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!
Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
Discuss the article on the Forums.

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

Discussion in 'Action Alerts and Advocacy' started by srmny, May 4, 2010.

  1. flybro

    flybro Senior Member

    Messages:
    581
    Likes:
    5
    pluto
    Iw went to my docs surgery and hospital waerinf a face mask with XMRV on it in big red capital letters.

    It sparked conversations with a few people including the woman taking my blood.

    I did this last year, i remember thinking that the next time i go there it will probably be to get tested for XMRV. How wrong could I be, I think if you have the courage to wear anything that brings attention to the real possiabilty that this is in the blood supply, this is infectious and this is life destroying, DO IT.

    No one gives a toss if yuo go away and die drip by drip, the quieter we are the less likely we are to get help.

    I want the public to know, I have no idea how I became ill. I may have been born with-it, I may have got it from blood products, I may have got it from a vaccine.

    I do know that I am furious that it is being ignored and even played down for those of us that have ME/CFS, and the fact that prostate cancer gets XMRV research funding and CFS gets yet another smack in the face, from the people with most to gain form keeping this under the control of psychitric peddlers of GET/CBT infurates me even more.

    Its like having an invisble plague and being told to keep quiet about it.

    Keeping quiet about it is what the authorities seem to want.

    It has been stated somewhere I think by Wessley, that patients shouldn'yt join online communties, the same is also stated in a neurology magazine about MS.

    The quieter and more ignorant we are the happier the authorities are.

    ROCK THE BOAT and keep rocking it until it capsizes, it is not us that need the boat to float but the people that benefit from keeping us on it and isolating us from any help or support.

    SHOUT FROM THE ROOFTOPS when ever you can, and when you'are shouting think of all those that can't shout, all of those that are unable tobe here with us on this forum.

    One day that may be me, and Iknow I will wish I had not gone quietly, and I will wish that there are others shouting for me.

    If thats enough to make you draw attentin to it and shout and create a fuss, then think of all those that are no longer here.

    I am sick to death of being polite and getting no where.

    Look what they do to the one Doctor in the UK that had helped us. Sara Myhill even with 100 patients tyrning up on the day to support her, and the many leters that were written, they still restrict her abilty to prescribe medications that she has researched and her patients have had great benefit from.

    sory rant over, who knew i was that fed up with the waiting.
     
  2. jackie

    jackie Senior Member

    Messages:
    591
    Likes:
    5
    Funny...it may be that my feeling so "Contagious" is really about my "paranoia" and guilt (undeserved, of course) that I may/or will pass this disease (which at times seems unendurable) to those around me (especially the little ones!)

    Another "funny" thing (I know I've mentioned this around the forums as I found it puzzling - and so did my doc!)...my recent T-cell counts (cd4) were unusually HIGH...and yet I still have chronic re-activated VZV (as you said th1&2!)...all while taking huge doses of av's (for FOUR years straight!). When the xmrv news broke - I was quite sure it didn't apply to me - but now I feel differently.

    I know my doc is not convinced that "we" can easily PASS on these viruses (not talking about XMRV, though)....although contamination from the same SOURCE is quite common!

    Regarding the "liter low"...someone here a while back had a great idea...they said they filled a jar/bottle with colored water and marked just how much blood WE are lacking! It served to get the point across!

    And I just remembered that my doc (when I faced the dilemma of what anesthetic I should request for some dental work) said go ahead and use epinephrine (which is contraindicated in many of us) if I KNEW I TOLERATED it, as he didn't want me bleeding too much because oif the low blood volume (the epi helps to reduce/slow down the bleeding). ANOTHER reason we should NOT be donating blood (I think dr. bell talks of this also).


    Flybro...."Rants" are a good thing! Your post makes me think of my favorite Dylan Thomas poem (I often, more and more as I age, feel like you do)...."Do not go quietly into that good night....rage, rage against the dying lght!" Never give up the fight.....(I THINK he wrote it when his father was going blind)

    As to being ignored...I took days, and completely wore myself out plastering me/cfs info all over my little fb page...including statistics showing funding disparities I "borrowed" from Oerganix, reminders about May12 awareness day drawing near (I even interspersed funny comments and music videos unrelated to the disease - to try to "engage" folks to LOOK at the page!) - and although quite a few friends/family HAVE looked....only two comments back relating to me/cfs have been made so far (one by my daughter!)...and it's been over a month.

    The two comments were sympathetic..but NOT inquiring of more info - so I don't know what I did wrong! TOO strident? Too whiney? NOT pushy ENOUGH? (and I have a very nice and caring family and nice friends too!)

    My next action is to post excerpts of "Osler's Web". We just have to keep trying and not give up hope, I guess. I tell anybody that will listen - including lab techs and nurses that I run into.

    (Hope I'm not off-topic!)..............jackie:Retro wink:
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Yes!!

    _____________
     
  4. flybro

    flybro Senior Member

    Messages:
    581
    Likes:
    5
    pluto
    Hi Jackie, my shout from the roof-tops is a lot more cowardly in truth, its not on my face book, and my grown daughers don't know about it. I'm so glad I have kept the news away from my girls.

    The worrying and not knowing if I have a retrovirus, and if I've given it to any of my children or grandchildren, has been difficult, but if they had known and been waiting for me to up date them, I think would have fallen apart by now.

    I'm such a coward i try to hard to gloss over the reality of the disease around my kids.


    I took the risk of using a wheelchair to go to the hospital in December and my mother heard about it and called my daughter and let her know, I wanted to throttle her.


    So perhaps my post should have read shout from the rooftops, but only amongst strangers.


    Cheers Justin your emphatic yes made me grin.

    All I really need to get going is for XMRV to be standardised and affordable so that I can get myself and my children tested.
     
  5. jackie

    jackie Senior Member

    Messages:
    591
    Likes:
    5
    Flybro...I can certainly sympathize with your desire to shield the "kids"!...and you with that handsome boy Lucas John! I have 6 grandkids (2 yrs. to 23 yrs.)...and I can measure the length of my illness by how involved I was able to be with each successsive child! By the time the baby was born I didn't even feel secure in KISSING him!

    So sad for grandmas...I keep reassuring everyone that I'm NOT contagious...but my words ring hollow (and my actions - holding back when I hug, blowing silly air-kisses when I want to give a big smack right on the lips! - betray me, I'm afraid.) And when I do get too close with a cuddle...I wonder if everyone is watching me and wincing.

    I miss burying my face in the crease of his little neck.....and getting that "new" baby smell! There's nothing like it!

    guess you're right...we'll have to "shout" at strangers!

    jackie (protecting your children - no matter from what - is brave, not cowardly!):Retro smile:
     

See more popular forum discussions.

Share This Page