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!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

WPI Letter to Dr McClure ****

Discussion in 'XMRV Research and Replication Studies' started by VillageLife, Apr 12, 2010.

  1. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    639
    Likes:
    1,073
    Mercer Island Wa
    Unum is actually in control of lising cfs as a mental illness disorder

    They run the disability claims for the UK which Wessely, one of their cronies, is on their advisory board and he has also financial ties to companies that produce the GET and CBT for the health profession. There is more class action lawsuits against UNUM then any other insurance company about 200,000 annually. There motto is deny deny deny and reward those who deny the most claims with the Vulture award. They send thousands of dollars for 'research' to Wessely. There purpose is to keep CFS a psychiatric illness in order to pay less benefits then if it were classified as an actually disease. So there is a lot of money directed at researchers who play the sick psycho game to label CFS a mental health issue to save UNUM money. Why wouldn't they get them to sabotage the results.





    PROFITS OVER PEOPLE!
  2. Trooper

    Trooper Senior Member

    Messages:
    105
    Likes:
    1
    UK
    This is a great letter from the WPI - I just hope the reply, if it happens, is made public too : )
  3. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,302
    Likes:
    1,764
    Australia
    No, I don't think it is just a coincidence.
  4. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    Disinformation has to be refuted in the strongest terms. The 'delay' in WPI's clearly public letter will be for legal reasons, crossing T's dotting I's as my fellow Yorkshireman (woman) Polly has commented. All credit to the WPI for their handling of this. When we look back in years (months) to come my bet is we will all say 'oh sure I see now why x happenned, why they did y, why z had to happen after y'.

    And how in fact do we define disinformation?

    Is disinformation not just a polite way of saying lies?

    Annette Whittemore is publicly stating you knew our cohort was not from the Lake Tahoe outbreak because we clearly stated this, how then can you continue to spread 'disinformation'.

    This whole saga smacks of the old adage 'one lie leads to another and another'.

    One kind soul on here, in a mood of forgiveness has said I kind of feel sorry for Myra McClure - as a fallable member of the human race I understand this sentiment. However, if when the dust settles some of the protagonists in this story (which might eclipse Osler's Web) should be made to answer for their disinformation or indeed lies. if it can be proven they have knowingly attempted to subvert the course of science - JUSTICE!
  5. natasa778

    natasa778 Senior Member

    Messages:
    1,410
    Likes:
    1,209
    London UK
    I totally agree. There must be much more to this. Even now with this letter we don't know half the story that went on through private channels.
  6. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Yes, of the worst sort. No dictionary handy, but I'd say it's a lie to the masses, often used for political manipulation.

    Without knowing anything else, I don't feel sympathy for anyone involved in bad science. We've suffered too long to have people sidestep their part with a lame excuse.

    Waiting to see what x, y, z as well as a-w and A-Z all turn out to. be. Hillary may have to do a 10 volume set.

    Otis
  7. Alexia

    Alexia Senior Member

    Messages:
    164
    Likes:
    0
    Portugal
    You made me laugh! It all seems a bit surrealistic and like a soap opera! The next Chapter Please...
  8. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Or maybe it's a Monty Python sketch. "Scientists behaving.badly".

    On the other hand I sure would love some cooperation...

    Otis
  9. Jill

    Jill

    Messages:
    51
    Likes:
    54
    Auckland, NZ
    My take

    Like many of you I see this as a signal to 'us' that something bigger is about to happen. This would not have gone out without the legalities thought of. Harvey would be well versed in how to handle such scandal. So , what next. Good news I'd like to think. I know for a fact that scientists in NZ have been offered reagents and all details of how to do the XMRV testing by WPI - so WPI aren't wrong there. Someone was hiding information, and not the WPI. God this is like the scandal of the early AIDS days - though kinda worse. Something big I hope will happen soon - perhaps May London Conference?
  10. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire
    wish i was off to the may invest in me conference but its just too far to travel id be jiggered before id even got off the train :-( . i do know folk who are off though they are under strict instructions to keep me up to speed lol .

    ill be honest i hope heads are gonna roll over this and i know just whos heads id like that to be . i think we will all be able to sort the wheat from the chaff in the coming weeks as to just who has got me/cfs patients best interests at heart here in the UK , though i think we've all kinda worked that one out long ago . will be nice to be proved right though.

    No way would WPI have released such a letter without going through all the legalities involved for one they aint stupid and 2 i dont think they are into proffesional hari kari .

    i dont know if i can handle all this excitement lol im usually so chilled out and down to earth but i will make an exception methinks ;-)
  11. Min

    Min Senior Member

    Messages:
    1,183
    Likes:
    1,178
    UK
    it's so wonderful to have these people fighting for us in light of the abuse we constantly receive from the UK medical profession.
  12. bullybeef

    bullybeef Senior Member

    Messages:
    476
    Likes:
    44
    North West, England, UK
    I agree with you, Jill. I really feel the experts are on to something with XMRV, but maybe it is awaiting publication.

    So much as happened over the last few weeks, and the pandemonium seems to be gathering pace. I also believe the WPI, the Cleveland Clinic, and the National Cancer Institute have gone to an awful amount of trouble for XMRV to be doing nothing, or at the very least a 'piggyback' virus. Saying that, even Dr. M suggest in one of her recent lectures, she'd never heard of the term 'piggyback' as far as science is concerned. And she continued by saying she doubted a retrovirus could piggyback on another virus, as there is no knowledge of this happening with other retroviruses.

    I feel the worm as turned. Canada banding ME blood donors; another independent study suggesting the probability of XMRV causing certain prostate cancers being very high, and transmission looks to be via blood and semen.

    And being completely rational, XMRV is a retrovirus, and from what we know of other human retroviruses, they are not pretty, fluffy viruses. The are devastating, and why should we be so surprised by XMRV being any different from other disease casing retroviruses?

    And when does someone finally say, yes, XMRV is real, causes disease, and is a new blood born contagion. Whom rubberstamps this and has the final say?
  13. Righthammer

    Righthammer

    Messages:
    19
    Likes:
    0
    All of this is really getting my interest up .. It is highly unlikely that the WPI would still be engaging in public spats with other scientists if they were not 100% confident with their findings regarding XMRV in the 6 months or so since the science paper .Will xmrv really be our answer ! Especially when we hear that some of the Aids drugs will possibly work. Does anyone have any idea when the next (or first real) replication study is due ? One has to think that one must be due soon .........
  14. bullybeef

    bullybeef Senior Member

    Messages:
    476
    Likes:
    44
    North West, England, UK
    I believe the Swedish study is due anytime now, late spring, early summer.
  15. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    15
    This all is very strange and exciting. I hope this action of WPI is indeed a well considered part of a plan, and not the product of genuine outrage at the behavior of these other researchers.

    In politics and history it is a well known phenomenom that people interpret actions by key players as 'part of a plan/ tactic" even when they are not.
    I am not saying (nor hoping) that that is the case now, i just want to be conscious of this human tendency. We have to keep in mind that the WPI is deeply rooted in the cfs community (e.g. through the Whittermore family's daughter, the donations, human compassion, contact with patients), this all may make them want to stand up for patients and defend us (and their own work), even when this is not yielding any material rewards and even when this is not the common thing to do in the scientific community.
  16. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
  17. paddygirl

    paddygirl Senior Member

    Messages:
    163
    Likes:
    20
    Enraged mother

    Quite simply, when the dust settles and you have all the proof you need, sue them. UK patients need to get together and go after the people that did these things to them.

    I got a small taste of this years ago. I got called in by my daughters school. she was malingering they said, a short lady pushed me into a room by poking her finger in my back. I knew immediatly that all the tales of bullying my daughter told me about were true. I'm slow to burn, very, but I did a
    Vesuvius that day.

    She turned out to have Glandular fever (think you call it mono?)

    There is no Statute of Limitations on crimes commotted against children, and you were obviously young at the time.
  18. MaryAnn

    MaryAnn

    Messages:
    44
    Likes:
    0
    I agree with your outrage. To think of all the suffering that has occurred by ME/CFS individuals, and now it appears that CYA is beginning. There definitely should be heads rolling and outrage. I suspect the public will be outraged too, especially if an estimated 10 million+ have XMRV.
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    This was my question and is the issue in the discussion about Kurt's editorial. Also I asked it in the thread of questions for AIDS nurse.

    I think the answer is that maybe a governmental agency, like CDC or blood bank people make a statement. Or, a drug company comes out with a drug with study that proves it works. If the actions of that drug is shown to work (approved by FDA) then it gets you close to knowing cause- see Lyrica and fibromyalgia) But also, absent that, it is a gradual building of evidence through published studies and each individual doctor makes up their own mind.

    On PBS last night, I happened upon a documentary about polio. I only got a small portion. But they showed the Salk vaccine and another outspoken scientist who didn't agree with it. There was desperation and the vaccine was tried. It seemed to work. And then some of the kids who got the vaccine came down with polio. The opposition said, "I told you so. Vaccine doesn't work." But it was discovered that it was a bad batch with some live virus.

    Point being.... what we are going through now is not unusual. AIDS saw the same controversies. Ulcers, same thing. Finally, either the vidence builds or government does something to end the controversy.

    All I am glad of is that I have some drama entertainment while I wait for the next revelation.

    Tina
  20. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Don't expect a reply. Whittemore's letter was not intended to start a dialogue or to elicit cooperation. It was a challenge and exposure.

    McClure knows it too.

    Tina

See more popular forum discussions.

Share This Page