QUESTIONS for the UK CHIEF MEDICAL OFFICER and SECRETARY of STATE for HEALTH

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40 questions from  Invest in ME to the CMO and Secretary of State for Health

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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?


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)?


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?


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?


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?


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?


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?


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.”
9. Does this mean that doctors really can use any criteria that they so choose to diagnose ME?


10. If the answer to question 8 is affirmative then how is it possible to diagnose ME effectively as surely each diagnosis would be subjective?


11. 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?


12. 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?


13. 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?


14. What evidence do you have that a psychiatric illness prevents blood donations?


15. 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?


16. Does this carte-blanche for doctors to use their own criteria apply to other illnesses?


17. 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?


18. 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?


19. 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?


20. 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?


21. What does “feeling well” mean and how does “feeling well” affect the contents of one’s blood?


• a. If a person with HIV “feels well” are they then able to donate blood?

b. Is this a universal description of the qualifications to donate blood which can be applied to all health conditions?



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?


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?


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?
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


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?


25. How does CBT and GET answer the questions relating to the danger of infected blood from people with ME/CFS?


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”?


27. Where is the science that proves that CBT and GET effectively remove a retrovirus from one’s body?


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?


29. Will you also be recommending such a ban is implemented in the UK?


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?


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 -
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 ME


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?


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?


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?


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.


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?


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?


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?


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?


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?