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CFS: Hidden in Plain Sight

Ember

Senior Member
Messages
2,115
By Llewellyn King

MARCH 30, 2013 6:26PM
I am a reporter and my beat is hell. But it is neither the eternal hell of the Bible, nor Tartarus, the ancient Greek underworld, where the gods of mythology locked up their enemies.

The hell I write about is more prosaic: It is here and now. It is the hell of those who live with a disease that is incurable, has inadequate therapies, indifferent government attitudes, social stigma and no strong public voice.

The disease is Chronic Fatigue Syndrome (CFS), a benign name for a malignant condition....

Although probable CFS outbreaks can be traced back to at least the 19th century, it is still hidden in plain sight. One million CFS sufferers in the United States and millions more elsewhere will continue to suffer until society gets behind the moral imperative of researching a cure. The immediate needs are to comfort the sick, educate the doctors and shame the government.
More: http://open.salon.com/blog/llewellyn_king/2013/03/30/chronic_fatigue_syndrome_hidden_in_plain_sight
 

August59

Daughters High School Graduation
Messages
1,617
Location
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.
 

valentinelynx

Senior Member
Messages
1,310
Location
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.
 

PNR2008

Senior Member
Messages
613
Location
OH USA
When I applied for ssd in 1990, CFIDS, CFS had no code so the Gov gave it one Virus NON-AIDS. Lovely.
 

jeffrez

Senior Member
Messages
1,112
Location
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.
 

Seven7

Seven
Messages
3,444
Location
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.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
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??
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I think neuroimmune disease is too vague because it leaves out the endocrine, nervous, and metabolic systems.
 

Antares in NYC

Senior Member
Messages
582
Location
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? ;)
 

lastgasp

Guest
Messages
40
Doesn't cover cell energy metabolism or mitochondrial defects, tho.

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.
 

lastgasp

Guest
Messages
40
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.
 

Sparrowhawk

Senior Member
Messages
514
Location
West Coast 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? ;)
Yes, ACID works for me!