- Messages
- 26
PLEASE HELP ESTABLISH UK ME/CFS BLOOD-DONOR BAN TRUTH.
Dear All,
PLEASE will you write some letters and let me know the response you get by emailing me at the address below and posting official responses on suitable internet fora?
Canada, Australia and New Zealand have all announced bans on ME/CFS patients giving blood in order to protect the blood supply as a direct result of retroviral infection in ME/CFS patients [1].
In the UK a similar ban will take effect from 1st November 2010 but the reasons given for this ban appear to be disingenuous and misleading. We are effectively told in the UK that the reason for the ban is to protect ME/CFS patients from the exertional effects of giving blood. This contradicts other official advice in the form of the NICE 'CFS/ME' Clinical Guideline 53, for example, which calls for patients to undertake graded exercise therapy up to aerobic level.
The NICE Guideline says nothing about the need to avoid donating blood in order to avoid setbacks. The Department of Health, Chief Medical Officer or Blood Transfusion Service are not supposed to give advice to patients that is not 'evidence-based'. So what is the basis of their advice that donating blood may be harmful to ME/CFS patients? We need to know this in writing. If they have such evidence then this contradicts NICE's advice that graded exercise is safe/helpful and we need a written explanation on this also.
Would UK ME/CFS patients and carers PLEASE therefore write (preferably on paper by Royal Mail) with such questions/concerns to the following:
- The National Blood Service
http://www.blood.co.uk/
- The Department of Health
http://www.dh.gov.uk/en/index.htm
- The Chief Medical Officer
http://www.dh.gov.uk/en/Aboutus/MinistersandDepartmentLeaders/ChiefMedicalOfficer/index.htm
- National Institute for Health & Clinical Excellence (NICE)
http://www.nice.org.uk/
- Your Member of Parliament - House of Commons (MP Finder)
http://www.parliament.uk/
Further information for your assistance is given below.
Many thanks,
Kev Short
contact@angliameaction.org.uk
London Demo / Info on ME Blood Donor Ban
http://www.notsonice4me.co.uk/index.html
BBC News on ME Blood donor Ban:
8 October 2010 Last updated at 00:21
ME patients face UK ban on donating blood
By Michelle Roberts Health reporter, BBC News
http://www.bbc.co.uk/news/health-11465723
ENDNOTES:
[1] See for example:
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome. Mikovits JA, Dean M, Silverman RH et al. Science. 2009, 326:585-589.
www.sciencemag.org/cgi/content/abstract/1179052
www.wpinstitute.org/xmrv/index.html
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome. Lombardi VC, Mikovits JA, et al. Virulence 1:5, 1-5; September/October. 2010.
www.landesbioscience.com/journals/virulence/article/12486
Detection of MLV-related virus gene sequences in blood of patients with Chronic Fatigue Syndrome and healthy blood donors. Alter & Komaroff et al, PNAS, August 2010.
Doi: 10.1073/pnas.1006901107.
www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html
Biology and pathophysiology of the new human retrovirus XMRV and its association with human disease. Alice Rusmevichientong et al. Immunol Res, 18 August 2010.
Doi: 10.1007/sI 2026-010-8165-y.
www.springerlink.com/content/w07qx0236q801q39/fulltext.pdf
MESSAGE ENDS - PLEASE REPOST WIDELY.
Dear All,
PLEASE will you write some letters and let me know the response you get by emailing me at the address below and posting official responses on suitable internet fora?
Canada, Australia and New Zealand have all announced bans on ME/CFS patients giving blood in order to protect the blood supply as a direct result of retroviral infection in ME/CFS patients [1].
In the UK a similar ban will take effect from 1st November 2010 but the reasons given for this ban appear to be disingenuous and misleading. We are effectively told in the UK that the reason for the ban is to protect ME/CFS patients from the exertional effects of giving blood. This contradicts other official advice in the form of the NICE 'CFS/ME' Clinical Guideline 53, for example, which calls for patients to undertake graded exercise therapy up to aerobic level.
The NICE Guideline says nothing about the need to avoid donating blood in order to avoid setbacks. The Department of Health, Chief Medical Officer or Blood Transfusion Service are not supposed to give advice to patients that is not 'evidence-based'. So what is the basis of their advice that donating blood may be harmful to ME/CFS patients? We need to know this in writing. If they have such evidence then this contradicts NICE's advice that graded exercise is safe/helpful and we need a written explanation on this also.
Would UK ME/CFS patients and carers PLEASE therefore write (preferably on paper by Royal Mail) with such questions/concerns to the following:
- The National Blood Service
http://www.blood.co.uk/
- The Department of Health
http://www.dh.gov.uk/en/index.htm
- The Chief Medical Officer
http://www.dh.gov.uk/en/Aboutus/MinistersandDepartmentLeaders/ChiefMedicalOfficer/index.htm
- National Institute for Health & Clinical Excellence (NICE)
http://www.nice.org.uk/
- Your Member of Parliament - House of Commons (MP Finder)
http://www.parliament.uk/
Further information for your assistance is given below.
Many thanks,
Kev Short
contact@angliameaction.org.uk
London Demo / Info on ME Blood Donor Ban
http://www.notsonice4me.co.uk/index.html
BBC News on ME Blood donor Ban:
8 October 2010 Last updated at 00:21
ME patients face UK ban on donating blood
By Michelle Roberts Health reporter, BBC News
http://www.bbc.co.uk/news/health-11465723
ENDNOTES:
[1] See for example:
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome. Mikovits JA, Dean M, Silverman RH et al. Science. 2009, 326:585-589.
www.sciencemag.org/cgi/content/abstract/1179052
www.wpinstitute.org/xmrv/index.html
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome. Lombardi VC, Mikovits JA, et al. Virulence 1:5, 1-5; September/October. 2010.
www.landesbioscience.com/journals/virulence/article/12486
Detection of MLV-related virus gene sequences in blood of patients with Chronic Fatigue Syndrome and healthy blood donors. Alter & Komaroff et al, PNAS, August 2010.
Doi: 10.1073/pnas.1006901107.
www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html
Biology and pathophysiology of the new human retrovirus XMRV and its association with human disease. Alice Rusmevichientong et al. Immunol Res, 18 August 2010.
Doi: 10.1007/sI 2026-010-8165-y.
www.springerlink.com/content/w07qx0236q801q39/fulltext.pdf
MESSAGE ENDS - PLEASE REPOST WIDELY.
