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!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

Imperial College study boost chances of replicating the WPI findings

Discussion in 'XMRV Research and Replication Studies' started by Marco, Jan 29, 2010.

  1. Marco

    Marco Old blackguard

    Messages:
    1,275
    Likes:
    952
    Near Cognac, France
    Do you believe I believe they were mistakes? Didn't you notice the inverted commas? Perhaps I was a little light on the irony.

    If you remember back to when the WPI study came out many of us were concerned, not for the Wessleys of the world so much, but that well-meaning and unbiased researchers would fail to replicate the WPI findings because they were unaware of issues involved with patient selection plus the difficulties of actually pinning down this virus.

    I'll offer you two alternative scenarios :

    (a) The IC study was not carried out. Virologists worldwide naively accepted whichever patient population was offered to them, chose a variety of assay methods etc and either failed totally to find XMRV or the results were so mixed as to be unintelligible. The only group wise to why they failed are us.

    (b) The IC study is carried out (despite Wessley's involvement) as a bona fide replication attempt using a well defined cohort with organic ME, using the same culture media, assays and protocols, in fact a waterproof study. And fails to find XMRV.

    Personally I'm more comfortable with the factual scenario where a study has been produced that is shot full of holes, has produced a response that examines these flaws in great detail and has generated even more discussion of the issues surrounding ME and the agendas that involved.

    The net has made the world a small place and a select group like XMRV virologists can't fail to be aware of the response to the IC study. Scientists are a competitive and territorial lot. Any virologist worth their salt also cannot fail to notice that the paper is co-authored by a psychiatrist who self-references ad nauseum and that the paper was published on a pay to publish vanity site.

    I agree that governments and the media will neither bother or care to consider the respective quality of the two studies however I firmly believe that the science is in a much better place post the IC publication.
  2. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,436
    Likes:
    1,930
    London
    I guess that the science isn't our problem in the UK it's the spin and it's always been like that. I presume that it is the same for you in France?

    Although the science may be better it's the real life treatment of patients that is the concern to me.

    I've already had replies to my NHS and other UK bodies become dismissive because of the IC paper. That's the way it will be until something changes in the UK.

    The actual science has been deliberately ignored in the UK. We discovered that when we fought the NICE Guidelines here. All through the process science was ignored and patients were ignored. They (the psych lobby) had a huge steamroller of power that swept right over and crushed us. They still do and they will use it.

    It may be different in the USA and I most sincerely hope that it is different in the future in the UK and France.
  3. Gerwyn

    Gerwyn Guest

    The imperial college study is so full of holes that it should be renamed the imperial science collander and given an X rating as not fit for public viewing.I won't go on about prostitution of science etc
  4. Marco

    Marco Old blackguard

    Messages:
    1,275
    Likes:
    952
    Near Cognac, France
    My initial reaction was similar to yours. The treatment (sic) I received in the UK while useless was at least not malicious and my GPs were quite happy to discuss symptoms and make suggestions within their limited resources, but I don't underestimate the sheer cynicism of those in charge. As for France it appears to be completely psychologised. I gave my GP a complete list of symptoms which he read and then declared that in France we don't believe in this disease. I also passed on a copy of the WPI study to him and he at least agreed to look further into the research - most likely to debunk it - but at least he didn't bin it immediately. I didn't do this with any expectation of help - just doing my bit to spread the word. The problem in France is compounded by a national love affair with prescription medicines and an old school chauvinistic attitude whereby professionals, especially health professionals, do not expect to have any dialogue with their patients. They diagnose and prescribe and you take it!

    I've now come to the view that the science is necessary but not sufficient - but it is necessary. In the UK for the foreseeable future, governments of whatever political hue will be seeking to make 'efficiency savings' and the NICE papers underline how appealing the 'cost effective' CBT/GET regime can be. Only irrefutable evidence of an organic cause will make any impact on the likes of NICE and their government paymasters. At least this time XMRV is not just limited to ME and should the general population start to worry about cancer etc then thats a whole different ball game.
  5. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    It's pretty sick, that it may have to take a retrovirus, to get some movement on this disease. So many people really learnt nothing from AIDS.
  6. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    uk, how did they behave with Hemophilliacs?
  7. spindrift

    spindrift Plays With Voodoo Dollies

    Messages:
    280
    Likes:
    2
    Double Blind

    I have not been tested for XMRV.
    I hear by offer Simon Wessely to donate my blood if he ever needs a transfusion.
  8. Katie

    Katie Guest

    I'm not 100% on the facts as I've only read one article on it in Private Eye and the don't have an online archive but here's what I know.

    Back in the 70s, 80s and maybe early 90s(?) hemophiliacs were given blood when neccessary. Often the blood was tainted leaving both adults and children with Hep C, HIV and in some case CJD (mad cow) and other blood contaminants. It was also discovered that some of the blood used for them was bought from America where they drew blood from inmates in prisons which was not screened. These people are still fighting for compensation and have been treated appaulingly. Many have died, especially as you can't give a liver transplant to someone who can't clot. The government are still fighting against them and keeping it quiet. If I happen to find my copy of Private Eye I'll make this much more accurate. Someone else might be able to add/correct what I've written so far.
  9. Katie

    Katie Guest

  10. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    IC study won't mean anything if other studies prove out the WPI's findings. There will be much bigger players weighing in - Dr. Mikovits mentioned top retrovirologists in the world. The DHHS crew will be very important (Dr. Mikovits is helping to oversee the studies). Interesting how the US media didn't pick it up much.

    Katie is right - nothing from the UK is going to establish anything; the big results are going to come from the big internationally known labs in the US.

    Small study, from questionable source - its not the kind of study that will be determinative of anything.
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    yeah, I know the news media made a big deal of the study. But the researchers would have actually read it and they would be able to immediately see the problems.

    Tina

See more popular forum discussions.

Share This Page