XMRV: Allow Science to Progress

Why This Is Important

Recently a link has been found to the debilitating disease Chronic Fatigue Syndrome (CFS), and a retrovirus, X-MRV. Since the original findings published in the prestigious journal Science, several groups have produced conflicting results. The Wall Street Journal has reported however, that the NIH and FDA were able to confirm the findings (underneath the direction of scientist who discovered the Hepatitis C virus, Harvey Alter). The Wall Street Journal has also reported the studies (already picked for publication in the Proceedings of the National Academy of Sciences) are being WITHHELD, as the CDC was unable to duplicate the findings as well.

Tell our elected officials to direct the DHHS to allow the NIH and FDA to publish their papers. Preventing these papers from being published diminishes the trust of CFS Patient groups in the CDC and its willingness to deal honestly with this disease.

** UPDATE: The NIH states, on behalf of Alter, that it is subjecting the paper to additional scrutiny and tests. Yet questions remain - if the paper was good enough the first time, why does it suddenly need additional procedures and scrutiny (not applied to the CDC paper)? It is still unclear what pressure is being forced on this paper outside of the peer review process (specifically from the DHHS and CDC), and until that is made clear we must continue to press our elected officials to direct the studies to be released. These additional procedures have yet to be quantified in any way: Undue burdens placed on the NIH and FDA paper must not be allowed to circumvent the self-correcting nature of the scientific process.

( www.xmrvaction.org )

Symptoms

Although its name trivializes the illness as little more than mere tiredness, chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS), brings with it a constellation of debilitating symptoms.

CFS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period.

The symptoms of CFS are highly variable and fluctuate in severity, complicating treatment and the ill person’s ability to cope with the illness. Most symptoms are invisible, which makes it difficult for others to understand the vast array of debilitating symptoms with which people with the illness must contend.

Other Common Symptoms
Additional symptoms are reported by people with CFS (PWCs) such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning. PWCs may also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas); low-grade fever or low body temperature; numbness, tingling and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); gynecological problems including PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light-headedness; mental fogginess; fainting; muscle twitching; and seizures.

Recently several papers written by the NIH and FDA have found a link and this information MUST be published.

( www.xmrvaction.org )

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