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Tuesday, August 27, 2019

This is why there should be a conference on the relationship between Chronic Fatigue Syndrome and AIDS

Scott Simpson and Jonathan Lyon have personal stories that could finally bring Chronic Fatigue Syndrome out of the AIDS closet and force scientists to consider the possibility that they are part of one epidemic with one cause. Will that cause turn out to be HHV-6? Will the real retrovirus that links CFS and AIDS turn out to be HERV-K18 which is reactivated by HHV-6?

Scott Simpson says he has both HIV and what Judy Mikovits calls "Non-HIV AIDS" (Myalgic Encephalomyelitis or MECFS). While he discusses these as separate diseases, is it possible they are really just the two faces of one disease? Is he the Patient Zero of a new paradigm for CFS/AIDS?

The novelist Jonathan Lyon has Chronic Fatigue Syndrome. His father died of AIDS. Does that also show the epidemiological connection between the two epidemics?

Isn't it a time for a NIH conference devoted to just exploring the connection between Chronic Fatigue Syndrome and AIDS? Shouldn't activists demand that Francis Collins of NIH and Robert Redfield of the CDC begin major research into the relationship between the two epidemics and HHV-6 as well as HERV-K18?

Scott Simpson's Story.

HIV was the best thing to ever happen to me.
But having ME is the worse.
I told the Federal Health Minister Ginette Petitpas Taylor as much at a Town Hall in April. She invited me to meet with her.
In July myself and some other ME patient advocates traveled to Moncton to meet with her, and others joined by video.
Yesterday in Montreal for the 'special announcement' we were able to chat again. Here are some pics of some quality time.
When I got HIV it was obviously not a good thing physically or otherwise - but when I was doing HIV advocacy, there was a point where I realized that my experience working with other passionate, collaborative folks to bring HIV meds to Malawians with HIV, had turned living with HIV for me, from a negative into a positive: I was able to say 'HIV is the best thing that ever happened to me'.
When I got ME and then involved with ME advocacy, I often wondered if I would ever have that same experience. I've been working with passionate, collaborative people in the ME community for a few years, and yesterday's announcement by the Health Minister about the ME research funding was a pivotal step toward bringing equitable health care to Canadians with ME.
The cruel irony that I went from advocating for access to health care for one of the poorest countries in the world, to advocating for access to health care in one of the wealthiest countries in the world is not lost on me --- and it is magnitudes more challenging with ME due to decades of medical error and stigma.
As Scientific Director Dr Karim Khan said yesterday to physicians, "remove the insult from this injury".
And our Primary Investigator researcher Dr Alain Moreau said, ME is "the medical enigma of the 21st century".
These are powerful statements for funding and for patient care and to stop the medical harm.
When I can say that ME is treated as effectively as HIV, then my own HIV ranking as 'best thing' would be usurped. I look forward to the day I can say "ME is the best thing that ever happened to me".
The announcement of $1.4 million (a mere crumb compared to HIV funding) for ME research funding and to launch the ICanCME (clever eh?) Research Network is pivotal to the (sad) history of ME in Canada.

Jonathan Lyon's Story
This is a show that could revolutionize the way people look at Chronic Fatigue Syndrome and AIDS. Charles Ortleb discusses Jonathan Lyon, who has written Carnivore, a novel that is a "revenge tragedy" inspired by his struggle with Chronic Fatigue Syndrome. Lyon may soon become the most talked-about Chronic Fatigue Syndrome victim in the world. Jonathan Lyon has suffered from Chronic Fatigue Syndrome for ten years, and in Attitude magazine he reports that he watched his "dad die of HIV." Lyon's condition is referred to as "Non-HIV AIDS" by former National Cancer Institute researcher Judy Mikovits. Ortleb asks the painfully obvious question of whether there is a connection between Lyon's "non-HIV AIDS" and his father's "HIV AIDS.

Lawsuits for Truvada Kidney Failure could end up undermining the HIV theory of AIDS

Truvada Bone Lawsuit | Lawsuits for Truvada Kidney Failure

Lawyers Helping Families Nationwide Harmed by Truvada Kidney Problems and Broken Bones

Truvada, a widely-used antoretroviral drug used around the world, has been shown to cause serious side effects including kidney failure and osteoporosis. While the Truvada risks have been long known, many Americans are not aware a safer drug had been developed which would have prevented Truvada broken bones and kidney problems. Despite showing promise in early clinical trials, the safer version sat on a shelf, unfinished and unavailable, for a decade. Meanwhile, millions of patients were exposed to severe and life-threatening Truvada side effects including osteoporosis, broken and brittle bones, renal impairment, and kidney failure.

Will Truvada lawsuits eventually prove HIV is not the cause of AIDS?  Was Peter Duesberg right?

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