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CFS Blood Bank Drive

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London, UK
That does not make it ethical for ME and CFS activists to employ the same tactics.

As a veteran of Feminist, Gay then AIDS activism, errr, what's 'ethical' got to do with it? Nobody is being physically harmed (except ourselves probably - I know I'll end up knackered!) and, for me, that's the primary ethical consideration.

This arguement is typical of most groups discussing possible protests, and, unfortunately, it'll probably never reach a concensus...

In my experience, most groups are made up of publicity-shy moderates, with a few attention seeking 'extremists' thrown in... Some people are good at sustained, intelligent badgering of officialdom, some people are good at doing spectactular things that get attention, and most people are good at signing petitions and making up the numbers... all avenues of protest are important. But, quite often, the outrageous stunts really are the ones that catch the attention of the media, and therefore, the public.

Do the publicity stunts - just make sure you've thought through the probable reactions and written up some red hot, intelligent, press releases to counter anything that's chucked at your way.
But don't expect too much obvious support from the 'community' - most people don't seem to want to look silly/ odd/ eccentric/ angry, even if their life depends on it!
 
First off, let me say I'm glad my post made the front page news.

Seriously, who do you know that is housebound or bedridden who can be bothered to go anywhere not absolutely required to stay alive?

Didn't I sum up the situation accurately?

No one is anonymous in anything they do that is recorded electronically. Maybe to each other, but not to the evil powers that be. Every click on your web browser is recorded directly to your home and most likely stored to your personal governmental (illegal of course) profile.

What has morality to do with any of this? Don't think you've infected anyone walking around all these years? Don't think you've exposed/infected those you've slept with "morally" or "immorally"?

Ever heard of a concept called "justice", summed up as an eye for an eye, a tooth for a tooth? How will that ever happen? WHEN has that ever happened in the history of the world? Just accurate true and "moral" justice?

As far as what I am suggesting being illegal, how can it be? Our own "Corporation of Disease Communications" says it's O.K. and not to worry, people with said malady are simply crazy.

For the record, I have an actual "officially" identified disease in Lyme (Borrelia Burgdorferi) that according to the Infectious Disease Society of America (IDSA) is easy to cure and hard to get and I'm officially cured according to them, but not in reality. In spite of research posted by the very parties running IDSA that Lyme is an incurable infection dating back to the early 1980's.

So legally, I'm doing nothing wrong or immoral according to those who rule over us by donating gallons if I so choose.

For the record, I've never donated or received blood products - knowingly.

Most of you however, have received blood products from thousands of strangers including a large number of IV drug users and homeless alcoholics and insane that donate blood for beer/drug/food money on a regular basis. In what you may ask? What do you think IVIG or IV gamma globulin shots are made of? Every single shot/IV you receive is made up of at least 1,000 anonymous (to you) donors. Read up here: http://en.wikipedia.org/wiki/IVIG

My doctor most recently re-iterated that I should be on IVIG to "boost my immune system" as I am getting infections that are common only with severely immune compromised AIDS patients. I refused. Did you know you can buy animal feed products that boost your immune system far cheaper and much, much safer? Why don't you know about that? Because the system and all those who abide by it are so moral and concerned, right?

I pointed this out to my wife who received IVIG for years in the early 80's before AIDS, Hepatitis, etc. was even being screened. She didn't know it was a blood product, as most of you likely don't. Why not? Doesn't your doctor who "cares" about you have a fiduciary responsibility to inform you of the risks inherent in the "medicine" they're pushing - er, prescribing? Apparently not.

So I've been potentially exposed via sex with my legally (and morally) married wife to every known and unknown pathogen in the blood of probably tens or hundreds of thousands of strangers many of whom are clearly sick (the homeless insane wandering the U.S. streets who donate blood, IV drug users, homeless alcoholics, and so on) whose blood "products" are being sold to the sickest of the sick to finish off the job and you're ranting about morality? Wow. Good for you! Keep up the good work! The wicked couldn't survive without you and your efforts.

So, in summary for the "moral", you really don't have a dog in this fight now do you? What do you suggest that has been working so wonderfully all these years?

And I didn't even suggest donating blood for money, even though those who you donate to make money off the deal. Lots and lots of money. That's their moral obligation of course, because they clean the blood up and made it marketable. So don't blame them.

In a world of lies, the truth is a radical and dangerous thing, isn't it?

In the end, the questions are banal, simplistic ones: "What are you willing to do to survive?" "What are you doing to keep others from being infected?" "Are any of your approaches effective?"
 

V99

Senior Member
Messages
1,471
Location
UK
I like to educate people. They may choose to believe I am mad, but once certain information is presented to them, I will sound amazingly clear headed and sane. That in turn puts them on our side and a part of the fight.
 

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
Moderator: Some clearly did not see this as a joke for the reasons others have eloquently stated. For the record, the forum rules state clearly that "It is not permitted to advocate, encourage or condone physical violence, threats of violence, or harassment against anyone, whether members of this forum or not." If we believe (and we do) that donating blood would be harmful to others, and we threaten to do that, we are condoning violence. This is not the first such thread to suggest, whether in humour or not, that we should further infect the blood supply.
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
We can fight all day, or we can save our precious energy to get productive things done instead.

CFL, as a fellow member I humbly request that you remember that directing your passionate indignation towards PWCs who disagree with you can cause the recipients much stress to the point of physical harm due to CFS, as I'm sure we're all aware. You're clearly educated on some things that would be beneficial for us to know about, but when hidden within a sarcastic, bitter, insulting post it makes for a difficult read.

Please do not take offense that some people are very uncomfortable with the thought of knowingly infecting another human with this horrible illness, even if it is legal, even if "everyone does it" (pertaining to your claims that various people groups society considers unsanitary donate often), and even if we've unknowingly infected a large amount of people already. "Do to others what you would have them do to you" is pretty universal as far as morals go, and I doubt any of us would want a PWC or lyme patient doing it to us, were the shoe on the other foot.

You've got the urge to be an activist through protest, and you seem to even relish the controversy, which can be a great asset to the cause if pointed in the right direction. However stirring up a hornet's nest here is only going to weaken us as a whole.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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3,061
Location
UK
We can fight all day, or we can save our precious energy to get productive things done instead.

CFL, as a fellow member I humbly request that you remember that directing your passionate indignation towards PWCs who disagree with you can cause the recipients much stress to the point of physical harm due to CFS, as I'm sure we're all aware. You're clearly educated on some things that would be beneficial for us to know about, but when hidden within a sarcastic, bitter, insulting post it makes for a difficult read.

Please do not take offense that some people are very uncomfortable with the thought of knowingly infecting another human with this horrible illness, even if it is legal, even if "everyone does it" (pertaining to your claims that various people groups society considers unsanitary donate often), and even if we've unknowingly infected a large amount of people already. "Do to others what you would have them do to you" is pretty universal as far as morals go, and I doubt any of us would want a PWC or lyme patient doing it to us, were the shoe on the other foot.

You've got the urge to be an activist through protest, and you seem to even relish the controversy, which can be a great asset to the cause if pointed in the right direction. However stirring up a hornet's nest here is only going to weaken us as a whole.

What Dainty said.

And please do not assume, CFL, that everyone on these forums is a patient.

There are UK advocates on these forums advocating on behalf of sick kids, teenagers or young adults.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
As a veteran of Feminist, Gay then AIDS activism, errr, what's 'ethical' got to do with it? Nobody is being physically harmed (except ourselves probably - I know I'll end up knackered!) and, for me, that's the primary ethical consideration.

You've missed the point.

I cannot morally/ethically condone deliberate intent to infect the blood supply of any country, whatever that country's policies on donation might be.

But I am not opposing protests, per se.

What I am objecting to is "loose" talk of intention to donate potentially infected blood, posted in irony, which might then be taken out of context and used against us or used against our CFS and ME children.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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3,061
Location
UK
And please, CFL, do not make any assumptions in public forums about my XMRV status.

I contribute to these forums, to other forums and maintain several websites under my own name.

I am a primary carer of a young adult who has not been tested for XMRV.

And neither have I.

So I don't know whether the person for whom I care is positive or not.

I do not know whether I, as a relative, am positive or not.

And you don't know that, either.

Suzy Chapman
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Moderator: Please can we have an end to all these threats to donate blood? For a start, threatening anyone, whether in this forum or not, is against forum rules. Secondly, it is just so immoral that I am lost for words.

Nope, I appear healthy, so I can donate blood! I still work, I think Cort probably appears healthy and he could donate blood if he wished?! This is not against any law(s) that I know of!

Whom am I specifically threatening?

What is immoral is that people have been left to suffer for a GENERATION and counting!!
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
CFL wrote:

What has morality to do with any of this? Don't think you've infected anyone walking around all these years? Don't think you've exposed/infected those you've slept with "morally" or "immorally"?

So CFL, since I am not an ME or CFS patient, myself, and since you are in no position to make any assumptions about what my XMRV status might be, or how many of those I have slept with I may or may not have infected, and since I publish under my own name and since I object to both your tone and your presumptuousness would you like to review your statement above?

Thank you,

Suzy Chapman
 

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
Nope, I appear healthy, so I can donate blood! I still work, I think Cort probably appears healthy and he could donate blood if he wished?! This is not against any law(s) that I know of!

Whom am I specifically threatening?

What is immoral is that people have been left to suffer for a GENERATION and counting!!

Moderator: Once again, you know that we have been advised not to give blood. You know there is a risk to the population. And for what it's worth, it doesn't matter what the authorities have done to us for a generation. It is no excuse for deliberately trying to infect innocent people. If this continues, I will close the thread. Far too many complaints are coming in from far too many entirely different people.
 

kurt

Senior Member
Messages
1,186
Location
USA
MODERATOR

While it is true that XMRV has not been proven to cause disease yet, it is certainly a real virus and is present in some people and it can in theory cause serious harm. Threatening to harm innocent people in order to score political points is not an ethical or useful approach to changing CFS policy.

If you just need to vent your frustration about XMRV research and/or politics, please find a way that does not violate the rules here.

While Martlet might let this thread continue as long as there are no more threats I see no purpose in letting discussion continue about such an anti-social idea.

Thread Closed due to violation of forum rules about making threats (to the public). Also, please note that any new thread that attempts to continue this one will also be closed or deleted.
 
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