Wednesday, 1 June 2011

Boring Science Stuff or Political Intrigue?

I am an absolute dimwit when it comes to science. With that disclaimer out of the way, let's talk about science.

The only one story in town right now for the M.E. community is that Science journal asked Lombardi et al to retract their seminal paper on XMRV and the potential link to M.E. The journal also published and Editorial Expression of Concern. Thankfully, Lombardi et al have categorically refused to retract.

Did I mention I was a dimwit when it comes to science? Never hurts to re-emphasise the point. However, even this dimwit can see the absolute logic in what Dr Deckoff-Jones had to say HERE:
"It can't be both a contaminant and not there at the same time. Which is it?"


You can read Dr Deckoff-Jones' frank and unflinching views on what's going on in the link I posted above. As always, she shoots from the hip and doesn't mince her words. I admire that.

For a while I've had the dilemma of which organisation to support with donations and who to root for in terms of hopefully one day finding a cure so we can all have our lives back. This has now become irrelevant for me. It is no longer about whether the WPI are our saviours or whether XMRV will be the big breakthrough that leads to meaningful treatment. It is about the little guys with good intentions being bullied by the powerful.

The consequences of the WPI being 'taken out' are significant. This goes way beyond the money Annette Whittemore has ploughed into the Institute and it goes way beyond our illness. Even this dimwit knows that science is full of cases where the original discoverer is discredited and marginalised to allow someone else to end up taking the credit (and making the money!) for the discovery. I believe this is what we are witnessing here.

All of this makes me all the more determined to support the WPI. Whether they can cure me or not, this has become a matter of principle too great to ignore. I hope others feel the same way.


  1. AAAAAAANGRYYYYYYY!!!!! Just so pissed off with all this rubbish.

  2. It's infuriating and it is bullying. I just don't understand why?

  3. HA! couldn't stay away. really like knowing your 'conclusion.' interesting point of view.
    crossing fingers and toes that Lombardi et al win out!!! this is soooo important!!!

  4. Sharon Stapleton2 June 2011 at 00:48

    "THEY" who are playing games and got Science to ask for a voluntary retraction from WPI are terrified of this Retrovirus and what will happen when we all find out how it came to be, how it got out, who was behind it and its 30 year cover-up, and then the millions and millions of deaths from the cancers and diseases, the suffering of the sick and their families - all because WPI made the link from the psychobabble ME/CFS to a very real and deadly Retrovirus. Some group, probably within our governments, is TERRIFIED,of what WPI has found with this Retrovirus. So this "group" is attacking on all fronts. Hence getting Science to do a trashy thing. Hence NCI stepping backwards and saying it was contamination in the study. Some group got to these people. It's that simple.

  5. Creepy stuff...and thank you for admitting to being a science too

  6. I sent the WPI some more money yesterday for exactly this reason.

  7. I strongly disagree with your stance. I truly believe the WPI and their staff are good people and have the best of intentions but the science isn't looking good for the XMRV/CFS link.

    There is nothing to be ashamed of when an honest mistake is made. However, because of their public stance they can't back down now and admit they detected a contaminant rather than a disease causing human retrovirus.

    I think nobody should be donating money to or buying expensive and unproven tests from the WPI. People with ME are unlikely to be able to throw good money away. If the Whittemore's can afford to spend money on an Institute to research this illnes then they should continue to do so. Maybe their money would have been put to better use giving funding to existing institutions and universities. I suspect the money would have gone a lot further and produced more published studies.

    As for Dr Deckoff-Jones, are we really to believe she is not acting as a mouthpiece for her organisation despite her disclaimer otherwise. The statements and accusations she has made recently are quite shocking and her opinion is listened to and believed by a large group of ill people who are siding with the only group who have seem to be fighting for them.

    The science goes above most of our heads, how many have relevant PhD's? Are we to truly believe everyone is out to get us or that all these scientists are in cahoots to shoot the WPI down. I know why people feel like this but it's not the same as the pseudo-science practised by psychiatrists. This is real science!

  8. Hmmm Anonymous ... HIV AIDS was discredited by the Medical World en masse and Identified by one research group only.

    If we take your thoughts and add them to this analogy - that the consensus opinion is worth more than the valued research of one group - then HIV AIDS would be in our blood supply today and passing on throughout humanity.


    Perhaps one research group can make a difference.