From time to time The ME Association is asked if people with ME/CFS can donate their blood.
The current advice from the UK National Blood Service (NBS), which has been re-checked today, is that:
'You may give blood when you feel you are completely recovered and have no further symptoms and no treatment is required'
This NBS advice specifically applies to people with PVFS.
An NBS adviser has confirmed that this advice also applies to people with ME and CFS.
The NBS can be contacted on: 0845 7711 711 (UK). Website: www.blood.co.uk
We would be interested to hear from ME/CFS contacts overseas regarding the blood donation situation in other countries. We will summarise this information in a further internet posting.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
15 January 2008
MEA website: http://www.meassociation.org.uk
MEA contact email: meconnect@meassociation.org.uk
The US perspective:
Today the CDC has no formal policy on patients with CFS donating blood or
organs. CDC states that nobody who "feels unwell" should donate blood. That
would have meant that, oh, a month before my relapse with active HHV-6A, I could
have given blood - and I could have given an active HHV-6A infection to someone
on immunosuppressant drugs because of an organ transplant, for example.
Frankly, I think I could have killed somebody. Of course, the CDC does not
"believe in" HHV-6, either A or B, or the concept of remission and relapse.
That has always seemed to me to be the wrong answer. I thought that AIDS taught us one thing, at least: if we don't know what causes a disease, we SHOULDN'T be donating blood. They are still going by the old rules - if we can't PROVE there's a reason not to donate blood, well then, if you feel well enough, go ahead. Tell the blood bank and if they don't care, neither do we.
Joan Irvine always believed she contracted CFS from a blood infusion. Fifteen
years ago, she received two letters from California's Department of Health Services and the U.S. CDC about donating blood. She called them her "blood letters" and tried to get them publicized, with little success. Joan committed suicide in 1996, after the U.S.
media made fun of a woman who wanted to kill herself because of peripheral pain
and fibromyalgia - THAT woman went to Dr. Kevorkian. There were editorial
pronouncements in all the media that this was crossing the line - clearly the
woman had a mental illness and was a drug seeker.
Joan and many others (including my doctor) wrote the major news outlets
explaining that this woman was in severe pain from serious illnesses, all to no
avail. NBC suddenly announced they were revisiting the issue with new
information - we thought they were going to include what we had sent them.
Instead, they did a show interviewing neighbors who said it was always a strange
family. Despairing that our illness(es) would never receive enough serious
attention to come up with an end to her pain, Joan took an overdose of a medication she knew she was allergic to, that night.
I think Joan would have wanted her blood letters included in any public debate
on blood donation with ME or CFS.
So here is the content of her blood letters. She thought that if at one point
CDC did not think anybody diagnosed with CFS should donate blood, they should
have publicized that - which of course they did not. It is interesting to read
the difference between Dr. Rutherford's response, and that of Bill Reeves, who
has since then been the CDC point person for CFS.
Mary Schweitzer
---------------------------------------------------
Department of Health Services
State of California
January 16, 1992
Joan L. Irvine
[address]
Dear Ms. Irvine:
Thank you for a copy of your letter of December 21, 1991, to Dr. Walter Gunn of
the Centers for Disease Control. As you may be aware, Dr. Gunn retired at the
end of the year, so I am taking the liberty of responding to your question
regarding chronic fatigue syndrome (CFS) and blood donation.
There are currently no recommendations regarding the donation of blood by
patients with CFS, and there are no cases, to my knowldge, of persons who
appeared to acquire CFS following blood transfusion. On purely clinical
grounds, I would discourage individuals who are notin good health, including
those with CFS, from donating blood. This is, in fact, standard procedures in
blood banks and plasma centers. In addition, while the cause of CFS has not yet
been determined, a number of researchers have postulated that it may [be] caused
by an infectious agent or agents, such as a virus. The route of transmission of
these agents are currently unknown, but, based on our knowledge of infectious
diseases of the immune system, it is not impossible that one or more of these
suggested agents migt potentially be able to be transmitted through
blood-to-blood contact, as occurs in blood transfusions. While I realize that
this is highly theoretical and far from a concrete answer, I think that
it is best to await further research findings before resuming blood donation.
Thank you, again, for sending me a copy of your letter to Dr. Gunn. If you have
any questions, please contact me at the above address.
Sincerely yours,
George W. Rutherford, M.D., Chief
Infectious Disease Branch
State of California
==================================================
Letter 2:
CDC
January 16, 1992
Ms. Joan L. Irvine
[address]
Dear Ms. Irvine:
Thank you for your letter about Chronic Fatigue Syndrome.
Chronic Fatigue Syndrome is a clinical syndrome primarily characterized by
exytreme, debilitating fatigue profound enough to result in the patient having
to reduce activity to a level less than 50% of the activity level usually
maintained prior to the onset of illness. At present, the syndrome is diagnosed
on the basis of clinical symptoms, and by testing for and excluding the
possibility of other known medical and psychiatric diagnoses which could account
for the symptoms suffered by the patient.
At present, there is no laboratory test available to diagnose Chronic Fatigue
Syndrome. The diagnosis of Chronic Fatigue Syndrome is a diagnosis of
exclusion. That is to say, if a patient has the clinical symptoms
characteristic of Chronic Fatigue Syndrome, and no other medical or psychiatric
cause can be identified, by default they are diagnosed with Chronic Fatigue
Syndrome. There is a difference of opinion at present as to whether or not one
specific cause of the Chronic Fatigue Syndrome will be discovered, but many
clinicians and researchers in the field suspect that the Chronic Fatigue
Syndrome is a common clinical presentation resulting from multiple different
specific etiologies.
Many experimental therapies for Chronic Fatigue Syndrome have been tried. To
date, there has been no specific therapy that has been shown to be consistently
successful in good clinical trials. The only currently available therapy is
treatment of the symptoms.
Since the etiology of CFS is unknown and since it may represent a general symptom complex due to a variety of causal factors, there is at present no CDC policy concerning
donation of biologic products such as blood by CFS patients. However, since
ongoing research indicates an infectious agent may be involved in some cases of
CFS it would seem prudent to refrain from donating blood until this issue is
resolved. In any event, you should consult your local physician concerning his
or her opinion with respect to effects this may have on your health. You should
inform officials at the blood collection center that you have CFS; the blood
bank may have specific regulations concerning CFS or similar diseases.
Enclosed is an information pamphlet on CFS which will be helpful.
Sincerely,
William C. Reeves, M.D.
Viral-Exanthems and Herpes Virus Branch
Division of Viral and Rickettsial Diseases
National Center for Infectious Diseases
Centers for Disease Control
Atlanta, GA
* * *
On 9/11, I called the local blood bank about donating blood. They seemed unconcerned. CFIDS.org said only that we shouldn't donate blood because many CFS patients have low blood volume and need all they have for themselves.
Hardly the reaction you'd expect from either given the evidence that the only therapy that helps CFS is an anti-viral!
1 comment:
Scott and I gave blood an average of twice a year for a long time- until around 7 years ago when we went in to a blood drive and were told that they were no longer accepting blood from people who had been stationed in Germany. Why? Because the US military commissarys in Germany where we shopped got thier beef from England, even when there were all those reports about mad cow disease. Because we >might< have been exposed to mad cow disease, two healthy people with no other risk factors at all, one of whom had a somewhat rare blood type ( they always loved Scotts' A neg blood) were no longer permitted to donate...
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