Finally!! A Positive response from the Dept. Of Health

bullybeef

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I posted the following elsewhere, and it maybe interesting reading here too:

I received a short but positive response from the DOH this morning. I wrote to them quoting the WPI's letter to McClure, the recent blood bans in other countries imposed upon pwme, and this was their short response:

Thank you for your further email of 19 April about the xenotropic murine leukaemia virus-related virus (XMRV). I have been asked to reply.

I can assure you that the Department of Health is giving serious consideration to the recent findings on XMRV. The National Expert Panel on New and Emerging Infections will shortly be considering all the available scientific data, and their risk assessment will be used to evaluate any threat to public health and to inform decisions on further research that may be required.

Yours sincerely,
So, finally, no dismissal, no contrary quotes, or negative studies. So what has changed behind the scenes? I have since emailed the panel to get their info.
 
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Well done Bullybeef, good result.

Frankly, I think it will be some time before we know the implications for the blood supply. That being the case, they need to stop messing about and bad blood donations. What's the point in putting people at risk.
 

bullybeef

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You are probably correct, Jenny. I have had many responses from the DOH regarding XMRV. I received the following email in February:

Thank you for your further email of 15 January about xenotropic murine leukaemia virus-related virus and chronic fatigue syndrome/myalgic encephalopathy (CFS /ME). I have been asked to reply.

Any new findings about emerging viruses, such as the xenotropic murine leukemia virus-related virus (XMRV), which may have implications for the safety of the UKs blood supply, are assessed through the Standing Advisory Committee on Transfusion Transmitted Infections (SACTTI) and then consideration is given by the Joint United Kingdom Blood Transfusion Services and National Institute of Biological Standards and Control Professional Advisory Committee (JPAC) and the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO).

It is worth noting that the recent paper Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome, published on 6 January 2010 in the online journal PLoS ONE, stated that there was no evidence of infection in ME sufferers. This article can be accessed on the website www.plosone.org by clicking on the link Browse all recently published articles then clicking on the link Jan 06 and scrolling down. The UK group reported the findings of a study in which DNA from the blood of 186 patients with CFS/ME was tested for XMRV. All blood samples were negative. Based on the molecular data they received, the authors conclude that they: do not share the conviction that XMRV may be a contributory factor in the pathogenesis of CFS, at least in the UK.

I hope this reply reassures you about the safety of the UKs blood supplies.
Every reply I have received don't seem to be a template email, but the most recent one definitely isn't as dismissive as earlier emails I received.
 
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The last one look like a classic politicians answer. This new one makes it look like they are relieved, even happy, to say something is going to happen.
 

paddygirl

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I just saw a letter form ESME on the WPI Facebook page. It congratulates Australia Canada and the UK for their blood bans. I'm confused, is this the old 'discourage unwell people' UK ban or a response to the XMRV threat?
 

bullybeef

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I have already emailed this new division within the DOH. Just thought I would test the water. In the email I wrote that preceded the positive response, I outlined everything that has been murky about recent studies, how the government currently defers ME patient from donating blood until the are 'fully recovered', and the communication between the WPI and McClure, showing a clear difference of opinion between what the WPI found in the Kuppeveld and Kerr's blood samples.

I wanted to makes absolutely sure that the DOH didn't have any room to dismiss or counter claim. All we really wish to know is that they are taking XMRV seriously. And a statement of admission on XMRV will hopefully cause the floodgates to open.
 

fred

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I just saw a letter form ESME on the WPI Facebook page. It congratulates Australia Canada and the UK for their blood bans. I'm confused, is this the old 'discourage unwell people' UK ban or a response to the XMRV threat?
It is the "old 'discourage unwell people' ban". I think ESME may be confusing Britain with New Zealand or may have misinterpreted the UK NHS Blood and Transfusion's latest statement about XMRV (posted in the thread below).

http://www.forums.aboutmecfs.org/sh...ban-blood-donations-from-people-with-ME/page6