UK government admits that the blood donation ban was prompted by concerns about XMRV

[Bob]

Here's the significant quote:

8 Nov 2010

The Parliamentary Under-Secretary of State, Department of Health (Earl Howe):
My Lords, this decision by the UK blood services was prompted by a recent independent expert risk assessment of a possible link between a murine retrovirus and CFS/ME.

http://www.publications.parliament.uk/pa/ld201011/ldhansrd/text/101108-0001.htm#10110813000455

I think that this quote might be important for us in future campaigning.

Here's a transcript of the parliamentary question and answer session:
http://www.meassociation.org.uk/?p=2898
http://www.publications.parliament.uk/pa/ld201011/ldhansrd/text/101108-0001.htm#10110813000455

Here's a YouTube clip of the question and answer session, in the House of Lords, in the UK parliament:
http://www.youtube.com/watch?v=cXRjpdBLxKI


The answer given by the government minister is significant because, here, the UK government are admitting, for the first time, that the decision to ban ME patients from donating blood was "prompted" by concerns about XMRV...

This is the first time that the UK government have admitted this, as the Countess of Marr remarks. Before now, the only reason that has been given for the UK blood donation ban was a concern for the health of ME patients (a likely story) where the government compared the decision for the ban with "other relapsing conditions or neurological conditions of unknown origin."


This information has been posted before but I think that the significance of the news was overlooked in the other thread and the news is significant enough to post again, with its own thread title.

 

[Jemal]

Very weird... it's also raising further suspicions of course.
Now, I don't think they have a secret agenda. Most likely their only intent was to limit possible panic, by stating that the ban was made to protect CFS patients. Unfortunately their plan backfired.

It's certainly significant, thanks for posting.

 

[Esther12]

From the video clip it didn't seem like it was prompted by concerns about XMRV.

They're claiming that they looked at the research about XMRV, and were not concerned by it, but then co-decided to ban all those who had ever suffered from CFS anyway because they realised it's a relapsing condition.

Seems like unbelievable nonsense to me.

 

[Bob]

From the video clip it didn't seem like it was prompted by concerns about XMRV.

They're claiming that they looked at the research about XMRV, and were not concerned by it, but then co-decided to ban all those who had ever suffered from CFS anyway because they realised it's a relapsing condition.

Yes, you're right Esther, the government are fudging the issue and denying that XMRV is the real reason for the ban, but it is the first time that they have associated the ban with XMRV, albeit a very vague association that they've given... You're right to say that the minister didn't say that the reason ME patients have been banned from donating blood is because of XMRV... But he did say that the decision was 'prompted' by a possible link between ME and XMRV... It's a subtle play with words in order to escape scrutiny, but I think it might be a step in the direction of truth, and I think it's important to note the admission.

...this decision by the UK blood services was prompted by a recent independent expert risk assessment of a possible link between a murine retrovirus and CFS/ME...

http://www.publications.parliament.uk/pa/ld201011/ldhansrd/text/101108-0001.htm#10110813000455

 

[Bob]

What's also quite interesting is the reason that the UK government gives for the blood donation ban... They seem to be admitting that ME is a life-long (hence the life-long ban) "relapsing condition", and also that it is a "neurological condition of unknown origin"...
We know all this about ME already, but it's unusual to see the UK government taking action based on these facts... Usually they are busy giving funds to research based on the psychological model of ME, even though they give lip-service to it being a neurological condition.

18 Oct 2010

Caroline Lucas: To ask the Secretary of State for Health on what date his Department's decision that people with myalgic encephalomyelitis should not give blood was (a) made and (b) implemented. [16643]

Anne Milton: The UK Blood Services decision to permanently exclude from blood donation, anyone who reports that they have had Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) was made on 8 July 2010. The change to the donor selection guidelines will come into force on 1 November 2010. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.

The change to donor selection criteria is being made following a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee.

http://www.publications.parliament.uk/pa/cm201011/cmhansrd/cm101018/text/101018w0006.htm

The next question and answer demonstrates the UK government's stance towards XMRV research:

18 Oct 2010

Caroline Lucas: To ask the Secretary of State for Health with reference to the answer to the hon. Member for Stroud of 27 January 2010, Official Report, column 942W, on chronic fatigue syndrome, whether (a) the UK Blood Services and Health Protection Agency study of the prevalence of a rodent virus linked to myalgic encephalomyelitis and (b) his Department's risk assessment in respect of the study has been completed; and if he will make a statement. [16644]

Anne Milton: There has been a consistent failure of independent European and American studies to confirm the original American study that described the detection of xenotropic murine leukemia virus-related virus (XMRV), a virus related to rodent viruses, in patients with chronic fatigue syndrome, sometimes referred to as myalgic encephomyelitis. An expert subgroup of National Expert Panel for New and Emerging Infections (NEPNEI) met in May 2010, to consider all available evidence about XMRV and conduct a risk assessment. The subgroup concluded that XMRV can infect humans but there is currently no evidence that it causes human disease and that on the evidence before the group, no public health action is required at this time. Since the subgroup meeting in May there has been no new scientific evidence that would change the conclusions of the subgroup but they are keeping it under review.

The Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO), on the basis of current evidence does not recommend further measures at present but wishes to continue to monitor the situation. The NHS Blood and Transplant and Health Protection Agency study group concur with the views expressed both by NEPNEI and SaBTO but also recognise the need for further research on the prevalence of XMRV in the United Kingdom. In a recent unpublished pilot study conducted by the group a series of 540 randomly selected English blood donors were screened for XMRV and none were found to be infected.

http://www.publications.parliament.uk/pa/cm201011/cmhansrd/cm101018/text/101018w0006.htm

 

[Esther12]

I thought he meant 'prompted' as in - the reason they were looking at CFS blood donation was because of XMRV, but when they'd decided no action was needed because of that they thought they might ban CFS patients for another reason.

So the 'prompting' was only temporal, rather than related to concerns about XMRV. It just happened to get a file marked 'CFS' looked at by the blood bods and they realised it could be a replapsing condition, so anyone who has had it should be banned for life.

The thing that gets me about the claim that all relapsing conditions result in a life-time ban... it's not true is it? If you've suffered from anorexia, you are not banned for life. I don't really understand how they can get away with endlessly repeating this line.

 

[urbantravels]

Has anyone ever succeeded in finding, or getting from an official source, a list of other "relapsing conditions" that are subject to a comparable lifetime ban?

 

[Bob]

I thought he meant 'prompted' as in - the reason they were looking at CFS blood donation was because of XMRV, but when they'd decided no action was needed because of that they thought they might ban CFS patients for another reason.

So the 'prompting' was only temporal, rather than related to concerns about XMRV. It just happened to get a file marked 'CFS' looked at by the blood bods and they realised it could be a relapsing condition, so anyone who has had it should be banned for life.

Yes, you're right, but it's the first time that they have admitted any association between the ban and XMRV... So I thought it shouldn't go unnoticed, and the quote from the minister might be useful.

The thing that gets me about the claim that all relapsing conditions result in a life-time ban... it's not true is it? If you've suffered from anorexia, you are not banned for life. I don't really understand how they can get away with endlessly repeating this line.

Has anyone ever succeeded in finding, or getting from an official source, a list of other "relapsing conditions" that are subject to a comparable lifetime ban?

I don't know which other conditions are banned... Are other neurological conditions such as epilepsy banned, for example? It would be interesting to find out.

 

[Esther12]

Looks like epilepsy is okay according to the red cross:

http://www.epilepsyfoundation.org/epilepsyusa/beam.cfm

Here's the uk page with a helpline and question form - we could ask (I'm just cooking dinner, so can't now):

https://secure.blood.co.uk/c11_cant.asp

 

[Trooper]

Thanks for posting this Bob - I would have missed it.

Very interesting to see them all there while this was being discussed - I would have betted discussions like this would occur in a pretty empty chamber.

I dont have much confidence in the powers that be, so it was just words to me - I guess I should be a bit pleased that it managed to get questioned in the first place and that they are aware of XMRV.

 

[Bob]

I dont have much confidence in the powers that be, so it was just words to me - I guess I should be a bit pleased that it managed to get questioned in the first place and that they are aware of XMRV.

Hi Trooper,
Yes, I agree, it's all just meaningless words... and no action, as usual.
Bob