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By The Countess of Mar - 7th November 2010
The Countess of Mar writes for ePolitix.com ahead of her question on the exclusion of chronic fatigue syndrome sufferers from donating blood.
Myalgic encephalomyelitis or ME/CFS has been the poorest of poor relations in medical circles for more than 20 years.
Despite being recognised by the UK Department of Health as a neurological disease and categorised as such by the World Health Organization since 1968, sufferers from this chronic, distressing disease have been labelled variously as workshy, attention-seeking and suffering psychosocial behavioural problems by some members of the medical profession, who would prefer it to be in the mental health category. To the press, it is still 'yuppie flu'.
There is now increasing scientific evidence of persistent viral infections in a large number of ME/CFS patients, though science has not yet pinned down any particular virus as being the causal factor. Those scientists who have advised that patients who have had, or are in remission from ME/CFS, should not be blood donors should be congratulated for exercising the precautionary principle.
However, the Department of Health press release, in which the ban was announced, was not so clear in its stated reason for the ban, which was to protect patients. Unsurprisingly, nobody believed that this was the sole reason, particularly in the light of recent research findings from the USA of a retrovirus, XMRV, that has been found in the blood of some ME/CFS patients.
The purpose of my question is to persuade the Department of Health to be more transparent in its dealings with the public and to ask what progress is being made with research in the UK into this disease.
Article Comments
The reasons given earlier this year for the deferral of blood donation unless ME/CFS patients felt well at the time, by the Secretary of State for Health were,
'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 patients.'
http://www.publications.parliament.uk/pa/cm200910/cmhansrd/cm100310/text/100310w0012.htm
Not all other relapsing and remitting conditions are on the banned blood donor list - why not?
What evidence does the DoH have that ME/CFS patients are at risk from GIVING blood? Surely, such advice should be evidence-based? Why impose this ban now if no new evidence about risks to the donors has emerged?
The DoH is looking somewhat silly by saying that the lifetime ban on anyone who has ver had ME/CFS is only for donor safety. If they're going to lie, they could at least credit the public with a vestige of intelligence by lying well.
Sadly, this lie has been told in order to avoid spending money on the essential and now urgent biomedical research that will protect the blood supply at least and find the real answers to treatment for ME at best that we have waited for, for decades now, at best.
We've waited long enough, suffering and dying while the media run polls inviting readers to vote on whether we have a 'real' illness and while doctors refuse to 'vaildate' our mistaken belief that we are ill by sending us for medical investigation of the many symptoms of this multi-systemic disease and while NICE suggests that we can be talked out of being ill by a course of cognitive behaviour therapy and a bit of graded excerise; steadfastly remaining blind to all the evidence that these therapies do not work and the biomedical evidence of the reasons WHY they even make a majority of ME patients worse.
Yet now, apparently, just giving a pint of our blood can bring on a relapse??? Time for some common sense.
Time for policy change NOW. Time for ACTION.
JB
9th Nov 2010 at 10:24 am
I was one of those demonstrating outside the DOH last week. Not sick myself, but there on behalf of my wonderful 24 year old son who has been ill with this terrible disease for 2-3 years now.
Thank you so much Countess for taking the discussion where it needs to be happening.
I keep hoping that the government will see beyond the short term benefits discussion (my son is not on them and will not accept them) to a point where getting the 250,000 - 1,000,000 patients well enough to work is the priority, rather than getting them off benefits. Not one of the young people I have met with this disease want to facer the rest of their shortened lives with the prospect of never being able to have a career and pay taxes. Sadly, many of the older folk I've met who have been ill for 10+ years are desparate not to lose their benefits after so many years of not being able to work.
It is very important to separate the discussion about understanding XMRV and its consequences from the politics of benefits. Is this government smart enough to be able to do that?
I truly hope so.
Jenny Martin
9th Nov 2010 at 7:11 am
To expand upon the statements made above:
The original Science paper was by the WPI, the NCI, and the renowned Cleveland Clinic, published in Oct. 2009.
The follow-up paper, which found sequences of many murine leukemia viruses in 85 per cent of patients and up to 7 per cent of 'controls' was by Lo/Alter and published in PNAS in August 2010. The authors stated it did, indeed, confirm the Science paper, even with different Retrovirus 'bits and pieces' found.
Kathryn
8th Nov 2010 at 10:32 pm
Let the truth be told.
Roisin (14 years of my life have been dead)
roisin grady
8th Nov 2010 at 7:47 pm
Thank you so much Countess of Mar, you have advocated for ME and CFS patients for over 15 years standing alone at times facing your government.
You language is strong and we around the world a greatful.
Meghan
Medical Prof. With ME/C
meghan
8th Nov 2010 at 12:53 pm
Thank you, Mar, for this, but I feel that it is a little weakly-worded and disingenuous, and thus appears to make it easy for the Dept of Health to prevaricate further.
In your penultimate paragraph, you state that 'XMRV ... has been found in the blood of some ME/CFS patients';. You missed the opportunity to mention that in fact this new virus was found in the blood of 67% of patients in the first paper published, and that since then the authors have progressed, using up to five different techniques to seek the virus, and have actually found it in 99% of their original patients.
This also answers my question about a phrase in your third paragraph - 'science has not yet pinned down any particular virus as being the causal factor.' XMRV explains everything and there is no need to postulate the need for nor presence of any other pathogen. Strict proof may be a little difficult due to the presence of many healthy carriers. But we have known this disease was caused by a retrovirus since 1985, when Dr Cheney showed his MRI scans to an expert and found they were exactly the same as scans from AIDS patients. The retrovirus was actually found in patients in 1991 by DeFreitas at the Wistar Institute but her work was dismissed, denigrated and funding withdrawn before she could take it further with the limited technology available then. The Whittemore-Peterson Institute produced an immaculate paper for Science magazine a year ago with the virus fully characterised and genome-sequenced, yet people are still putting on the brakes and producing invalid studies without using the proper WPI techniques which are needed to find this difficult little virus.
Our Dept of Health is in a bind as it doesn't want to 'own up' to covering up this virus for so long - but it's too late for them now as the cat is well out of the bag.
Laurence Swift
7th Nov 2010 at 8:28 pm
Demonstrators who met outside the DOH on the 1st November supported the imposition of the blood ban on ME sufferers.They do not wish to infect anyone else.
However they would like the DOH to treat British citizens as grown up people and admit (as has been done in Canada and Australia) that the ban was imposed because of the confirmation of the original findings of the Science paper by Alter and Lo, highly reputable US researchers, that a retrovirus can be found in 80% of ME sufferers.
Indeed some of these demonstrators had themselves tested positive for the new retrovirus.
Sufferers from ME know the seriousness of this illness. Many are housebound or wheelchair bound, sometimes for decades. The British government has never put money into biomedical research on ME or even tried to discover how many people suffer from this disease or whether there is an underlying upward trend in numbers even though this disease affects children and young people at the beginning of their working lives. The changes to the benefit sytstem are designed to further limit access to help and support for the chronically sick. However stopping benefit will do nothing to resolve the unanswered medical questions about this disease which have been irresponsibly neglected for thirty years.
C. Sellers.
7th Nov 2010 at 7:43 pm
Here is a quote from a letter posted on the blog Dancing with the Sandman. It is from Mary Heaton, Customer Service Centre, Department of Health, 13 August 2010.
'The UK Blood Services will shortly be amending its criteria to exclude such people from blood donation on a lifetime basis, bringing them in line with the practice of not accepting donations from people with other relapsing conditions. Whilst the purpose of this is to protect the donor's health from any possible harmful effects from donating blood, it will also minimise the likelihood that donations from people who have ever suffered from CFS could enter the blood supply'
http://dancingwiththesandman.blogspot.com/2010/08/uk-blood-services-set-to-ban-mecfs.html
This ban is to protect the blood supply.
LP
7th Nov 2010 at 2:20 pm
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