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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
May 3, 2010


 -- CFS/CFIDS Awareness Day & Fibromyalgia Awareness Day
 12th May
-- National (U.S.) Mental Health Month visit the Mental Health America site for information: "Live Your Life Well"
-- May is Lupus Awareness Month - Learn about Lupus -Lupus Foundation of America site: | | 
-- 9-17 May is European Congenital Heart Awareness Week
-- Psych Week : Awareness for Mental Disorders
-- May is Better Sleep Month - Get some sleep tips at The Better Sleep Council:
-- May is American Stroke Month: ...Every Minute Matters! Heart Attack Warning Signs 
Stroke Warning Signs Cardiac Arrest Warning Signs
-- May is National High Blood Pressure Education Month U.S.
National High Blood Pressure Education Program 
National Heart Lung & Blood Institute: Heart and Vascular Diseases Lung Diseases Blood Diseases Educational Materials 
-- BloodPressure Awareness Find out if you are at risk.
-- May is Better Hearing & Speech Month - The Communication Health of an Aging America:  
Warning signs of speech, language, and hearing problems
-- Water Safety Month: To learn how you can protect children from drowning, go to  
  Most of the above came from 

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
, 3, 2 children
Eastlakes, SW, Australia
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