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
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