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Media Coverage of Dr. Alters NIH paper, post stories here

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by LJS, Aug 23, 2010.

  1. Sunshine

    Sunshine Senior Member

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    Jayhawk I admire your honesty, thank you. I never believed in CFS also, although in my country at the time it was called ME when I was healthy (now in the UK it's called 'CFS/ME', which when used is simply called CFS like in America).

    I too only believed in ME when I ended up disabled by it and the rest is history. I was in denial for years and actually got a lot worse because to give in to my symptoms, (before they made me bed ridden) well by doing that I saw myself as weak and useless person. Back then I was only medium affected and could get out of the house and drive a car a short distance. So I did mini relapses frequently to prove to myself on occasion I could do things. Sort of like episodic masochism, ending up on the floor after playing squash or tennis and not being able to walk and be helped back to the car. People thought I was crazy doing that to myself. As ME progresses then one has no choice to give in to symptoms (e.g back off in a symptom flare), one is simply disabled full time, with no remission.

    I thought like this as I was never told what ME was, and the doctor told me outright it was a psychiatric problem found in school phobics and the depressed. So I couldn't become that person, and had to join a gym and get fit and go back to college full time, which of course failed. (So my doctor influenced me to have a negative view on ME, even when I had it).

    I think a lot of CFS patients hate the CFS label, and some even hate themselves (because of the views in society and from medics). Personally when I was still walking around and doing part time college it didn't matter, but when in hospital or in an ambulance then the label CFS becomes very dangerous. :( Doctors think we're making symptoms up and won't refer us to have tests as this only encourages attention seekers, like CFS patients are....apparently. This is what they think in general anyway.

    Personally, I feel it's less psychologically damaging to not tell people if you have CFS or ME and a lot of us live in the closet to avoid abuse or hostile reactions, even from friends and family. I've told one person outside my family and it took me two decades. I never accept the label in front of doctors though. They call it 'Chronic Fatigue' half the time and smile when you tell them it's actually an immune disorder that affects the brain.

    You're so right in what you say, that CFS (by logic) can never describe a serious disease and people shouldn't use the word. The problem is until the name change is official, medics just correct us so we're rather forced into a corner and have to use it.

    It actually make sense people dismiss CFS, because actually it is a silly name and plenty of people meet criteria for it, who don't have a chronic disabilty at all, (especially if doctors think chronic fatigue is also chronic fatigue syndrome). Who ever thought of the label CFS in America needs to apologise publically to people with neuro immune disease and ME for what happened by that terrible decision.

    CFS was ME (a neurological disease, circa 1969), it was the CDC's decision to end that. How ironic all these years later XMRV is found.
     
  2. serenity

    serenity Senior Member

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    thanks DannyBex - the Aussie story is very easy to read. i think we need that, short to the point articles that people can clearly understand.
     
  3. HowToEscape?

    HowToEscape? Senior Member

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    News articles in general attract the dregs of humanity. Remember the folks in high school who specialized in jeering, sneering, cutting others down and in most cases either cheating or squeaking out with a C (or the F they actually earned)? That's your internet troll.

    Pay them the same mind as a urine stain on the sidewalk.
     
  4. Recovery Soon

    Recovery Soon Senior Member

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    True. I was also assuming that John Q. Public understands what a retrovirus is, and can therefore make the logical connections when reading a news story that directly states 6.5% of healthy controls were infected, and the Blood Supply is being investigated. If you don't know what a retrovirus is then Salmonella in Eggs is much scarier.
     
  5. serenity

    serenity Senior Member

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    the public does not know what a retrovirus is. you have to say "in the same family as Aids" to get their attention i'm afraid.
    anyway i am thrilled with the media coverage, tho i realize not everyone is happy with everything being said & maybe we wanted an even bigger splash, i think this is it - the good day we've been waiting for. i am going to enjoy it! it's everywhere, all over the world. my mother emailed me this morn to say she had seen an article. sure, i'd love it if my friends were emailing not just my mom - but it's a start. i think now the ball is rolling & media will begin to cover this more & more closely. it's happening, finally!
    :)
     
  6. BEG

    BEG Senior Member

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  7. Recovery Soon

    Recovery Soon Senior Member

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    Definitely.
     
  8. urbantravels

    urbantravels disjecta membra

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    Many many thanks to LJS for compiling all the links in the first post of this thread! It's all moving so fast it's hard to keep track of.

    Don't miss Amy Dockser Marcus' follow-up in the WSJ that discusses the hold-up to the publication of the paper

    http://blogs.wsj.com/health/2010/08...onic-fatigue-syndrome-link-has-its-own-story/

    Profound gratitude, again, to Dr. Alter for saying "Enough is enough" to the endless requests that he prove every last thing about the infectiousness of the virus(es) before publishing. I don't know if a scientist of lesser stature could have put his foot down that effectively.
     
  9. Rrrr

    Rrrr Senior Member

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    i have a new hero, and his name is dr. alter!
     
  10. BEG

    BEG Senior Member

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    ditto for me
     
  11. LJS

    LJS Insert Witty Comment Here

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    Wow! Thanks for the link, updated!
     
  12. filfla4

    filfla4 Senior Member

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    Yep, I put in a comment there too about 6hrs ago....still nothing!
     
  13. Quilp

    Quilp Senior Member

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    I just cannot believe what is happening here. Must we feed off crumbs ? Have we not suffered enough ? Do these people not realise that this is bigger than M.E. ? That their spouse, their daughter, son, could be next ? Do they realise that a very real and very live time bomb could explode at any moment in any of them ? What more do they need ? This feels like a deliberate well co-ordinated blanket consensus. Has our Government sought to play down the importance by expressing their influence our Fleet Street ?
    Are they waiting for 'further clarification' ? Having they not got the courage to look at the sufferings of so many ? Should we be surprised ? I have sat thinking about this for several hours. Will such news sell papers ? What kind of society do we live in when Jordan takes centre stage on the front page of a national ? Take a closer look at this and other stories like this and come to your own conclusions of the type of society we are left to live in.

    Mark ( no regards today I am not in the mood lol )
     
  14. Otis

    Otis SeƱor Mumbler

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    I don't get it. Americans "can be" :rolleyes: very short sighted and self-centered which I thought would have led to some level of panic, people demanding tests, etc. The press, IMO, has done the general public a disservice by not explaining that 10-20 million Americans have this family of viruses (not to mention explaining they are HUMAN viruses) and we have no clue why some a sick and some aren't. Instead they've waded into the rather complex world of research studies and "conflicting" results, etc.

    Frankly I hoped that CFS would be the secondary story as the news of the prevalence of an "AIDS-like" virus hit the front pages. If the public started screaming, I had hoped, there would be pressure for a) testing b) research into the virus(es) c) research into why some get CFS and some appear to be healthy. Hopefully research will continue.
     
  15. serenity

    serenity Senior Member

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    i am so very sorry that some of you are disappointed. myself, i have said before - i want the info out but i want it broken to people gently. so for me it's a very good day as it seems to be going the way i wanted. but i am sincerely sorry some of you arent' as pleased.
    i have stated previously that i thought causing panic in the general public was dangerous & counter productive for us.
    i of course want us taken seriously, but i hope to find a balance between serious concern & panic. i didn't want to see "AIDS like virus in the blood supply coming to get you" in the media.
    i dont' want to be hunted down & beaten with sticks, personally.
    so - i just wish everyone could be as happy as i am today. if nothing happens from here i'll be very disappointed, but i dont' think that will be the case. i think this is being reported in a cautious way & i am ok with that & optimistic that we will see things start to change from here.
     
  16. SOC

    SOC Senior Member

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    Journalists are still working with press handouts and what they can find out from easy sources like...no screaming please...the CDC. I imagine very few mainstream media journalists have read either the Lombardi paper or the Lo paper. And we will never be able to forget that the cursed name is playing against us. Journalists aren't hearing that patients with neurological, endocrine, and immune system dysfunctions have these MLVs (note the missing "retro" in so many of the reports) and that people could become more impaired than HIV patients if they get a blood transfusion. BFD, they think. Some fatigued people might have a virus, ho hum. It might be in the blood supply? So what? They don't see the big story, yet, because it hasn't been handed to them on a silver platter. This is where our advocates can really shine.

    It will happen. A few journalists will dig. The story will get out. Meanwhile, researchers seem to be working their little tails off in this field now, so we're moving along nicely.
     
  17. serenity

    serenity Senior Member

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    exactly how i feel but worded better - thanks Sick of CFS.
    :)
     
  18. Quilp

    Quilp Senior Member

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    Hello serenity I think you talk a lot of sense, and your comments have given me food for thought, but I can't help wondering what if. For example what is happening to the blood supply ? Surely this is a potential source of transmission. I suppose what i'm really trying to do is to stop even just one more person becoming infected with this dreadful disease. Who's to say they will ever find a cure ( I believe they will and soon btw, but that isn't base on scientific reasoning; i don't have any :) ) and that thousands, possibly millions will go on to suffer lifelong illness involving pain and suffering they could never have imagined, not to mention the financial implications.

    Kind regards, Mark
     
  19. SOC

    SOC Senior Member

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    Ditto. I didn't expect a huge media hoopla, and as you say, Serenity, we probably don't really want hysteria (it's SO exhausting, dahling).

    I am happy. I am very happy. I LOVED how much Drs Alter and Lo seem to be behind us in the telebriefing. I'm thrilled at the MLV development since it seems to give an even stronger argument that this IS a retrovirus we're looking at, behaving like a retrovirus should (mutating) and not a contaminant. I'm so happy, I'm almost giddy! :D This is BIG stuff.

    Yeah, we didn't get a sudden, massive public understanding of our illness, but that wasn't going to happen from a research paper. Let's face it the public doesn't change its mind overnight, even in the face of overwhelming evidence. That's going to take some hard work on the part of politicians and journalists and even more hard work on the part of the researchers.

    This is a wonderful day!
     
  20. SOC

    SOC Senior Member

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    [my bolding]

    This is a big worry for me too, Mark, but I think it's something over which we have very, very little control. You can bet I'm going to be telling everyone I know NOT to get a blood transfusion if they have any choice at all in the matter.

    Nearly 7% of the blood donors used in the Lo, et al study were infected -- that's way too big a risk for my taste. Unfortunately, it's not too big a risk for the people in charge of blood supply safety. I suppose if they can't test for it, they can't keep it out of the blood supply, so they don't want to make a stink.

    "There is no train. There is no train."
     

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