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Never Ask Us if We're Hungry -- The Answer's Always No
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xmrv + , how will we be treated by ordanary folks

Discussion in 'General ME/CFS News' started by heapsreal, Aug 24, 2010.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Just a thought, i know when HIV first came out, people were very prejuduce(if thats the correct word to use) towards them and werent game to even shake hands with hiv folk in fear of catching this disease. Im wondering if the same will happen to us with xmrv/mlv. Will we be treated as lepers, instead of nut cases now.

    cheers!!!
  2. ukxmrv

    ukxmrv Senior Member

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    Heapsreal,
    That's what happened during some of the recorded outbreaks and also around the time that the last retrovirus news got into the mainstream press. It did calm down eventually.

    I'd rather be treated as a leper again, than run the risk of being ill for the rest of my life. If we can get some treatment out of this I don't care who doesn't want to shake my hand this time.
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    All depends on how transmitted.

    Tina
  4. urbantravels

    urbantravels disjecta membra

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    Awful as it is to say...I am not so worried about losing my job/profession (because I am already disabled), losing my social life (because I've already lost 95% of it and those who remain are those who have previously been exposed to me), or losing my place in society, because..well you know. I'm already mostly invisible. It's not quite the same thing as being shunned, but the upshot is kinda the same.

    Being treated like a leper would be a step up. At least lepers *get* treatment.
  5. serenity

    serenity Senior Member

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    this has been my very concern & i have voiced it a few times around here. i am very worried about the same. so, now i am waiting anxiously to see where the media take this. i think those of us who want others to be afraid (because it helps get results) will have their day. i think for now the media is being cautious & i'm glad because i'd like it dosed out to the public gradually so i dont' end up a leper. but i think the big splash is coming, & it will have it's rewards & drawbacks as well.
  6. Galena1

    Galena1

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    I think that we can anticipate that the media would go for maximum shock/horror to start with and when the dust settles a bit start publishing the reality.
  7. biophile

    biophile Places I'd rather be.

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    Yes, for rational thinkers. But for the general public, rumours and gossip often take priority and stick like mud on a blanket. Look how long it took for AIDS to lose the "gay" stigma after being called "GRID", which still hasn't disappeared even though it was one of the first things disproved nearly 30 years ago and there was a name change from GRID to AIDS as a result. So it may be a while before ME/CFS loses the neurotic stigma, especially if biopsychosocialists maintain their speculations and claims about psychological factors even when HGRV is proven to be causal. We will end up with a new disease name eg HGRV/HGRAD while "CFS" will continue to morph along the lines of psychosomatic "chronic unwellness" Reeves 2.0 and take on a life on its own like Pinoccio, this split could help us avoid a lot of the stigma of the past (at the expense of others). Throughout history the psychologisers have been proven wrong many times but lessons were rarely learnt. The curmudgeonly attitudes and hubris towards us appears to be human nature and not something that will go away but simply be redirected and redefined towards the next unfortunate "medically unexplained" illness category.
  8. Mya Symons

    Mya Symons Mya Symons

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    What if a person works for a public institution like, lets say, a college or a High School? If they find out that this virus is passed by saliva, nasal secretions and lung secretions, do you think that person could loose their job, even if they are careful? I know in the case of HIV, your status is confidential, but HIV is different in the sense it can't be passed on to the people you work with or your customers. This is a little worrisome. Truthfully, it is one of the reasons I am procrastinating on getting the test. (Besides trying to come up with the extra money.)

    This is offtopic--I was reading an article about retroviruses and how they were once involved in evolution. I fell asleep and dreamed we all mutated into superhumans. We could run faster, we were stronger, and some of us could use are minds to move things and predict the future. We were also all very good looking. It was a pretty awesome dream. Perhaps it could happen!
  9. illsince1977

    illsince1977 A shadow of my former self

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    Well said Urban Travels. Ditto for me!
  10. serenity

    serenity Senior Member

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  11. taniaaust1

    taniaaust1 Senior Member

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    i personally think yes as schools etc have a "duty of care" to their students and need to protect them from harm. AIDS cant be transmitted in teacher/student relationships.

    i started up a poll on this site ages ago to see what peoples general reactions would be to a neighbours child having a severe illness which a virus was involved in and possibly contagious.. and if you'd then allow your child to go over and play with that child. Most of us wouldnt allow it. That poll i'd posted, to try to guage what a public reaction could be to all the XMRV stuff.
    ...........

    i think most of us with canadian defined CFS may be less worried about being stigmatised as WE ALREADY ARE.. Most of us are too sick to be working (so dont have to be worried about loosing jobs .. half of us are sick enough to be on disability payments as we had no choice as we couldnt work). Many of us are shunned by families who dont understand how we cant push throu and do normal things.. (i dont think stigmatising gets much greater then when ones own families do it too). Many of us arent already part of our communities as we are too sick to be.

    We've been long stimatised as people know others with other subgroups of CFS eg the Empirial defination who may be quite capable of working other then feeling like a bit 'tired" and hence dont understand why we are so ill. The ones who werent so sick many have been happy to be put with ones with ME and probably havent protested being in the same group (but hopefully this will change now.. if those with CFS/ME are stigmatised due to XMRV, maybe others who werent protesting before about the need for the subgroups to be made separate will protest now).

    I dont know how many have gotten this.. but ive found stigmatism to be within our own communities.. this is why some branches of our communities have split off... separating the very sick from the not so sick (things like the Hummingbirds group comes to mind here.... so many of them are treated badly by ones who dont understand that sickest group). I myself have been treated like im lazy by some in CFS communities when i was very very ill..

    What is even worst.. the worst stigmatising.. has been the studies been based on Fuduka and Empiral definations.. without studies on ME. (the whole topic of stigmatism gets me going as i cant see how the CC group can be much more stigmatised then it has been)

    Its kind of weird but what may be very good for us, my be very bad for those in the other subgroups of CFS eg those who have been diagnosed via phone poll but who have never needed to see a doctor about their "tiredness".

    This shake up is great.. these groups.. ME and CFS should of NEVER been put together and grouped as one. It hasnt been fair on the ME ones and now it isnt going to be far on the empirial etc ones. The whole thing has been unfair for ALL of us.. and the CDC and Wessely is to blame by trying to make ME disappear by merging it with waste basket diagnoses which "lazy" doctors use (instead of getting off their butts and giving people more tests and truely working out what is wrong with their health! Be it overworking, chronic depression, or missed physical illnesses).
  12. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I don't think the general public understands what a retrovirus is. I have related a recent experience in another thread, but I think it bears repeating.

    I told a new mother that I was reluctant to go near her new baby because I had CFS which was probably caused by a retrovirus. She laughed, genuinely. She said she was far more concerned about the whooping cough going around.

    I wish people would stop talking about the dreadful fatigue they feel. The person in the street doesn't care about that. Most of them are tired anyway. Most of the newspaper reports I have seen in the last two days have talked about headaches and sore throats. I don't think I have seen a single reference to cognitive and processing disabilities. It would be better to talk about the neurological and immunological aspects of the disease - put these into the name too. This is all about public relations. We need every trick in the book to overturn decades of negative press.
  13. Mya Symons

    Mya Symons Mya Symons

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    I have not been tested for XMRV yet so I cannot say whether or not it applies to my or my familys' illness. Perhaps I do not have anything to worry about, including loosing my job. However, if there are people who are XMRV positive who are healthy enough to donate blood, maybe there are those who are healthy enough to work. Further, I would never judge someone with CFS because they do not work. I cannot feel what they feel. I have this illness too and have had the experience of being judged by healthy people. It sucks. However, I think this also goes the other way. Perhaps it is not a good idea to judge a persons illness as less "real" or under a different CFS definition because they do work. Again, no one can feel exactly what the other person is going through.
  14. acer2000

    acer2000 Senior Member

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    And if/when they have a vaccine. If people are vaccinated, they won't be scared, just like you and I aren't scared of getting polio or smallpox.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi rusty, yes i think it can go the other way too. Some are going to think the cfs retrovirus is just going to make us abit tired. So its going to have to be some sort of balance. I think trying to explain our symptoms is difficult and hard for people to understand, maybe people need to know that cfsers have a higher risk of cancers, seizures etc as well.

    cheers!!!
  16. taniaaust1

    taniaaust1 Senior Member

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    good point there... i forgot that those who are testing postive who arent even showing signs of sickness (yet?). (My own thought is there may be a 10-11 yr incubation like period)


    my post was meant to be taken as a whole. If taken as a whole, you can see i arent picking on any group... but yes i have suffered by the CDC doing what it has and mixing all subgroups... and yes i have been picked on by some who cant understand why i cant do as they do (it is true.. one dont come across minor CFS cases protesting, it is rare). As i said, this mix helps NONE of us.. from the Empirial defination CFS ones to the CC CFS ones. In the long run.. having all the groups mixed will never help us.

    Anything anyone experiences is real to them... when a healthy person suffers from tiredness.. that too is real to them. The comparison of the different definations are HUGE, there is completely different realities. eg the reality of an overworked run down person... to a bedridden completely cared for person. One can not say these are the same realities being experienced, thou both do have suffering.

    its like comparing a person who is sad for a day.. with a chronically depressed person who cant get themselves out of bed to go to work so ends up loosing their job. (both these situations are real to those involved but that doesnt make it the same)
  17. Daffodil

    Daffodil Senior Member

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    i was also very worried about how i will be treated but i am so sick now, i just want to be able to read a book again.

    personally, i think that we are contagious by saliva only during the acute phase.

    but there were 2 documented cases of HIV being passed from mother to child when the mother chewed food for the child...so i guess nothing in 100%.

    anyway, a vaccine would hopefully make it a moot point. they keep saying a vaccine would be easier with this virus because it does not mutate a lot like HIV, but they havent found a vaccine for HTLV-1, HTLV-2, or most of the herpes viruses yet, so maybe it won't be that easy.
  18. taniaaust1

    taniaaust1 Senior Member

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    Daffodil.. ive read that it will be harder to cure with a vaccine for us then AIDS patients due to the slower replication but that it will be easier to make a vaccine for others to prevent them catching it.
  19. acer2000

    acer2000 Senior Member

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    There are multiple vaccines on the market already for FeLV, the "cat" version of this virus. I think its feasible...
  20. ZoeHines

    ZoeHines

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    'Being treated like a leper would be a step up. At least lepers *get* treatment.' I completely agree, Dido x2 for me!!


    RustyJ - I can relate to being really cautious around everybody (including babies) but the parents laugh it off, it's very insulting!! Not many people know what a retro-virus is, my husband asked me if it was an old school virus LMAO

    As far as working with kids, I don't know what you're meant to do...I've been pondering this lately. If it is transmitted easily like some think it is, we do have a duty of care. At the same time, no one right now is taking it seriously, so no precautions will be taken anyway.

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