CFS, ME, & AIDS: Syndrome vs. Disease

It took me years to get over this first hurdle, as I was so brainwashed. If others can get beyond this hurdle too, I believe that we (as CFS patients) can get to the funding faster.

Chronic Fatigue Immune Deficiency Syndrome (CFIDS/CFS) is not a disease. CFS, as its name suggests, is a syndrome.

Acquired Immune Deficiency Syndrome (AIDS) is not a disease. AIDS, as its name suggests, is a syndrome.

A syndrome is a syndrome before it gets the name of a disease.

Neither CFS nor AIDS are diseases.

Myalgic encephalomyelitis (ME) is a disease, just like MS or malaria.

CFS and ME are not the same (one a syndrome, the other a disease).

CFS (syndrome) patients like to align themselves with ME (disease) patients because it helps give our syndrome the dignity and respect that it currently lacks (i.e., due to the silly, belittling name our government labeled it). I coined this phenomenon 'disease envy.' Disease envy's advent: http://cfsstraighttalk.blogspot.com/2005_07_01_archive.html

I don't entirely disagree that CFS patients should do this. However, CFS patients have to understand that we are stealing the name of a legitimate disease, ME. This is the reason why most ME patients typically don't like to be lumped in with the CFS patients, because CFS dilutes the meaning of their disease (ME). ME patients have a very well-defined disease, so I don't blame them.

I am sure people are already privy to the fact that there is a massive initiative to get CFS (syndrome) patients properly diagnosed as ME (disease) patients. But, it has to be acknowledged that not all CFS patients will will quality for a ME diagnosis. CFS/ME terminology is not interchangeable, and is not accurate.

I see the big picture as to why CFS and ME should not be entirely severed (at least until the initiative is complete), as there is a high correlation and probably the same causal pathogen shared between the two maladies. Government (political) simply decided to name us two different things so we don't roll-up into the same category (i.e., by ICD-coding) on a world-wide level, which would garner more attention then require a public response from them. They mindfully set it up this way. I always hear patients saying "oh, they're so stupid," "Oh, they're so ignorant." The answer is "no, they are not. The people who set it up this way are very, very smart." It's totally horrifying to me that government sold-out global public health for profit.

AIDS and CFS (syndromes) are political paradigms.

An ailing, immunosuppressed CFS patient could die of complications associated with their severe immune deficiency and not have been funded a dime in research/services. This happens every day in America, UK, & Australia. {There are plenty of logical theories on this geography}

A perfectly healthly HIV+ person could die of a random mosquito bite and their death would be ICD-coded as AIDS. But, it wasn't HIV that caused the death...it was the mosquito. AIDS (the political paradigm) would get funded another billion dollars of taxpayer money all the same. This happens every day in Africa...it's called malaria. Malaria (disease) will not get funded, however, AIDS (political), will. It's total lunacy.

HIV is not the cause of AIDS, since AIDS is not a disease.

SCENARIO:
If you had the authority to allocate billions of dollars in taxpayer money to scientific research, where global public health was your #1 priority, would you give it to the perfectly healthy HIV+ people (most of whom have never been sick a day in their life) or would you grant the money to fund research for the sick, ailing, immunodeficient patients?

If you had the authority to allocate billions of dollars in taxpayer money to support a political agenda, where acquisition of untapped oil/diamond reserves was your #1 priority, would you give it to the perfectly healthy HIV+ people (most of whom have never been sick a day in their life) or would you grant the money to fund research for the sick, ailing, immunodeficient patients?

The answer is crystal clear to me.

CFS, ME, & AIDS patients are not dealing with science. They are dealing with politics.

Please write your represenatives' demanding a 'ReAppraisal of AIDS.'

U.S. representatives can be found here: http://www.senate.gov/general/contact_information/senators_cfm.cfm http://www.house.gov/house/MemberWWW.shtml
http://www.whitehouse.gov/contact/


www.cfsstraighttalk.blogspot.com

Comments

I have to disagree on that. CFIDS is a disease. It is the name they gave to US ME patients. What then happened was, there was a huge push to lump in CFS patients who did NOT have immune dysfunction. And they pushed and pushed until everyone stopped calling CFIDS what it was, and started calling it CFS. They removed the immune dysfunction from the name. And by doing that, they could lump anyone into it. My official diagnosis, is CFIDS. I was never diagnosed with CFS. I am CFIDS/ME.
 
CFS is a syndrome. A syndrome is a syndrome before it gets named a disease.

I was diagnosed ICL. It wasn't until much later that they dumped me into a ICD bucket, CFS. I rarely if ever refer to my diagnosis as CFS (it's stupidest thing I have ever heard).

I don't really subscribe to the CFIDS/CFS/ME renaming initiative, but if you ask me CFS, ME, and AIDS should all be renamed: "low natural killer cell disease," and only patients with low-natural-killer cells can be diagnosed with it.

Everyone would very cleary see that:

AIDS + CFS + ME = one catastrophic epidemic (not caused by HIV)
 
I was also diagnosed w/ CFIDS - and have always called it that - but most drs. I've had will still write 'cfs' as diagnonsis .... and other than maybe a handful of specialists in the US, no dr. is going to recognize or use the term ME. One pain management dr. I had, w/ a better understanding of this than many (at least he recognized it as an organic, not mental, illness), actually lectured me on why I shouldn't use 'ME' .... no evidence of infection, confuses people, etc.

Of course he is wrong .... but when even stanford is using cfs - which I also will NEVER use, it IS ridiculous, if not criminal - and much of the research I bring to them uses cfs - I am forced forced to at least acknowlege, if not use, this stupid term.

In my opinion - this whole catastrophic epidemic (AIDS, CFIDS/ME, Lyme) originated from some evil labs run (on Plum Island*?) by the same government that chose the completely trivializing and inaccurate 'cfs' .... but I guess that's another story.

I also would love "low nk cell disease", as in Japan, an actual biomarker, what a concept - but again ... try to get a GP dr. in the US to even test for low nk cell function, let alone interpret the results. I have brought lists of immune function and other CFIDS and Lyme specific tests to many drs. ... and not one has been willing to run them. (I do have a specialist now, that I just saw for the first time this month, so after 20 yrs. I should soon, FINALLY, be getting the proper tests, etc.)

The horrible name, over the years - and the public/medical perception that goes along w/ it - has ended up being much harder for me to deal with than the illness itself - which has been horrible ... I've had this for 20 years, never well enough to have anything remotely resembling a "life"... but the trivialization of this suffering we all struggle to 'live' with every single day is utterly tragic.

(Sorry I can't post the link - but on youtube you can watch (in 4 parts) Jesse Ventura's show "Conspiracy Theory" on Plum Island (and the origin of Lyme disease).... anyone w/ Lyme especially may be interested, I highly recommend it!)
 
Thanks Lisann. I am familiar with Lab257 (Plum Island). Sadly, it's not theory or conspiracy. Michael Carroll's book is non-fiction: http://www.amazon.com/Lab-257-Disturbing-Governments-Laboratory/dp/0060011416

I am an ICL patient. Although I am ICD-coded a CFS patient, the words never cross my lips. I refer to my illness as "Non-HIV AIDS." I like getting my point cross fast, and the response I typically get is "holy S#it." It makes people understand very quickly how serious of an illness this really is.

Take Care.
 
CFIDS is a syndrome. CFS is a syndrome. AIDS is a syndrome. A syndrome is a syndrome.

ME is a disease.

If you are diagnosed CFIDS or CFS, you might argue that you should have a ME diagnosis. And, you're probably right, but until a doctor diagnoses you with ME you have a syndrome (CFIDS/CFS), not a disease (ME).

Whether you have CFS or ME, it does not change the validity or severity of your illness. I am a diagnosed CFS patient, and my biomarkers are so significant I am diagnosed ICL. I am far sicker than most ME patients that I chat with, but a syndrome is a syndrome and a disease is a disease. I have a syndrome, not a disease.
 

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