Friday, April 9, 2010

Comparing XMRV to HIV is a mistake

This kind of media attention is going to cause hysteria. I have already had one friend say that she cannot visit me because 'it' is apparently like HIV and she doesn't want to risk catching 'it' ..... fanbloodytastic! This media stuff is just gonna cause more isolation and condemnation for those of us who are unfortunately ill ....

I am just old enough to remember the hysteria that occurred in the very early days of HIV. This was largely due to the fact that no one initially knew how it was transmitted. All the media could say at that time was that it was a 'gay' disease, which we now know was totally wrong. The media labeling HIV a gay disease condemned all gay people and it was just awful. I remember walking to work past a factory and having 40 or so workers scream 'AIDS victim' at me, and this happened everyday. I was also spat on, had things thrown out of vehicles at me and beaten up twice and all because the media had hyped the situation up so much that everyone was terrified of gay people in general. For the record I do not have HIV.

We who have CFS DO NOT want to suffer that kind of trauma! I wish the media could be a little more responsible. Yes, there are similarities between XMRV and HIV but not in the way the general public might assume. After all these years if you say HIV some people still automatically think 'filthy dirty unnatural sex acts'. If it turns out that many of us do have XMRV we don't want to be tarred with that misinformed brush. The media need to mention exactly what the common factors between HIV and XMRV are and also talk about how one contracts the virus. As I said, I have already had one friend voice to me that she is scared to visit me in case she catches it .... This is no way to live and I do not want to feel more isolated than I already do!

I do agree that banning blood donation until ore is known is a smart thing to do, my issue is with media coverage that’s all.

What does everyone else think??


  1. Well I think it's been a double whammy for you and it's horrible you had those experiences. You must have a 'here we go again' feeling. I'm shocked at the response of your so-called friend.

    But we are nowhere near establishing that XMRV is behind CFS. I agree with the doc at the end of the clip who says he thinks this is a political decision. The Canadian authorities need to be seen to be ultra-cautious as they've had problems with blood contamination in the past. The trouble with this kind of story it does, as you say, inflame prejudice, and also makes a link between XMRV and CFS in people's minds before it has been proven to be there.

    It'll be interesting to see what other countries do.

  2. Well done to you for speaking out about this.

    Personally I have great suspicions about the links between XMRV and M.E./CFS anyway: mainly because the 'label' of M.E./CFS is a 'dustbin' diagnois anyway; its a diagnosis by exclusion and I suspect that there are all sorts of viruses, bugs, etc. etc. which lead people to have symptoms, then labelled as M.E./CFS but not necessarily related.

    With regard to HIV, I remember all the hysteria at the time and all the awful suspicion around almost anyone who wasn't hetero (i.e. gay/bi/trans). There was so much ignorance and speculation, blame and prejudice. God forbid that PWME should have to go through that too.

    As for the blood business I think Jo is right when she says that the Canadians are just trying to be ultra cautious. Actually I think that cautious is the default mode for Canadians. Nothing wrong in that --- don't want any more people infected with M.E. (if it's possible to transmit it as an infection --and even there I have my doubts) but what's important is the way the whole business is handled politically and by the media.

  3. Yes, I agree with the blood banning until people know more. But, I wouldn't want to give blood anyway- living with CFS is draining enough, nevermind having to donate blood on top of it,it would take a bloody week to recover!

    I cannot wait for the Daily Mail to get a hold of this story. They will go WILD with it! Just what they need- another story to scare people.

    You must be living with deja vu right now, I suppose. Those people were disgusting and so ignorant, and it suprises me in this day and age that HIV still gets called the 'gay disease' by some people. They need educating, but I'm sure their one brain cell wouldn't handle it.

    Now, with people comparing HIV and CFS, without going into the details why they are a little similar, some people will really misunderstand BOTH conditions. Just what we need- having to explain CFS in better detail... I need to conserve my precious energy!

    I had one 'friend' who said she wasn't going to visit me once I was diagnosed with CFS as she thought she would catch it. She made out that I was super infectious and wouldn't be able to come round as she just couldn't get ill. I told her don't worry, I don't want to catch being a bitch off her...

    Good for you on posting this. I hope I see more of this on other blogs.Do you mind if I link your post on my blog? Sorry for the big comment.

  4. Thanks for the encouragemnet and comments everyone :) Forgetful Girl, sure go ahead and make a link if you'd like to. Um .... I'm in a brain fog now so I can't get out what I want to say ... will be back later!

  5. Hi Lee, me again, yes, please send me a copy of your exercise template. You should find my email address in my profile Jo xx

  6. Hi Lee, lurking coming out of the woodworks :o)

    I also agree that a blood donation ban is a good idea. With so many unknowns related to this disorder/syndrome it seems to be the safest route to take. After all, I wouldn't want to pass CFIDS along to someone who might be in an already comprised state. However, there are to many unknowns regarding XMRV and even regarding the validity of the study, and I'm afraid that with so many "unknowns" it will cause histeria. This will certainly not make things any easier for any of us.

    Glad to see you speaking out, regarding this, and I'm so sorry that you ever had to deal with the cruelty related to the beginning (and misunderstanding) associated with HIV.

  7. Lee -

    I was very interested to read this post and hear your perspective. I have never experienced HIV first-hand (or second-hand with a loved one), so I had a totally different reaction when I first heard XMRV compared to HIV...I was thrilled! Here in the US, CFS - with its ridiculous, trivial-sounding name - is still not taken seriously. There are many medical professionals as well as general population who think it's just being tired. So, I was happy that maybe it would finally be seen as a serious and debilitating illness.

    But I can see your point. Problem is that I'm a bit naive. I would never guess that people would be so ignorant!! I am appalled by what your so-called friend said. The trouble is that we don't yet know how CFS is contracted. There is certainly an infectious component (people living in the same household as someone with CFS but not blood-related are 8 times more likely to get CFS than the general population), but it could be due to similar exposure to an infectious trigger rather than it being contagious from person to person.

    The US also made a statement that people with CFS should not donate blood when the XMRV research came out - which makes sense since CFS is also proven to have a genetic component - but I think it's interesting that the move made the TV news in Canada - nothing here except a press release from the NIH/CDC. Just more proof of how invisible CFS is in the US.

    Great discussion, Lee!


  8. I've lost count of the number of times both with CFS and Lupus I've had to explain that I'm sick but it's not contagious, and that yes you can come near me without fear of dying.
    I've had a lot of people jump to the conclusion that I have AIDS when I've mentioned Auto Immune, which is ironic because it's actually the complete opposite (immune deficiency versus over active immune system).
    And yes, I've had so called friends be cruel, heartless, thoughtless, and just plain stupid and ignorant. One of the things about being sick is learning to get rid of people, even those that have been in your life for a while, if they're not positive for you and your health. If they use up anymore of your precious energy in complaining, being passive aggressive, arguing, being ignorant, self centredness, whatever, or just plain not supporting you or understanding you then let them go. It's hard but beneficial in the long run. If they can't love you for who you are, and be there when you need them at your low points, then they sure as hell don't deserve you at your best.

    All in all though, interesting developments on the medical front. I don't ever give blood now 1. because I'm sick and nobody can tell me why, so perhaps they should figure that out first; and 2. because I need what I've got, my body's too weak to give blood. It's good to see (whatever the media are doing with the information - do they ever report anything sensibly??) that advancements are being made in the investigation of an illness that is still all too often branded as 'psychosomatic'or non-existent.