Is it time to take the pledge to NOT donate blood?

[srmny]

Hi alphahusky,

We will NOT even be threatening to give blood. But you got everything else right.

Initially I had thought we could address the "possibility" of our giving blood, collect signatures throughout the month of May and then on May 31st announce our decision. I had thought the decision to NOT give blood was implied but, from the responses I received, it was not. The responses were pretty vehement and so this petition will not include any references to the act of donating blood. It will only explain that we can legally donate blood and we see that as a problem. There have been many comments about people who might not know they are physically sick (diagnosed with depression or told your health is perfect) and I do think we should include them as a real threat to our blood supply too.

I think if people read this thread from the beginning it is a good example of a lively discussion that involved a lot of give and take and hopefully no hard feelings. This is a very touchy subject and every discussion I have ever seen about the blood supply gets heated. There have been MANY good ideas presented. I have only picked up on those that worked with the idea of a petition but that does not mean that we should not follow up on all the others.

Many of the ideas involved some type of blood bank protest. The good news is that WORLD BLOOD DONOR DAY is JUNE 14th! If Dr. Holmberg fails us and does not ban our blood, we can both petition the government and plan protests in all the countries that have not banned our blood on June 14th. There is the opportunity to ask people to donate a pint for us, since we would like to but we don't want to risk the public health and wheel out some cots and have a "lie-in" (definitely need a better name or maybe that is grammatically incorrect)?

 

[jackie]

I have two questions...WHY are other countries (the ones that are) banning blood donations...and WHY is the U.S. (and many other countries) NOT? What SPECIFIC INFORMATION has CONVINCED those countries of the DANGER?

I was puzzled about the reticence on the part of National Blood Banks - regarding the potential threat to the safety of the Blood supply (I realize they take their orders from NIH, for one...but who else? can't remember the acronym!).

After reading about some of the more common (apparently) screening practices...the fog is lifting for me! Pretty alarming!

(Also...I recently read the statement claiming that "xmrv" was not going to preclude "us" from donating...here on the forums - but i can't seem to find it now! from the CAA?)

I'm waiting for the final decision at the cfsac mtg (but not holding my breath...after reading these statistics!)

I looked up some of the criteria used for blood donor screening. Pretty shocking from our perspective. In testing for Transfusion Transmitted Infection, The World Health Organization recommends 4 "core" tests
1.Hep B surface Antigens
2.Antibody to Hep c
3.Antibody to HIV (often subtypes 1 & 2)
4.Serologic test for Syphilis

***The WHO reported (in 2006) that 56 of 124 countries surveyed - DID NOT use these basic tests on ALL Blood donations!***

Additional testing is expensive (and in some cases the tests are not implemented BECAUSE of costs).

Depending on location, sometimes a "special test" such as West Nile Virus is used.

Sometimes p24 Antigen or HIV Nucleic Acid test can be used (in addition to the "core" HIV tests)...for the newly infected.

Cytomegalovirus is a special case in donor testing - in that many donors WILL test positive for it. They say..."The virus (CMV) is not a hazard to healthy recipients, but can harm infants and other recipients with weak immune systems." (it's certainly harming ME!)

For many years prior to my dx, my husband and I had been on the National Registry for Blood donations/platelets. My husband, in particular, is in great demand as he has the rarest of blood types. As a matter of fact...he just received a letter asking him to come in for platelet retreival. He hasn't responded (he will NOT donate and will explain why - but as he hasn't been tested for xmrv, and is not ill with me/cfs (as I am) - it will be interesting to see what their response is! I wonder if they will try to convince him it's ok!?(won't work!) I, of course, have NOT donated since I got my "official" me/cfs dx about 15 yrs ago.

It's awful to think of who might be sick because of me, and although I've been reassured time and again (by my own docs), that I'm no longer "contagious"...I live with very little or modified intimacy/close contact with all the people in my life!...husband, children, grandchildren, parent, and siblings. Just in case.

(btw - I'm dx'd with me/cfs/chronic enteroviruses/chronic re-activated VZV, HSV-1/CMV/EBV (haven't yet been tested for xmrv - but I have a feeling I'll be +!)...and the "choice" to donate is still being left up to me (with simply a "caution" against it!) I don't get it at all!....but the WHO's take on things is enlightening.

I just noticed I've been typing this darn post for hours while others were posting!...but i agree, maybe blood banks would be the best targets for our concerns (as well as trying to find out WHY the waffling on the safety issue!?) j:Retro smile:

(I wish we had a "button" to wear...explaining WHY no one with me/cfs will EVER DONATE BLOOD!...of course since I'm housebound, nobody would see it but me!)

 

[serenity]

if certain posts are left as they are written originally such as the one about wearing scary costumes for the press or the first one where we are clearly urged to donate our blood (or at least threaten to), i will have to ask to be removed from the forum.
(i have sent this message to the mods).
i will not stay & be associated with this kind of talk in any way.

 

[srmny]

danib,

Again, I do not believe that anyone was "urged" to donate their blood. Please reread the thread from the beginning.

I am sorry you feel so uncomfortable about this issue and I am sure you are not alone. I am concerned I will spend much of my limited energy writing a petition people will be afraid to sign. I hope that everyone will read the thread from the beginning because every time someone posts an inaccurate description of what I am proposing someone new to the thread overreacts.

I am hoping a moderator is reading this and can alert someone to rename the thread - Is it time to take the pledge to NOT donate blood?

As I told you before, I am sorry that this makes you so uncomfortable but by merely being a member of PF you are not associated in any way with any petition that is not yet written. The way this is going I am not going to have enough energy left to write it!

The real question is are people going to be willing to sign it? I have no intention of including any references to any means of contagion other than blood donation. But how many of us really don't want our family, friends and neighbors to know that we "might" be carrying a virus and we don't really know if we can spread it to them or not?

I think this is the real problem when trying to advocate for this illness. We are not just too weak to speak out, we are also afraid to speak out. We are afraid we have unknowingly exposed our families and friends, afraid we will punished by our government and targeted for loss of benefits and medical care, and afraid that if we are strong enough to protest our governments will say we should use that energy and go to work.

But I believe that we are going to have to deal with all of this in the near future anyway. As they say in political circles, I think we need to "get out in front of it".

 

[dannybex]

what about the healthy XMRV+ folks?

Many of the ideas involved some type of blood bank protest. The good news is that WORLD BLOOD DONOR DAY is JUNE 14th! If Dr. Holmberg fails us and does not ban our blood, we can both petition the government and plan protests in all the countries that have not banned our blood on June 14th. There is the opportunity to ask people to donate a pint for us, since we would like to but we don't want to risk the public health and wheel out some cots and have a "lie-in" (definitely need a better name or maybe that is grammatically incorrect)?

I too understand your frustration and anger srmny, and your point that people diagnosed with CFS/ME should probably be told not to donate blood (I don't think I have any blood to donate!), but here's my questions:

What about the 10-12+ million people who have XMRV in the US, but are healthy? Should they donate blood too?

How could they possibly be screened if there isn't a reliable, inexpensive test yet?

 

[serenity]

But I think we should start an online petition - take the pledge. I pledge to "celebrate" International ME/ CFS Month by going to my local hospital and donating my blood. I envision we could have hundreds of signatures by the end of the month and on May 31st we will pledge to donate our blood to our country's blood supply UNLESS my government steps up and protects the blood supply.

We can consider how we will act up to May 31st but as we think it over the petition will get more signatures and, hopefully, some press. Of course, the ultimate goal is to NOT give blood. But we will have all month to consider our actions and hopefully

please read what you wrote, if it stands - it & the post written by JustinReilly i will leave. if this is the legacy left in history by the Pheonix Forums i want no part of it.
i have thought of this forum as informative & intelligent. i never thought they would allow anyone to stoop to threats of terrorism.
yes i have fears, fears that are very real. i do not need my community making them more real by acting inappropraitely & giving the world a reason to hate us.

 

[Sasha]

Again, I do not believe that anyone was "urged" to donate their blood. Please reread the thread from the beginning.

srmny, in your first post that opened this thread, you wrote this:

"But I think we should start an online petition - take the pledge. I pledge to "celebrate" International ME/ CFS Month by going to my local hospital and donating my blood. I envision we could have hundreds of signatures by the end of the month and on May 31st we will pledge to donate our blood to our country's blood supply UNLESS my government steps up and protects the blood supply.

We can consider how we will act up to May 31st but as we think it over the petition will get more signatures and, hopefully, some press. Of course, the ultimate goal is to NOT give blood. But we will have all month to consider our actions and hopefully, there will be some other interested parties - doctors, scientists, government officials, and the PRESS.

Am I the only one angry enough to take the pledge?"​

I think that one possible reading of this would be that you meant people to carry out the threat - you may not have intended it to mean this but I think there's an ambiguity that arises because of "Of course, the ultimate goal is to NOT give blood. But we will have all month to consider our actions..." It sounds as though although you would start off with the aim of not donating you would be reserving the right to change your mind on consideration of what reaction you get.

I think your subsequent posts have made it clear that you didn't mean this but I can see how people could have read that first post and thought otherwise.

I think you make good points in your most recent post about why people would be reluctant to sign a petition that highlights that we may or may not be carriers of a dangerous disease. I'd prefer to see the science get clarified on XMRV -which it must over the next few months - at which point things will naturally take their course in relation to the blood supply.

 

[srmny]

Dannybex, your question is a good one and I can't answer it. But if I consider the PURPOSE of a petition promising to NOT donate blood and perhaps calling on others to join us in NOT donating blood, it is not germane. We are "using" the blood donation issue to inform the public that our government is not taking care of PWCFS and it is not protecting the blood supply from the disease ME/CFS.

Yes, if we are lucky we may incite some anger toward the government agencies in charge of protecting the blood supply, but we are only trying to warn the public. I believe that if we remain silent on the issue there is the chance that the public will think we were no better than the government.

 

[dannybex]

srmny, in your first post that opened this thread, you wrote this:

"But I think we should start an online petition - take the pledge. I pledge to "celebrate" International ME/ CFS Month by going to my local hospital and donating my blood. I envision we could have hundreds of signatures by the end of the month and on May 31st we will pledge to donate our blood to our country's blood supply UNLESS my government steps up and protects the blood supply.

We can consider how we will act up to May 31st but as we think it over the petition will get more signatures and, hopefully, some press. Of course, the ultimate goal is to NOT give blood. But we will have all month to consider our actions and hopefully, there will be some other interested parties - doctors, scientists, government officials, and the PRESS.

Am I the only one angry enough to take the pledge?"​

I think that one possible reading of this would be that you meant people to carry out the threat - you may not have intended it to mean this but I think there's an ambiguity that arises because of "Of course, the ultimate goal is to NOT give blood. But we will have all month to consider our actions..." It sounds as though although you would start off with the aim of not donating you would be reserving the right to change your mind on consideration of what reaction you get.

I think your subsequent posts have made it clear that you didn't mean this but I can see how people could have read that first post and thought otherwise.

I think you make good points in your most recent post about why people would be reluctant to sign a petition that highlights that we may or may not be carriers of a dangerous disease. I'd prefer to see the science get clarified on XMRV -which it must over the next few months - at which point things will naturally take their course in relation to the blood supply.

I agree Sasha. And again, wonder how could the blood supply be protected if we haven't any idea who has XMRV when they're giving blood?

 

[dannybex]

Dannybex, your question is a good one and I can't answer it. But if I consider the PURPOSE of a petition promising to NOT donate blood and perhaps calling on others to join us in NOT donating blood, it is not germane. We are "using" the blood donation issue to inform the public that our government is not taking care of PWCFS and it is not protecting the blood supply from the disease ME/CFS.

Yes, if we are lucky we may incite some anger toward the government agencies in charge of protecting the blood supply, but we are only trying to warn the public. I believe that if we remain silent on the issue there is the chance that the public will think we were no better than the government.

Hi -- we were posting at the same time. Again, I understand you anger, but I am just imagining a backlash could happen, since the XRMV connection isn't yet fully understood, and some might bring up the same question I did -- what about 'healthy' folks with XMRV.

Perhaps Donnica Moore, WPI's spokesperson could be persuaded to talk about this on GMA sometime this month?

 

[Sasha]

Hi -- we were posting at the same time. Again, I understand you anger, but I am just imagining a backlash could happen, since the XRMV connection isn't yet fully understood, and some might bring up the same question I did -- what about 'healthy' folks with XMRV.

That's a very good point, dannybex - healthy people with XMRV outnumber us about ten to one, even assuming everyone with ME is XMRV+ (we are 0.4% of the population and according to the Science study, 4% of the healthy controls were XMRV+).

 

[jackie]

Dannybex...pretty darned confusing...isn't it?! I've had numerous discussions with my docs about transmissibilty issues (both in the context of the viruses we KNOW I have, and the stages they are in....and the docs stances on the science behind the XMRV transmission issue....sometimes we go round and round!)

I sure wish I could remember/understand all the things we said - and felt clear in my own mind. I can't -my instinct tells me that I'm as contagious as hell!....on all accounts. But at this point does the science really point to that? (and with all viruses - there is a time when contagion is an issue, and a time when it no longer is - other than re-contamination - depends on which ones you have!) and folks that we rely on to guide us - aren't talking, so I have to assume this is another of those "unknowns" so common with me/cfs....if we are being given the truth as they see it.

For me...I'm not taking any chances - I tell people that I simply DONT know - that because I'm not yet sure, I can't risk their health, that I don't EVER donate blood, and I minimize close intimate contact (unfortunately, the way I assume an HIV positive person would take precautions) and I do this at the risk of a certain amount of natural "avoidance" - even ostracism - on the part of those around me....because my conscience dictates that I do this.

A double-edged sword...they still don't take my disease (me/cfs) seriously - but they sure don't want to "catch" it!

Heck of a way to live! And I want answers NOW! I wonder about putting MORE pressure on the WPI, the WHO, researchers and scientists working on this issue....for some clear-cut decision (or is that what we are waiting on the cfsac may 10th meeting for?).

Again, maybe I've missed this info somewhere on the forums...but WHY are some of those European countries banning Blood donations? What are the official REASONS? WHY THEM...but NOT the U.S.?anyone have a link we can scrutinize?..(with the wording of their decision?)

Healthy folks/those that DON'T know.....BIG Q!!! (and who to trust to have the RIGHT answer!) jackie

 

[kurt]

Dannybex...pretty darned confusing...isn't it?! I've had numerous discussions with my docs about transmissibilty issues (both in the context of the viruses we KNOW I have, and the stages they are in....and the docs stances on the science behind the XMRV transmission issue....sometimes we go round and round!)

I sure wish I could remember/understand all the things we said - and felt clear in my own mind. I can't -my instinct tells me that I'm as contagious as hell!....on all accounts. But at this point does the science really point to that? (and with all viruses - there is a time when contagion is an issue, and a time when it no longer is - other than re-contamination - depends on which ones you have!) and folks that we rely on to guide us - aren't talking, so I have to assume this is another of those "unknowns" so common with me/cfs....if we are being given the truth as they see it.

For me...I'm not taking any chances - I tell people that I simply DONT know - that because I'm not yet sure, I can't risk their health, that I don't EVER donate blood, and I minimize close intimate contact (unfortunately, the way I assume an HIV positive person would take precautions) and I do this at the risk of a certain amount of natural "avoidance" - even ostracism - on the part of those around me....because my conscience dictates that I do this.

A double-edged sword...they still don't take my disease (me/cfs) seriously - but they sure don't want to "catch" it!

Heck of a way to live! And I want answers NOW! I wonder about putting MORE pressure on the WPI, the WHO, researchers and scientists working on this issue....for some clear-cut decision (or is that what we are waiting on the cfsac may 10th meeting for?).

Again, maybe I've missed this info somewhere on the forums...but WHY are some of those European countries banning Blood donations? What are the official REASONS? WHY THEM...but NOT the U.S.?anyone have a link we can scrutinize?..(with the wording of their decision?)

Healthy folks/those that DON'T know.....BIG Q!!! (and who to trust to have the RIGHT answer!) jackie

Jackie - I totally agree, there is evidence but we do not have concrete answers. XMRV has not yet been validated for CFS and even though there are rumors it will be there are also rumors that many high quality labs can not find XMRV even using the best testing methods. So there is still something yet to learn about XMRV. But we do not have to rely on XMRV, there is common sense, and also research that shows CFS patients have a host of co-infections, most of which are communicable at some level. I stopped donating blood when I learned about the common co-infections in CFS including mycoplasmas, HHV activation and often Lyme Disease. Given that I have some symptoms of all three of those, there is no way I should donate blood, XMRV is not even required for that, just common sense.

As for a message for the public, I would not use XMRV right now as the only reason to stop CFS patients from donating since it remains controversial in the scientific world. Rather, I think something like the following is a better approach:

"CFS still has an unknown cause, there are known immune system problems, and many common co-infections including HHV6, Borrelia and mycoplasmas, and new evidence suggests the possibility of a retrovirus called XMRV. Do you really want all that in the blood supply? Support CFS awareness and help us find a cure."

That approach would teach people more about CFS.

 

[srmny]

Sasha,

"I think that one possible reading of this would be that you meant people to carry out the threat - you may not have intended it to mean this but I think there's an ambiguity that arises because of "Of course, the ultimate goal is to NOT give blood. But we will have all month to consider our actions..." It sounds as though although you would start off with the aim of not donating you would be reserving the right to change your mind on consideration of what reaction you get."

I was actually trying to leave the question open ended and reserving the right to make people nervous but NOT ever considering donating any of our blood. I think where I miscalculated was not considering that some people might not understand that no one would be giving blood. I should have since I generally take everything so literally - my family laughs at me for being naive. I assumed that anyone who had this disease would know that no one would ever knowingly expose the blood supply to this god awful disease. I have had this disease for a little more than 15 years and I have only just found the courage to refer to it as a disease. It was not that long ago that people would jump on you for calling it anything other than an "illness" which is not that far from an "illness belief".

As I get older and realize that I am not getting better (not necessarily sicker- the disease is just moving around attacking different body systems), I can't help but wonder if I had not been so afraid could I have stepped up, spoken out and helped make a change. Where was I when Dr. Bell and Dr. Cheney were fighting for me? I have not gotten any less sick but I have learned how to operate within my energy envelope and I think my voice needs to be heard. All of our voices need to be heard. I can 't help but feel that by not taking any action, we are still cowering in the corner.

 

[serenity]

this is not gettin any better. many folks have made many good points that aren't being listened to by some. perhaps we need to think about whether or not someone who can't hear what the majority are saying is the person for the job?
i want no petition in my name written by someone who can't understand that "making people nervous" is a bully tactic.
i want out & have told the mods to please delete me, i am waiting for this to occur.
i will gladly delete myself if anyone can tell me how?
thanks.

 

[Sasha]

this is not gettin any better. many folks have made many good points that aren't being listened to by some. perhaps we need to think about whether or not someone who can't hear what the majority are saying is the person for the job?
i want no petition in my name written by someone who can't understand that "making people nervous" is a bully tactic.
i want out & have told the mods to please delete me, i am waiting for this to occur.
i will gladly delete myself if anyone can tell me how?
thanks.

Danib, I think the consensus of the thread has moved to a point where no-one is now considering making any kind of threat, and I think you have helped to achieve this by voicing your objections. I think it would be good for your arguments to remain where people can see them, although that's completely up to you, of course. I hope you won't leave the forum.

 

[jackie]

Kurt...I like your "message" to the public...the wording is good, imo! The "help us find a cure" message is not being used often enough (imo)...more often, pleas to public venues focus on TREATMENTS. (necessary, of course, but I'd like a CURE, thank you very much!) So..."Advocate" whenever and wherever we can...every bit of info we can spread as awareness can add up.

BTW - I use "me/cfs" because my I.D. Doc uses it...but my other two docs stick with CFS - as there is NO billing code for me/cfs!

(oh heck...when am I going to learn how to link and do the blue-highlight-box-thingy???) jackie



Just noticed.........Posted in "Media" topics "Finally, a positive response..." new form(?) letter re: blood supply question

 

[justinreilly]

if certain posts are left as they are written originally such as the one about wearing scary costumes for the press or the first one where we are clearly urged to donate our blood (or at least threaten to), i will have to ask to be removed from the forum.
(i have sent this message to the mods).
i will not stay & be associated with this kind of talk in any way.

Danib,

I don't understand what your objection is to my 'scary costume' idea. It's basically a public service to alert people to the danger they face. We already have the disease. I wish stuff like this was done before as then public awareness might have proded Congress and the health agencies to actually act and a cure might be a little bit closer. Fear of speaking out has crippled us all.

Anyway this idea would take some energy to do and noone else have voiced they are for it, so I don't see the problem.

 

[dannybex]

interesting...

I sure wish I could remember/understand all the things we said - and felt clear in my own mind. I can't -my instinct tells me that I'm as contagious as hell!....on all accounts. But at this point does the science really point to that? (and with all viruses - there is a time when contagion is an issue, and a time when it no longer is - other than re-contamination - depends on which ones you have!)

That's interesting Jackie. I have the exact opposite instinct -- that we're not very contagious at all. Again, more 'healthy' people have XRMV than those with ME/CFS, and when it comes to all the other viruses, bacteria, etc., etc. -- most people's immune systems are 'balanced' and so they don't become chronically ill. Their cellular immunity attacks the virus (or whatever) they get a fever to burn off the bugs, or get a raging sinus infection (basically a symptom of a healthy immune system) and get over it within a week or two and go back to work.

Now maybe XMRV does disrupt the immune system...but I don't know...I just have a feeling there may be other factors -- multiple 'triggers' -- that throw the immune system into the Th2 mode, and leave it stuck there -- that are also a part of this FRUSTRATING puzzle.

I guess the other countries are playing it safe -- a good thing -- in banning donations from PWC's. Personally, I don't feel like i have any blood to donate, even if they wanted it, as a majority of PWC's are about a liter low already.

just my two cents.

d.

 

[srmny]

I am afraid I have to agree with jackie on this - I feel like we are incredibly contagious. I have never known any one else with ME/CFS (other than patients I have met in doctor's office or at meetings) but I became ill a couple of years after my husband was diagnosed with non-hodgkins lymphoma. I suspect we may find out someday that we did infect people but perhaps their bodies had a different reaction to the virus?