1. Patients launch a $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!
Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Telebriefing is up and available to listen NOW: 5 pm EST

Discussion in 'XMRV Research and Replication Studies' started by Rrrr, Aug 23, 2010.

  1. Bob

    Bob

    Messages:
    7,753
    Likes:
    9,286
    England, UK
    Well, this made me start thinking...
    In relation to Brigitte Huber's presentation regarding her XMRV study, at the Invest in ME conference...
    Prof Huber said that she couldn't find any XMRV in her samples, but that she tested positive for very similar viruses...
    She put these findings down to contamination in her own lab...
    But I wonder if she was in fact finding other MLV's.

    After Huber's samples initially all tested negative, when using a highly specific assay based on XMRV taken from prostate cancer cells, she then tested them with another type of test (nested PCR). This gave some positive results. But after doing further studies, she said at the conference: "The final conclusion which we came to is that this was due to a contamination... Some reagent in our lab is contaminated."

    I don't know what evidence made her come to the conclusion that it was a contaminant... I wonder if it was conclusive evidence.
  2. Rrrr

    Rrrr Senior Member

    Messages:
    1,397
    Likes:
    262
    Holy crap! I listened to the briefling twice and did not get any of this from it. What does that tell you about my ability to handle scientific information on an auditory level? THIS TRANSCRIPTION WAS EXCELLENT. Thank you.

    My question: Does the above transcription essentially confirm that Dr. DeFreitis found this same family of retrovirus 20 yrs ago?
  3. Bob

    Bob

    Messages:
    7,753
    Likes:
    9,286
    England, UK
    Now that's a very good question! And it's looking more and more likely that the answer might be 'yes'!
  4. Rrrr

    Rrrr Senior Member

    Messages:
    1,397
    Likes:
    262
    Again, excellent work! Thank you OneWaySurvival!
  5. Rrrr

    Rrrr Senior Member

    Messages:
    1,397
    Likes:
    262
    the samples are from 15 yrs ago (tho some they re-drew the blood AGAIN this past summer, from the same patients: the same viruses were there, only they had mutated, as expected). and the samples were from dr komeroff's patients, a long-time harvard cfs researcher. they had been frozen 15 yrs ago. these were the same samples Dr. Lo used to try to find mycoplasma 15 yrs ago. there is a published study on that work.( but some of us were questioning if they were looking for the mycoplasma in a way that it could even be found. see the thread on Dr. Lo, somewhere on this forum for that study.)
  6. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
  7. Dolphin

    Dolphin Senior Member

    Messages:
    6,519
    Likes:
    4,898
    Julius sent me these:
    https://www.yousendit.com/download/aHlTQk13Mm1ENlN4dnc9PQ
    and
    https://www.yousendit.com/download/aHlTQk13TXZPSHl4dnc9PQ

    They will only stay there for a week as I only have a free yousendit.com account
  8. Dolphin

    Dolphin Senior Member

    Messages:
    6,519
    Likes:
    4,898
  9. Megan

    Megan Senior Member

    Messages:
    230
    Likes:
    13
    Australia
    Thanks Dolphin and villagelife. Managed to lie down with a pillow over my head and listen to it, it's all quite amazing!
  10. SOC

    SOC Moderator and Senior Member

    Messages:
    5,141
    Likes:
    5,952
    USA
    Hey, does that really work? I have a terrible time processing audio-only complex info. Maybe I'll go get my pillow and listen to the telebriefing for myself. *grin*
  11. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    I've now listened to most of it and i have to say i think both Dr. Alter and Dr. Lo are great. I have no problem trusting Lo.
    I especially like that they say the variability makes the case stronger.
  12. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    92
    Utah
    I'm would really like to know:
    1. Can the polytropic MLV's found in the paper still be passed between mice and humans, as opposed to XMRV, which can no longer infect mice?
    2. What is the health status of the 7 out of 8 people that they got fresh blood from that still have the virus?
    3. Since this study seems to imply a faster mutation rate than was thought a year ago, could this have anything to do with the relapsing/remitting nature of the disease and why sometimes it changes over time?
    4. How much evidence are the deniers such as Reeves, Wessely, McClure and ERV going to need before they finally give it up?
  13. Sunshine

    Sunshine Senior Member

    Messages:
    208
    Likes:
    2
    UK
    When it's proven infectious from person to person.

    Once this is established, (as it was for HIV) if Reeves stated/wrote in 'research' as a CDC employee and 'expert' in CFS, that CFS was in your mind, then if you read this believing it not to be a lie and donated blood that infected someone then you could take legal action against the CDC for allowing their 'experts' in CFS (Reeves) for giving the public dangerous opinions on CFS.

    He's already on shaky ground now by producing these appaling 'research' papers which easily manipulated people may well believe, or partners of people who are being asked to give blood. E.g. people can/will read Reeves views on CFS and present this to people they are trying to co-erce into giving blood to say it's safe. This is possible as XMRV/MULV can be present with no symptoms, that is the terrible danger of it. Someone may have little to no symptoms but be worried they could have CFS (undiagnosed) but be talked out of it (via CDC public disinformation), and go ahead and walk down the local blood bank.

    People of easy influence or low IQ with CFS may believe they are mentally ill (from reading the CDC website) and therefore go ahead and give blood, even now. Not everyone with CFS and possibly MULV'S/XMRV will have a normal IQ or be psychologically robust. Viruses and diseases affect all types of people and of course, people are diverse.

    You and I on this forum are not the average person with CFS. We have a strong interest in CFS advocacy and research. We know about CFS. Most people, do not. Many people are in denial and have nothing to do with CFS whatsoever. These people are walking time bombs. Some hate CFS and having CFS and may develop psychological issues to being in denial to the extent they purposefully give blood. This has happened in HIV in the past. There are people who die of cancer who are in total denial also and refuse any treatment. We all react to terrible news in different ways, and not always in a sensible and controlled manner. 'Trusting' CFS patients to know if they have XMRV/MULV without a test is a total disgrace. All patients with CFS, (even if they claim to feel 'well' on the day) should be banned for life from giving blood.

    You don't have to be intelligent, informed, sensible and aware of your body and 'CFS' research to be a CFS patient, many are not like this. Similarly you don't have to be empathic, honest and caring to be a doctor. Psychopaths, sociopaths, and malignant narcissists can and do become doctors too. Dangerous doctors largely escape detection in practice, as patients are loathed to report them as patients need doctors and thus fear doctors, so they put up with strange or inappropriate comments that outside of the medical setting, would often get employees in serious trouble.

    This mixture of CFS patients not being aware, not caring (due to mental breakdowns from decades of hatred over the label CFS), or being cognitively damaged through brain injury from XMRV and being unable to make correct judgements directly risks the blood supply, especially in combination of genuine hatred or dismissal of CFS patients by many doctors and medical professionals who would not stop a CFS patients from donating blood.

    Reeves time is up and the CDC know it. Two more positive XMRV in CFS studies are coming up, the evidence is growing stronger so they will have to stop very soon or face legal ramifications from diagnosed CFS patients who can prove they caught CFS from infected blood given by a donor who thought there CFS was in their mind/posed no transfusion risk as they had no symptoms on the day of transfusion because the CDC and other government agencies never told CFS ME patients they had XMRV/MULV's or even offered a test for multiple decades, spreading the infection around the world.. They couldn't tell the public as they stopped Elaine DeFreitas's research (around 20 yrs back) to be able to find it, and as an influencial body if the CDC can't find something, few else bother to try or have funding to try. This nearly happened to XMRV, if it had not been for that brilliant 'leaked' paper. If that hadn't been leaked, then what? Officially the CDC said there was 0% finding. It would have been left like that.

    When HIV was first shown to cause AIDS and a first treatment was available (AZT), countless people died unnecessarily due to doctors simply refusing to admit these horrible 'gay people' had something that should be treated. Homophobia back then was quite prevalent in society. The gay rights movement has changed that in western democracies to some extent. Tragically, there is no CFS rights movement as people are too sick to get out the home/or tolerate walking/exercise and especially stress these protests would involve. The only movement we have, is online and amongst ourselves and for that we had to wait for universal online internet access. CFS and ME were around long before the internet though. So we joined the story too late in our own demise. Too late to stop and change entrenched views about ME, which became CFS in the eyes of the deceivers.

    Personal bias and discrimination is rife in the medical profession today.In the past HIV patients died due to disbelief and apathy in their masses, and a % of CFS patients have died over the years also and continue to do so. This theoretically could only stop, when doctors are not idiolised by the authorities and patients alike, but this cannot happen in practice. It is human nature to be submissive to someone who can protect your life and who you need to help you, yet this in turns give people on a power trip even more ability to run amock, especially with psychological theories on a disease with no diagnostic test.

    An abuser always selects their prey, studies them well, and learns how to control them to be able to deliver sustained attacks that cannot be defended against. Controlling CFS was simple as it was sanctioned to be allowed to slate CFS patients as mentally ill, despite CFS never being classified a mental health illness.

    Any governemnt health agency could have stepped in from day one, and said to people like Reeves and Wessely, 'what are you doing'? They said and did nothing and still actively encourage psychological theorists as it's cheap and turns attention away from a new public health disaster that will cost trillions to sort out.

    'CFS' was the ultimate fantasy for someone with these ideas in the their heads, and this is why they cannot stop, even to this day. They are addicted, and still off the lead biting whoever they can who smells of CFS/ME.

    I think WPI will tie the loose snarling dog to the fence and the authorities will come take it away and put it somewhere where it can't hurt anyone, any longer.
  14. Megan

    Megan Senior Member

    Messages:
    230
    Likes:
    13
    Australia
    It works for me. When I feel shit I just lie down in the lounge room and put something over my eyes and listen to podcasts. Must admit this one was a bit more challenging than most!
  15. markmc20001

    markmc20001 Guest

    Messages:
    877
    Likes:
    80
    My impression was Dr Lo has been aware of this retrovirus for a long time and had been studying it. Especially considering he came out with detecting all these different variations of the virus. I think they are way ahead in htier understanding of CFS then they are letting us know.

    Anyways. all good news because of the upcoming studies, and hopefully treatments.
  16. CBS

    CBS Senior Member

    Messages:
    1,356
    Likes:
    216
    Western US
    Hi Laurel,

    I don't have answers for your first three questions but I suspect that that 'answer' to your fourth question is that no amount of evidence in the world will convince some people. What I suspect will happen is that those who cling to their outmoded views in the face of a growing body of evidence will find themselves closer and closer to the fringes, much like the AIDS deniers who still question the role of HIV in AIDS. As for Reeves, Weesely and others, I'm finding it harder to care if they embrace the new research and easier to dismiss them as they marginalize themselves.
  17. pine108kell

    pine108kell Senior Member

    Messages:
    140
    Likes:
    26
    I'm pretty sure I read they were all still ill, even the one that tested negative. I don't know where I read that or how ill they still were. Not a good answer, but I noticed no one else provided one yet.
  18. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    92
    Utah
    Thanks, CBS and Pine. I haven't read the whole Alter paper yet--I'm sure there are lots of tidbits in there. I'm finding it hard to care too, except when it affects me directly, such as my access to healthcare etc.
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    With Lo and Alter on our side, who can be against us?

    I really do think the whole attitude at NIH and FDA has turned. They are doing the Lyndoville study. And in that, the application assumes XMRV is in the blood of those patients. Also, in this telebriefing, they said they were testing 1,000 blood samples. (I think that is where I heard it. Or was it Mindy's blog?)

    Tina
  20. ahimsa

    ahimsa Senior Member

    Messages:
    1,015
    Likes:
    842
    Oregon, USA
    (if this is a duplicate then please delete - thanks!)

    I saw a few partial transcriptions of the briefing but after scanning this thread I didn't see a link to the PDF for the full transcript of the FDA briefing. So, here it is (found the link on the Whittemore Peterson Institute web site, on the news page):

    http://www.wpinstitute.org/news/docs/FDAbriefing_082310.pdf

    For those of us who can absorb information much better when reading than when listening this is a great alternative (although be prepared for plenty of typos and misspellings!).

See more popular forum discussions.

Share This Page