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

[kurt]

srmny,
I like the idea of some type of protest. But would not support a PR stunt like a threat to infect the blood supply, that would be viewed by some people as a type of terrorism. We do not need that type of identity. Anyway, I see you have moved past that original idea.

Having lived much of my life in the DC area, including as a teenager during the Watergate and Vietnam protest era, I have thought over the types of protests people could make that would be successful for CFS. We would want to communicate more than just that we are angry, I think we need to teach people about CFS. Here are some ideas:

Walkathons might be interesting, that can also raise money as well as bring awareness, and we could say that every mile walked was for a CFS patient who can not endure walking anymore. And we would want at least a million miles to be walked for that. That raises awareness, and maybe could increase sensitivity.

Sit-ins or stand-up protests are well beyond CFS patient endurance. But what about a lay-in? Or even a sleep-in protest? Ask people to sleep-in on a given day as a type of solidarity. I think a lot of people would love that and find it even a bit humorous as a stunt. National sleep-in day for CFS. And ask everyone to stay in their beds, like it or not, at least until noon.

Here is one that might really raise some eyebrows. National CFS Week, asking people to live a CFS lifestyle for a full week, perhaps also a fund-raiser. Could anyone actually even do this? I would love to set out how they would have to live that week and see if activists might 'get the idea' what CFS is really like.

Or how about sensitivity training for doctors where they dedicate a full week of their time to serving housebound and bedridden CFS patients. Most interesting would be for them to follow one of their CFS patients for two or three days, maybe they would finally 'get it' about things like PEM. Of course not many doctors would do this, but if you had a camera crew with a few who actually did maybe that would make an interesting spot on some TV weekly like 60 minutes.

There are many positive ways to raise awareness like this. Even a 'lay-in' somewhere in DC or in Atlanta at the CDC main gate. There are activists who just need a cause and they will protest, this is a well known fact in the DC area among those involved in public issue PR. So tell them to spend a few days as 'lay-in' protestors, in front of some federal buildings perhaps, wherever it is legal (I hope this is still legal!). So the protesters bring a cot and lay down, while holding a sign of some type about CFS and someone else hands out leaflets, etc.

 

[valia]

Hi valia,

I think that is a good idea. The question is, can we realistically do it? The last time I tried to "protest" I managed to sit for 7 hours for 2 days. But it took me weeks to get back on my feet. It might work if there is something like a national blood bank day where people are lined up to give blood. I can rally for one day but if I start trying to routinely rally (multiple days) I can relapse for a year or more. I think this is the main reason we are so poorly organized. That and many people live in fear of losing their benefits.

Yes it would certainly cause problems for most of us, but what about the idea of petitioning the public rather than the patients?

 

[V99]

How about asking none CFS people to donate blood on behalf of a CFS patient? After all we cannot

 

[valia]

How about setting up an online petition, we could all help by posting it on other groups/forums not only M.E ones, we could use it as a signature on our emails, go viral (whatever that means?) so we would not only be collecting signatures to the petition but informing people of M.E, XMRV and the fact that our governments are not protecting the blood, which means them.

 

[oerganix]

Thanks for the moral support valia. I agree with you completely.

V99, I actually kind of like your idea. Let's pledge to not donate blood and count how many live's we spare from this horrible disease? Although I would not know how to figure out how many lives = pints? I think that your wording would make everyone more comfortable with the pledge.

Yes, if we could make a big point that we are not donating blood and we are not donating blood because we don't want anyone else to have to live the kind of life we live with: being ignored or ridiculed by our government, our doctors, our families, etc. Then if we've got their attention, sock it to 'em with the message of research disparity, research disparity, research disparity.
From another post, info from the NIH website:

At this point in time, my government spends more on erectile dysfunction research than on CFS.

Diseases getting more $$ than CFS: (Scheduled to receive $5 million next year. $5 million is what the Whittemore family spent to start the WPI.)

AGING (Is that a disease? We who have CFS die about 15 yrs. earlier than normal): $3172 million

ARTHRITIS: $259 million

AUTOIMMUNE DISEASE: $923 million
(since CFS is thought by many to be all or partly involved in the immune system, why isn't some of this money going to CFS research?)

BATTEN DISEASE: $6 million (why is this getting 20% more than CFS?)

COOLEY'S ANEMIA: $22 million

CYSTIC FIBROSIS: $90 million

DYSTONIA: $ 17 million

FIBROMYALGIA: $12 million

FRAGILE X SYNDROME: $ 29 million

HEALTH DISPARITIES: $ 2970 million

HIV/AIDS: $ 3184 million

HOMELESSNESS: $17 million
(Many CFS sufferers have become homeless)

INFERTILITY: $ 82 million
(Many CFS sufferers have had to avoid having children)

LUPUS: $ 121 million

LYME: $ 26 million

MALARIA: $116 million (1,300 cases in the US, per CDC !!!) (At least a million CFS sufferers, up to 10 million by the Reeves definition, in the US alone!!! Millions more worldwide...)

The only diseases/illnesses that receive less research money are hay fever, Pick's Disease, and vulvodynia!!

 

[srmny]

Kurt, I am most interested in public awareness right now and I think we need to tell the story the CDC does not want told. We have a horrible disease that never goes away and makes our lives miserable. You (the public) do not want this disease and you have a vested interest in telling your government you do not want this disease!

So, first I want to make them aware of my horrible disease. V99, I really like your new twist on the donate blood angle but, call me jaded, I don't think we can convince people to donate blood for us in big enough numbers to draw attention to the ineptitude of the CDC.

Valia, that is really where I was going when I first got the idea. A petition, but I got tripped up on who we present it to. Could we collect signatures on a petition that "accuses" the government of not protecting the blood bank and exposing its people to this horrible disease devoting a paragraph to the incompetence of the CDC and a paragraph to the desperate nature of the disease. We can collect signatures and after each signature put the number of years ill and then have a platform to add up the total number of years of disability and total cost to the economy. By the way, thanks for the link to Hillary - it was very informative.

oerganix, there is certainly room for a couple of paragraphs about research disparity in dollar values.

So we would be saying that because your government has failed to protect you, the public, from this disease by not protecting the blood supply and intentionally shutting down scientific research into the cause of this disease, we are speaking up warn you to tell your government they must protect the public from this dread disease.

 

[valia]

If we let people know what it is like to have our disease, tell them about XMRV, that other countries have already banned M.E patients from donating, then ask if they want our blood, cos that's what they could be getting if no action is taken....who wouldn't sign?

 

[srmny]

valia,

I totally agree with you - if the PWCFS "accuse" the CDC of failure to protect the public everyone can sign it. We could start collecting signatures on the ME/CFS websites and the PWCFS could ask their friends to read and sign. We would be both educating and protesting while scaring people into writing their congress person. If we get enough signatures we could send a copy to every member of Congress or the new head of the CDC and HHS? Who do you think we should be sending it to in the UK?

 

[Victoria]

thank you for being willing to consider V99's version. i am afraid i would have to be much quieter about my illness, & remove myeslf from this group if talk of starting a war against the normals was tolerated.
i find this disturbing & scary, & i do not wish to be lynched. i can't be associated with that kind of talk or behavior in any way.
i am relieved you are happy about V99's idea.
that seems a lot more reasonable.
again, i understand the anger. but let's not let it get too far out of control.

I'm with you danib.

I don't believe "starting a war" against normals is helpful.

As far as I'm concerned, I want to look after myself & make a better life for myself. To do this, I believe letting go of negative emotions is the way to go.

There are lots of ways to communicate your feelings (than making threats to Mr & Mrs General Public).

 

[V99]

Yea, probably difficult to get others to donate for us.

Perhaps it needs to be an international effort. The same point hammered home to every country not yet banning CFS blood. Use the same template. Just change the name of the recipient. Also send it to every major newspaper, tv station, etc.

 

[Victoria]

Some great ideas, Kurt,

srmny,
I like the idea of some type of protest. But would not support a PR stunt like a threat to infect the blood supply, that would be viewed by some people as a type of terrorism. We do not need that type of identity. Anyway, I see you have moved past that original idea.

Having lived much of my life in the DC area, including as a teenager during the Watergate and Vietnam protest era, I have thought over the types of protests people could make that would be successful for CFS. We would want to communicate more than just that we are angry, I think we need to teach people about CFS. Here are some ideas:

Walkathons might be interesting, that can also raise money as well as bring awareness, and we could say that every mile walked was for a CFS patient who can not endure walking anymore. And we would want at least a million miles to be walked for that. That raises awareness, and maybe could increase sensitivity.

Sit-ins or stand-up protests are well beyond CFS patient endurance. But what about a lay-in? Or even a sleep-in protest? Ask people to sleep-in on a given day as a type of solidarity. I think a lot of people would love that and find it even a bit humorous as a stunt. National sleep-in day for CFS. And ask everyone to stay in their beds, like it or not, at least until noon.

Here is one that might really raise some eyebrows. National CFS Week, asking people to live a CFS lifestyle for a full week, perhaps also a fund-raiser. Could anyone actually even do this? I would love to set out how they would have to live that week and see if activists might 'get the idea' what CFS is really like.

Or how about sensitivity training for doctors where they dedicate a full week of their time to serving housebound and bedridden CFS patients. Most interesting would be for them to follow one of their CFS patients for two or three days, maybe they would finally 'get it' about things like PEM. Of course not many doctors would do this, but if you had a camera crew with a few who actually did maybe that would make an interesting spot on some TV weekly like 60 minutes.

There are many positive ways to raise awareness like this. Even a 'lay-in' somewhere in DC or in Atlanta at the CDC main gate. There are activists who just need a cause and they will protest, this is a well known fact in the DC area among those involved in public issue PR. So tell them to spend a few days as 'lay-in' protestors, in front of some federal buildings perhaps, wherever it is legal (I hope this is still legal!). So the protesters bring a cot and lay down, while holding a sign of some type about CFS and someone else hands out leaflets, etc.

 

[outofstep]

update on blood supply

At the May 10th CFSAC meeting there is supposed to be an update from Jerry Holmberg-I'd wait until then to see what he has to say.

I totally understand your anger srmny. There has been a bloodmobile conveniently parked in my city for about a month. I *could* have given them a lot of blood by now, but haven't. The message that we aren't donating is a very important one.

PS-An awareness campaign targeting those who deal with the recipients of donated blood, ie hospitals, might be more effective. I know several people who are banking their own blood for surgery b/c they are concerned about the blood supply.

 

[SeaShel]

I totally get where you're coming from srmny. We need to figure out a way to REALLY get some attention. Something that we can actually physically do, and therein lies the problem.

Is there a National Donate Blood Day? The thought that popped into my head (so I have not fleshed this out folks, just thinking out loud) is that if we identified some kind of blood related day (they also do those bone marrow drives) that typically get a TV crew to show up for a 30 second sound bite, I would go be absolutely willing to load up a recliner (would work better for me than a bed) and have a big ol poster board that says: I'm XMRV +. Do YOU want my blood? The Red Cross says I can donate! (I don't know if I'm positive, like I said, just throwing some things out).

I think there's something to the idea of identifying something that all ready gets attention and putting our own mark on it. Obviously nothing else is working. Our local newspaper did a story on me and another PWC over 15 years ago for May 12. Fat lot of good it did.

Shelley

 

[justinreilly]

Scary XMRV Costumes

I totally get where you're coming from srmny. We need to figure out a way to REALLY get some attention. Something that we can actually physically do, and therein lies the problem.

Is there a National Donate Blood Day? The thought that popped into my head (so I have not fleshed this out folks, just thinking out loud) is that if we identified some kind of blood related day (they also do those bone marrow drives) that typically get a TV crew to show up for a 30 second sound bite, I would go be absolutely willing to load up a recliner (would work better for me than a bed) and have a big ol poster board that says: I'm XMRV +. Do YOU want my blood? The Red Cross says I can donate! (I don't know if I'm positive, like I said, just throwing some things out).

I think there's something to the idea of identifying something that all ready gets attention and putting our own mark on it. Obviously nothing else is working. Our local newspaper did a story on me and another PWC over 15 years ago for May 12. Fat lot of good it did.

Shelley

Good idea, SeaShel! You and smrny are right, we need to do a publicity stunt that scares people- without harming them- something dramatic that really captures media attention.

I used to volunteer for Sierra Club and one thing they said is very effective for tv cameras is costumes. Anyone have scary XMRV costumes laying around that we could dress up in and wait in line at big blood banks? The visual would be us rubbing our hands together at how much we're going to spread in the blood supply.

I see the costume as being a Sponge Bob with a scary retrovirus instead of a sponge.

If we were really able to devote some energy to it, maybe a very small "band" outside with a display of a big poster of the book cover of "And the Band Played on"- the book about how CDC fiddled while a retrovirus, HIV, spread through the blood supply.

I agree doing this on May 12th, some big blood donation day or an AIDS awareness day- there's another retrovirus worse than HIV, because there's no effective treatment, coming to infect you with lymphoma, prostate cancer, and the dreaded neuro-immune disease ME when you go in for your liposuction- would be ideal.

"What's ME??" Here's an opportunity to educate.

 

[jackie]

I'm nearly 60 years old (I came of age during the vietnam war and protested my guts out!)...have been one of the "sickest of the sick" we all talk about for too many years...lost my early to middle years and am losing my so called "golden ones" - I believe I'm starting my last Life's journey...so I'm very ill, frustrated, mad and tired of being ignored!

But that said - I wouldn't wish one minute of what I've gone through on my worst enemy - not even those that have knowingly or not, caused me irreparable harm - or even HINT that I'd be willing to infect anyone - not even if I was given the chance (by the laxity and the cavalier attitude of "the people in charge"...whose job it is to protect us all....and who appear to be dismally failing!)

Just the opposite! I'd like to see a campaign saying WHY not ONE SINGLE PWC would consider risking the health and lives of unsusupecting innocent people....regardless of whether the "powers that be" consider the potential danger of contamination to be important enough........yet!

Why can't we "publicize" that out of our very real concern for the safety of others, we will NEVER, as a patient group, DONATE BLOOD?

Some time ago a poster named "Hanchuchu" related some stories about a terrible "mystery virus" that is, right now, wasting the lives of people in China....and that some groups of sufferers had "threatened" to infect others as a way to make their voices heard to their Government, Health Officials, sceptics and non-believers. "They" felt that this was a matter of life and death - being ignored and discounted meant death to them and they felt justified in threatening to take this step. Whether they were serious about acting on this or not, was irrelvant, as far as I was concerned.

I found the thought of this appalling - that these agonized souls in China actually thought they had a RIGHT to do this...and not because I don't understand or empathize with suffering! I know pain and sickness most intimately. I simply don't agree with the concept of trying to "frighten" others into UNDERSTANDING. If we begin to think it's OK to scare, intimidate or threaten...what is the next step - if our concerns are not addressed? (as they haven't been for the past 30 years!)

So what if the Red Cross says it's ok with them if we donate (it's no secret that our "agencies" are pitifully behind the times)...WE KNOW it isn't wise or safe! THAT'S what we communicate! No veiled threats necessary...facts as we know them.

I've thought carefully about the ideas in this thread and I'm not disagreeing because I care what other people ("normals"! thanks, Vickie!) think of me or how I might appear - if I speak out publicly about what I know to be true. I DON'T care. But - fear tactics and publicity stunts are not the way to educate, IMO.

I do agree that we, as a group, need to unite and raise our voices...much more loudly than we've been able to in the past. We ARE in dire straits! Personally, my time is running out - but now we have many cold hard facts of me/cfs not available to us before (new info, data and studies...many new researchers/scientists and doctors on our side - the WPI, Dr. Bell etc.)

I also think we will have a fight on our hands convincing the general public of what we feel they need to be aware of (we always have!)...but it seems that the more this disease takes away from us physically - the more spirit and fight we are left with! (a few months reading these Forums has shown me that)

(MY real question is WHO or WHAT is STOPPING "us" from being heard and taken seriously and this illness from receiving recognition? I'm reading Oslers Web for the third time - and each time I think I'm getting closer to the truth!)

BTW...would have liked to stay out of this discussion. I don't like casting a dissenting "vote" - as I can "hear" the anquish and very real anger and impatience reaching a boiling point - which is something I do understand! AND I'm still wiped out from the last one I got involved in...but this time I had to speak my mind while trying to see both sides of this idea!

Respectfully, I hope...no offence intended (and I AM getting to be an oldster, too! maybe my days to "fight" with any means possible - are nearing an end)....j

 

[glenp]

Many are still donating - unknowing they even have CFS

I'm pushing 60 here. I had symptoms as a child. I was told by doctors that I was depressed. Doctors and Red Cross told me that it was OK for me to donate blood, I did, and have also received blood during one of my serious infections. On the long drive home from work it was a nice break to stop at red cross and give blood, get cookies and have a rest. It wasn't until I was in my 50's that I lucked out and got a psychiatrist who suggested that I had CFS - my gp refused to believe it and give me a referral as the psychiatrist had requested. I told an obstetrician at the walk in clinic here and he immediately took me on as his patient and had me referred to Dr. Carruthers. I bet there are many others out there. I now believe this is what my mother also had which contributed to her death. My dad died at the age of 39. How many others are out there??? - many not able to go on the computer-- When I was working I did not get on the puter. God bless you all

glen

 

[brenda]

Suggestion

WE ARE NOT ALL JEHOVAH`S WITNESSES

yet

WE WILL NOT ACCEPT BLOOD TRANSFUSIONS

because


As ME sufferers we know that a retrovirus like AIDS is possibly the cause of our sickness or perhaps another undiscovered virus, and which leaves us ridiculed by doctors and sometimes family and friends. However, the government is happy to allow us to donate. Does this worry you?

 

[srmny]

"I have tried to make it clear that we would not be giving blood - only trying to make people aware that we can give blood. We have repetitively asked our government to ban us from giving blood but we are refused every time and we think the public should be made aware of it. I know that none of you know me but I am still quite surprised that any of you would think I was planning to try to infect the public with our blood. I do have a lot of cognitive problems - particular when writing - but I am apparently worse than I thought! But it also proves that you all maybe correct that people would jump to that conclusion."

Be assured I am not trying to start a war with the "normals".

"So we would be saying that because your government has failed to protect you, the public, from this disease by not protecting the blood supply and intentionally shutting down scientific research into the cause of this disease, we are speaking up to warn you to tell your government they must protect the public from this dread disease."

This is what I am trying to accomplish. I too am almost 60 and my cognitive function stinks so please respond only to the above statements. I found a website called GoPetition and I am going to attempt to write a petition addressing the ideas quoted above. I think we should have a petition ready in case Dr. Holmberg disappoints again at the CFSAC meeting. If someone out there is experienced in writing a petition and knows of a better website to use or believes they can do a better job, also please speak up. I just want to have a petition ready to go if, in the face of all the evidence to the contrary, Dr. Holmberg says it is not enough and does not ban our blood.

I know Canada, Australia, and the UK have banned CFS blood. I am not certain about New Zealand. So if anyone knows, speak up please.

Since I have never done this before it will probably need multiple revisions. I will try to get something posted before the weekend. If anyone else wants to write a petition I would welcome the help. We could post our attempts and consolidate them. The GoPetition site says identify your target first and then 1) describe the situation 2) suggest what is needed 3) explain why it is needed. Keep it short and simple. Sounds easy enough but I imagine it will be more difficult (for most of us) than it sounds.

 

[alphahusky]

I get ya, srmny. All she's trying to say is that we make a big deal out of letting people know we still technically CAN give blood, threaten to do so, but DON'T. We have to draw some attention to the fact that not only does our government not care one whit about us, it doesn't care about other people who need blood transfusions. I have tried for years to get my mom to not donate blood, as she had some weird illness before I was born that sounds suspiciously like CFS, and she's had contact with me. But okay, she still does. But if we can get the energy together to let the public know we CAN give blood, but do they WANT us to, that's powerful. We'd need to draw attention to the countries that have banned us as well.

Personally, I like the idea and would like to find a local blood drive and maybe put up a sign/have a petition. This year, I'm also planning to write one letter and send it to every politician, etc., that I can think of about our situation. If everyone did just that, it would also make a difference. It is hard for me to go out and do things, but I can write a letter.

 

[Sasha]

I get ya, srmny. All she's trying to say is that we make a big deal out of letting people know we still technically CAN give blood, threaten to do so, but DON'T.

My understanding was that srmny and this thread had moved well beyond the point of wanting to threaten to donate blood, even as a bluff. I really hope that's the case. Am I wrong?

I thought that people had decided that they were much happier with the message of, "We with ME are protecting you, the public, by not donating our blood, even though our government would allow it".

To be honest, I'm still uncomfortable with the potential for confusion on this - even on this thread, people have been (and apparently still are) confused about whether the intention is to threaten or not.