Saturday, June 11, 2011

Someone needs a SMACK IN THE MOUTH!

This whole XMRV debate has me wanting to smack someone in the mouth!! Aaaahhhh!!!!
I’m not a Doctor or a Scientist but I do have common sense, and even blind Freddie could see that the big wigs are just playing silly buggers with us. Regardless of whether XMRV is THE major player or not I am 100% convinced that it does exist in people with ME/CFS. The thing that makes no sense to me is why anyone would spend hundreds of thousands of dollars doing ill thought out worthless studies.

If Dr Judy can find it and the likes of CDC etc cannot, then why don’t they just invite her to supervise a study in THEIR lab? Dr Judy could show the idiots step by step how to do the replication AND if it were in their lab it would be hard for them to argue contamination.

As far as I am aware no one is saying it doesn’t exist in prostate cancer patients, so why don’t they stop faffing around trying to find it in our blood and start using tissue biopsies in their studies?

If XMRV doesn’t exist in ME/CFS patients then how can it be explained that some people who are trialing antiretrovirals like Dr Deckoff-Jones are getting well?

Seriously people, stop fucking around with our lives and try using your pea sized brains to actually do something useful !!!!


  1. yes, the prostate cancer bit is interesting...but that affects men in powerful places. cynical, moi? hard not to get that way, isn't it?? remember we're all in this together. XXOO

  2. I saw a podcast on Virology blog and their explanation for people becoming well is 'placebo'. I am in the same mind as you Lee Lee. What annoyed me about the podcast was their smugness regarding the negative studies. It's one of the reasons I have no respect for scientists like that.

  3. I just cannot get my head around why they are so threatened? WTF? To stop investigating it only hurts the really sick, untreated CFS/ME peeps. How in anybody's rationale is that okay? Flufftards.

  4. Frustrating & upsetting & it makes me think of violence as well come to think of it. Usually aimed at my local GP's crutch, but hey!
    There are so many reasons why no one wants to foot the bill for CFS. US is in a bad way financially. UK have too much secondary gain and are driving the naysayers camp. Australia is just f@#king lazy and cheap.

    Because they know something we don't?

    But I think they have been thrown a curly one in what they know. I think something has changed the ball game and now they have pulled out all guns.
    Just like illness where it gets a whole heap worse before you get better. I personally feel that this intense scientific struggle is a good sign.
    Something has changed to get CFS to this point. The WPI are close and if we keep on backing them ... we win.
    The one thing that caused us to have hope is the one thing that changed .
    CFS is now a threat to those with vested interests. Keep up the punching Lee X

  5. Thanks, Lee Lee. Thousands and thousands of us are sitting up and paying attention to what happens next. We write and campaign because we believe in the WPI and the work they are doing. XMRV is not dead in the water and the patients are NOT moving on.

  6. Why? Money. Pure and simple.

    The ONLY reason any money at all was put out for AIDS (and then grudgingly) was because people were dying messily and publicly.

    We're dying slowly, privately and usually coded as something other than ME.

  7. Dont know who you are Anon but think you hit the nail on the head ! That, money and egos of certain scientists

  8. Hi Lee Lee,
    You asked a question that often goes through my mind too: why don't they invite Judy and let her supervize the work in THEIR labs?
    It seems so simple ... if they really wanted to get to the bottom of this.

    Btw: CFS "n" gay too :-) Not single though ...


  9. Thanks for sharing....there is a lot of feeling within the community that something rotten is in the state of XMRV - to badly quote Hamlet there. Coffin has turned on us, the NIH are being pushed to the limit over their study and editorials are questioning the validity of a paper that couldn't have been more thorough and pushed the boundaries of science to it's limits. The truth can't be hid forever.

  10. Hi Lee Lee
    As always, follow the money. It is unacceptable for some circles that a small private research lab outside of government control has found a possible lead. And maybe not just for M.E./CFS. They don't want to spend money but there is a lot of money to be made in burying a lead and 'discovering a new lead' further down the line.

    Have you seen the documentary 'Burzynski: Cancer Is Serious Business'? Free play till 20th June on
    A very thorough investigation. The parallels with the attempts to take out the WPI and others before them are astounding: scientific discovery, deliberate non-replications trial studies, patent for potential treatments, threats, government agencies lies and cover-up, betrayals, etc

    We need to keep the faith and hold our ground.

    ps: ... but boy do I want to smack a few people in the mouth...

  11. Thanks for all the comments, I always appreciate more info and other people perspectives :-)
    Onirical, no I haven't heard of that film, I will be sure to check it out ...
    Els, haven't seen you on here before but WELCOME, I hope you'l return :P

  12. Hi! Stumbled upon your blog and wanted to say hey. I too am a member of the LGBT community living with ME/CFS and I always like to meet other people in a similar situation. I noticed you were into design and photography- a huge passion of mine also! Anyway, hope you are having an "up" day today and best wishes!

  13. Ooh well hello Burntheboxes!! Nice to meet you :-) Come find me on facebook if you like!

  14. You "guys" are a riot! Burn, and Lee Lee; sounds neat!

    Of course most everyone knows that I and my partner of 27 years both have ME; she seven years after careful out there, all you LBGTs!

    Do you think a 125# ex-Army gal could knock Coffin off his feet? POW!