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1. |
When you state that people with ME are not able to donate blood are
you and the Department of Health employing the NICE guidelines for defining patients as having
ME? |
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2. |
If
the answer to question 1 is an affirmative then why does NICE proscribe serological testing unless there is
an indicative history of infection (without which it would not be
possible to detect the XMRV virus and thus identify individuals who
may contaminate the blood supply)? |
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3. |
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? |
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4. |
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? |
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5. |
Please can you specify what is meant by temporary (“People with
CFS/ME are temporarily excluded from donating blood”) – is this for
one month, one year or more? |
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6. |
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? |
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7. |
What happens if a person with ME’s 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?
How is it possible for the National Blood Service to
be aware of the presence of ME?
How is the GP able to inform the
National Blood Service? |
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8. |
You state that ”Health professionals are free to use their clinical
judgement,
and whatever guidelines they choose, for the diagnosis and treatment
of CFS/ME.”
Does this mean that doctors really can use any criteria
that they so choose to diagnose ME? |
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9. |
If
the answer to question 8 is affirmative then how is it possible to diagnose ME effectively as
surely each diagnosis would be subjective? |
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10. |
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 exists? |
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11. |
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? |
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12. |
If
patients with ME can affect the blood supply of the donation, due to
an infectious agent at work, 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?
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13. |
What
evidence do you have that a psychiatric illness prevents blood
donations? |
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14. |
If
doctors can use any guidelines they wish then is it not a huge risk
that ME patients may be missed and therefore the blood supply could
become contaminated? |
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15. |
Does this carte-blanche for doctors to use their own criteria apply
to other illnesses? |
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16. |
Do
you not agree that the Medical Research Council policy of using the
Oxford criteria for the psychiatric PACE trials (which exclude
patients with a neurological illness) is flawed as no accurate
diagnosis can be made? |
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17. |
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? |
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18. |
Please can you answer 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? |
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19. |
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? |
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20. |
What
does “feeling well” mean and how does “feeling well” affect the
contents of one’s blood? |
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a. If
a person with HIV “feels well” are they then able to donate blood?
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b.
Is
this a universal description of the qualifications to donate blood
which can be applied to all health conditions? |
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21. |
If
clinicians do not perform diagnostic tests in order to ensure that a
person is "fully recovered" from ME then how can it be safe for a
person ”recovered” from ME to donate blood safely and what of the
risk of relapse? |
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22. |
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?
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23. |
Is
it the responsibility of the person with ME to determine if they are
“recovered” or “feeling well” in order to offer their blood? |
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a.
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? |
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b.
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
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24. |
With
such a poor 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 have shown how is it possible for patients to accurately
know if they have ME/CFS still? |
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25. |
How
does CBT and GET answer the questions relating to the danger of
infected blood from people with ME/CFS? |
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26. |
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
well”? |
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27. |
Where is the science that proves that CBT and GET effectively remove
a retrovirus from one’s body? |
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28. |
When
Canada and Australia have banned blood donations from people with/or having had ME,
and when New Zealand is considering doing
the same, 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? |
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29. |
Will you also be recommending such a ban is implemented in the UK? |
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30. |
Do
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? |
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31. |
Does
your reply not clearly show that the government and Chief Medical
Officer and Medical Research Council have completely failed patients
with ME in this country for a generation when -
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you cannot specify a diagnostic test for ME/CFS
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you cannot accurately define when a patient has recovered
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you cannot provide details of the number of people with ME/CFS
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you cannot provide statistics for the number of people recovered
from ME/CFS
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You cannot provide a medical description to describe recovery for a
person with ME
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32. |
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 organisations? |
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33. |
Do
you not agree that it is of paramount importance to standardize on
the strictest and most scientific guidelines present (the Canadian
Consensus criteria) to diagnose ME? |
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34. |
Do
you not agree that it is of great urgency that the Chief Medical
Officer be instructed to initiate a full epidemiological study on
the prevalence of ME (using the Canadian Criteria) and to document
recovery rates? |
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35. |
We
therefore request that the civil servants who read this letter
ensure that either you or your successor are made aware of this
letter and would give a reply to us. |
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36. |
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? |
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37. |
Do
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? |
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38. |
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? |
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39. |
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 the Department of Health to
send a representative to attend the conference? |
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40. |
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? |
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