1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

CFS: Hidden in Plain Sight

Discussion in 'General ME/CFS News' started by Ember, Mar 31, 2013.

  1. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,776
    By Llewellyn King

    MARCH 30, 2013 6:26PM
    More: http://open.salon.com/blog/llewellyn_king/2013/03/30/chronic_fatigue_syndrome_hidden_in_plain_sight
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,151
    Likes:
    4,741
    Albuquerque
    This is another great article.

    Thanks again Llewellyn King!

    Sushi
    August59 likes this.
  3. August59

    August59 Daughters High School Graduation

    Messages:
    1,479
    Likes:
    397
    Upstate SC, USA
    What do most people or patients think about the term "Non-HIV AIDS"? I am hearing it more and more, but can't convince myself it is a good label to put on the disease, but I can't think of one that is a whole lot better.
    My gut tells to leave it alone and let the researchers label it when they sort the subsets out, but all I ever hear is "Chronic Fatigue" and that's it.
    I've heard it will be incorporated into "text books" that will slowly start to enter collegiate institutions. I will be very curious to see how it is labeled in them.
    vli and Plum like this.
  4. valentinelynx

    valentinelynx Senior Member

    Messages:
    194
    Likes:
    67
    Tucson
    I don't like "non HIV AIDS" one bit. Acquired Immunodeficiency Syndrome may be a kind of tame and lame description of what the HIV virus does, but for me it will forever mean a drastic shut down of the immune system so that people die rapidly of infections and cancers that a normally functioning immune system would easily fight off. This occurs because the HIV virus ("human immunodeficiency virus") specifically attacks certain immune cells, making them unable to function. While there may be a subset of ME/CFS patients with poor immune function, I don't think "AIDS" or "immunodeficiency" captures the essence of the illness. The immune system is disordered, altered, yes. Deficient? Not so sure. No, I haven't found a label that works, either! Although I'm leaning strongly towards believing that it is either a post-viral condition or a chronic viral condition. I do believe it starts with an encephalitis and I sure have myalgias, so ME works for me.
    Marco likes this.
  5. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,585
    Likes:
    7,128
    Amersfoort, Netherlands
    I avoid it like the plague. HIV-denialists are very big on using that term, and tie it into all sorts of nasty conspiracy theories. Some if it is seriously homophobic, racist, etc.
    peggy-sue, Firestormm and Marco like this.
  6. ballard

    ballard

    Messages:
    64
    Likes:
    48
    I think that the "Non-HIV AIDS" topic should have its own thread.
  7. PNR2008

    PNR2008 Senior Member

    Messages:
    377
    Likes:
    515
    OH USA
    When I applied for ssd in 1990, CFIDS, CFS had no code so the Gov gave it one Virus NON-AIDS. Lovely.
  8. jeffrez

    jeffrez Senior Member

    Messages:
    1,099
    Likes:
    619
    NY
    That's all we need now, to be confused with those who have HIV AIDS. While I like the idea of using a name the public can get their tiny, distracted minds around enough to recognize as a legitimate disease, I think trying to link it to AIDS can only backfire and cause more stigma. Especially since ME/CFS is not treatable in the sense that HIV now is, the public would live in fear of "contracting" the dread "New AIDS" and avoid us like the plague, no pun intended.

    That was a great article, though. Was gratified to see he's a respected PBS journalist. I think FRONTLINE should do a story on ME/CFS. That show tends to be outstanding.
  9. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    445
    Likes:
    227
    West Coast USA
    What about simply calling it "Neuro-immune Disease" and leaving it at that? Or is that still to vague?
    heapsreal likes this.
  10. lnester7

    lnester7 Seven

    Messages:
    1,133
    Likes:
    991
    USA
    what I understand, non HIV -AIDS (low CD4????) has a different cytokine panel than CFS (Low CD56??) . Unless you get a Cytokine panel you really don't know what group you fall into, so people should be careful about generalizing.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,910
    Likes:
    4,013
    australia (brisbane)
    neuroimmune disease i think is good or we can say we have a chronic immune dysfunction. Dysfunction could then cover if one has a high or a low immunr function or a mixture of the both??
    Sparrowhawk likes this.
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,233
    Likes:
    1,562
    Midwest, USA
    I think neuroimmune disease is too vague because it leaves out the endocrine, nervous, and metabolic systems.
    jeffrez likes this.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,910
    Likes:
    4,013
    australia (brisbane)
    I was thinking neuroimmune would cover ME and non ME and from there group into sub sets. Away of dropping the word fatigue which trivializes the whole spectrum???
  14. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,585
    Likes:
    7,128
    Amersfoort, Netherlands
    "neuro" does mean nervous system. It just more commonly gets equated with "brain", one part of the nervous system.
    Little Bluestem likes this.
  15. jeffrez

    jeffrez Senior Member

    Messages:
    1,099
    Likes:
    619
    NY

    Doesn't cover cell energy metabolism or mitochondrial defects, tho.
  16. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    445
    Likes:
    227
    West Coast USA
  17. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    150
    Likes:
    154
    USA
    I don't think "non-HIV aids" is a fair characterization, but there is something to it. As Sushi explained recently, it's like a viral MS.
    Since I feel a bit creative, I wanted to add my two cents, propose some alternative nomenclature to the lame and inaccurate "CFS":

    Atypical Chronic Immune Disease - ACID
    Chronic Auto Immune Disease - CAID
    Viral Obscure Immune Disease - VOID
    Atypical Systemic Collapse Ordeal - ASCO
    Chronic Unexplained Ravaging Systemic Encephalopathy - CURSE
    Systemic Immune Collapse Syndrome - SICS
    Extreme Viral Immune Liquidation - EVIL

    More to the point, right? ;)
  18. lastgasp

    lastgasp

    Messages:
    33
    Likes:
    39
    These may not be any more unique than neuroimmune. You might as well say it doesn't cover cardiology, genetics, gastroentestinal etc. You're going to have a hard job finding a name or brief description which describes every single system/organ affected or every single complication. Neuro-immune was chosen because it's thought to be closest to the unique etiology of ME, i.e. the immune system and nervous system. Few doctors seem to get great reslts from treating as an energy problem alone while treating the immune system as minimum seems to have the best prognosis. People with primary adult onset mito disease are rarely as disabled as severe ME and sometimes are given GET!

    I think neuroimmune is the best of the bunch really. Neurological per se could be a hit and run illness or a closed head injury misdiagnosis; the immune system (inc infections) is the biggest disease maintaining force for most.
    Antares in NYC and Valentijn like this.
  19. lastgasp

    lastgasp

    Messages:
    33
    Likes:
    39
    Btw I look upon neuroimmune as a category, not a name, so it doesn#t have to be 100% unique and you can't have an everything-category.

    I don't think associating with "non HIV AIDS" is a good idea, as that seems a lot of semantics (other immunodificiencies are already known other than AIDS) that's largely hijacked by people with an anti-HIV agenda, and that sort of controversy isn't helpful when we've enough of our (i.e. the med professions') own.

    As others have said, untreated AIDS tends to go down (fatally) pretty fast while pwME can be even severely disabled for several decades, and I've yet to hear any pwME with Kaposi's sarcoma. I don't think us trying to be the "lite" of anything is going to help. Too much simile and not enough definition.
    Purple and Antares in NYC like this.
  20. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    445
    Likes:
    227
    West Coast USA
    Yes, ACID works for me!
    Antares in NYC likes this.

See more popular forum discussions.

Share This Page