.uk/service-detail/service/persistent-physical-symptoms-research-and-treatment-unit-278

[[David Tuller]] covered this transition & [Dr Charles Shepherd’s]] letter to the service following the NICE update, in his blog:
https://www.virology.ws/2022/08/09/trial-by-error-kings-college-london-still-promoting-discredited-cbt-get-deconditioning-paradigm/

==Further links==
*Wikipedia
*[http://www.kcl.ac.uk Institution]

==References==
{{Reflist}}

[[Category:Universities]]
[[Category:British universities]]

King's College London

2022-08-29T12:22:05Z

Violet202:/* ME/CFS website */ minor ammendment

'''King's College London''' is one of the oldest universities in the [[United Kingdom]].<ref name="history">{{Cite web|url=https://www.kcl.ac.uk/aboutkings/history/overview.aspx|title=About Us - History|last=King's College London|first=|authorlink=|date=|website=www.kcl.ac.uk|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> Several other notable institutions have merged with King's College over the years, including '''Guy's, King's and St Thomas's School of Medicine''', and '''The Institute of Psychiatry.'''<ref name="history" />

==Notable people==

[[Florence Nightingale]] is one of King's most notable historical people.

==History ==

==ME/CFS Researchers ==

* [[Simon Wessely]]
* [[Alicia Deale]]
* [[Trudie Chalder]]
* [[Rona Moss-Morris]]

== Freedom of Information Act requests ==
King's College London refused to provide information requested about "substantiated claims of harassment of allegations of threats" to staff under the Freedom of Information Act, claiming this information was exempt from disclosure on the grounds that it may identify individuals.<ref>{{Cite web|url=https://www.whatdotheyknow.com/request/370916/response/921879/attach/3/F366.16%20Response.pdf|title=Freedom of Information Act request 370916, response 921879|last=King's College London|first=|authorlink=King's College London|date=Jan 17, 2017|website=|archive-url=|archive-date=|url-status=|access-date=}}</ref> However, controversial researcher Sir [[Simon Wessely]], who is employed by King's College has repeatedly identified himself as the victim of harassment, abuse and even death threats in a number of news articles.

==Online presence==
*PubMed
*Twitter
*Facebook
*[http://www.kcl.ac.uk Website]
*YouTube

==ME/CFS website==

Kings was the UK’s biggest promoter of the biopsychosocial approach to CFS. From 2006-2021 it ran a multi-page website which gave an insight into the model. An archive of the website can still be found [https://web.archive.org/web/20110811080536/http://www.kcl.ac.uk/projects/cfs]

Their unit website said:

"The Persistent Physical Symptoms Research and Treatment Unit [&] is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS, sometimes known as ‘ME’).
The unit is a partnership between King's College London, South London and Maudsley NHS Trust and NIHR Biomedical Research Centre."

& until 2022 stated that:

"Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases. "

[https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1]

Presumably in response to the 2021 NICE guidelines update, the website was changed and service became targeted towards “fatigue, pain, irritable bowel symptoms and non-cardiac chest pain“ with Chronic Fatigue Syndrome notably largely removed and chronic fatigue put in its place. An assertion that “Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME” still remains:

https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

==Further links==
*Wikipedia
*[http://www.kcl.ac.uk Institution]

==References==
{{Reflist}}

[[Category:Universities]]
[[Category:British universities]]

King's College London

2022-08-29T12:19:52Z

Violet202:/* ME/CFS website */ punctuation

'''King's College London''' is one of the oldest universities in the [[United Kingdom]].<ref name="history">{{Cite web|url=https://www.kcl.ac.uk/aboutkings/history/overview.aspx|title=About Us - History|last=King's College London|first=|authorlink=|date=|website=www.kcl.ac.uk|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> Several other notable institutions have merged with King's College over the years, including '''Guy's, King's and St Thomas's School of Medicine''', and '''The Institute of Psychiatry.'''<ref name="history" />

==Notable people==

[[Florence Nightingale]] is one of King's most notable historical people.

==History ==

==ME/CFS Researchers ==

* [[Simon Wessely]]
* [[Alicia Deale]]
* [[Trudie Chalder]]
* [[Rona Moss-Morris]]

== Freedom of Information Act requests ==
King's College London refused to provide information requested about "substantiated claims of harassment of allegations of threats" to staff under the Freedom of Information Act, claiming this information was exempt from disclosure on the grounds that it may identify individuals.<ref>{{Cite web|url=https://www.whatdotheyknow.com/request/370916/response/921879/attach/3/F366.16%20Response.pdf|title=Freedom of Information Act request 370916, response 921879|last=King's College London|first=|authorlink=King's College London|date=Jan 17, 2017|website=|archive-url=|archive-date=|url-status=|access-date=}}</ref> However, controversial researcher Sir [[Simon Wessely]], who is employed by King's College has repeatedly identified himself as the victim of harassment, abuse and even death threats in a number of news articles.

==Online presence==
*PubMed
*Twitter
*Facebook
*[http://www.kcl.ac.uk Website]
*YouTube

==ME/CFS website==

Kings was the UK’s biggest promoter of the biopsychosocial approach to CFS. From 2006-2021 it ran a multi-page website which gave an insight into the model. an archive of the website can still be found [https://web.archive.org/web/20110811080536/http://www.kcl.ac.uk/projects/cfs]

Their unit website said:

"The Persistent Physical Symptoms Research and Treatment Unit [&] is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS, sometimes known as ‘ME’).
The unit is a partnership between King's College London, South London and Maudsley NHS Trust and NIHR Biomedical Research Centre."

& until 2022 stated that:

"Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases. "

[https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1]

Presumably in response to the 2021 NICE guidelines update, the website was changed and service became targeted to, with Chronic Fatigue Syndrome notably largely removed and chronic fatigue put in its place. An assertion that “Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME” still remains:

https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

==Further links==
*Wikipedia
*[http://www.kcl.ac.uk Institution]

==References==
{{Reflist}}

[[Category:Universities]]
[[Category:British universities]]

King's College London

2022-08-29T12:18:44Z

Violet202:Tidied

'''King's College London''' is one of the oldest universities in the [[United Kingdom]].<ref name="history">{{Cite web|url=https://www.kcl.ac.uk/aboutkings/history/overview.aspx|title=About Us - History|last=King's College London|first=|authorlink=|date=|website=www.kcl.ac.uk|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> Several other notable institutions have merged with King's College over the years, including '''Guy's, King's and St Thomas's School of Medicine''', and '''The Institute of Psychiatry.'''<ref name="history" />

==Notable people==

[[Florence Nightingale]] is one of King's most notable historical people.

==History ==

==ME/CFS Researchers ==

* [[Simon Wessely]]
* [[Alicia Deale]]
* [[Trudie Chalder]]
* [[Rona Moss-Morris]]

== Freedom of Information Act requests ==
King's College London refused to provide information requested about "substantiated claims of harassment of allegations of threats" to staff under the Freedom of Information Act, claiming this information was exempt from disclosure on the grounds that it may identify individuals.<ref>{{Cite web|url=https://www.whatdotheyknow.com/request/370916/response/921879/attach/3/F366.16%20Response.pdf|title=Freedom of Information Act request 370916, response 921879|last=King's College London|first=|authorlink=King's College London|date=Jan 17, 2017|website=|archive-url=|archive-date=|url-status=|access-date=}}</ref> However, controversial researcher Sir [[Simon Wessely]], who is employed by King's College has repeatedly identified himself as the victim of harassment, abuse and even death threats in a number of news articles.

==Online presence==
*PubMed
*Twitter
*Facebook
*[http://www.kcl.ac.uk Website]
*YouTube

==ME/CFS website==

Kings was the UK’s biggest promoter of the biopsychosocial approach to CFS. From 2006-2021 it ran a multi-page website which gave an insight into the model. an archive of the website can still be found [https://web.archive.org/web/20110811080536/http://www.kcl.ac.uk/projects/cfs]

Their unit website said:

"The Persistent Physical Symptoms Research and Treatment Unit [&] is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS, sometimes known as ‘ME’).
The unit is a partnership between King's College London, South London and Maudsley NHS Trust and NIHR Biomedical Research Centre."

& until 2022 stated that:

"Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases. "

[https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1]

Presumably in response to the 2021 NICE guidelines update, the website was changed and service became targeted to, with Chronic Fatigue Syndrome notably largely removed and chronic fatigue put in its place. Although an assertion that “Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME” still remains:

https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

==Further links==
*Wikipedia
*[http://www.kcl.ac.uk Institution]

==References==
{{Reflist}}

[[Category:Universities]]
[[Category:British universities]]

King's College London

2022-08-29T12:16:45Z

Violet202:Detail added

'''King's College London''' is one of the oldest universities in the [[United Kingdom]].<ref name="history">{{Cite web|url=https://www.kcl.ac.uk/aboutkings/history/overview.aspx|title=About Us - History|last=King's College London|first=|authorlink=|date=|website=www.kcl.ac.uk|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> Several other notable institutions have merged with King's College over the years, including '''Guy's, King's and St Thomas's School of Medicine''', and '''The Institute of Psychiatry.'''<ref name="history" />

==Notable people==

[[Florence Nightingale]] is one of King's most notable historical people.

==History ==

==ME/CFS Researchers ==

* [[Simon Wessely]]
* [[Alicia Deale]]
* [[Trudie Chalder]]
* [[Rona Moss-Morris]]

== Freedom of Information Act requests ==
King's College London refused to provide information requested about "substantiated claims of harassment of allegations of threats" to staff under the Freedom of Information Act, claiming this information was exempt from disclosure on the grounds that it may identify individuals.<ref>{{Cite web|url=https://www.whatdotheyknow.com/request/370916/response/921879/attach/3/F366.16%20Response.pdf|title=Freedom of Information Act request 370916, response 921879|last=King's College London|first=|authorlink=King's College London|date=Jan 17, 2017|website=|archive-url=|archive-date=|url-status=|access-date=}}</ref> However, controversial researcher Sir [[Simon Wessely]], who is employed by King's College has repeatedly identified himself as the victim of harassment, abuse and even death threats in a number of news articles.

==Online presence==
*PubMed
*Twitter
*Facebook
*[http://www.kcl.ac.uk Website]
*YouTube

==ME/CFS website==

Kings was the UK’s biggest promoter of the biopsychosocial approach to CFS. From 2006-2021 it ran a multi-page website which gave an insight into the model (webarchive can be found here: https://web.archive.org/web/20110811080536/http://www.kcl.ac.uk/projects/cfs

Their unit website said:

"The Persistent Physical Symptoms Research and Treatment Unit [&] is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS, sometimes known as ‘ME’).
The unit is a partnership between King's College London, South London and Maudsley NHS Trust and NIHR Biomedical Research Centre."

& until 2022 stated that:

"Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases. "

[https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1]

Presumably in response to the 2021 NICE guidelines update, the website was changed and service became targeted to, with Chronic Fatigue Syndrome notably largely removed and chronic fatigue put in its place. Although an assertion that “Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME” still remains:

https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

==Further links==
*Wikipedia
*[http://www.kcl.ac.uk Institution]

==References==
{{Reflist}}

[[Category:Universities]]
[[Category:British universities]]

King's College London

2022-08-29T12:12:25Z

Violet202:/* ME/CFS website */ info added

'''King's College London''' is one of the oldest universities in the [[United Kingdom]].<ref name="history">{{Cite web|url=https://www.kcl.ac.uk/aboutkings/history/overview.aspx|title=About Us - History|last=King's College London|first=|authorlink=|date=|website=www.kcl.ac.uk|archive-url=|archive-date=|url-status=|access-date=2019-02-21}}</ref> Several other notable institutions have merged with King's College over the years, including '''Guy's, King's and St Thomas's School of Medicine''', and '''The Institute of Psychiatry.'''<ref name="history" />

==Notable people==

[[Florence Nightingale]] is one of King's most notable historical people.

==History ==

==ME/CFS Researchers ==

* [[Simon Wessely]]
* [[Alicia Deale]]
* [[Trudie Chalder]]
* [[Rona Moss-Morris]]

== Freedom of Information Act requests ==
King's College London refused to provide information requested about "substantiated claims of harassment of allegations of threats" to staff under the Freedom of Information Act, claiming this information was exempt from disclosure on the grounds that it may identify individuals.<ref>{{Cite web|url=https://www.whatdotheyknow.com/request/370916/response/921879/attach/3/F366.16%20Response.pdf|title=Freedom of Information Act request 370916, response 921879|last=King's College London|first=|authorlink=King's College London|date=Jan 17, 2017|website=|archive-url=|archive-date=|url-status=|access-date=}}</ref> However, controversial researcher Sir [[Simon Wessely]], who is employed by King's College has repeatedly identified himself as the victim of harassment, abuse and even death threats in a number of news articles.

==Online presence==
*PubMed
*Twitter
*Facebook
*[http://www.kcl.ac.uk Website]
*YouTube

==ME/CFS website==

Kings was the UK’s biggest promoter of the biopsychosocial approach to CFS. From 2006-2021 it ran a multi-page website which gave an insight into the model (webarchive can be found here: https://web.archive.org/web/20110811080536/http://www.kcl.ac.uk/projects/cfs

Their unit website said:

"The Persistent Physical Symptoms Research and Treatment Unit [&] is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS, sometimes known as ‘ME’).
The unit is a partnership between King's College London, South London and Maudsley NHS Trust and NIHR Biomedical Research Centre."

& until 2022 stated that:

"Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases. "

[https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1]

Presumably in response to the 2021 NICE guidelines update, the website was changed and service became targeted to, with Chronic Fatigue Syndrome notably largely removed and chronic fatigue put in its place. Although an assertion that still remains

https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

==Further links==
*Wikipedia
*[http://www.kcl.ac.uk Institution]

==References==
{{Reflist}}

[[Category:Universities]]
[[Category:British universities]]

King's College London

2022-08-29T11:55:35Z

Violet202:/* ME/CFS Researchers */ added name

King's College London

2022-08-29T11:54:30Z

Violet202:/* ME/CFS Researchers */ added name

King's College London

2022-08-09T22:35:19Z

Violet202:/* ME/CFS website */ detail

King's College London

2022-08-09T22:33:26Z

Violet202:/* ME/CFS website */ punctuation

King's College London

2022-08-09T22:32:22Z

Violet202:Correction

King's College London

2022-08-09T22:30:06Z

Violet202:/* ME/CFS website */ corrected

King's College London

2022-08-09T22:28:18Z

Violet202:/* ME/CFS website */ addee info

King's College London

2022-08-09T22:15:08Z

Violet202:/* ME/CFS website */ added link

King's College London

2022-08-09T22:11:46Z

Violet202:/* Notable people */ added section

UK CFS/ME Research Collaborative

2022-06-02T16:39:00Z

Violet202:/* Research & projects associated with the CMRC */ grammar.

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]], whilst noting some controversy over the big tent approach, was also very positive. Dr [[Charles Shepherd]] is quoted as saying it was “a very big and potentially extremely powerful tent”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Research & projects associated with the CMRC==
1) [[DecodeME]] - A Very large genetics study of 20 000 pwME costing £3.2 million. It was funded by the [[MRC]] and [[NIHR]] in 2020 and is due to complete in 2024.

2) [[ME/CFS Priority Setting Partnership]]

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T16:37:36Z

Violet202:/* Research & projects associated with the CMRC */ added detail

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]], whilst noting some controversy over the big tent approach, was also very positive. Dr [[Charles Shepherd]] is quoted as saying it was “a very big and potentially extremely powerful tent”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Research & projects associated with the CMRC==
1) [[DecodeME]] - A Very large genetics study of 20 000 pwME costing £3.2 million and funded by [[MRC]] and [[NIHR]] in 2020 and due to complete in 2024.

2) [[ME/CFS Priority Setting Partnership]]

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T16:33:43Z

Violet202:/* Research & projects associated with the CMRC */ edit

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]], whilst noting some controversy over the big tent approach, was also very positive. Dr [[Charles Shepherd]] is quoted as saying it was “a very big and potentially extremely powerful tent”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Research & projects associated with the CMRC==
1) [[DecodeME]] - A Very large genetics study funded by [[MRC]] and [[NIHR]] in 2020 and due to complete in 2024.

2) [[ME/CFS Priority Setting Partnership]]

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T16:32:52Z

Violet202:Corrected link

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]], whilst noting some controversy over the big tent approach, was also very positive. Dr [[Charles Shepherd]] is quoted as saying it was “a very big and potentially extremely powerful tent”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Research & projects associated with the CMRC==
1) [[DecodeME]] - A Very large genetics study funded by [[Medical Research council]] and [[NIHR]] in 2020 and due to complete in 2024.

2) [[ME/CFS Priority Setting Partnership]]

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T15:52:22Z

Violet202:/* Research & projects associated with the CMRC */ correction

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]], whilst noting some controversy over the big tent approach, was also very positive. Dr [[Charles Shepherd]] is quoted as saying it was “a very big and potentially extremely powerful tent”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Research & projects associated with the CMRC==
1) [[DecodeME]] - A Very large genetics study funded by [[The Medical Research council]] and [[NIHR]] in 2020 and due to complete in 2024.

2) [[ME/CFS Priority Setting Partnership]]

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T15:51:47Z

Violet202:/* Research & projects associated with the CMRC */ added detail

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]], whilst noting some controversy over the big tent approach, was also very positive. Dr [[Charles Shepherd]] is quoted as saying it was “a very big and potentially extremely powerful tent”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Research & projects associated with the CMRC==
1) [[DecodeME]] - A Very large genetics study funded by [[The Medica
Research council]] and [[NIHR]] in 2020 and due to complete in 2024.

2) [[ME/CFS Priority Setting Partnership]]

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T14:36:03Z

Violet202:/* Research & projects associated with the CMRC */ minor change

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]], whilst noting some controversy over the big tent approach, was also very positive. Dr [[Charles Shepherd]] is quoted as saying it was “a very big and potentially extremely powerful tent”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Research & projects associated with the CMRC==
1) [[DecodeME]]

2) [[ME/CFS Priority Setting Partnership]]

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T14:35:13Z

Violet202:/* Research projects associated with the CMRC */ minor change

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]], whilst noting some controversy over the big tent approach, was also very positive. Dr [[Charles Shepherd]] is quoted as saying it was “a very big and potentially extremely powerful tent”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Research & projects associated with the CMRC==
1) [[DecodeME]]
2) [[ME/CFS Priority Setting Partnership]]

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T14:34:36Z

Violet202:/* Research projects associated with the CMRC */ added line

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]], whilst noting some controversy over the big tent approach, was also very positive. Dr [[Charles Shepherd]] is quoted as saying it was “a very big and potentially extremely powerful tent”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Research projects associated with the CMRC==
1) [[DecodeME]]
2) [[ME/CFS Priority Setting Partnership]]

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T14:32:06Z

Violet202:Added section

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]], whilst noting some controversy over the big tent approach, was also very positive. Dr [[Charles Shepherd]] is quoted as saying it was “a very big and potentially extremely powerful tent”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Research projects associated with the CMRC==
1) [[DecodeME]]

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T14:25:52Z

Violet202:/* Launch & expressed hopes */ correction of link

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]], whilst noting some controversy over the big tent approach, was also very positive. Dr [[Charles Shepherd]] is quoted as saying it was “a very big and potentially extremely powerful tent”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T14:24:39Z

Violet202:/* Launch & expressed hopes */ added quote

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]], whilst noting some controversy over the big tent approach, was also very positive. [[Dr Charles Shepherd]] is quoted as saying it was “a very big and potentially extremely powerful tent”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T14:22:11Z

Violet202:/* Launch & expressed hopes */ added quote

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]] was also very positive. [[Dr Charles Shepherd]] is quoted as saying “ it as “a very big and potentially extremely powerful tent”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T14:20:45Z

Violet202:/* Launch & expressed hopes */ link added

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]] was also very positive. [[Dr Charles Shepherd]] is quoted as saying

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T14:19:50Z

Violet202:/* Launch & expressed hopes */ add section

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

A blog published by [[The ME Association]] was also very positive. [[Dr Charles Shepherd]] is quoted as saying

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T12:39:31Z

Violet202:/* Launch & expressed hopes */ correction

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T12:38:03Z

Violet202:/* Launch & expressed hopes */ minor refinement

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T12:32:04Z

Violet202:/* Launch & expressed hopes */ detail

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T12:30:17Z

Violet202:/* Launch & expressed hopes */ added details

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

The BMJ published an article with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury of [[Action for ME]] expressing great hope for the CMRC being a “step change”.

https://www.bmj.com/content/346/bmj.f2630

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T10:51:22Z

Violet202:/* Launch & expressed hopes */ added opening

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK.

[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T10:48:01Z

Violet202:/* Launch & expressed hopes */ added citation

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
[[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T10:40:56Z

Violet202:/* Launch & expressed hopes */ corrected link

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
[[ME Research UK]] in their write up of the launch stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T10:39:48Z

Violet202:/* Launch & expressed hopes */ added quote

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==
[[ME Research uk]] in their write up of the launch stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.”

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

UK CFS/ME Research Collaborative

2022-06-02T10:37:18Z

Violet202:Added section

The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==Launch & expressed hopes==

==Membership==
Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref>

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}}

==The Grand Challenge==
The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “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“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously|title=Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously?|last=|first=|authorlink=|date=2015|website=The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|page_name =CFS/ME Research Collaborative Conference}}''

==Other Activities==
*2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding]

This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference.

==Minutes==
*[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018]
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]
*[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref>
*Lars Erwig (Senior Director Discovery Medicine, [[GSK]]),
*Mark Jones ([[UCB Pharma]]),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] ([[BACME]]),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice Chair)
*[[Sonya Chowdhury]], CEO, [[Action for ME]]
*James Brodie – [[GW Pharma|GWPharma]]
*[[Mike Dalrymple]] (MRCT)
*Mark Edwards – EMIG
*[[Mark J. Edwards|Mark J Edwards]]
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - [[UCB Pharma]]
*[[Claire Kidgell]]
*[[Paul Little]], Southampton University
*[[Gabrielle Murphy]]
*[[Jen McKendrick]]
*[[Julia Newton]], Newcastle University
*[[Carmine Pariante]]
*[[Hugh Perry]], Southampton University
*[[Chris Ponting]]
*[[Charles Shepherd]], [[ME Association]]
*[[Raliza Stoyanova]]
*[[Edward Sykes]], [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*[[Des Walsh]]
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]
*[[CFS/ME Research Collaborative Conference]]

== References ==
{{Reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

Chief Medical Officer Report 2002

2022-05-18T18:55:20Z

Violet202:Fixed error

In 2002 the CFS/ME Working Group submitted its report to the UK government's then Chief Medical Officer, Sir Liam Donaldson, titled [http://www.erythos.com/gibsonenquiry/docs/cmoreport.pdf A report of the CFS/ME Working Group]. The previous Chief Medical Officer, Dr Kenneth Calman, asked the working group to submit recommendations regarding future policy direction. The working group suffered several resignations, both from professionals and from patient groups. On publication it was heralded as a [“long overdue watershed moment in the history of M.E”]<ref>[https://api.parliament.uk/historic-hansard/westminster-hall/2002/feb/06/chronic-fatigue-syndrome</ref> with great expectations for potential to transform by MPs but it did not have the expected impact on the medical establishment and care and research provision for people with M.E

Professor [[Michael Sharpe]] responded.<ref>[http://www.clinmed.rcpjournal.org/content/2/5/427.long The report of the Chief Medical Officer's CFS/ME working group: what does it say and will it help?]</ref>

Doctor [[Michael Fitzpatrick]] responded critically, referring to patients as suffering from "self-deception".<ref>[http://www.spiked-online.com/Printable/00000002D3B6.htm ME: the making of a new disease]</ref>

==Impact==
The reports publication was marked by a brief debate in parliament with key MPs from the [[All-Party Parliamentary Group on Myalgic Encephalomyelitis]] and the Labour health secretary Jaqui Smith. This debate highlighted the recognition of ME as a distressing and disabling condition and expectations around “research into all aspects of the illness”, as well as hopes for improved services and medical care.

==Key recommendations==
1. '''Research'''
A programme of research on all aspects of CFS/ME is required.

Government investment in research on CFS/ME should encompass health-services research, epidemiology, behavioural and social science, clinical research and trials, and basic science.

In particular, research is urgently needed to:

● Elucidate the aetiology and pathogenesis of CFS/ME;

● Clarify its epidemiology and natural history;

● Characterise its spectrum and/or subgroups (including age-related subgroups);

● Assess a wide range of potential therapeutic interventions including symptom- control measures;

● Define appropriate outcome measures for clinical and research purposes; and

● Investigate the effectiveness and cost-effectiveness of different models of care.
The research programme should include a mix of commissioned or directed
research alongside sufficient resource allocation for investigator-generated studies on the condition

==Committee members==

==References==
{{Reflist}}

[[Category:Reports]]
[[Category:Secondary sources]]
[[Category:Seminal works]]
3. 2002 Parliamentary debate with the health minister Jaqui Smith, on the Chief Medical Officer’s report [https://api.parliament.uk/historic-hansard/westminster-hall/2002/feb/06/chronic-fatigue-syndrome]

Chief Medical Officer Report 2002

2022-05-18T18:40:29Z

Violet202:Added reference

In 2002 the CFS/ME Working Group submitted its report to the UK government's then Chief Medical Officer, Sir Liam Donaldson, titled [http://www.erythos.com/gibsonenquiry/docs/cmoreport.pdf A report of the CFS/ME Working Group]. The previous Chief Medical Officer, Dr Kenneth Calman, asked the working group to submit recommendations regarding future policy direction. The working group suffered several resignations, both from professionals and from patient groups. On publication it was heralded as a [“long overdue watershed moment in the history of M.E”] <ref>[https://api.parliament.uk/historic-hansard/westminster-hall/2002/feb/06/chronic-fatigue-syndrome</ref> with great expectations for potential to transform by MPs but it did not have the expected impact on the medical establishment and care and research provision for people with M.E

Professor [[Michael Sharpe]] responded.<ref>[http://www.clinmed.rcpjournal.org/content/2/5/427.long The report of the Chief Medical Officer's CFS/ME working group: what does it say and will it help?]</ref>

Doctor [[Michael Fitzpatrick]] responded critically, referring to patients as suffering from "self-deception".<ref>[http://www.spiked-online.com/Printable/00000002D3B6.htm ME: the making of a new disease]</ref>

==Impact==
The reports publication was marked by a brief debate in parliament with key MPs from the [[All-Party Parliamentary Group on Myalgic Encephalomyelitis]] and the Labour health secretary Jaqui Smith. This debate highlighted the recognition of ME as a distressing and disabling condition and expectations around “research into all aspects of the illness”, as well as hopes for improved services and medical care.

==Key recommendations==
1. '''Research'''
A programme of research on all aspects of CFS/ME is required.

Government investment in research on CFS/ME should encompass health-services research, epidemiology, behavioural and social science, clinical research and trials, and basic science.

In particular, research is urgently needed to:

● Elucidate the aetiology and pathogenesis of CFS/ME;

● Clarify its epidemiology and natural history;

● Characterise its spectrum and/or subgroups (including age-related subgroups);

● Assess a wide range of potential therapeutic interventions including symptom- control measures;

● Define appropriate outcome measures for clinical and research purposes; and

● Investigate the effectiveness and cost-effectiveness of different models of care.
The research programme should include a mix of commissioned or directed
research alongside sufficient resource allocation for investigator-generated studies on the condition

==Committee members==

==References==
{{Reflist}}

[[Category:Reports]]
[[Category:Secondary sources]]
[[Category:Seminal works]]
3. 2002 Parliamentary debate with the health minister Jaqui Smith, on the Chief Medical Officer’s report [https://api.parliament.uk/historic-hansard/westminster-hall/2002/feb/06/chronic-fatigue-syndrome]

Chief Medical Officer Report 2002

2022-05-18T18:33:21Z

Violet202:/* Impact */ added section

In 2002 the CFS/ME Working Group submitted its report to the UK government's then Chief Medical Officer, Sir Liam Donaldson, titled [http://www.erythos.com/gibsonenquiry/docs/cmoreport.pdf A report of the CFS/ME Working Group]. The previous Chief Medical Officer, Dr Kenneth Calman, asked the working group to submit recommendations regarding future policy direction. The working group suffered several resignations, both from professionals and from patient groups. On publication it was heralded as a [https://api.parliament.uk/historic-hansard/westminster-hall/2002/feb/06/chronic-fatigue-syndrome “long overdue watershed moment in the history of M.E”] with great expectations for potential to transform by MPs but it did not have the expected impact on the medical establishment and care and research provision for people with M.E

Professor [[Michael Sharpe]] responded.<ref>[http://www.clinmed.rcpjournal.org/content/2/5/427.long The report of the Chief Medical Officer's CFS/ME working group: what does it say and will it help?]</ref>

Doctor [[Michael Fitzpatrick]] responded critically, referring to patients as suffering from "self-deception".<ref>[http://www.spiked-online.com/Printable/00000002D3B6.htm ME: the making of a new disease]</ref>

==Impact==
The reports publication was marked by a brief debate in parliament with key MPs from the [[All-Party Parliamentary Group on Myalgic Encephalomyelitis]] and the Labour health secretary Jaqui Smith. This debate highlighted the recognition of ME as a distressing and disabling condition and expectations around “research into all aspects of the illness”, as well as hopes for improved services and medical care.

==Key recommendations==
1. '''Research'''
A programme of research on all aspects of CFS/ME is required.

Government investment in research on CFS/ME should encompass health-services research, epidemiology, behavioural and social science, clinical research and trials, and basic science.

In particular, research is urgently needed to:

● Elucidate the aetiology and pathogenesis of CFS/ME;

● Clarify its epidemiology and natural history;

● Characterise its spectrum and/or subgroups (including age-related subgroups);

● Assess a wide range of potential therapeutic interventions including symptom- control measures;

● Define appropriate outcome measures for clinical and research purposes; and

● Investigate the effectiveness and cost-effectiveness of different models of care.
The research programme should include a mix of commissioned or directed
research alongside sufficient resource allocation for investigator-generated studies on the condition

==Committee members==

==References==
{{Reflist}}

[[Category:Reports]]
[[Category:Secondary sources]]
[[Category:Seminal works]]
3. 2002 Parliamentary debate with the health minister Jaqui Smith, on the Chief Medical Officer’s report [https://api.parliament.uk/historic-hansard/westminster-hall/2002/feb/06/chronic-fatigue-syndrome]

Chief Medical Officer Report 2002

2022-05-18T18:27:56Z

Violet202:/* key recommendations */ capitalised

In 2002 the CFS/ME Working Group submitted its report to the UK government's then Chief Medical Officer, Sir Liam Donaldson, titled [http://www.erythos.com/gibsonenquiry/docs/cmoreport.pdf A report of the CFS/ME Working Group]. The previous Chief Medical Officer, Dr Kenneth Calman, asked the working group to submit recommendations regarding future policy direction. The working group suffered several resignations, both from professionals and from patient groups. On publication it was heralded as a [https://api.parliament.uk/historic-hansard/westminster-hall/2002/feb/06/chronic-fatigue-syndrome “long overdue watershed moment in the history of M.E”] with great expectations for potential to transform by MPs but it did not have the expected impact on the medical establishment and care and research provision for people with M.E

Professor [[Michael Sharpe]] responded.<ref>[http://www.clinmed.rcpjournal.org/content/2/5/427.long The report of the Chief Medical Officer's CFS/ME working group: what does it say and will it help?]</ref>

Doctor [[Michael Fitzpatrick]] responded critically, referring to patients as suffering from "self-deception".<ref>[http://www.spiked-online.com/Printable/00000002D3B6.htm ME: the making of a new disease]</ref>

==Impact==

==Key recommendations==
1. '''Research'''
A programme of research on all aspects of CFS/ME is required.

Government investment in research on CFS/ME should encompass health-services research, epidemiology, behavioural and social science, clinical research and trials, and basic science.

In particular, research is urgently needed to:

● Elucidate the aetiology and pathogenesis of CFS/ME;

● Clarify its epidemiology and natural history;

● Characterise its spectrum and/or subgroups (including age-related subgroups);

● Assess a wide range of potential therapeutic interventions including symptom- control measures;

● Define appropriate outcome measures for clinical and research purposes; and

● Investigate the effectiveness and cost-effectiveness of different models of care.
The research programme should include a mix of commissioned or directed
research alongside sufficient resource allocation for investigator-generated studies on the condition

==Committee members==

==References==
{{Reflist}}

[[Category:Reports]]
[[Category:Secondary sources]]
[[Category:Seminal works]]
3. 2002 Parliamentary debate with the health minister Jaqui Smith, on the Chief Medical Officer’s report [https://api.parliament.uk/historic-hansard/westminster-hall/2002/feb/06/chronic-fatigue-syndrome]

Chief Medical Officer Report 2002

2022-05-18T18:26:45Z

Violet202:/* key recommendations */ refined section

In 2002 the CFS/ME Working Group submitted its report to the UK government's then Chief Medical Officer, Sir Liam Donaldson, titled [http://www.erythos.com/gibsonenquiry/docs/cmoreport.pdf A report of the CFS/ME Working Group]. The previous Chief Medical Officer, Dr Kenneth Calman, asked the working group to submit recommendations regarding future policy direction. The working group suffered several resignations, both from professionals and from patient groups. On publication it was heralded as a [https://api.parliament.uk/historic-hansard/westminster-hall/2002/feb/06/chronic-fatigue-syndrome “long overdue watershed moment in the history of M.E”] with great expectations for potential to transform by MPs but it did not have the expected impact on the medical establishment and care and research provision for people with M.E

Professor [[Michael Sharpe]] responded.<ref>[http://www.clinmed.rcpjournal.org/content/2/5/427.long The report of the Chief Medical Officer's CFS/ME working group: what does it say and will it help?]</ref>

Doctor [[Michael Fitzpatrick]] responded critically, referring to patients as suffering from "self-deception".<ref>[http://www.spiked-online.com/Printable/00000002D3B6.htm ME: the making of a new disease]</ref>

==Impact==

==key recommendations==
1. '''Research'''
A programme of research on all aspects of CFS/ME is required.

Government investment in research on CFS/ME should encompass health-services research, epidemiology, behavioural and social science, clinical research and trials, and basic science.

In particular, research is urgently needed to:

● Elucidate the aetiology and pathogenesis of CFS/ME;

● Clarify its epidemiology and natural history;

● Characterise its spectrum and/or subgroups (including age-related subgroups);

● Assess a wide range of potential therapeutic interventions including symptom- control measures;

● Define appropriate outcome measures for clinical and research purposes; and

● Investigate the effectiveness and cost-effectiveness of different models of care.
The research programme should include a mix of commissioned or directed
research alongside sufficient resource allocation for investigator-generated studies on the condition

==Committee members==

==References==
{{Reflist}}

[[Category:Reports]]
[[Category:Secondary sources]]
[[Category:Seminal works]]
3. 2002 Parliamentary debate with the health minister Jaqui Smith, on the Chief Medical Officer’s report [https://api.parliament.uk/historic-hansard/westminster-hall/2002/feb/06/chronic-fatigue-syndrome]