Invest in ME
LETTER to the
UK CHIEF MEDICAL OFFICER and
SECRETARY of STATE for HEALTH
Myalgic Encephalomyelitis and Blood Donations
12th May 2010
Dear Sir Liam,
a letter to you and other European health ministers and chief medical officers
from the European ME Alliance (EMEA) of 26th
April 2010 (1), a call was made for a Europe-wide ban on people with ME be
implemented in order to safeguard the blood supply. The chairman of EMEA has
passed on the comments from your reply to Invest in ME, and the other members of
Your comments reflect those returned to Invest in ME by the UK Secretary of
State for Health, Mr. Andy Burnham, in reply to a letter from Invest in ME of 14th
March 2010 .
As Mr Burnham’s
letter, via the Department of Health (DoH), and your reply to EMEA both seem to be using the same text from
the same template then we can assume that you and the secretary of state share
the same views on ME and blood donation.
Owing to the
recent UK general election and the uncertainty surrounding the future government
we request that you speak for the health of the citizens of the UK, which is the
remit of your position, and we hope you will be able to answer our questions and
take forward these issues to the new UK government when that is formed.
is ME Awareness Day around the world, in a month which has become ME Awareness
Month – a necessary feature of the calendar which continues to mark the untold
suffering of patients with this neurological illness which neither government
nor chief medical officer and certainly not the Medical Research Council seem
willing to end.
The reply from
the DoH did not challenge the presumption that Mrs Keen’s original comments (4)
were representative of the government. We can,
therefore, continue to assume that the government and, by implication, the Chief
Medical Officer, consider that –
are in need of proper healthcare provision which treats the disease properly
blood supplies may be compromised and contaminated by accepting blood from
people with ME as donors due to the organic nature of this disease
that an embargo on people with ME donating blood would mean that there is an
infectious agent at work which could be passed on via blood
Burnham nevertheless failed to answer the questions we put and have, in his
reply, raised more issues.
It was stated
that “Decisions over who can give blood are based on a relationship of trust
with each donor, which assumes the information they provide is honest and
What happens in the situation where the donor is not aware that they have ME –
either because it has taken so long to diagnose them, or that they have been mis-diagnosed,
or that they have not been aware that ME is an infectious illness - which your
statements now support?
It was stated
in your letter and that of Mr Burnham that “People with CFS/ME are temporarily
excluded from donating blood on the basis that the condition has been diagnosed
by an appropriately qualified clinician.”
It was stated
in your letter and that of Mr Burnham that “If a donor has any doubts about
whether they have been diagnosed with CFS/ME, with their permission the National
Blood Service (NBS) would contact their GP or specialist for further
What happens if the GP does not believe that ME exists (which, from the number
of supporters contacting us would seem to be a majority in the UK)?
What if the donor in question has not seen a GP for years due to their being no
services available for people with ME?
letter stated that ”Health professionals are free to use their clinical
judgement, and whatever guidelines they choose, for the diagnosis and treatment
of CFS/ME.” We are aware that NICE has produced a document which purports to
contain guidelines to aid diagnosis and treatment. You will no doubt
be aware that ME patients took NICE to a judicial review so appalled were they
that these guidelines lacked any analysis of the biomedical research into ME.
Does the answer from DoH thus mean that doctors really can use any
criteria that they so choose to diagnose ME?
Does this carte-blanche for doctors to use their own criteria apply
to other illnesses?
If this is so then how is it possible to diagnose ME effectively?
Should not each diagnosis be objective rather than this very
When using the Oxford criteria (which the MRC allow to be used for
the psychiatric PACE trials which they fund in favour of biomedical research)
which exclude patients with a neurological illness how can accurate diagnosis be
As the government and the WHO recognize ME as a neurological illness
(under WHO code ICD-10 G93.3) then how is it possible to use any criteria such
as is deemed appropriate by the individual doctor who may not believe that ME
Does this not show a gaping hole in government, CMO and MRC policy
in not using a standard clinical guideline for diagnosis of ME, such as the
Canadian Consensus – which Invest in ME have been promoting as the standard to
use for many years?
If doctors can use any guidelines they wish then does this not pose
a huge risk that ME patients may be missed and therefore the blood supply could
written that “UK donor selection guidelines state that people who have
previously been diagnosed with CFS/ME are able to donate
blood once they have recovered and are feeling well. There is no set timescale
for this, and no additional diagnostic tests are carried out before they can
donate blood. “
Where in the UK donor selection guidelines does it specifically
state that people previously diagnosed with “CFS/ME” are able to donate once
they have recovered?
Please can you answer our original question posed to Mr Burnham of
how one is to be defined as “recovered”?
How is it possible to determine if a person with ME has recovered
when, in your own admission, there is no diagnostic test to be carried out?
You state that no diagnostic tests are carried out before people
with ME can donate blood. How can you guarantee the blood supply has not been
contaminated if no diagnostic test is performed?
What does “feeling well” mean and how does “feeling well” affect the
contents of one’s blood?
If a person with HIV “feels well” are they then able to donate
Is this a universal description of the qualifications to donate
blood which can be applied to all health conditions?
Is it the responsibility of the person with ME to determine if they
are “recovered” or “feeling well” in order to offer their blood?
Is it really true that there is no timescale that exists for a
person with ME to “feel well” before they can donate? If so how do you cater for
the possibility of relapse with ME – something that is a common feature with ME?
In your letter you state that people with ME are temporarily
excluded from giving blood. Yet here you say that there is no set timescale.
details of the current relevant donor selection guidelines Guidelines for Blood
Transfusion Services in the UK, published by the Joint United Kingdom Blood
Transfusion Services and National Institute of Biological Standards and Control
Professional Advisory Committee (JPAC), at
is no specific mention of ME/CFS necessitating permanent deferral, even though
ME/CFS is seen as an infectious disease, probable CNS disease.
With such a poor, unscientific approach to diagnosis of ME/CFS which
you have provided how is it possible to be absolutely certain that no patient
with ME/CFS is donating blood, unaware of possible contamination?
With such an unscientific and risible approach to diagnosing
recovery which you and the DoH have shown how is it possible for patients to
accurately know if they have ME/CFS still?
The rest of the
letter from Mr Burnham concentrated on the spin promulgated by NICE and your
government in recommending use of CBT and GET – both approaches almost
unanimously rejected by the ME community, save from two charities who receive
money from the government to support government policy.
How is it possible that use of CBT and GET answer the questions
relating to the danger of infected blood from people with ME/CFS?
Will using CBT (to behave better) or GET (to exercise the viruses
out of the system) be enough to make a person with ME/CFS recover, or “feel
Where is the science that proves that CBT and GET will remove
a retrovirus from one’s body?
commented about the lack of information regarding the numbers of people
diagnosed with CFS/ME and admitted that this information is not collected
Does this not seriously undermine any policy of the government
toward ME and blood donations?
How are you able to make any sensible statement about the threat to
blood supply when you have no statistics to inform of the prevalence?
If no body is collating information on numbers of people with ME/CFS
then how is it possible to develop appropriate services for ME/CFS?
Without effective diagnostic criteria which are standardized for
diagnosing ME/CFS then such numbers would mean very little anyway.
Australia have banned blood donations. Belgium does not allow it. New
Zealand's blood banks plan to reject donors with a record of chronic fatigue
Recently the CFS Advisory Committee in USA, a Federal agency, recommended to the
US Secretary of State for Health  that donations from ME patients be banned.
background of countries banning blood donation it seems that the citizens of the
UK receive this extremely poor, ill thought-out and unscientific advice based on
standard DoH templates - which helps neither healthcare staff nor patients and
places in jeopardy the integrity of the UK blood supply.
you cannot specify a diagnostic test for ME/CFS
you cannot accurately define when a patient has recovered
you cannot provide details of the number of people with ME/CFS
you cannot provide statistics for the number of people recovered from ME/CFS
you cannot provide a medical description to describe recovery for a person with
you allow people can continue as if nothing has happened as long as they “feel
Would it not be sensible in the short term to use the same strategy which the
Chief Medical Officer used when the H1N1 influenza virus was occurring in UK,
whereby he mounted a publicity offensive to make people aware of the danger of
H1N1 and the precautions which needed to be taken?
the people of this country who receive blood transfusions not deserve the same
degree of awareness of the potential danger to their health from receiving blood
supplies from people with ME/CFS?
Our reply to
you is long and reflects the fact that the government failed to answer questions
which were put to them and that you have failed to show leadership on a subject
as serious as this.
It may well be
that a different government, or a different minister may be in place by the time
we can expect a reply to this letter.
request that the civil servants who read this letter ensure that the incoming
Secretary of State for health and the new Chief Medical Officer are made aware of this letter and
provide a reply to us.
We have also
copied this letter to the Conservative, Labour, Liberal Democrat, Scottish
Nationalist and Plaid Cymru parties.
hereby request responses from each
of these parties.
To make it
easier we have summarised our questions to you  and we would appreciate an
answer urgently as the health of millions of people in the UK could be affected.
Invest in ME International ME/CFS Conference 2010 will take place on 24th
May in Westminster. With more data and new research being presented at the
conference the case for enforcing a ban on blood donations from people with
myalgic encephalomyelitis is overwhelming.
The need for a
clear strategy of biomedical research into ME in order to provide proper
treatments based on proper science is imperative.
We urge you to use
your remaining time in office to initiate real change and support Invest in ME
in its calls for a new era in ME/CFS research,
The Chairman and Trustees of Invest in ME
Invest in ME
Registered UK Charity Nr. 1114035
PO BOX 561, Eastleigh SO50 0GQ
Awareness - Invest in ME
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