EXCHANGE OF CORRESPONDENCE BETWEEN THE ME ASSOCIATION AND THE CHIEF MEDICAL OFFICER: PROFESSOR DAME SALLY DAVIES
Resulting in the introduction of a new blood donation policy re ME/CFS as from 1 November 2010
August 16 2010
Dear Dame Sally Davies
ME/CFS and blood donation
I wrote to Sir Liam Donaldson 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 HeatonCustomer Service CentreDepartment of Health13 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 Sir Liam Donaldson's 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.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
Member: CMO Working Group on ME/CFS (2002)
Member: MRC Expert Group on ME/CFS Research
7 Apollo Office Court
Bucks MK18 4DF
REPLY RECEIVED 27 AUGUST 2010
Dear Dr Shepherd
ME/CFS and Blood Donation
Thank you for your further letter to Professor Dame Sally Davies, Chief Medical Officer (CMO) for the Department of Health, about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and blood donation. I am responding on her behalf.
As of 1st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.
The change to donor selection criteria is being made following a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC).
Director of Health Protection
Department of Health
Wellington House, 133-155 Waterloo Road, London SE1 8UG