Good doggie. Thanks a bunch!
Hey!!! I'm a cat! How rude. :tongue:
Good doggie. Thanks a bunch!
In a written answer provided on 10 March, Ann Keen (the parliamentary under-secretary of state for health) replied:
"People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), are not able to donate blood until they have fully recovered. "
The reasons for this are: 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."
Julius, ay,yi,yi!!! a million apologies! Catnip and a can of sardines for you! (I have three cats, myself....no excuses...they like cockroaches and geckos...would you like one of those?)
Fascinating. We need to explore this more fully. Firstly I actually feel better when giving blood (e.g. for tests), so the first reason doesn't apply to me or many others with ME/CFS. So we are left with the second reason - causes not fully understood, precautionary measure to protect blood supply. So is the UK government saying that ME/CFS could be caused by an infection? Are they really saying that? If so how does their proposed treatment of CBT/GET square with this?
There seems to be a major contradiction here which needs to be exposed.
The BBC are taking questions for the Prime Ministerial Debate.
If enough of us ask questions about ME, perhaps we will get one through.
http://news.bbc.co.uk/1/hi/uk_politics/election_2010/8589502.stm
I asked, if they considered it to be a neurological disease, then when would they be treating it like one i.e. biomedical research and treatments, not psychological therapies like CBT & GET, which have repeatedly been shown to be of little benefit or dangerous.
I'm sure others can compose this better than I.
I feel like this move by the gov't is a really positive one, and we should let it seep in to the public psyche naturally.
The Canadian Blood Service has just announced that, as a precautionary measure against potential contamination from XMRV (the newly discovered human retrovirus), it is prohibiting the donation of blood by people who have/had ME (or CFS) (one of the diseases with which XMRV is associated - another being prostate cancer). The UK Government's current position is that people with ME can donate blood when they are 'fully recovered'. Given that (a) there is no scientific evidence that people do 'fully recover' from ME and (b) that a retrovirus (akin to HIV) can not be eradicated from the host's DNA, should this country not follow Canada's cautionary lead and ban people with ME from donating blood - without exception? How would each of the parties handle this emerging health issue if they were in power? Given that this pathogen could have the same impact (both from a health and an economic perspective) as HIV, Hep C and vCJD, should it not receive cross-party, bi-partisan attention?
They also didn't change their error stating that Mikovits found no XMRV in controls, when in fact, they found it in 3.7% of controls, which is very pertinent to blood donation.
(a) there is no scientific evidence that people do 'fully recover' from ME and (b) that a retrovirus (akin to HIV) can not be eradicated from the host's DNA,
There seems to be an intentional twisting of the facts on this point.
That doesn't seem right to me. If anything I see the opposite. Several times the author compares XMRV to AIDS (not HIV but full blown AIDS). That is not the way to downplay an issue.
Also the wording in general, such as this "And a study published last October in the prestigious journal Science suggested that XMRV was strongly associated with chronic fatigue." don't seem to be written by someone with a denialist agenda.
In the paper, researchers found that many of the 101 study subjects who suffered from the condition also had been infected with the retrovirus.Meanwhile, virtually none of the studys healthy subjects showed any trace of it in their bloodstream.... I expect the ideas is not to scare people.
Actually, that seems like an attempt to 'play up' the association between the virus and the disease, not to play it down in any way.
They've taken a good step but with no education to reach Drs. and undiagnosed patients
But if they did it now what information would they be bringing? Ethically they can't tell doctors that XMRV is the cause of CFS....not yet. Given the limited resources of the CBS, I would rather they make a push once the verdict in final on XMRV. If they do it now, they won't have the resources left when the time for the big push arrives.
I can see both sides of this. But when I look at the possibility of transmission of a virus that may cause prostate cancer, possibly other cancers and ME, I think precaution is the order of the day.
The sooner a screening test is available the better for everyone so I think some pressure is in order. Just my view.
Hey Otis,
I think they are showing precaution. Even though the link is not yet welded in place they are treating XMRV with the same seriousness they treat HIV, Hep.C, CJD, Malaria and other horrible, often oncogenic, sometimes swiftly deadly or horribly disabling entities.
This is a very big step for an as yet unproven connection. More than this would be hysteria. This is just right!
That doesn't seem right to me. If anything I see the opposite. Several times the author compares XMRV to AIDS (not HIV but full blown AIDS). That is not the way to downplay an issue.
Also the wording in general, such as this "And a study published last October in the prestigious journal Science suggested that XMRV was strongly associated with chronic fatigue." don't seem to be written by someone with a denialist agenda.
Actually, that seems like an attempt to 'play up' the association between the virus and the disease, not to play it down in any way.
But if they did it now what information would they be bringing? Ethically they can't tell doctors that XMRV is the cause of CFS....not yet. Given the limited resources of the CBS, I would rather they make a push once the verdict in final on XMRV. If they do it now, they won't have the resources left when the time for the big push arrives.
I'm writing on a cell phone (best I can do from bed most days) so I'm not elaborating very well and I'm SLOW.
Point taken on the prestige of a Science article but they do go on to point out other studies haven't confirmed a link between XMRV and CFS.
Forgive me but I didn't catch your point on the healthy controls playing up the association. I was looking at it from the message conveyed about the danger to the blood supply.
What I was getting at with education was strictly aimed at getting to more of the undiagnosed so they don't try to donate, not to push an XMRV message. Hopefully the screening questions will weed out some based on symptoms but that's the last line of defense.
Point taken on the prestige of a Science article but they do go on to point out other studies haven't confirmed a link between XMRV and CFS.
I think it's basic good protocol to mention if other studies have shown conflicting results. It would be irresponsible not to. But the author didn't give them much time.
Forgive me but I didn't catch your point on the healthy controls playing up the association
The more the virus shows up in healthy controls, the less strength the association with CFS. Hypothetically, if 68% pwc had xmrv and 50% of healthy controls had it, then the link between the disease and the virus is fairly weak. On the other hand if 0 heatlhy controls had it, then the link is very strong. So by downplaying the numbers in the healthies, you are actually emphasising the link between virus and disease.
What I was getting at with education was strictly aimed at getting to more of the undiagnosed so they don't try to donate.
This is something we could really use. It's been needed for a long time. I think articles like this and the ongoing research will finally see that happen. I don't know who's purview that would fall under however. I don't think it would be CBS.