1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

UK Bans CFS/ME Blood and Tissues Donations Video

Discussion in 'Action Alerts and Advocacy' started by Carrigon, Sep 8, 2011.

  1. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    72
    PA, USA
    I wasn't sure if anyone posted this here yet. I think this right here is the most important video I've ever seen on our illness:
    http://youtu.be/bwqVKN2wUyY

    All CFS/ME blood and tissue donations are banned in the UK. You cannot catch a psychiatric disease. Therefore, their house of cards is tumbling down. If they aren't afraid of the big bad wolf being transmissible, why can't we be donors? You can't continue to say it's psych and yet not allow donations.
     
  2. alex3619

    alex3619 Senior Member

    Messages:
    7,681
    Likes:
    12,485
    Logan, Queensland, Australia
    Hi carrigon, thanks for this post. The information on tissue and organ donation, particularly post-mortem, is interesting. Bye, Alex

    PS It has been pointed out to me that the ban is not to organ donation. However, I have replied to that by saying that organs are blood filled tissue collections. It could amount to a de facto organ donation ban, without the associated negative press.
     
  3. Hi Carrigon, Thanks for the post this is fantastic news for the UK! Those psychiatrists are running out of room to worm there way out of yet another abusive treatment of very sick people.

    Here's a relevant quote that I like and Alex given your profile photo you might like this too!

    Insanity: doing the same thing over and over again and expecting different results.
    Albert Einstein

    And the psychiatrists say we have a mental condition! (Somatoform Disorder) You would have thought after their track record on Stomach Ulcers, MS and HIV to name a few they would have learnt something.

    Thanks Scott
     
  4. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    72
    PA, USA
    Yeah, I sent this to my evil relatives, and I said, if I'm so safe, how about we put me on the donor list for all our family members. Let's test out your theory that the disease doesn't exist. It'll be the gift that keeps on giving.

    The fact that donations are banned should at the very least get lawyers in the UK and beyond to stop the practice of the Cult of Wessely and stop any and all persecutions of people with CFIDS/ME.
     
  5. alex3619

    alex3619 Senior Member

    Messages:
    7,681
    Likes:
    12,485
    Logan, Queensland, Australia
    Hi Scott, yes, its a great Einstein quote, I have always loved it. Bye, Alex

    Hi Carrigon, I for one would be interested to see how your relatives take this video, or if they even watch it. I do think this video is overly provocative in a sublte way, fodder for conspiracy theories, but the points made are substantially correct - and the USA is spending more than any other country to try to determine if we are infective with XMRV or a similar virus, hence the BWG and Lipkin studies. Two weeks till the Ottawa conference now, I hope the BWG interim findings are released.

    Bye
    Alex
     
  6. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    That's a powerful video Carrigon - thanks for finding. And just to show we are not so stupid as the psyches would have us, from years ago with dysfunction of the bowels, adrenals, kidneys, and liver (at least) I took the decision not to donate anything for fear of infecting anyone else.
     
  7. Hi Carrigon and Enid, Here in Australia we sign on our drivers licence to donate body organs in the event of sudden death e.g. car accident! I was a donor but being an responsible person I removed this from my driver's licence last year so as not to pass any infectious disease on to an innocent person.

    Having said that I would be more than happy in the event of my death to have my entire body cut up and distributed to any psychiatrist/non believers of the infectious diseases doctors and their families only.

    Scott
     
    Min likes this.
  8. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    72
    PA, USA
    Perhaps we should all start an organ donation drive for Wessley? :D He can have a special batch just from CFS/ME patients.
     
    sianrecovery likes this.
  9. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    72
    PA, USA
    Let's put it this way, anyone who doesn't think they can catch an infectious disease through organ donations is living under a rock. Who would risk an organ donation from an Ebola patient, or an HIV patient? MERSA, Syphilis, Rabies, Hepatitis, Parasites, particularly the type that like to burrow. The list can go on and on. There are many things you can catch through an organ donation. Usually, if a donor is diseased, the organs are not considered viable. And I challenge anyone who disputes it to happily accept an organ donation from an Ebola patient. Just hope they have enough clean sheets as they are bleeding out.

    If you do a Google search for "organ donation and infectious diseases" you will come up with many sites explaining how organ donation screening often fails and misses many infectious diseases.
     
  10. AndrewB

    AndrewB Senior Member

    Messages:
    121
    Likes:
    13
    England, UK
    The NHS in the UK says ;

    Officially the ban is to protect the health of those with the disease, also known as Chronic Fatigue Syndrome (CFS).

    But the ME Association said it was triggered by recent scientific findings that the disease might be caused by a virus.

    People suffering from the disease are currently allowed to donate blood if they had completely recovered.

    NHS Blood and Transplant described the ban, which comes into effect on November 1, as "a precaution to protect the donor's safety by ensuring their condition is not made worse by donating blood".

    A spokesman explained that the "relapsing-remitting" nature of Myalgic Encephalomyelitis meant those with it often became ill again.

    Now, as many ME sufferers have low blood volume, this is the get out clause they can use.
    So it'd be folly to suggest the NHS, Government or wessely will feel the need to comment further on this.
    And should they be pushed for answers, they'll keep repeating it's for our own protection.
     
  11. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    72
    PA, USA
    Andrew, it is amazing the lengths they will go to to lie, deny and cover up.

    The response I got from my evil uncle today was almost violent. First, he told me it was a "bizarre" suggestion that they should put me on the family donor list if they still refuse to believe. Then, he went on to list all of his brother, the doctor's, medical degrees and said that I am not a doctor. And finally ended all his ravings by saying I am an embarrassment to my dead mother and should get off my lazy ass and work. He also made fun of our disease and said, so you have a FEW health problems, get out there and work.

    I was already prepared for a nasty letter, so I wasn't all that surprised, just surprised he would call me an embarrassment to my dead mother. Real nice. Actually, the complete opposite is true. My mother used to tell me that her worst nightmare was that if something happened to her, I would have to deal with him. She would have been proud of me and my cousin for standing up to his evil.

    I wrote him back and calmly described how he has no compassion or empathy for anyone, and I said, that makes you the most disabled one here.

    God will deal with my evil relatives. God sees all and waits. And I told him that, too. I told him he is not immortal and time is ticking.

    But wow, it is amazing the lengths people will go to to continue to deny this disease exists or that it is severe. They all have their own agenda. Evil.
     
  12. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    72
    PA, USA
    My dealing with them is winding to a close. I don't deserve the treatment, and I'm not going to let it keep going on and on. They want that. He actually said something like, "let's keep the lines of communication open for when you are ready to help yourself and go to work". UGH.

    It's the money, that's the only reason I didn't cut them off. I'm alone, and since I moved, it's been harder. But I'll find a way to manage without them. Their "help" is no help.

    I'm just shocked at the denial and the lies and the coverup and the ridiculing the disease. You would think after twenty years they would realize that doesn't work anymore. They know what they are doing. They just don't feel like helping me, so they NEED me to be lying about the disease. That way they can say I won't help myself, so why should they help me. I brought that up to them, too. And I said, all you had to do was say you couldn't afford to help me, and I would have believed that. You didn't need to go through being evil and cruel and telling me I'm faking my illness. Just say you don't want to or can't help. The truth is, they can afford it, they send my cousin a thousand dollars a month. She's married, she's living in a millionaire gated community. They have the money. So when I said this, they said, oh we can't afford to help you. Yeah, right. Well, they should have said that from the beginning and there wouldn't have been further need for discussion. They are evil and get off on hurting other people. They have gotten off on telling me I have a fake disease for twenty years. And I've had enough of it. Let God deal with them. And they deserve everything they get. My uncle gets off on making fun of disabled people, he even makes real jokes about disabled people. We shall see what God has in store for him, his life isn't over yet.
     
  13. Calathea

    Calathea Darkness therapy

    Messages:
    1,098
    Likes:
    564
    Scotland
    When I rang the Blood Donation service to ask about donation criteria, I was told that I couldn't donate because it might make me more ill. So I asked whether I'd be allowed to donate if I recovered in the future. No, I was told, it's a lifetime ban.

    Bear in mind that the blood donation service is generally batty - they have now changed the rules so that gay/bi men can donate if it's at least a year since they last had sex with a man, but women who are in a sexual relationship with a bisexual man are not allowed to donate until the year after the end of that relationship, even if it's ten years since their partner had sex with another man. Highly inconsistent.

    Going back to organ donation, I spoke to the organ donation service as well. They didn't know about any risks to do with ME, but said that basically, they are so desperate for organs that they will take practically anything. People would rather survive with a risk of getting ME than die for lack of an organ. It's different with blood, there isn't the same level of shortage. So I'm still on the organ donation register, but I do keep wondering whether I should be on it or not.

    Good page on the whole thing here, by the way.
     
  14. lnester7

    lnester7 Seven

    Messages:
    1,262
    Likes:
    1,163
    USA
    I am removing myself as an organ Donner. I don't wish this on my worse enemy.
     
  15. Calathea

    Calathea Darkness therapy

    Messages:
    1,098
    Likes:
    564
    Scotland
    I'm wondering about leaving myself on the register, but specifying that it's only for the organs where it would be a life-saving operation. Having ME is better than being dead, but it would be crap to get it due to something like a cornea transplant.
     
  16. Don Quichotte

    Don Quichotte Don Quichotte

    Messages:
    97
    Likes:
    190
    1. aren't those fast paced movies hard on your eyes?
    2. Is there any data regarding new-borns of mothers with CFS?
    if there is a transient CFS-like syndrome it would strongly support an autoimmune pathogenesis.
    3. Blood banks are extremely cautious and understandably take the approach of better be safe then sorry (after what happened with HIV). They sometimes even ban patients because of certain ethnicity. So, this is unfortunately proof for nothing.
     
  17. natasa778

    natasa778 Senior Member

    Messages:
    1,489
    Likes:
    1,355
    London UK

    No hard data but judging by anecdotes posts etc there seems to be a high number of children with autism amongst CFS sufferers. Also you hear lots of mums (and dads!) of ASD kids often suffering many of the 'ME-spectrum' neurological and autonomic issues, mostly borderline and without formal diagnosis. No hard data on those but there IS data on high prevalence of (diagnosed) autonomic conditions in general in ASD parents.

    I also see lots of symptom overlaps in many ASD kids - when you strip away 'autism' (ie surface behavioural stuff) lots of symptoms are 'classic' CFS/ME. This is intuitive though, and would be impossible to verify with data for the sole reason that those kids are not able to express how they are feeling because of a) lack of speech b) this state of being/feeling would be the only one they know, so impossible to compare to feeling 'normal'. But in general there is MUCH less physical ability and much more of 'feeling exhausted' and similar signals, lots of autonomic dysfunction etc. And LOTS of autoimmune findings.
     
  18. Calathea

    Calathea Darkness therapy

    Messages:
    1,098
    Likes:
    564
    Scotland
    I spoke to the organ donation folks, and got someone who at least was ready to admit that he was fairly clueless. I've taken myself off for eyes, tissue and small bowel, but left myself on for the rest, which I think was heart, kidneys, pancreas, lungs, liver. I can always change it again later if need be.
     

See more popular forum discussions.

Share This Page