Monday, March 15, 2010

Asking some crucial questions

 Invest in ME

  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.


  Myalgic Encephalomyelitis
  and Blood Donations

  Rt Hon Andy Burnham MP
  Secretary of State for Health
  Department of Health
  Richmond House
  79 Whitehall
  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
  via blood.

  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
  sleep disturbance.

  Why then would those patients be excluded from
  donating blood?

  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
  neurological illness?

  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
  infectious nature?

  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,

  Yours Sincerely,

  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
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