Do not even contemplate giving blood you would be no better than a murderer.

This is my first blog entry but something I felt strongly about

I am on a few different me/cfs forums and I have to say some of the things I am hearing on the grapevine are sending a chill down my spine .Folk threatening to and encouraging other folk to join them in donating blood .This is not the first time I have heard this idea being banded about .

Giving blood or even threatening to is morally and ethically wrong and would probably do the me/cfs community as a whole more damage than good .It would certainly fuel the psychology brigades theories that we are all mad

This illness destroys lives , it is an illness I wouldnt even wish on my worst enemy. The problem we have is the fact that there are folk with xmrv in the general population who at this moment in time are blissfully unaware .

We should be advocating for better education , for pamphlets and leaflets to be made available in doctors surgeries and hospitals, for talks in schools to educate children ,ads in newspapers and magazines , positive actions not going to a blood bank sleeve rolled up .

Whatever actions folk take on this affect all the me/cfs community , folk will not appreciate actions which put them and there families in jeopardy. We are discriminated enough as a community , that would only become worse if folk start taking desperate actions like donating blood .Do we want to be treated like lepers ? Our kids to be bullied in schools ? I certainly dont .

Education is the key and that should be the message we should be getting across

someone replied to my above message on a forum by declaring that they thought everyone with ME/CFS should donate blood now and force the governments hand.

THIS IDEA IS INSANE my response is below

If you had sat on a childrens oncology ward for weeks on end watching children suffering , dying , having blood transfusions and other blood products such as platelets in order to keep them alive , you would not even contemplate such a barbaric idea .

Great Idea cure the little children of cancer but give them a deadly retrovirus instead . That goes for any other folk who have to have blood transfusions , havent the hemaphiliacs suffered enough already .?

By purposely donating blood regardless of if you know wether you are xmrv positive or not , you know that the cause of me/cfs is more than likely infectious .Also you would have to lie and say you felt well that day . Therefore if anyone became sick through the blood you donated you would be culpable .

You would be no better than a drunk driver who kills someone whilst pissed .

Not only that if you managed to donate blood and they then had to recall all the blood products donated in that time frame there would then be a blood shortage and folk who could have been saved by a blood donation would DIE

This is insane , I will not be party to such actions that would do more damage than good .

Could you honest to god live with yourself knowing that you had probably just given someone a death sentence .

Yeah me/cfs doesnt kill us quick but it does kill , this is sick and if it came to a point of law and someone died because of your actions you would be charged with murder not manslaughter because the intention was there .






Our actions as a community should be constructive not destructive .


I feel shocked and saddened when I see people even talking about donating potentially contaminated blood, for all the reasons that Polly states, and for the following reason in particular.

My friend is a haemophiliac who was infected with HIV, Hepatitis B & C and CMV via contaminated blood products in the 1970/80s. He has been waiting for the UK Government to introduce a reliable test for vCJD (mad cow disease) to see if he has been infected with this too. Now he wonders if he has XMRV.

My friend is very sick but, at least, he is one of the 300 infected people still alive. Several thousand have died already and many of their relatives have been infected. Their lives have been destroyed by selfishness and negligence. Their suffering is unimaginable. And yet some people in the ME community seem to feel that their own suffering justifies a discussion on the acitvism merits of wilfully repeating (or threatening to repeat) this appalling misdemeanour of history.

How cruel and callous can one group of sick people be to another?

The UK Government will not accept responsibility for contamination of the blood supply in the 1970/80s and uses this position to restrict compensation to those who were infected. The Government says that it did not know that the blood was contaminated, even though due diligence would have indicated otherwise. Any blood sourced from (US) drug addicts and prisoners must be suspect.

Other governments have accepted responsibility and paid appropriate compensation (e.g. Eire has paid over 500k to each infected person).

I have read the argument that if people with ME donate blood and contaminate the blood supply that it will not be their responsibility but the responsibility of the powers that be for allowing the donations. This is the same nefarious argument as the UK Governments: how could we have known?

The UK Government didnt have to know specifically what was in blood and blood products sourced from the US. The source itself was enough to raise alarm bells. Similarly, we dont have to know whether we are XMRV positive or not. We know that we have a chronic illness and that there is a high likelihood that it is viral and transmissible. Such beliefs have been posted on forums such as these for years.

Governments may prescribe general or common law but the moral imperative remains with the individual. If you have ME, please do not donate blood and please do not discuss doing so, even as a threat.
I'd classify the idea of ME/CFS patients giving blood under "right thought, wrong action."

The desire/need to have this illness recognized has reached a point of desperation and people should be outraged and ready for action--just not the kind of action that could could put children and others in danger, which is really effectively brought home in this blog.

However, the ME/CFS community's responsibility to act ethically doesn't abdicate the government or health agencies from doing their job. I'm sure we can all agree on this.
Well said (both Pollycbr123 & Fred).

Anyone, with anything remotely infectious, threatening to donate (or deliberately donating blood), to make a statement to the public, deserves to be charged. (Unfortunately, this won't bring back lost lives, but at least there will be consequences & punishment for those who have committed this act).
Comment deleted by moderator. Threatening or pretending to threaten the blood supply is not acceptable on this side. Please see forum rules about threats.

1. It would be irresponsible, immoral and unethical by any humane standard of behaviour to EVEN threaten to contaminate the human blood transfusion supply. It is blackmail which is ethically and morally wrong in any society, whatever the cause.

2. Even suggesting the one "might" take the action could encourage someone less controlled than oneself to ACTUALLY DO IT!

3. This idea has not been thought through and most would also find it repugnant that such an irresponsible suggestion could even VAGUELLY be morally, ethically or even humanely justified as "called saving lives".

4. It could also be called morally corrupt to excuse such a thought to action or threat justifiable by IMPLYING such procedure/idea is fine because "The blood supply is already contaminated".

5. All of the logic here in the following arguments made are rational and fine - unfortunately rationally based upon such appalling debased foundations is not only irresponsible and ethically perverted but also highly dangerous to society as a whole. Such knee-jerk reactions so cleverly rationalised has also led countries and the world into disastrous wars.

There are other rational and responsible ways of dealing with this problem - they just take time, patience, a passion for justice and clarity of response NOT ill-thought out over-reactions.
@ Aurishima.....I am sorry but your last sentence completely blows away your own argument

"Anyone who does not act to stop the spread of XMRV, knowing it destroys life's like ME/CFS does, stands by and shies away from real action which could stop the crime, is an accomplice to the crime !"

...but by this action that is exactly what you are advocating doing...spreading XMRV...I thought that is what you were against.
Comment deleted by moderator. Threatening or pretending to threaten the blood supply is not acceptable on this side. Please see forum rules about threats.
The ME/CFS support group PANDORA and ME/CFS patient Tina Tidmore (better known by her moniker usedtobeperkytina) are creating a patient-driven advertising campaign to overhaul how ME/CFS is perceived called Our Voice, Our Message, Our Lives. Their goals: To launch educational programs and advocate for scientific research on ME/CFS, XMRV and related issues. By creating this campaign, its founders expect to issue a “collective, unified and powerful statement that an entire community will no longer be silent and invisible.”
The threat to the blood supply does not come from activists, it comes from governments unwilling to take precautionary measures to make it illegal for CFS patients to donate blood to in order to protect the blood supply.
Do you think HIV/AIDS activists just sat around waiting for the government to do something? No, they did not. The blood supply is in danger every day that it remains legal for CFS patients to donate.
This issue is not new. There was a blood donation warning on the Canadian Consensus Criteria when it was published in 2003. Count the years.
I'd also like to point out, that if it turns out that XMRV is a real threat to the blood supply, and ME/CFS patients did not do all they could to alert the public, that is when we the public will turn on us like a pack of wild dogs. Not Acting because of fear is doing more harm to our cause right now, then any provocative action could ever do.
fred;bt2809 said:
I feel shocked and saddened when I see people even talking about donating potentially contaminated blood, for all the reasons that Polly states, and for the following reason in particular.
I have a big worry that I tried to take care of but they have not responded to me. My husband and I were both diagnosed with Fibro and CFS. My sone was diagnosed with fibro but is showing signs of also having CFS. We also have 4 other relatives that were diagnosed with CFS and/or fibromyalgia. When we first got treatment the doctors only concentrated on the fibromyalgia and told us the CFS was nothing to worry about. I had my worries that whatever was making us sick was contagious because of the way it progressed from one family member to another but was reassured by more than one doctor that it was "crazy" to think it was contagious. We have not tested positive for XMRV because we can't afford the test yet. I had heard they were coming out with a cheaper assay/antibody test and was waiting for that.

HERE IS MY WORRY: When we first moved to Wyoming I wasn't working so my husband donated plasma several times for extra money. My husband was sick at the time and told them about it, but this was right before the U.S. became concerned that XMRV might be in the blood supply. I have contacted BIOLIFE several times by phone and by e-mail, but they have not responded. I was told a few times that I would get a call back, but never have. I also contacted a National Organization responsible for monitoring blood donations that I learned about on this website (I am sorry. My memory is bad and I can't remember the specific name of the organization right now). Again, I got no response.

Does anyone else have any suggestions on what to else I can do?

I have not heard whether plasma could be contagious. The articles I have read only mention blood. Can XMRV be passed on by plasma also?
@ Mya Yes XMRV can be found in plasma .Plasma is the clear fluid found in blood and and the lymphatic system . The different cells in the blood are suspended in it . It is a good place to look in the body for antibodies .
A friend of mine is doing a lot of work regarding contamination of the blood supply and has contacted many different organisations . I will ask if they know of anyone ie a named person you could contact or which organisation would be best . Would that be of help to you ?
There are many ways we can do things as a community without resorting to donating blood or threatening to .and educating people has to be number one .I think we should wait and see what happens once the alter paper is out as once the paper is released , providing it is unchanged as per the leak it will have a massive impact on how things stand now .That paper in my view and that of several others will be the gamechanger.

.like i said on the blog any action we take as to be constuctive rather than destructive .If folk do anything remotely dangerous we will loose any sympathy the public may have for us but worse than that the support of our allies the scientisits ,doctors, advocates,polititions who have come out in support. They will not support any action that causes damage so taking drastic action would achieve one thing and one thing only and that would be to loose the support we already have . There are many folk beavering away in the background making sure our voices are heard through the proper channels . I think we should allow them to do their work .It is only 10 months since the WPI paper a lot has happened in that time science usually takes much longer . We have to be patient just a little longer.

I know how difficult the waiting is , it is hard for anyone who is involved in all of this , but we have to look at the bigger picture .The me/cfs patients who are on forums etc account for only a small percentage of the whole community .We therefore have to make sure that anything we do would be what the majority want not just ourselves . There are still patients out there who havent heard of XMRV let alone doctors and the general public . If we all make just one person aware of XMRV and the possible consequences of , we are helping to educate and spread the word

.We live in a different world to the early days of Hiv/Aids . We have the internet now , we can communate with folk millions of miles away in seconds , all these things make a big difference . Information is sent round the world so quick , this is an advantage that the Aids activists didnt have . We do, we are fortunate to live in an age of such technology that allows us to do such things , patients 25 years ago didnt even have the internet , let alone have forums like this , they didnt have access to the things we do , the information we do . It makes a big difference it is true what they say knowledge is power we have that knowledge thanks to the internet .
all you say is so true, we cannot afford to have the public against us in this. Things are bad enough for us without this kind of madness.
Only an imbecile would consider spreading this illness around. The innocent are not the ones who should suffer our injustices.
We need to work together to educate and spread awareness as far as we can.
We are human and our moral concience should take care of this issue. Potentially it is pre meditated murder.
Please think this through everyone.
Thank you for posting Polly.

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