Do I have CFS, ME, ICL, or AIDS?

[cfsboston]

While millions of ailing, immunodeficient CFS/ME patients are mindfully belittled & neglected, perfectly healthy HIV+ people are allocated billions of dollars in taxpayer money for research and services.

How does that make any sense to anyone?

Why can't people see that AIDS patients are just more CFS patients, which as CFS patients we already know...it is not caused by HIV. It is so easy to see that the medical establishment simply has these paradigms (CFS, HIV) inverted.

I want a revolution.

CFS + ME + GWS + AIDS = one catastrophic epidemic (not caused by HIV)

If CFS/ME patients truly wanted billions of dollars of funding to be allocated to study their illness, all they need to do is demand of their government officials' that the medical establishment (e.g., NIH/NIAID) conduct a 'ReAppraisal of AIDS.'

7 Step Plan to resolving our World's catastrophic public health disaster:

1. Demand research funding parity for CFS with AIDS.
2. Suggest that CFS & AIDS be researched together by scientists rather than as separate entities.
3. Urge the CDC to move their AIDS division under the CFS umbrella so they research all the infections that AIDS and CFS have in common.
4. Urge that AIDS organizations (like Amfar) include CFS under their umbrellas so that CFS advocates dont have to reinvent the wheel.
5. Demand that the White House, Fauci and the Director of NIH make a public statement that (just from what we know today) in terms of the immune dysfunction and human suffering, CFS is just as serious a public health problem as AIDS.
6. Request that an annual international joint CFS & AIDS conference be held by the World Health Organization.
7. Suggest that next December 1st be declared the first World CFS/AIDS Day.

I stopped fighting for myself a long time ago. I fight for humanity.

www.cfsstraighttalk.blogspot.com

 

[cfsboston]

Do I have CFS or AIDS?

I have Chronic Fatigue Immune Dysfunction Syndrome (CFS/CFIDS/ME) and HIV-NEGATIVE AIDS, idiopathic CD lymphocytopenia. With these two clinical diagnoses, I believe that makes me living proof that the AIDS-like CFS/ME is transmissible, something that the medical establishment seems unable to admit or to acknowledge. I also believe it makes me living proof that CFS and HIV-NEGATIVE AIDS are basically the same mysterious immune disorder.

Three years ago, after a heterosexual sexual encounter, I became seriously ill with what looks like the natural disease progression of AIDS. After an "acute infection" and a "period of asymptomatic health", I have fallen extremely ill to an unrelenting, progressively-worsening AIDS-like demise. I can pinpoint exactly when I was infected with my "chronic viral syndrome of unknown etiology" and because the "acute infection" stage was so distinguishable, I can also pinpoint exactly when my undiagnosed pathogen left my body and infected yet another host.

Whatever I am currently dealing with, it strongly resembles classic textbook HIV/AIDS disease. But, to add to my inquiry, I also clinically satisfy the CDC's criteria for the diagnosis of Chronic Fatigue Syndrome.

Increasingly, I have become concerned that my systemic diagnosis is caught up in the treacherous politics of CFS/ME and AIDS. Most people with CFS/ME do not like to talk about the many symptoms and immune abnormalities that they share with AIDS patients. I also suspect that most ailing patients would rather be told that they have the very mysterious CFS than to be told that they have AIDS.

I have a Master's degree. I am a director at my firm. I used to be a triathlete. I have never used IV drugs. I have never traveled abroad. I can count my sexual partners on two hands. Statistically speaking, I know that my undiagnosed infectious and communicable disease is not rare...so, you tell me, if they are not in the miscellaneous CFS/ME category, where are all these other immunosuppressed people?

Anyone with Chronic Fatigue Syndrome, who does not consider the possibility that CFS/ME will eventually progress to a NON-HIV AIDS diagnosis, is very well trumping their own ability to diagnosis the root cause of their illness.

Why isn't CFS/ME a reportable disease overseen by our public health department? Why are ME and CFS (i.e., the same exact illnesses) suspiciously categorized as two separate diseases on a worldwide level (i.e., by ICD codes)? Doesn't anyone else but me, very clearly see, the catastrophic cover-up going on here?

Why are we not reading about Non-HIV AIDS cases (and/or the AIDS-like nature of CFS) on the front pages of every newspaper in America? And if CFS/ME is Non-HIV AIDS, then, depending on who you believe, there are anywhere between 500,000 - 14,000,000 Americans out there with a transmissible illness. If that is what it truly is, our new form of AIDS dwarfs the original AIDS epidemic ---> TENFOLD.

I want honest answers for myself, for everyone who is suffering from this hideous illness, and especially for those who remain uninfected by my undiagnosed infectious and communicable disease.

As worrisome as my health is to me, I am extremely troubled by the strong likelihood that more people are being infected every minute that HIV-NEGATIVE AIDS cases (like mine) are allowed to go undetected -- especially if it turns out that AIDS and CFIDS/ME are basically the same disorder.

You can label my AIDS-like illness whatever you wish. I would even allow you to call it infectious-CFS, even though it is utterly beyond my realm of comprehension as to how the medical establishment can generically name an entire disease paradigm based on just one (of my numerous) symptom(s).

Regardless of how politics may try to dissuade or delude you, all you need to know is that my idiopathic immune dysfunction is infectious! It is contagious! And it is spreading, unleashed, in the world's population!

I am not afraid to say that I have AIDS without HIV -- idiopathic CD lymphocytopenia -- my second official clinical diagnosis. I am equally as unafraid of saying the most obvious thing about CFS/ME: IT SURE DOES LOOK LIKE AIDS TO ME.

We talk openly about preparing for an impending Avian Flu pandemic. Why not talk about the HIV-NEGATIVE AIDS epidemic that already exists (and is spreading) amongst us?

If it takes courage to think and to say the things that I do, I hope that there will be a miraculous outbreak of bravery from coast-to-coast.

www.cfsstraighttalk.blogspot.com

 

[Esther12]

Why not talk about the HIV-NEGATIVE AIDS epidemic that already exists (and is spreading) amongst us?

Without HIV, I think it could be confusing to describe yourself as having AIDS, and so I doubt many people will end up using the term in this way.

I'm sorry to hear that you're having a hard time, but I'm a bit worried that you may have been misled by some things you read/been told. There's a lot of dodgy health information around on the internet, and it's best to be careful about what you absorb. Good luck with it all.

 

[cfsboston]

Without HIV, I think it could be confusing to describe yourself as having AIDS, and so I doubt many people will end up using the term in this way.

I'm sorry to hear that you're having a hard time, but I'm a bit worried that you may have been misled by some things you read/been told. There's a lot of dodgy health information around on the internet, and it's best to be careful about what you absorb. Good luck with it all.

Thank you for your response, but I choose all my language wisely. Facilitated by the United Nations, I have personally met with Nobel scientists and physicians. The Head of the CDC Retrovirology Division introduced me to Tulane's work. To find out a little more about HIV-Negative AIDS: http://www.autoimmune.com/Non-HIVAIDSGen.html or simply google "ICL."

www.cfsstraighttalk.blogspot.com

 

[urbantravels]

You appear to have fallen into the unfortunate trap of "HIV denialism." It really escapes me why some people find the convoluted logic behind this weird notion appealing, but it's a fringe view held by a very small number of people, not a legitimate theory of the disease by any stretch. It's a damn good thing that more people haven't signed on to HIV denialism, considering that our current understanding of HIV has saved countless lives that would have been helplessly lost a few decades ago. I only wish that we could become the beneficiaries of even a tiny fraction of the good science that HIV/AIDS has had lavished on it.

 

[cfsboston]

A virus by definition is "acquired." If the acquired virus then goes on to cause an "immune deficiency syndrome," let's call it: "Chronic Fatigue Immune Deficiency Syndrome." The result is an acquired immune deficiency syndrome. It's well-accepted that CFS is not caused by HIV. The result is non-hiv aids.

CFS patients are already chasing a retroviral cause, XMRV. HIV is also a retrovirus. It is what it is. I wish it wouldn't take people so long to see it. If retroviruses intrigue you, I recommend keeping an eye on HIAP-II too. I however have been told that I have no retroviral activity in my body.

Perfectly healthy HIV+ people get billions of dollars in funding for services and research, while millions of ailing, immunodeficient, (some of us dying) CFS/ME patients get nothing.

How can it make sense to anyone that billions of dollars of taxpayer money goes to provide services to people who are not even sick? All I need to do is look at my medical file to see that it's certainly not I that has "fallen into [an] unfornunate trap."

I only operate on objective facts that apply to my medical file. I don't agree with most of the AIDS dissident community. Most of them don't even think pathogens exist. It's horrifying. My bittersweet luxury is that I happen to know the exact day that I was infected with my undiagnosed pathogen that caused my Non-HIV AIDS. I reject my ICD-coding of CFS (i.e., it's stupidest thing I have ever heard).

 

[Snow Leopard]

Most of those HIV+ people will get sick, but I totally agree that HIV is massively overfunded, to the tune of around US $2.5 billion per year http://www.plosone.org/article/info:doi/10.1371/journal.pone.0016837

Whereas ME/CFS is clearly underfunded in the USA by well over US$100 million per year. The problem is that the WHO and the CDC have not performed a systematic study of disease burden (translatable into DALYs), so when we go to the NIH (who has a mandate to index funding to disease burden within reasonable bounds), it is more difficult to prove we need more funding. The other step is encouraging scientists to investigate our cause which means encouraging reasonable dialogue and correcting myths about ME/CFS.

I assume you have CD4+ T-cell deficiency? (on the usual flow cytometry tests) I assume you have ruled out the various strains of Hepatitis?
Lymphocytopenia in general can be associated with autoimmune disease (Wikipedia suggests SLE, RA etc) as well as other genetic immunodeficiencies.

 

[heapsreal]

Our name will be getting longer, me/cfs/nonhiv. I think there are similarities in that there is something causing immune depression but in hiv its cd4 t-cells and in me/cfs its nk function, both seem to get opportunistic infections, hiv without treatment die much sooner, both have increased risks of cancer. I not sure its the same retrovirus, i think calling it nonhiv is just going to make it even more confusing. I think all this just means we need proper diagnostic test and or more biomarkers.

cheers!!!

 

[svetoslav80]

What's your evidence that HIV doesn't cause AIDS? As far as I know, the anti-HIV therapy has been giving very good results for years.

 

[Esther12]

There's a lot of uncertainty in medicine... but I think that we can be pretty confident that HIV cause AIDS.

 

[cfsboston]

There's a lot of uncertainty in medicine... but I think that we can be pretty confident that HIV cause AIDS.

I don't see how there can be any confidence that "HIV causes AIDS" knowing that there are HIV-Negative AIDS (ICL) cases cited in medical journals dating back to 1992.

But, to go even further, join any AIDS dissident forum and you will see how disturbingly little evidence that there is that HIV causes AIDS. There are 100's, if not 1,000's, of well-educated scientists, doctors, and concerned citizens (worldwide) who have questioned the validity of the HIV-->AIDS paradigm since Day1. Not that anyone (i.e., corporate media) ever mentions this important stuff to the public.... I have spent years listening and absorbing the dissident position, while sifting out only what could objectively apply to my medical file.

If you'd like two quick videos these would be my suggestions:
Luc Montagnier on AIDS: http://www.youtube.com/watch?v=WQoNW7lOnT4&noredirect=1
The HIV/ AIDS Story is Being Rewritten: http://www.houseofnumbers.com/site/ This is a trailer to the 2009 Awarding Winning documentary. I suspect you can get the dvd at your public library.

I have also always liked Dr. Rebecca V Culshaw's write-up: "Why I Quit HIV": http://www.lewrockwell.com/orig7/culshaw1.html Culshaw is a PhD mathematician who used to conduct HIV modeling. She went on to write a book "Science Sold Out."

Reported back in 2007: "HIV does not cause AIDS. That was one of the most startling pieces of information to come out of the 21st Annual Meeting of Doctors for Disaster Preparedness (DDP), held recently in Phoenix, Arizona July 19. " (Sierra Times 03/07/29 Blanton)

@svetslav80: From what I can tell, and it makes a lot of sense when you think about it, HIV+ people who are either symptomatic and/or do well on anti-retrovirals are simply CFS patients. Why else wouldn't there be a CFS epidemic in the HIV+ population? CFS does not discriminate. The answer is that there is a CFS epidemic in the HIV+ population... it's labeled AIDS.

AIDS is not a disease. AIDS is a syndrome, like CFS. A syndrome is a syndrome before it gets the name of a disease. ME is a disease. Although highly correlated, and probably caused by the same pathogen, CFS and ME are not the same. And, it's the reason why most ME patients typically don't like to be lumped in with the CFS patients. Neither CFS nor AIDS are diseases; These paradigms are political definitions. An HIV+ person could die of a random mosquito bite and their death would be ICD-coded as "AIDS," and "AIDS" would get funded another billion dollars.

CFS + ME + AIDS = one catastrophic epidemic (not caused by HIV).

Please see my "7 Step Plan --> $$$ for CFS/ME" that I posted in "Action/Alerts/Advocacy."

I have countless links on my blog: www.cfsstraighttalk.blogspot.com I hone in on the CFS, AIDS, ICL citations because they are ones that are relevant to my objective medical file.

 

[heapsreal]

Cheneys experience with non hiv aids, so patients with low cd4 count and neg to HIV

As In AIDS, The Immune System Is Both Over-Stimulated And Depressed In CFS
The balance maintained between the interacting parts of the immune system appears to be extraordinarily delicate, we are learning as scientists unravel more and more of its mystery. What is becoming clear is that it's possible for one part of the immune system to be over-stimulated at the same time as other parts are depressed.

In CFS, the immune system cells called T-cells are often over-stimulated; this state is called "T-cell activation." Research has shown that, when T-cells are activated, they make immune system chemicals called cytokines; interleukin and interferon are examples of cytokines. When the T-cells make excessive amounts of cytokines, they can actually cause symptoms similar to those seen in CFS.

Fever, swollen glands, sore throat, aching muscles and joints, sleep disturbance, and even psychological symptoms can be caused by excessive amounts of cytokines.

Dr. Paul Cheney, who was one of the first physicians to recognize CFS in the U.S. -- and who has a number of CFS patients who can be designated "non-HIV AIDS cases" because they have very low T4 cell counts -- explains it this way: The sicker his patients feel, the more T4 cells (which are also called CD4 cells) they have. The less sick the patients feel, the lower their CD4 cell counts are.

Dr. Cheney says that the notion of "sick" is used differently with respect to AIDS and CFS patients.

"Sick is a semantic term in the sense that it implies different meaning in CFS than it does in AIDS," Dr. Cheney says. "We have sort of defined AIDS patients as what happens to them, and when bad things happen to them, they have low CD4 counts. CFS patients feel bad all the time, and their CD4 counts are actually high."

Dr. Cheney blames his sickest patients' symptoms on having activated T-cells. "It will make you royally sick" to have activated T-cells, he points out. "And, I'll tell you, the sickest people I have, the people who come in here who are really, really, sick, they'll have CD4 counts of 2,000," which is about twice as high as normal. "And the cytokines that are being expressed, of course, typically cause CD4 cell proliferation" -- so the T-cells, which are already too high, increase even more. This is the type of T-cell malfunction that can occur when the immune system is over-stimulated.

But Dr. Cheney also has CFS patients with very low CD4 cells counts; so low, in fact, that they can be diagnosed as being "non-HIV AIDS," or ICL, cases. Dr. Cheney believes that both sets of patients -- those with high CD4 cell counts and those with low CD4 cell counts -- have CFS. He thinks that the patients with the low T4 cell counts, however, are in "a different state" from other CFS patients.

Dr. Cheney says that his CFS patients who have fewer than 200 CD4 cells -- a level that is considered very dangerous for AIDS patients -- are "not feeling so good." He also points out, however, that those patients who have CD4 counts between 300 and 500 typically don't feel too bad, even though 1000 T4 cells is considered "normal."

"Looking at this group as a whole, the patients with low CD4 counts are relatively less sick -- less symptomatic, I should say," Dr. Cheney says. "Their symptoms aren't as severe. They seem to be more stable. If I had to guess what is happening, I think what is happening is that you are looking at the same disease in two different states."

One of those states is "up-regulated," in which the T-cells are activated and producing large amounts of cytokines; the other is a state of down-regulation, in which even the numbers of immune system cells drop.

Sometimes increased amounts of certain cytokines can cause the depression of some types of immune system cells. One of the cytokines that is elevated in CFS, for instance, is interleukin 1 (abbreviated IL-1). IL-1 has been shown to cause other parts of the immune system -- like natural killer cell activity -- to be suppressed. This is only one example of how an elevation in one part of the immune system can cause the depression of another part.

http://www.fms-help.com/aids.htm chapter 11.

 

[undcvr]

Did you respond to ARVs ?

 

[cfsboston]

CFSgate is AIDSgate.

I am a CFS/ICL/Non-HIV AIDS patient.

I remain infuriated by my government's betrayal of her people. Most CFS patients believe that their government has their best interest at heart, and sadly that is entirely untrue. So, to a lesser extent, I remain bothered that CFS patients' do not question authority and demand action of their employees. The government works for us...not vice versa!

I think it's great that CFS patients like to chit-chat amongst themselves in web forums. But, CFS is not science. A syndrome is a syndrome, not a disease. CFS is 100% a political paradigm, and in order to make any progress with CFS research "getting political" is the only solution.

To this day, from my bed, I continue to write at least 12 letters per day. Here are some examples of responses that I've received over the years: http://cfsstraighttalk.blogspot.com/2005/07/few-highlights-of-my-plight.html In my healthier days, I was traveling all over the world working with scientists, and the doorways kept opening for me.

I can only imagine the profound possibilities of what would happen if every CFS patient started writing 3 letters per day.

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/

Anger + Action = Activism

www.cfsstraighttalk.blogspot.com

 

[cfsboston]

Show me the $$$ ($3.1B vs. $6M)

How do you feel about how your tax money was spent last year?

NIH-Sponsored HIV/AIDS funding (2011) = $3,086,000,000
NIH-Sponsored CFS Research (2011) = $6,000,000
Source: http://report.nih.gov/rcdc/categories/

Perfectly healthly HIV+ people received $3.1B in research funding last year.

Sick, ailing, immunodeficient CFS/ME patients received $6M.

How couldn't you be infuriated?

In terms of the immune dysfunction and human suffering, just from what we know today, CFS is just as serious a public health problem as AIDS.

Please write your government representatives demanding funding parity for CFS with AIDS.

U.S. representatives here:

http://www.senate.gov/general/contac...nators_cfm.cfm
http://www.house.gov/house/MemberWWW.shtml
http://www.whitehouse.gov/contact/


My blog: www.cfsstraighttalk.blogspot.com

 

[*GG*]

I am a CFS/ICL/Non-HIV AIDS patient.

I remain infuriated by my government's betrayal of her people. Most CFS patients believe that their government has their best interest at heart, and sadly that is entirely untrue. So, to a lesser extent, I remain bothered that CFS patients' do not question authority and demand action of their employees. The government works for us...not vice versa!

www.cfsstraighttalk.blogspot.com

Hmm, not sure most patients believe this? Perhaps you should set up a poll on this thread to ascertain your claim? I know I don't think my gov't has much of a clue on this illness.

GG

PS It's great you can be as active as you are, but not everyone is so inclined/or capable. I work part-time and don't have the energy to do that much more work. I do simpler things, which don't require as much energy. Perhaps you can share some letters that you think are worth "repeating" or amending. Try not to forget some people have really bad "brain fog".

 

[currer]

Hi cfsborton, welcome to the forum,

Your post reminds me of a thread we had sometime ago posted by a chinese man- the significant fact being that the illness he suffered from was also transmissible sexually, and the sufferers became ill immediately after infection.
http://forums.phoenixrising.me/show...cy-report-from-China/page35&highlight=chinese

What you are describing is not a typical ME/CFS onset.

It is a long thread, but I think eventually the disease was recognised as a disorder which has also become a problem to the US.

 

[Tony Mach]

Perfectly healthly HIV+ people received $3.1B in research funding last year.

Sick, ailing, immunodeficient CFS/ME patients received $6M.

I am sorry, but you have almost no idea what you are talking about. Yes, the $6M that go into ME/CFS research is a joke.

BUT.

No, first of all ME/CFS is not "HIV negative AIDS" as you write to everybody. Not by far. Not even close.

Secondly, as a HIV patients you constantly need to be on several anti-retrovirals. Plus HIV is developing resistances and we need to constantly develop new anti-retroviral.

Thirdly, we need to take down HIV or we humans are going down.

If Nancy Klimas says she rather has HIV than ME/CFS today, than it is only because of these $3B that she can even contemplate that question. I guarantee you, if you stop that money into HIV, then people are going to die. Lots of people.

And by the way, my personal impression: You sound very close to a HIV-denying crank. What are you trying to accomplish? Please don't use HIV in arguing for our disease. You clearly do not have knowledge of HIV, so please just keep HIV out of it. You are muddying the waters. Say we deserve the equal attention as MS or Parkinson. That is something people understand and that I guess would be a sound comparison.

I would suggest to you:

1. Never, ever, say that people that suffer from other diseases are undeserving. Never. Ever. You wouldn't want others to say this about your disease, now would you?

2. Don't argue about science you don't understand, instead only argue that there should be more biomedical research.

3. Add something short about some "break-throughs" we had (e.g. the studies by the Lights or by the Norwegians) as examples, but keep it short. Argue only that we need to follow up on those.

4. We need investigations into the cause, pathology and therapy of ME/CFS.

Just my $0.02.

And no, no, no, no. We are not immunodeficient. If we were immunodeficient, we would risk dying quite quickly from common viruses. If at all, we have "immune dysfunction". I always say, we have "documented immune system involvement". But we are NOT immunodeficient.

 

[shannah]

If Nancy Klimas says she rather has HIV than ME/CFS today, than it is only because of these $3B that she can even contemplate that question.

But I hope you are not saying that CFS patients are not as ill as HIV patients. My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have HIV.
~ Dr. Nancy Klimas from NY Times article Is a Virus the Cause of CFS? posted online Oct. 15th, 2009

"Many clinicians fail to realize the severity of the illness that has been termed ME/CFS. This is a profoundly ill population, the severity of illness scores are similar to congestive heart failure and severe rheumatic disorders such as rheumatoid arthritis. If a medication like Rituximab is found to be effective in validation studies, the risk/benefit ratio would justify its use in very ill ME/CFS patients.

November 2011 http://bergento.no/the-mecfs-study-b...for-our-field/

 

[cfsboston]

Any otherwise perfectly healthy HIV+ person that is: 1) symptomatic, 2) is better on ARV's, or 3) is severely immunosuppressed (AIDS)...

...is yet another CFS patient.

Simply rename CFS, ME, and AIDS all to be "low natural killer cell disease" and everyone would very clearly see that:

CFS + ME + AIDS = low NK cell disease = one catastrophic epidemic (not caused by HIV)

Let's see, I

- Acquired a pathogen that lead to a
- Immune
- Deficiency
- Syndrome.

- I don't have HIV by Luc Montagnier's laboratory standards. But you must be right...I am such an ignorant crank, knowing nothing about science, that, facilitated by the United Nations, a scientist (who was awarded a Nobel Prize for discovering HIV) invited me to his laboratory (twice). Google it. Luc Montagnier is working on CFS now.

- I have 100 biomarkers and an idiopathic CD lympocytopenia (ICL) diagnosis, but yet I remain ICD-coded a CFS patient (remains the stupidest thing I have ever heard).

- I am a HIV-Negative AIDS patient.

www.cfsstraighttalk.blogspot.com

I am happy to refund the $.02.