ME Association letter to Sir Liam Donaldson, Chief Medical Officer, DoH
Dr Charles Shepherd of the ME Association (MEA)
MAY BE REPOSTED
Letter to Sir Liam Donaldson, Chief Medical Officer, Department of Health
Dear Sir Liam
ME/CFS and blood donation
You will recall that I wrote to you on 27 October 2009 following
publication of the paper in Science which contained the results of a
research study that had found evidence of XMRV infection in people with
ME/CFS.
In this letter I referred to The MEA website statement on XMRV, which
called for the current UK ban on people with ME/CFS donating blood while
being symptomatic to be extended to include anyone who had suffered from
the illness in the past but now appeared to be in remission or had
recovered. We felt this was necessary given the uncertainty over
prevalence, transmission and possible pathogenicity
of this infection.
Dr David Harper (Director General of Health Improvement and Protection)
replied on 9 November 2009 by stating that this correspondence had been
brought to the attention of the Director of the UK Blood Services Joint
Professional Advisory Committee and that the situation was to be reviewed
by the Standing Advisory Committee on Transfusion Transmitted Infections
(SACTTI), who would be producing a risk assessment for the UK Blood
Services and the Health Protection Agency. Dr Harper also stated that
The MEA concerns had been brought to the attention of the Advisory
Committee on the Safety of Blood, Tissues and Organs (SaBTO) and the
National Expert Panel on New and Emerging Infections (NEPNEI).
Relevant part of the 2009 MEA website statement >>
BLOOD DONATION AND XMRV
In relation to blood donation in the UK, current advice is that people with
ME/CFS who have symptoms, or are receiving treatment, should not donate
blood.
It would seem sensible in the short term, until we know more about
transmission and pathogenicity of XMRV, to consider extending this
restriction to people who have recovered from ME/CFS. It seems strange that
many overseas countries have not followed the UK lead on blood donation and
ME/CFS.
The MEA has written to Sir Liam Donaldson, Chief Medical Officer at the
Department of Health, regarding the possibility of XMRV being transmitted
via human blood products and the implications that this has for blood
donation.
The CFIDS Association of America has been issued with guidance from the
National Cancer Institute regarding blood donation in the US. The guidance
can be read on the CFIDS website.
We now understand, through a letter that is circulating on the internet,
that a decision to extend the ban has been made.
Letter in circulation >>
Dear Ms xxxx,
Thank you for your email of 19 July to Andrew Lansley about the xenotropic
murine leukemia virus-related virus (XMRV) and chronic fatigue syndrome/
myalgic encephalomyelitis (CFS / ME). I have been asked to reply on his
behalf.
The issue of XMRV was not specifically raised during the meeting on 20 July
with campaigners from Tainted Blood. The National Expert Panel on New and
Emerging Infections (NEPNEI) undertook a thorough assessment of the
scientific data in June 2010 and concluded that although XMRV can infect
humans, there is currently no evidence that it causes disease in humans.
NEPNEI's view is that development of a robust diagnostic tool to detect
infection accurately is a priority for further investigation of this infection.
Further work is required to investigate which human tissues are susceptible
to infection, the epidemiology of infection and whether this infection is of any public
health significance.
Both NEPNEI and the Advisory Committee on the Safety of Blood, Tissues and
Organs have considered the current evidence and have recommended that no
public health action is required at this time. However, the situation will
be monitored closely.
In the absence of any infectious cause of CFS, people with this relapsing
syndrome are currently excluded from donating blood while they feel unwell,
in order to protect their own health. The UK Blood Services will shortly be
amending its criteria to exclude such people from blood donation on a
lifetime basis, bringing them in line with the practice of not accepting
donations from people with other relapsing conditions. Whilst the purpose
of this is to protect the donor's health from any possible harmful effects from donating
blood, it will also minimise the likelihood that donations from people who
have ever suffered from CFS could enter the blood supply.
I hope this reply is helpful.
Yours sincerely,
Mary Heaton
Customer Service Centre
Department of Health
13 August 2010
We would therefore appreciate some further clarification on this important
point and the date when the UK Blood Services will be bringing this
extension into effect.
Could I also point out in relation to the opening sentence in the final
paragraph of the above letter from Mary Heaton, that whilst it is true that
the role for persisting infection in ME/CFS remains uncertain there is very
sound evidence, as is referred to in your own (2002) report into ME/CFS, to
show that a variety of infections, predominantly viral, can precipitate
this illness.
There is also evidence of reactivation of latent viral infection (eg EBV
and HHV-6) in some of these patients.
Finally, you may not be aware that a number of other countries have
followed the UK lead in banning blood donations from people with ME/CFS.
These countries include Australia, Canada and New Zealand. However, I find
it surprising that no such precautionary action has been announced, at
present, by those responsible for blood safety in America.
Yours sincerely
Dr Charles Shepherd
Hon Medical Adviser, ME Association
Member: CMO Working Group on ME/CFS (2002)
Member: MRC Expert Group on ME/CFS Research
ME Association
7 Apollo Office Court
Radclive Road
Gawcott
Bucks MK18 4DF
Website:
http://www.meassociation.org.uk