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MEA/CMO on Blood Donation; Agenda MRC CFS/ME Research Workshop

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
1] MEA/CMO statement on Blood Donation following letter to CMO.

2] Agenda MRC CFS/ME Expert Group November Research Workshop


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

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:


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


Thanks for posting this up.

Regarding the Research Workshop:
Myself and a couple of friends have sent off requests that the Research Workshop be webcast or filmed and placed online. I've pasted below my copy of the letter.

To whom it may concern,

I am an ME/CFS sufferer and I recently watched with interest the recent webcast of the Chronic Fatigue Syndrome Advisory Committee Meeting held in Washington D.C on 29th-30th October 2009, especially in the light of the recent XMRV discovery. I would like to request that a similar system is used for the MRC Expert Group meeting held on the 19th-20th November or that it be filmed and the video placed on YouTube in the interests of transparency. The meeting also holds great relevance to the patient group involved. I have Cc'd Web Support in this email as I presume they have the technological know-how to make my request a reality.

I look forward to your response,

Katie Surname

I doubt it will happen, but I felt the email will at least let them know that they are being watched more than ever now, I want them to feel the weight of expectation. I hope that they feel like they need to 'catch-up' to the US but we're entrenched in a psychological mire of anti-depressants, CBT/GET, Wessely, the PACE trial and the Oxford Criteria.

I'd like to see Dr Kerr on the list to speak, hopefully on XMRV and genetics which would be fascinating, especially regarding subsets which might add a little more depth to the theories. With any luck, this will be the last ME/CFS working group, research group etc. to feature psychologists or psychiatrists.

Regarding the CMO and the Blood Banks:

Very underwhelming to be honest. Point b. states that people with ME/CFS shouldn't donate unless they are feeling completely well? Kinda missing the warning about the 'incurable' retrovirus and that there are asymptomatic carriers. They better hope that the recovered ME donors were misdiagnosed, this is completely foolhardy.

It is good that SACTTI is getting involved, but where is the information on ME/CFS going to come from? Britain's top expert Wessely? As much as we love the WPI study, I don't know how it will fare against Wessely's might. I just hope that the science will stand up to the test because if there is a threat to the blood bank in the UK (I'm talking like we're on another planet because we're so far down the psychological road) then the chance that XMRV will be taken more seriously increases and the chance that we in Britain will get recognition, tests and treatment.

Can you tell I'm quite pessimistic in general on UK-based ME/CFS matters?