Blood Donation and Chronic Fatigue and Gulf War Veterans

Blood Donation and Chronic Fatigue and Gulf War Veterans/Illness in the National News

Alert should also includes those Gulf War Veterans 1990-91 who have chronic fatigue syndrome.  This should be no surprise, when we returned home in 1991 we had a blood ban that was originally due to potential for Leichmanasis the Sand Fly Fever that was endemic in Iraq-Saudi Arabia and there was no test available at that time to screen the blood.  Dean Lundholm and this writer worked on this issue in the 90’s even traveling to the VFW National Convention in Las Vegas to push for a national resolution from the VFW for the veterans to voluntarily withhold from donating blood because too much was not known!  WE did not want to potentially exposed the population of the US at large to whatever we were exposed to in the Gulf War 1990-91.

Dean Lundholm was able to get the resolution started and passed out of Department of California.  Our next task was to get it through the VFW National Convention being held that year in Las Vegas.

Dean was ill having just gone thru the CCEEP program registry at a VA hospital.  He got out of the hospital and traveled to the convention, calling me to get there to help him since he had been post spinal tap(for Spinal fluid collection).  When the author got on site, I had to get a wheel chair to get Deam around in while we worked to find out where the resolution had hit in committee meetings.  At that point we found out it was not being reccommended by the committee of referal to go forward on the floor for overall passage by the VFW.  We learned from other VFW experts what we had to do to have the resolution pulled and set aside for floor debate!  The old Air Force Nurse Desert Storm Veteran had to go to the microphone at the National Convention and lead the charge, which I did!  Dean and I combined forces with a great deal of assistance from California and Colorado VFW experts guiding us.  We did it ending up with lines of supporters from every state at the convention to lend their support and voices.  We were told this was landmark history for the VFW.  WE did the impossible and Dean was the valuable key person that had gotten the resolution started and through each of the steps to get it even to the convention.  I had not had all the critical support to get a similar resolution through all the hurdles in Colorado in time for it to get approved to go to national convention but we combined for the critical issue and to get the job done.

WE did a first according to VFW experts in attendance and had the majority vote in the end for the resolution.  WE and they stood up to a potential problem out of an abundance of caution.  We did it because answers were not clear and out of concern for national health and protection of civilians and the blood supply it was approved as a voluntary effort by gulf war veterans that were experiencing ill health and symptoms of gulf war syndrome/illness/ chronic fatigue syndrome to not donate blood and to continue to push for diagnostic testing and research to get to final answers!

We felt that it was critical as veterans of Desert Storm who were ill to stand and protect others.  It is sad and unforgiving that the VA/DOD/ US Scientific community did not do the proactive steps of caution and hear us in the 1990-2000 time period.

NO mass media covered the national VFW Convention and this landmark action in the mid 90s.  Here it is the end of 2010 and the civilians with CFS and researchers seeking answers for CFS civilian patients are finally getting heard and effective action on the part of researchers and the world scientific communities are finally becoming engaged.  I directed you to the following two national news articles that discuss this landmark action taken yesterday on CFS and blood donation question!  They are below:

http://www.businessweek.com/news/2010-12-14/chronic-fatigue-patients-shouldn-t-give-blood-fda-advisers-say.html

December 14, 2010, 7:53 PM EST
By Rob Waters

Dec. 14 (Bloomberg) — People with chronic fatigue syndrome shouldn’t donate blood until health officials complete a review into whether the disorder is tied to an infectious agent that might spread to recipients, U.S. advisers said.

The Washington-based American Red Cross, the nation’s largest supplier of blood products, announced Dec. 3 that it won’t accept blood from potential donors diagnosed with the syndrome. Some studies have found that a virus called XMRV may be linked to the condition.

More than 1 million Americans have chronic fatigue syndrome, which leaves people exhausted and can cause joint and muscle pain, according to the U.S. Centers for Disease Control and Prevention in Atlanta.

A panel of experts convened by the U.S. Food and Drug Administration voted 9-4 today in Gaithersburg, Maryland, that the scientific evidence supports rejecting donations from people with the illness, Shelly Burgess, a spokeswoman for the agency, said in an e-mail.
THE WALL STREET JOURNAL

New Blood-Screening Advised

Advisory Panel Says
Victims of Chronic
Fatigue Syndrome Be
Barred From Donating

By AMY DOCKSER MARCUS

An advisory committee to the federal Food and Drug
Administration is recommending that people with
chronic fatigue syndrome be barred from donating
blood, amid concerns a retrovirus may be linked to
the disease.

The panel voted Tuesday 9 to 4 that the FDA should
require a screening question to ask potential donors
if they have a medical history of chronic fatigue
syndrome and, if so, exclude them from donating.

The recommendation by the panel must now be
reviewed by the FDA, which typically follows the
advice of such panels but is not required to do so. An
FDA spokeswoman said there was no timetable yet
on a final decision.

The panel’s recommendation is a significant
milestone for patients, who have often felt maligned
by the medical community.

The syndrome, which affects over one million people
in the U.S., is diagnosed based on symptoms that
include severe pain, debilitating fatigue and
cognitive difficulties. There isn’t a known cause,
however, and many patients say doctors often don’t
believe they are sick.

There has been intense interest about whether
sufferers of the syndrome should be barred from
donating blood since last year, when the journal
Science published a paper linking a retrovirus called
XMRV to the disease.

The science on whether XMRV is associated with
chronic fatigue syndrome or other diseases, causes
disease, or can be transmitted through the blood is
still hotly debated.

The AABB, an umbrella group comprising centers and
groups that collect most of the nation’s blood supply,
recommended in August that until the scientific
questions are worked out, people with chronic
fatigue syndrome should be discouraged from
donating blood.

The American Red Cross, which collects about 50% of
the nation’s blood supply, has been asking potential
blood donors since October to say whether they have
the condition and bars such patients from giving.

The panel’s recommendation, if adopted by the FDA,
goes a step further because it would include a
question about diagnosis as part of the screening
questionnaire that donors must answer before giving
blood.

The FDA regulates the nation’s blood supply and so
its decision would cover all blood centers.

The decision isn’t expected to have a big impact on
the volume of the blood supply. Susan Stramer,
executive scientific officer of the American Red
Cross, presented data to the panel based on the
experience of the Red Cross in the two-month period
since they told their centers to stop taking donations
from patients with the syndrome.

Dr. Stramer said that of one million blood donors in
this period only 34 came forward and identified
themselves as being diagnosed with it. She said this
represented only .003% of the donors.

Judy Mikovits, who led the team of researchers that
published the study in Science linking XMRV to
chronic fatigue syndrome, said Tuesday’s decision is
a victory for patients because “for the first time ever,
they are being seen as sick with an infectious
disease.”

John Coffin, a retrovirologist who was a member of
the advisory panel and voted to support a screening
question, said that he still didn’t know for certain
whether or not XMRV is associated with chronic
fatigue syndrome. But he said there was enough
scientific evidence to support the notion that at least
some cases of the condition are caused by an
infectious agent.

“Even if it turns out that XMRV is not the cause,
there might be something else and prudence dictates
a deferral of blood donations,” Dr. Coffin said.