Letter to UK Secretary of State for Health
Recently Mrs Ann Keen, Under-Secretary of
State for Health, commented that people
with Myalgic Encephalomyelitis were not
able to donate blood. Invest in ME have
written the following letter to the Secretary
of State for Health, Mr Andy Burnham.
and Blood Donations
Rt Hon Andy Burnham MP
Secretary of State for Health
Department of Health
London SW1A 2NS
cc: Mrs Ann Keen MP
14th May 2010
Dear Mr. Burnham,
Recently Mrs Ann Keen (in her capacity as
Under-Secretary of State for Health) made the
following comments in relation to Myalgic
Encephalomyelitis and blood donations -
"People with myalgic encephalomyelitis
(ME), also known as chronic fatigue
syndrome (CFS), are not able to donate
blood until they have fully recovered.
The reasons for this are: first, blood
donors need to be in good health, and
people with ME/CFS often experience a
range of symptoms which could be made
worse by donating blood; and second, as
the causes of ME/CFS are not currently
fully understood, people with the
condition are deferred from donating
blood as a precautionary measure to
protect the safety of the blood supply for
Mrs Keen's comments are, we assume,
representative of the government and your
Firstly it is good that your government recognises
that people with ME are in poor health. This implies
that all people with ME are therefore in need of
proper healthcare provision which treats the disease
Secondly it is good that you and your government
recognise, by the implication from your statement,
that blood supplies may be compromised by
accepting people with ME as donors due to the
organic nature of this disease.
Thirdly it follows that an embargo on people with ME
donating blood would mean that there is an
infectious agent at work which could be passed on
There follows several questions
which lead on from this.
It seems to be crucial to use the most stringent
diagnostic criteria available for diagnosing ME (which
even NICE acknowledge as being the Canadian
Consensus Criteria). Yet your department, NICE and
the MRC do not standardise on this internationally
accepted standard for diagnosis of ME.
When you state that people with ME are not able
to donate blood are you employing the NICE
guidelines for defining patients as having ME?
If so then why does NICE proscribe serological
testing unless there is an indicative history of
If no initial indication of infection is present then
no further blood tests are performed and a
patient may receive a diagnosis of ME based on
ongoing fatigue and one other symptom such as
Why then would those patients be excluded from
As your government officially accepts ME as a
neurological illness, as described by the World
Health Organisation ICD-10 G93.3 code, and as
the issue of blood contamination from an infectious
agent demands the utmost care and attention, is it
not of absolute necessity for your government to
demand that a consistent set of up-to-date
diagnostic criteria are used as standard by all
Your department often states that the Medical
Research Council is an independent body. Yet as it is
apparent that the MRC only funds psychiatric studies
which presume that ME is a behavioural illness why
does your department refuse to comment on the
MRC's usage of the Oxford criteria for research into
ME which expressly excludes people with a
Why does your department not criticise the MRC for
funding purely psychiatric research into ME if you
fully recognise that ME is a disease of organic and
Since when did a psychiatric illness prevent blood
donations? Does this not clearly show the MRC policy
of research into ME for the last generation to be
completely flawed and a waste of precious funding
and patients' lives?
When you state that people with ME are not able
to donate until fully recovered please can you
define what "fully recovered" means?
Could you also provide a description of how a person
with ME is defined as no longer having ME?
What biomedical tests are available to determine
that a person with ME is "fully recovered"?
Could you inform of how and when clinicians perform
such tests in order to ensure that a person is "fully
recovered" from ME?
Bearing in mind the seriousness of a possible
contamination of blood supplies from people with ME
please could you indicate what measures are in place
to ensure that doctors do enforce testing to ensure
that people with ME are "fully recovered" and will not
therefore donate blood?
If such a test exists then presumably people with ME
who are not recovered are entitled to appropriate
benefits due to incapacity and/or disability?
As relapses are common with people with ME please
could you explain if there is any minimum period
which a person with ME needs to be "recovered" to
be able to donate blood?
Could you also provide information which your
government has on the number of people with ME in
this country, the proportion of patients who have had
ME for longer than five years and how many people
with ME have *fully recovered*?
With regard to your statement that *the causes of
ME/CFS are not currently fully understood* is it not
inherent on the Chief Medical officer of the UK to
attend the 5th Invest in ME International ME/CFS
Conference 2010 on 24th May in Westminster, as
guest of Invest in ME?
As the foremost experts on ME in the world are
presenting at the conference, along with the
Whittemore-Peterson Institute *who have recently
been involved in the discovery of the XMRV
retro-virus which has possibly huge considerations
for the blood supply of this country* would it not be
sensible for anyone who is involved in healthcare and
particularly in the treatment of people with ME to
attend this event?
Should not the government of this country also be
sending a representative to the conference given
that contamination of the blood supply by people
with ME may be occurring and that education about
the disease needs to be a pre-requisite for anyone
involved in healthcare provision for people with ME?
We would request that you provide a full and
complete answer to every single one of the
questions which we have asked in this letter
and we look forward to your reply,
The Chairman and Trustees of Invest in ME
Invest in ME
Registered UK Charity Nr. 1114035
PO BOX 561, Eastleigh SO50 0GQ
Support ME Awareness - Invest in ME