Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
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1] MEA/CMO statement on Blood Donation following letter to CMO.
2] Agenda MRC CFS/ME Expert Group November Research Workshop
ALL MAY BE REPOSTED
The ME Association wrote to Sir Liam Donaldson, Chief Medical Officer at the
Department of Health, in October in relation to XMRV research - in particular
the situation regarding blood donation and blood transfusion services here in
the UK.
A copy of this letter is available in the October news archive on the MEA
website: http://www.meassociation.org.uk
We have now received a reply from the CMO, with the following key points:
a.. The Standing Advisory Committee on Transfusion Transmitted Infections
(SACTTI), part of UK Blood Services, will be producing a risk assessment for
this virus.
b.. The current advice from UK Blood Services in relation to ME/CFS has been
further clarified: Individuals suffering from ME/CFS are deferred from blood
donation until their condition has resolved and they are feeling completely
well.
c.. The research has also been drawn to the attention of the secretariats for
the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO) and
the National Expert Panel on New and Emerging Infections (NEPNEI), who will
continue to monitor developments in conjunction with UK Blood Services and the
Health Protection Agency.
d.. A copy of the MEA letter and information on XMRV has also been passed to
the Professional Director of the UK Blood Services Joint Professional Advisory
Committee, along with all the UK virology and retrovirology experts who were
copied into our original correspondence.
The MEA would like to thank everyone who has been in contact with information
regarding blood donation by people with ME/CFS in other countries. We are keen
to continue building up this database and any further help here would be much
appreciated. It appears that there are very few countries who currently take
the same position, or a similar position on blood donation, to that in the UK.
XMRV research will obviously feature during discussions that will be taking
place at the Medical Research Council's Expert Group Workshop on ME/CFS next
week in Oxfordshire.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
Member of the MRC Expert Group
--------------------
From ME agenda site
Below is the text of the Agenda for the November MRC Workshop. I have posted links for this Agenda and other information provided to me by the MRC, yesterday, on the Facebook Walls of Action for M.E. and the ME Association. At the time of writing, neither organisation has published a copy of the Agenda, itself, on its main website.
Since flagging up the Agenda on Action for M.E.s Facebook site, and some ensuing comments by users of the site, the following has been added by the moderators:
http://www.facebook.com/actionforme
Sir Peter has asked Professor Holgate to ensure during the course of the two-day event that particular consideration be given to the XMRV findings and current efforts to replicate them by other researchers.
Action for M.E. MRC CFS/ME research workshop Sir Peter Spencer, CEO, Action for M.E. and other M.E. charity representatives will attend a multi-disciplinary workshop for researchers, organised by the Medical Research Council (MRC), 19-20 November.
The meeting, chaired by Professor Stephen Holgate, MRC Professor of Immunopharmacology from Southampton University, aims to encourage new research into M.E./CFS, harnessing the latest technologies and scientific thinking to develop a proper understanding of the underlying disease mechanisms.
Papers circulated include information about XMRV, the retrovirus identified in 68 out of 101 CFS patients by researchers at the Whittemore Peterson Institute in Reno, USA. Although the sample is small, the results have led to calls for greater investigation into the biology of M.E.
Sir Peter has asked Professor Holgate to ensure during the course of the two-day event that particular consideration be given to these findings and current efforts to replicate them by other researchers.
Anyone who wishes to contact Sir Peter about the workshop may do so by e-mailing consultations@afme.org.uk
Scientists participating in the MRC workshop are already due to hear short presentations on phenotyping and epidemiology, autonomic dysfunction, fatigue, sleep, pain, neuroimaging, new technologies, immune dysregulation, infection and virology.
There will be an opportunity for group discussion before delegates split up into workshops.
These will consider:
- capitalising on current issues and UK scientific strengths
- new technologies and technological platforms
- national resources eg. patient cohorts
- partnership models
- research prioritisation
- other issues.
Professor Holgate will then summarise the workshops discussions, which will indicate a way forward for future work.
-------
Text of Agenda for MRC CFS/ME Research Workshop 19-20 November 2009
ME agenda note: I am advised by Ms Parker, MRC Corporate Governance and Policy, that We are still in discussion with colleagues regarding the participants list and will respond to this part of your request in due course. I will post the list of participants when the MRC has fulfilled this oustanding part of my FOI request for information.
Also note that the timings, as set out in the document for the afternoon session of Day One, are squiffy. Rather than lose the integrity of the orignal document, I have reproduced the text as supplied in the PDF.
Further note that this is really a one day event extended over two days and interspersed with dinners and frequent stops for refreshments...all this talking by the MRC is thirsty work and they have, after all, been talking for six years now...
AGENDA in PDF format here: http://wp.me/p5foE-2mj
[MRC Logo] Medical Research Council
MRC CFS/ME Research Workshop
To be held on Thursday 19th & Friday 20th November
Location: Hethrop Park Resort (Chipping Norton, Oxfordshire OX7 5UF)
Agenda Thursday 19th November
13:00 Registration; Lunch
Tea & Coffee
____________________________________________
13:30 Welcome and Introduction by Professor Stephen Holgate
Aims of the Workshop
____________________________________________
Short Presentations:
Topic Speaker
13:45 CFS/ME phenotyping & epidemiology Dr Esther Crawley
14:00 Autonomic dysfunction Professor Julia Newton
14:45 Fatigue tbc
14:15 Sleep Professor Jim Horne
14:30 Pain Professor Maria Fitzgerald
____________________________________________
15:00 Tea & Coffee
____________________________________________
15:30 Neuropsychology Professor Gijs Bleijenberg
15:45 Neuroimaging Professor Phil Cowen*
[*Ed: Philip Cowen is Professor of Psychopharmacology and MRC Clinical Scientist at the University of Oxford. His research and clinical interests are in the biochemistry and treatment of mood disorders, and particularly the pharmacological management of resistant depression.]
16:00 New Technologies Professor Chris Ponting
16:15 Immune dysregulation/Infection Professor Tony Pinching
16:00 Virology Professor Paul Moss
____________________________________________
16:45 Tea & Coffee
____________________________________________
17:00-18:00 Group discussion
____________________________________________
19:00 Dinner
____________________________________________
Agenda Friday 20th November
09:00 Introduction brief for morning session Professor Stephen Holgate
09:15 Working group discussions
What would you like to see the field respond to?
Areas for consideration:
. capitalising on current issues and UK scientific strengths
. new technologies and technological platforms
. national resources e.g. patient cohorts
. partnership models
. other issues
______________________________________
10:45 Tea & Coffee
____________________________________________
11:00 Whole group discussion
11:45 Summing up and next steps Professor Stephen Holgate
12:00 Close
____________________________________________
AGENDA in PDF format here: http://wp.me/p5foE-2mj
2] Agenda MRC CFS/ME Expert Group November Research Workshop
ALL MAY BE REPOSTED
The ME Association wrote to Sir Liam Donaldson, Chief Medical Officer at the
Department of Health, in October in relation to XMRV research - in particular
the situation regarding blood donation and blood transfusion services here in
the UK.
A copy of this letter is available in the October news archive on the MEA
website: http://www.meassociation.org.uk
We have now received a reply from the CMO, with the following key points:
a.. The Standing Advisory Committee on Transfusion Transmitted Infections
(SACTTI), part of UK Blood Services, will be producing a risk assessment for
this virus.
b.. The current advice from UK Blood Services in relation to ME/CFS has been
further clarified: Individuals suffering from ME/CFS are deferred from blood
donation until their condition has resolved and they are feeling completely
well.
c.. The research has also been drawn to the attention of the secretariats for
the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO) and
the National Expert Panel on New and Emerging Infections (NEPNEI), who will
continue to monitor developments in conjunction with UK Blood Services and the
Health Protection Agency.
d.. A copy of the MEA letter and information on XMRV has also been passed to
the Professional Director of the UK Blood Services Joint Professional Advisory
Committee, along with all the UK virology and retrovirology experts who were
copied into our original correspondence.
The MEA would like to thank everyone who has been in contact with information
regarding blood donation by people with ME/CFS in other countries. We are keen
to continue building up this database and any further help here would be much
appreciated. It appears that there are very few countries who currently take
the same position, or a similar position on blood donation, to that in the UK.
XMRV research will obviously feature during discussions that will be taking
place at the Medical Research Council's Expert Group Workshop on ME/CFS next
week in Oxfordshire.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
Member of the MRC Expert Group
--------------------
From ME agenda site
Below is the text of the Agenda for the November MRC Workshop. I have posted links for this Agenda and other information provided to me by the MRC, yesterday, on the Facebook Walls of Action for M.E. and the ME Association. At the time of writing, neither organisation has published a copy of the Agenda, itself, on its main website.
Since flagging up the Agenda on Action for M.E.s Facebook site, and some ensuing comments by users of the site, the following has been added by the moderators:
http://www.facebook.com/actionforme
Sir Peter has asked Professor Holgate to ensure during the course of the two-day event that particular consideration be given to the XMRV findings and current efforts to replicate them by other researchers.
Action for M.E. MRC CFS/ME research workshop Sir Peter Spencer, CEO, Action for M.E. and other M.E. charity representatives will attend a multi-disciplinary workshop for researchers, organised by the Medical Research Council (MRC), 19-20 November.
The meeting, chaired by Professor Stephen Holgate, MRC Professor of Immunopharmacology from Southampton University, aims to encourage new research into M.E./CFS, harnessing the latest technologies and scientific thinking to develop a proper understanding of the underlying disease mechanisms.
Papers circulated include information about XMRV, the retrovirus identified in 68 out of 101 CFS patients by researchers at the Whittemore Peterson Institute in Reno, USA. Although the sample is small, the results have led to calls for greater investigation into the biology of M.E.
Sir Peter has asked Professor Holgate to ensure during the course of the two-day event that particular consideration be given to these findings and current efforts to replicate them by other researchers.
Anyone who wishes to contact Sir Peter about the workshop may do so by e-mailing consultations@afme.org.uk
Scientists participating in the MRC workshop are already due to hear short presentations on phenotyping and epidemiology, autonomic dysfunction, fatigue, sleep, pain, neuroimaging, new technologies, immune dysregulation, infection and virology.
There will be an opportunity for group discussion before delegates split up into workshops.
These will consider:
- capitalising on current issues and UK scientific strengths
- new technologies and technological platforms
- national resources eg. patient cohorts
- partnership models
- research prioritisation
- other issues.
Professor Holgate will then summarise the workshops discussions, which will indicate a way forward for future work.
-------
Text of Agenda for MRC CFS/ME Research Workshop 19-20 November 2009
ME agenda note: I am advised by Ms Parker, MRC Corporate Governance and Policy, that We are still in discussion with colleagues regarding the participants list and will respond to this part of your request in due course. I will post the list of participants when the MRC has fulfilled this oustanding part of my FOI request for information.
Also note that the timings, as set out in the document for the afternoon session of Day One, are squiffy. Rather than lose the integrity of the orignal document, I have reproduced the text as supplied in the PDF.
Further note that this is really a one day event extended over two days and interspersed with dinners and frequent stops for refreshments...all this talking by the MRC is thirsty work and they have, after all, been talking for six years now...
AGENDA in PDF format here: http://wp.me/p5foE-2mj
[MRC Logo] Medical Research Council
MRC CFS/ME Research Workshop
To be held on Thursday 19th & Friday 20th November
Location: Hethrop Park Resort (Chipping Norton, Oxfordshire OX7 5UF)
Agenda Thursday 19th November
13:00 Registration; Lunch
Tea & Coffee
____________________________________________
13:30 Welcome and Introduction by Professor Stephen Holgate
Aims of the Workshop
____________________________________________
Short Presentations:
Topic Speaker
13:45 CFS/ME phenotyping & epidemiology Dr Esther Crawley
14:00 Autonomic dysfunction Professor Julia Newton
14:45 Fatigue tbc
14:15 Sleep Professor Jim Horne
14:30 Pain Professor Maria Fitzgerald
____________________________________________
15:00 Tea & Coffee
____________________________________________
15:30 Neuropsychology Professor Gijs Bleijenberg
15:45 Neuroimaging Professor Phil Cowen*
[*Ed: Philip Cowen is Professor of Psychopharmacology and MRC Clinical Scientist at the University of Oxford. His research and clinical interests are in the biochemistry and treatment of mood disorders, and particularly the pharmacological management of resistant depression.]
16:00 New Technologies Professor Chris Ponting
16:15 Immune dysregulation/Infection Professor Tony Pinching
16:00 Virology Professor Paul Moss
____________________________________________
16:45 Tea & Coffee
____________________________________________
17:00-18:00 Group discussion
____________________________________________
19:00 Dinner
____________________________________________
Agenda Friday 20th November
09:00 Introduction brief for morning session Professor Stephen Holgate
09:15 Working group discussions
What would you like to see the field respond to?
Areas for consideration:
. capitalising on current issues and UK scientific strengths
. new technologies and technological platforms
. national resources e.g. patient cohorts
. partnership models
. other issues
______________________________________
10:45 Tea & Coffee
____________________________________________
11:00 Whole group discussion
11:45 Summing up and next steps Professor Stephen Holgate
12:00 Close
____________________________________________
AGENDA in PDF format here: http://wp.me/p5foE-2mj