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May 26, 2012

Chronic Fatigue Syndrome unmasked

My personal quest to understand an
enigmatic and incurable illness
By Brendan K. Edwards

Ever heard of the yuppie flu? How about Chronic Fatigue Syndrome? Or perhaps you've heard of Myalgic Encephalomyelitis? If you're like most Canadians, you probably don't know that all three refer to the same illness. You may also be unaware that May 12 was International Chronic Fatigue Syndrome Awareness Day.
How do I know all this? Well, I've been battling CFS for the past six years.
When I look back, it is difficult to remember when it first began. But, by my fourth year at Ryerson University the fatigue had descended completely like a heavy fog. Reading, writing, focusing, even thinking, exhausted me. My brain, which had once functioned like a high-speed computer (or at least that's how I imagined it) now felt like a dusty filing cabinet.
I dropped out of journalism school and returned to Montreal, convinced that without the stress of university life I would bounce back from my burn out. Little did I know that the mind-numbing fatigue was only the first in a lengthy list of symptoms that would dominate my life for a long time to come.
CFS may sound benign, but if you think that all a sufferer needs is a power nap, you are sadly mistaken. CFS is an incurable disease that ravages the immune system and leaves many completely debilitated. Its most common symptoms are extreme exhaustion, cognitive dysfunction, extended loss of energy following minimal exertion, swollen lymph nodes and sore throat.
About a year after I quit school, I began to develop all of these symptoms and more. I had serious stomach pain every night due to gluten intolerance and a number of other new food allergies. I also became highly sensitive to chemicals in cleaning products and developed strange aches and pains all over. Most frustratingly of all, I still had no diagnosis.  I spent my days frantically scheduling appointments with doctors all over the city and my nights scanning online health forums for clues. As time passed, I felt increasingly powerless and isolated. Finally, I found a book on CFS and began to connect the dots.
Unfortunately, my family doctor was not convinced and like a majority of Canadian GPs, refused to recognize CFS. As far as he was concerned, all of my symptoms stemmed from clinical depression. Sadly, the exclusion of CFS in favour of a diagnosis of mental illness is a common thread that runs through far too many patients' stories. Alison Bested, a CFS specialist based in Toronto, has noted that up to 85 percent of her patients have been told that their problems are purely psychological. Couple that with the fact that there are only a handful of Canadian CFS specialists and it is easy to see why CFS patients reported some of the highest rates of unmet health care needs in the 2010 Canadian Community Health Survey.  
When I embarked on my own search for a specialist in Quebec about four years ago, I was told that none existed. In the end, I had no choice but to visit a CFS centre in Connecticut. Finally, after multiple trips to the U.S. and a slew of tests for everything from Lyme disease to sleep apnea, I received an official diagnosis.  
Although there is no cure for CFS, there are many lifestyle changes one can make to adapt. I've completely overhauled my diet, eliminating gluten, sugar and a number of other foods. I've also learned to pace myself so I don't burn out as often.
Overtime, I've learned to live a life within the boundaries of my illness and I know that I can count on the support of my family and girlfriend when my symptoms start to flare up. Unfortunately, there are thousands of Canadians with CFS who can't say the same. They have not only been dealt devastating blows to their health but also suffer from economic hardship and social isolation. Hopefully, when they tell their stories, some of us will listen and lend our support.

Brendan Edwards was one of the founding editors of Montreal's Siafu magazine.

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Posted: May 26, 2012 8:03pm
Oct 23, 2009

  (N.B. yellow highlights = links to pages, stories)
Xenotropic murine leukemia virus-related virus (according to Wikipedia)
Essentially, it's a virus related to a virus that causes a type of leukemia. The term xenotropic means:
   xeno = foreign, tropic = growth
Basically, these viruses don't replicate or cause problems in their original source, but are a problem in other sources. Some species are naturally resistant, but others are not. This particular virus apparently originated in mice.
A retrovirus... a virus that inserts its DNA right into your cell's genetic makeup.
In cancer...
researchers believe tumours result when retrovirus DNA is put next to a gene that regulates cell growth.
XMRV: How is the retrovirus transmitted?
(according to 
It looks like we've found a major viral player in ME/CFS
  -- how does it end up in our bodies?
  -- does it spread?   -- if so, how?
  -- what questions remain to be answered?

XMRV & the Fibromyalgia connection 
(according to story in 
Exactly what does the XMRV discovery mean to fibromyalgia?
ME/CFS Evaluation Tool:

( story) 
Something that's really lacking in medicine is a universal way to evaluate ME/CFS.
How is XMRV transmitted?
   Because scientists have only known about this
   particular retrovirus for a few years, they still
   have a lot to learn about it. far it appears that it's transmitted through bodily fluids, e.g. Blood, Semen, and Breastmilk. .
(we don't know that for sure, but that's what
researchers believe at the moment.)
   This retrovirus could be in the blood supply,
   transmitted to people during surgery or
   treatment for trauma, when the body is 
   already in a weakened state.
Will this become one more thing blood banks
and hospitals test blood for?
It's generally believed there's a genetic predisposition...
   If parents are unknowingly passing both the
   genes and XMRV to their children ...are those
   children ticking time bombs, just waiting for
   other triggering factors to hit?
Taking Precautions
If you have CFS or another XMRV-related condition...
...Should you take precautions with your sexual partners?
...Should you breastfeed? ...Should you even have
Hopefully, we'll have a lab test before too long that will tell us whether we carry the virus... until then...?
Chronic Fatigue Syndrome Outbreaks
One of the many points of contention about CFS is reported outbreaks of chronic fatigue syndrome. For decades the CDC has always said there was insufficient evidence to confirm that they were true outbreaks of infectious disease.
The study shows that XMRV is transmissible --
YES and YES:
- CFS/ME is viral, 
- there have been outbreaks.
Confusion about the fibromyalgia connection

Scientists tested people diagnosed with FMS and found a high prevalence of XMRV. Short comings of this research:
1.The small number of blood samples tested
2.The possibility that some of those samples came from people who were misdiagnosed or had undiagnosed comorbid chronic fatigue syndrome
The misdiagnosed/undiagnosed issue is a big one. Right now, both of these conditions are diagnosed based on symptoms, and their symptoms lists are very similar. Most doctors don't understand either condition well and may be unable to distinguish between them. Some doctors also believe fibromyalgia and chronic fatigue syndrome are really the same condition. Until we have a universal diagnostic test for at least one of these illnesses, we won't have a reliable way to separate test subjects.
Once we do have diagnostic tests, it's likely that a lot of us will end up with different diagnoses than we have now. Until a larger number of people with fibromyalgia are examined, we won't know for sure what this discovery means to fibromites.
, which stands for Energy Index Point Score.
It's a 0-10 scale that measures fatigue and functionality.
(N.B. from Jenny...Some comments from the public say this scale isn't good enough.)
At 0, you're bedridden and can only get up to use the bathroom. Each step up the scale represents a significant improvement, with gradually increasing lengths of time out of bed. At a 6, you're considered in the recovery stage, and at 10 you're fully functional once again.
The full EIPS chart here: Energy Index Point Score
Validation of the EIPS in ME/CFS.

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Posted: Oct 23, 2009 1:03pm
Jun 30, 2009

Adapted from article in (Drug Profiles for Fibromyalgia & Chronic Fatigue Syndrome) --see links at end of this blog

What Ampligen Is:

Ampligen (polyu I: poly C12U) 
-- an experimental anti-viral, immune-system modulating drug that's been in the works for more than 30 years. 
-- studied as a possible treatment for multiple conditions, including
chronic fatigue syndrome i.e.CFS or ME/CFS,
certain types of cancer
, and, most recently, 
avian flu (H5N1) and swine flu (H1N1).

Ampligen's manufacturer, Hemispherx Biopharma Inc., has applied for FDA approval of Ampligen as an ME/CFS treatment... the decision is expected in June 2009.

What Ampligen Does:

Ampligen is believed to work by jump-starting your body's natural anti-viral pathway and regulating levels of RNase L (see definition below *), which can be high in people with ME/CFS.
It's also been shown to inhibit tumor-cell growth.

Ampligen for Chronic Fatigue Syndrome:

Ampligen has been shown to improve
---exercise tolerance
---neuropsychological health and overall function in people with ME/CFS
---decrease activity of HHV-6
-a virus believed to be linked to ME/CFS, and
---decrease RNase L activity. 

Hunter-Hopkins Center (of USA) says 80% of its trial patients improved on Ampligen, and 50% improved significantly.

Ampligen Dosage:

Ampligen is administered intravenously (I.V.).
In trials and under conditional permits by the FDA, patients typically have received 400mg of the drug twice a week. Hunter-Hopkins recommends at least 12 months of therapy, and 18 months for the severely ill.

Ampligen's Possible Side Effects:

---Mild flushing
---Tightness of the chest
---Rapid heartbeat
---Shortness of breath
---Feeling hot
---Liver enzyme level changes
---Low blood pressure
---Low white blood cell count

---Some patients have flu-like symptoms for a few hours after receiving a dose of the drug, and the company says these effects typically went away after several months of treatment.

* RNase L definition:

A cellular enzyme that is part of the body’s immune defense. RNases are extremely common in the body and act to break up ribonucleic acid (RNA).
Studies of CFS patients have shown that:
---RNase levels are often higher than normal.
While the reason for this is not clear, some speculate that it could be related to a viral attack.
---the RNase destroys all of the RNA within the cell, whether cellular or viral.




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Jenny Dooley
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