Friday, September 24, 2010

1994 CFS MLV FOLLOW-UP


I emailed a few questions to Richard Easingwood, one of the New Zealand coauthors of a 1994 study that identified retroviral particles from the peripheral blood lymphocytes of ten of 34 CFS patients and none of the controls. Back then, the scientists reported that the majority of viral particles were similar to lentivirus and and murine leukemia virus. Now a senior electron microscopy technician at the University of Otago, Easingwood wrote back:


"That [study] was a long time ago! I have not revisited this research since then. My role in that study was fairly limited—I performed the electron microscopy and that was about it. To comment intelligently on it I would need to review the images (which I still have in storage) and possibly prepare more sections from the specimen blocks (which I still have) in the light of my electron microscopy experience now. I have 15 years+ extra experience since that paper was published and may look at the data differently.  If I did this and reviewed the current literature I would be better able to form an opinion about this research.  However, I will attempt to answer your questions as best I can.

Do you believe that XMRV may be what you found back in 1994?  Why or why not?
They may have been virus particles. The structures we found were intriguing but it is possible that they were normal structures or artefactual.

Back in the 1990s, did you believe that a virus or retrovirus was likely the cause of ME/CFS?
I had no opinion on that back then.

Are the blood samples from those patients still frozen somewhere—or have they been discarded?
I don't know what happened to any of the samples other than those that I prepared for TEM [transmission electron microscopy]
, which I still have. If there were frozen samples I don't know their fate. However, the resin-embedded cells I have are stable indefinitely.

If the frozen specimens are still around, would you be interested in looking at them again?
I would be very happy to review the existing old negatives (most of which haven't been published) and the stored resin-embedded samples. I suspect some kind of ethical approval may be required, I would have to check this.

16 comments:

  1. Mindy is digging deeper... Love it!!!

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  2. This is the type of reporting I love to read. I really hope he takes another look at the slides and lets everyone know what he finds.

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  3. Mindy, this is stunning investigative reporting, bravo!

    It almost gave me shivers to read this, so astonished that you tracked down this researcher in New Zealand and got this remarkable scoop.

    This is terribly exciting. Can we hope that this research lead will now be picked up, and funded, and pursued further, 15 years later?

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  4. Dear Dr. Easingwood,

    I'd like to express in advance my appreciation for your willingness to revisit these samples. While the outcome of any such review of patient samples is unknowable at this point in time, I suspect that you have a grasp of their importance if they were found to contain XMRV or MLVs.

    There are a lot of severely ill patients who have struggled with this disease for decades, we desperately need an explanation and hopefully a practical and effective treatment that could bring some physical relief. Even more important for many of us is the need for careful and thorough science as that is where the real answers lie. Again, my thanks for your willingness to assist us in leaving no stone unturned while seeking the answers we all need.

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  5. Culture and PCR those babies! (Albeit resin-fixed sounds rather bleak.) Send 'em to WPI and see if they can do anything with them. Especially if the patients are still alive today, and they can carry out a longitudinal study.

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  6. Very exciting info. Hope he goes back in and looks deeper. Very curious to find out more and how it may impact us. Thanks for another great article.

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  7. Wow, my own sample may be in there. Bit of a long shot as I did give a sample to Otago Uni but before 1994.

    I am a survivor of the New Zealand Tapanui Flu and tested XMRV+ thru VIP dx.

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  8. Quite a cliffhanger! Very, very interesting.

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  9. Thank you, Mindy, and thank you, Richard Easingwood. I am finding this amazing. One courageous reporter is doing now what the CDC, with the cooperation of the CFIDS Assn of America, could not do in all these years.

    If it does turn out that these virus particles could have been XMRV back then, how will the government and the CAA deal with the rage from people like me who have been deprived of our lives for all this time. It is bad enough to think they committed a sin of omission by not helping us, but if, indeed, they have committed a sin of comission by stopping DeFreitas' research, when she was so close, there will be no way for them to cover up and save face.

    Patricia Carter
    www.mecfsforums.com

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  10. Wow, those original specimens could turn out to be evidence in the worlds largest ever class action. Imagine if the whole planet joined together to sue the CDC hahaha!

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  11. you do a great job Mindy, thanks!

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  12. Mindy you are amazing, thanks. Can you ask Dr Easingwood if he is in touch with Prof JC Murdoch, who wrote of a possible retroviral connection to M.E. in 1987 and that it was an acquired immune deficiency syndrome - your blog entry 'A Commotion in the Blood' in July. I believe he has recently returned to New Zealand....

    There was a video of a 1996 Primetime news report on CFS, and Cheney had brain scans of lesions on patients brains that a neuroradiologist described as AIDS, and Cheney and Peterson then found the immune dysfunction. I believe CDC knew all along it was an epidemic disease and that is why they called it CFS, to make us invisible. CDC website states M.E. is not CFS, but this is the diagnosis given to M.E. patients so they will not be believed.

    M.E. is in the ICD-9-CM as a neurological disease, CFS is under Malaise and Fatigue and was not an evidence-based definition. I support the petition to have M.E. recognised and an M.E. definition to be accepted for diagnosis and insurance or disability support.

    Looking forward to your next update Mindy!

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  13. The New Zealand Govenment also needs to be taken to task here for not funding research into the "Tapanui Flu" outbreak

    Also Auckland University for fostering the views of Simon Wessely and causing considerable harm and distress to people with the condition in the country.

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  14. Mindy, also Les Simpson of New Zealand with the red blood cell deformities, what is he doing now? Murdoch would know him. Best of luck with your research.

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  15. Any word on whether Dr. DeFreitas can re-visit her work and see if the virus she saw was XMRV or another MLV?

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  16. Oh yes, Les Simpson. I have blood in there, too. Otaga University letterhead. I seem to remember that. Wow, if those samples are still around, then he may the most extensive collection around.

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