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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 About.com) 
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 About.com) 
Exactly what does the XMRV discovery mean to fibromyalgia?
...................................................................
ME/CFS Evaluation Tool:

(About.com 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.
...so 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
children?
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.
...................................................................
EIPS
, 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
Abstract:
Validation of the EIPS in ME/CFS.

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

AMPLIGEN
Adapted from article in About.com (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,
HIV/AIDS,
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
---cognition
---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
---Anxiety
---Shortness of breath
---Feeling hot
---Sweating
---Nausea
---Liver enzyme level changes
---Diarrhea
---Itching
---Low blood pressure
---Rash
---Arrhythmias
---Low white blood cell count
---Dizziness
---Confusion

---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.
 

Links

1)
http://chronicfatigue.about.com/b/2009/06/29/drug-profiles-for-fibromyalgia-chronic-fatigue-syndrome.htm 
2) http://chronicfatigue.about.com/od/treatingfmscfs/p/ampligen.htm 
3) http://chronicfatigue.about.com/od/cfsglossary/g/RNaseL.htm

 

 
 
Content and comments expressed here are the opinions of Care2 users and not necessarily that of Care2.com or its affiliates.

Author

Jenny Dooley
, 3, 2 children
Sydney, Australia
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