RE: Important petition - please print my letter on why i signed
Linda J. MacDonald
Hello Kristine
I filled out the petition. I added a letter about why I signed. Here it is attached. I would like very much if the ME Society newsletter would publish it to encourage others to sign, and to encourage others period. It’s a bit rough around the edges but I think it should work the way it is.
Thanks,
Linda MacDonald (member)
From: Kristine Miles
[mailto:kristin...@mesocietyedmonton.org]
Sent: Tuesday, February 21, 2012
6:38 PM
To: undisclosed-recipients:
Subject: Important petition
Hello everyone;
Here is a petition you might be interested to read.
Kristine
ME Society of Edmonton
Resource Centre Assistant
http://www.change.org/petitions/minister-of-health-of-canada-fund-research-for-patients-with-myalgic-encephalomyelitis
Karen Lambert
Dear ME Society, 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 non-HIV 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 CFIDS. Increasingly, I have become concerned that my systemic diagnosis is caught up in the treacherous politics of CFIDS 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 CFIDS, 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 disorder) suspiciously categorized as two separate illnesses 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 CFIDS) on the front pages of every newspaper in the world? 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 Non-HIV 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. I stopped fighting for myself a long, long time ago. I fight for humanity. I demand a CFS/HIV revolution. Vive La Revolución. To learn more about non-HIV AIDS, and to see the *new* face of AIDS, please visit: www.cfsstraighttalk.blogspot.com Could I be you? {Boston, MA, USA © 2007} |
Sophie Ambrose
Not all CFS is like AIDS either. I've had CFS symptoms, to a greater or lesser extent, for about ten years, and they are nothing like AIDS apart from the fatigue. My immune system isn't too bad, if anything I get colds etc less often! And my husband (who I've been with for those ten years) is perfectly healthy. I know many other people who've had CFS for similar periods who also don't have major immune issues, and whose partners are totally fine.
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Ricky Buchanan
On 07/03/2012, at 9:25 AM, Karen Lambert wrote:
> 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 non-HIV AIDS are basically the same mysterious immune disorder.
On the other hand, perhaps it just makes you "living proof" that you're unlucky enough to have two separate unrelated illnesses at the same time. Or your diagnosis may be wrong:
> 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 CFIDS.
There are LOTS of different things that can generate CFS/ME symptoms, this is why part of the criteria for CFS/ME/CFIDS/whatever always includes something to the effect of "... and I don't have any other illnesses that could cause these symptoms".
This is why my recent diagnosis of EDS, NMH/POTS, and mast cell disorder technically means I don't have (and never had) ME/CFS. Because that triad *can* cause all the CFS/ME symptoms that I have, I no longer fit the criteria for CFS/ME either.
If you have measurable lymphocytopenia (which ME/CFS patients generally don't have) then it seems likely that whatever caused that is causing your "CFS/ME"-like symptoms too.
I'm really sorry you're stuck with whatever your disease really is - it sucks hugely to be sick, whatever the cause! I don't think you're on the right track here but I really hope that you get to the bottom of what's wrong with you.
Cheers,
Ricky
--
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