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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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HIV-Negative AIDS? (Sign a Petition)

Discussion in 'Action Alerts and Advocacy' started by ggingues, May 17, 2013.

  1. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    http://www.change.org/petitions/hiv-negative-aids-2

    The medical establishment will have you believe that Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is some sort of mysterious illness, but it’s no mystery to me; CFS/ME leads to NON-HIV AIDS, idiopathic CD lympocytopenia (I.C.L.), a clinical diagnosis I possess.

    How can the AIDS establishment continue with a stale "it's caused by HIV" THEORY when there are I.C.L. cases cited in medical journals dating back to 1992? While millions of ailing immunodeficient CFS/ME patients get belittled and neglected, perfectly healthy HIV+ people are allocated billions of dollars in taxpayer money. How can it make sense to anyone?

    In the U.S. last year, the NIH spent $3.1 Billion of our tax money drugging perfectly healthy HIV+ people. Sick, ailing immunodeficienct (some of us dying) CFIDS patients received $6 Million. How can it make sense TO YOU? source:report.nih.gov/categorical_spending.aspx

    It's so easy to see that the medical establishment simply has these paradigms (CFIDS, HIV) inverted. AIDS patients are simply more CFIDS patients, who also happen to harbor a seemingly harmless virus, HIV. AIDS patients are just the tip of the CFIDS iceberg, and it's already well-documented that HIV is not the cause.

    How else do you explain why there is no CFS/ME pandemic in the HIV+ population? How is it that all those 'high risk' populations do not have what CFSers' have in their 'low risk' bodies?

    The answer is --> THEY DO!
    Any otherwise perfectly healthy HIV+ person that is:
    1) symptomatic,
    2) better on ARV's, and/or
    3) severely immunosuppressed (AIDS)...
    ...is an undiagnosed CFIDS patient!
    Putting causation aside, simply rename CFIDS, ME, & AIDS all to be "low natural killer cell disease" and only diagnosis patients with "low NK cells" with it. Everyone would clearly see that:
    CFIDS + ME + AIDS =
    Low NK cell disease =
    ONE catastrophic pandemic*
    {* not caused by HIV}
    http://www.change.org/petitions/hiv-negative-aids-2

    GG

    PS Not sure of what to make of this? I've read a little about it.
     
  2. Valentijn

    Valentijn Activity Level: 3

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    I think it's a combination of paranoid conspiracy theorism and HIV-denialism. HIV denialism can be very very nasty - there's a small sample of it above, where "perfectly healthy HIV+ people" is said twice. It also gets into homophobia, racism, and general blaming-the-victim attitudes that ME/CFS patients should know better than to get involved in.

    In the case of the (very very few) ME/CFS patients believing it's HIV-negative AIDS, they're probably just being really really stupid, rather than homophobic, racist, or intending to blame the victim. Unfortunately they're also very vocal.
     
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  3. HowToEscape?

    HowToEscape? Senior Member

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    And they're fluoridating our precious bodily fluids water!111
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i dont understand what this thread is saying?
    Is it saying we cfs/me are non hiv? or is it saying we need the same funding as HIV?
     
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Check out the link provided at the bottom or top.

    GG
     
  6. Kina

    Kina Moderation Team Lead

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    The person who supplies this information basically says that there is no such thing as ME/CFS. We all have HIV-negative AIDS. She also believes that HIV is a virus that causes no problems. It's AIDS denialism and it' s a nasty message.
     
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    cfs/me dont all have lymphocytopenia, most have the opposite.

    Its been mentioned before about non hiv people with low cd4 t cells and im sure cfs/me get low cd4 but majority actually have high cd4 t cells.

    Same with nk cells, not all cfs/me have low nk cell numbers, many have high nk cell numbers, but we do have low nk function. Other illnesses with low nk function occur in MS and Rheumatoid arthritis. Apart of PHANU's research in cfs/me is trying to distinguish between the low nk function between these illnesses and ios why they are looking into bright and dim nk cell function.

    Im not sure we can say we have non hiv aids. I dont think low nk cell disease is accurate enough for cfs/me but maybe low nk function disease, but again its just one abnormality in cfs/me. Recent research also shows low cd8 function even though numbers can be ok.

    I dont understand why we have to have anything to do with HIV(not for or against), i think we just need more research into cfs/me to establish more biomarkers like nk function to help diagnose cfs/me. I just prefer to persue cfs/me then to go after proving HIV is real or not??

    Maybe i have missed the point??
     
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  8. Kina

    Kina Moderation Team Lead

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    Excellent points Heapsreal.

    The diagnosis this person has is very rare. It's likely at some point she was misdiagnosed with ME/CFS due too overlapping symptoms. It's likely her diagnosis of ME/CFS was just that, a misdiagnosis. It certailnly doesn't mean that ME/CFS is lymphocytopenia.

    I get really annoyed by people who say that HIV infection is benign. Back in the eighties, I was the visiting Nurse for a family who was infected with HIV. They are all now deceased. The father was a hemophiliac. He transferred the virus to his wife who transferred the virus to two children via pregnancy. The father was infected with HIV from contaminated blood products. Other than hemophilia, the father was extremely healthy with no other risky behaviors. It was totally sad and devastating. If you look at the statistics in Africa, HIV is definitely a problem. Anybody who denies HIV as the cause of AIDS is woefully ignorant.

    The diagnostic criteria for AIDS basically states you have to be HIV positive to have AIDS so really there is no such thing as non-HIV AIDS.

    Perhaps, this person should campaign for her disorder to be recognized as a distinct and horrible disorder and stop using ME/CFS as her soapbox. It does nothing for her or us. We don't want to be group that is involved in HIV denialism and we don't want to be group that is diagnostically related to lymphocytopenia because that would rule out that a majority of us even have ME/CFS.

    I have personally decided not to ever get involved in any form of HIV denialism. It's just too much and it discredits the illness of millions of people. Just like we get discredited.
     
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  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    One day they will sort the cfs/me name out, maybe a neuro-immune illness would cover many of these illnesses which will then be sub grouped into the appropriate categories. Maybe the person that says they have non hiv aids is in a not so well known sub group or rare sub group of a neuro-immune illness. I dont think there is going to be one specific test to diagnose everyone. Illnesses like MS or even hiv could then be particular sub groups of neuro-immune illnesses??

    I think many of us are envious of illnesses with high profiles because they get more funding, better treatments, more easily diagnosed, easier to get disability etc etc its not an even spread of funding etc it seems more dependent on the organisations public relations skills then on which illnesses need attention the most.
     
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  10. Valentijn

    Valentijn Activity Level: 3

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    It's possible. But carefully reading the site of one of these HIV-negative people "diagnosed" with AIDS revealed that it was self-diagnosed, supposedly based on lab results.
    Agreed - it would be nice to have a label that people recognize and respect. But at some point they have to realize that creating a conspiracy theory and denigrating another large group of patients is going to get them a very different label than the one they want, and quite the opposite of respect.
     
  11. golden

    golden Senior Member

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    Acquired Immune Deficiency Syndrome has been recorded officially without HIV being present... is this true?
     
  12. Valentijn

    Valentijn Activity Level: 3

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    Not really. The criteria for having AIDS requires that HIV be present. In some cases it sounds like HIV might not be detected due to certain treatments used for cancer or other diseases. But basically being HIV negative, and a lack of recent treatments that might interfere with detecting HIV, means that the patient cannot have AIDS.

    A criteria for distinguishing between HIV and AIDS is a low CD4+ T-cell count. So some HIV-negative patients fixate on that result and very selectively read rather old research in a manner that supports their desired belief that HIV is irrelevant. Basically ignoring the major mandatory criteria for the disease, and elevating the importance of a minor criteria which should really just be used to determine the stage of the disease.

    But by the very definition of AIDS, if the patient isn't positive for HIV, they have something else.

    Something else I found interesting was reading old blogs and such by an HIV-negative AIDS proponent: she kept predicting her impending death from AIDS within two years or so. Starting 10 years ago :p Maybe some people with low CD4+ but no HIV do have something that is killing them at a rate on par with what you expect with AIDS, but at least one of the vocal CFS=AIDS patients doesn't.
     
  13. golden

    golden Senior Member

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    I got a certain way to unravelling this to my own satisfaction but cant access the links at present. However it adds another personal dimension with M.E. that I havent come across before.

    isnt it more like HIV negative AIDS deniers? I think of the Thyroid people who all have Thyroid symptoms but it doesnt show up on blood tests. When they are treated with thyroid meds. they get better.

    Just because they now wont allow an AIDS diagnoses to be given without HIV + blood test result... doesnt really mean much if its kust initially based on correlation that doesnt occur 100% of the time...
     
  14. Valentijn

    Valentijn Activity Level: 3

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    It seems highly unlikely. These patients aren't dropping dead like HIV positive patients were prior to treatments being developed. If there were a group of truly AIDS-like patients (symptomatically, including death), there would be a very clear epidemic, just like there was when HIV was still commonly progressing to a lethal stage in developed countries.
     
  15. lansbergen

    lansbergen Senior Member

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    I agree
     
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  16. golden

    golden Senior Member

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    Denigration of people has nothing to do with the discussion: does HIV+ mean AIDS.

    I stay away from homophobic comments and so have not read what and why this may factor onto the situation.
    (and I dont want to kmow either - i refuse to read it).

    It wouldnt be the first time however I have come across mass fraud in the Allopathic Hierarchy...and it is Big Business to the Pharma industry.

    For this reason and because Dr.Mercola has shared similar wonderings about the validity of the Correlation Evidence...

    I would like to know more.
     
  17. golden

    golden Senior Member

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  18. Valentijn

    Valentijn Activity Level: 3

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    Massive amounts of reputable evidence showing that HIV causes AIDS.

    And a lack of reputable evidence showing otherwise.
     
  19. Valentijn

    Valentijn Activity Level: 3

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    The man being interviewed is not a medical doctor, and makes a living testifying at the trials of HIV-denialists being prosecuted for killing their children.

    And Mercola says that people diagnosed with HIV are inadvertently offing themselves due to psychological stress caused by their diagnosis. I bet he'd just love the psych theories of ME/CFS.
    Go for it.
     
  20. Omar88

    Omar88 Senior Member

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    I do believe that HIV cause AIDS but not alone as there are some co infections plays a rule on the progress in this disease and that what Prof. Montagnier and he is the founder of this virus !

    In the other hand we can see some cases of people getting sick after a sexual contact with ARS symptoms but with all negative tests ! symptoms that doctors would dont know how to explain and then those patients get thrown into CFS/ME as no other umbrella or diagnose can take them under and am and some other patients here are of them :)

    When people dies or get big huge symptoms media and governments medical staff get there attention except that it doesnt happen and people can struggle.

    Chinese HIV like virus is one of those cases that a pathogen has been isolated from a governmental lab and then they dismissed every thing and start saying that its due to psychological stress like what they always said to patients with ME/CFS but good doctor are still there trying to find an answer same as good ME/CFS doctors and they are new findings on the researches.

    Hope it will lead to a finding soon !!

    http://forums.phoenixrising.me/index.php?threads/is-it-a-new-disease-or-its-cfs.19062/

    every thing about my case and other people is here
     
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