International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Osler's Web - Read it or RE-Read it! History REPEATING Itself, Sadly

Discussion in 'General ME/CFS News' started by muffin, Jan 5, 2010.

  1. kim500

    kim500 Guest

    U.S. Department of Health and Human Services
    Research Portfolio Online Reporting Tool
    Project Information

    Project Number: 1R01AI078234-01A2 Principal Investigator(s): MIKOVITS, JUDY ANNE

    Abstract Text:
    DESCRIPTION (provided by applicant): Chronic Fatigue Syndrome (CFS) is a complex disease estimated to affect between 0.5%-2% of the population in the Western world. Its pathogenesis is thought to involve both inherited and environmental (including viral) components, as with other chronic inflammatory diseases such as, multiple sclerosis, rheumatoid arthritis, and atherosclerosis. Consistent with this chronic inflammatory context, CFS patients are known to have a shortened life-span and are at risk for developing lymphoma. We hypothesize that chronic inflammatory stimulation from active and recurrent infections of multiple viruses on a susceptible host genetic background leads to the pathogenesis characterized by CFS. The overall goal of this research project is to define these viral and host parameters in European and American cohorts of CFS patients that correlate with distinct disease phenotypes, including the development of mantle cell lymphoma (MCL) in a subgroup of the American cohort. In Aim 1) we will identify and confirm novel viral infections in European and American CFS patient cohorts. 1.1) we will use two complementary methods for detection of novel virus mRNA: massive parallel signature sequencing (MPSS) and a custom DNA microarray. 1.2) Quantitative polymerase chain reaction Q-PCR will be used for confirmation of virus gene expression. 1.3) immortalized cell lines will be developed to isolate virus and elucidate links between virus and host cell gene expression. In Aim 2), we will elucidate genetic factors of susceptibility and the dysregulation of the host defense system. Specifically, we will determine: 2.1) PBMC gene expression of 88 human genes previously confirmed as being differentially expressed in CFS 2.2) serum chemokine and cytokine profiles using multiplex suspension antibody arrays on a Luminex platform 2.3) HLA, KIR genotypes and whole genome SNP profiles 2.4) Defects in the type I Interferon signaling pathway. In each subaim both cohorts will be compared to normal and disease controls using specimens of serum and PBMC taken at multiple time-points from individual patients and taken from our unique and extensive sample repository. This study will provide information necessary for development of treatment and diagnostic strategies for distinct subgroups of CFS patients, and may identify novel virus associations, genetic signatures and biomarkers, which can predict the development of MCL, thus enabling use of preventive therapeutics. PUBLIC HEALTH RELEVANCE: The proposed research will provide significant insight into the disease mechanisms of Chronic Fatigue Syndrome so accurate testing and specific treatments can be developed with a goal of curing the disease and preventing life-threatening complications.

    Public Health Relevance Statement:
    PROJECT NARRATIVE The proposed research will provide significant insight into the disease mechanisms of Chronic Fatigue Syndrome so accurate testing and specific treatments can be developed with a goal of curing the disease and preventing life-threatening complications.
  2. muffin

    muffin Senior Member

    I am forced to agree with this one

    I am now reading the part where the DeFreitas study has gone public before publication and the CDC is trying to replicate. I am reading some of the excuses given for non-replication validation and worry that the WPI study was also rushed out into the public arena before it could be validated several times by other labs. And now - currently on 6 Jan 2010 - I am reading that the UK had not found the connection between XMRV and CFIDS. However, I am not surprised that those in the UK did NOT find the XMRV-CFIDS connection since we know how the morons in the UK feel about CFIDS/ME- The Wesselyian school of thought - is entrenched regardless of the science.

    So, is this the DeFreitas study Redux of the 1980's played out with XMRV in 2009/2010? I hope not but I fear we are repeating history yet again. This does NOT mean that I do not believe there is a viral-CFIDS-Cancer connection - I DO fervently believe there is but more research must be done to reveal this firmly. My husband's close friend is dealing with one of the CFIDs Leukemia's for the third time. He has been sick for 25 years but due to his own huge ego, forced himself to take on a very senior position in the Federal government that required brutal travel worldwide and obscene hours spent working. So now, here he sits with round three of leukemia and no one expects he will live through this one. Is there a CFIDS-Cancer cause-effect to his Leukemia? I and he and his doctors all believe so. I do hope that the WPI study wasn't rushed out into the public before it could be scrubbed and validated enough to withstand the assaults that it is now getting from other labs. I do also expect that the CDC will say the same thing: there is no connection between XMRV and CFIDS.

    I hate when history repeats itself over and over. So PoetinSF, I agree with you and hope like crazy that this is NOT going to be "DeFreitas redux" 2010
  3. muffin

    muffin Senior Member

    Scientists' claim to have found the cause of ME is 'premature'Posted by The Independe

    This is the UK study cited elsewhere in this forum.

    Scientists' claim to have found the cause of ME is 'premature'Posted by The Independent
    Wednesday, 6 January 2010 at 01:28 am
    Author: By Steve Connor, Science Editor

    The UK scientists could NOT detect a recently discovered virus called XMRV in any of the blood samples collected from 186 patients with chronic fatigue syndrome, which is also known as myalgic encephalomyelitis (ME). The researchers believe this demonstrates that XMRV is not implicated in the illness, at least not in Britain.
    One scientist involved in the latest research also criticised the previous study, which was published in the peer-reviewed journal Science, saying it was premature and that the journal should have waited until there was stronger, corroborating evidence of such a link.
    "When you've got such a stunning result you want to be absolutely clear that you are 1,000 per cent right and there are things in that [previous study] I would not have done. I would have waited. I would have stalled a little," said Professor Myra McClure, a virologist at Imperial College London and a leading member of the British research team.
    Chronic fatigue syndrome affects about three in every 1,000 people and results in severe physical and mental exhaustion. After the release of the apparent link with XMRV, many patients have asked their doctors about being tested for the virus and whether they should be taking antiretroviral drugs.
    The earlier study, published last October, was carried out by a team led by Judy Mikovits, director of research at the Whittemore Peterson Institute in Reno, Nevada. They found the murine leukaemia virus-related virus (XMRV) in blood samples of 68 of 101 patients diagnosed with chronic fatigue syndrome. Just eight out of 101 healthy "controls" drawn at random from the same parts of the US also tested positive, suggesting that XMRV played a key role in triggering the condition. Dr Mikovits told The Independent at the time that further blood testing had found the virus in as many as 95 per cent of patients with chronic fatigue syndrome. She also said that preliminary testing on a batch of blood samples sent from Britain showed that the "same percentages are holding up".
    However, Professor McClure's study, published in the online journal Plos One, failed to find any evidence of the XMRV's DNA in blood samples taken from 186 patients who had been diagnosed with chronic fatigue syndrome for at least four years. She also failed to find any virus related to XMRV.
    "We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK. The US study had some dramatic results that implied people with the illness could be treated with antiretrovirals. Our recommendation to people with chronic fatigue syndrome would be not to change their treatment regime, because our results suggest that antiretroviral would not be an effective treatment for the condition," Professor McClure said.
    The British study was carried out under the most rigorous testing conditions that minimised the risk of cross contamination, Professor McClure said. The testing was also conducted "blind" meaning the scientists involved did not know which samples came from patients and which came from the healthy controls until the end of the experiment.
    The DNA test used to detect the presence of XMRV in the blood samples is so sensitive that it would have shown up positive if just one molecule of the virus's genetic material had been present in the blood samples. However, the tests were only carried out on blood. It is possible the XMRV virus integrates its genetic material into other tissues of the body, although this is not supported by the American findings.

    Anthony Cleare, reader in psychiatric neuroendocrinology at King's College London, which collected the blood samples, said the apparent link between chronic fatigue syndrome and XMRV generated a lot of excitement among doctors and patients but the latest study had failed to replicate those results.
    Otto Erlwein1, Steve Kaye1, Myra O. McClure1*, Jonathan Weber1, Gillian Wills1, David Collier2, Simon Wessely3, Anthony Cleare3

    1 Jefferiss Research Trust Laboratories, Section of Infectious Diseases, Wright-Fleming Institute, Faculty of Medicine, Imperial College London, St Mary's Campus, Norfolk Place, London, United Kingdom, 2 Social Genetic and Developmental Psychiatry Centre, Institute of Psychiatry (King's College London) De Crespigny Park, Denmark Hill, London, United Kingdom, 3 Department of Psychological Medicine, Institute of Psychiatry, King's College London, Camberwell, London, United Kingdom
  4. oerganix

    oerganix Senior Member

    1) The Tuskegee situation was with men who already had syphilis but were not told, and were simply observed to see what the course of the illness would do to them. Still terrible, but they were not intentionally infected.
    2) The deFreitas study was NOT REPLICATED. The CDC "debunkers" repeatedly thawed and refroze the samples. They used different methods and techniques and when Dr deFrietas volunteered to have them come into her lab and REALLY follow her procedures, they said they didn't have the money for the plane tickets to go there. You can't REPLICATE a study if you do something different from the original.
    3) This latest "study" from Wessely et al is another verse of the same song. They didn't replicate the WPI study because they used different methods, different sources of samples, etc. etc. Interesting that they criticized WPI for quickly going public, that is getting published in Science after being peer reviewed, but the Wessely group then did exactly the same thing - went public in a big splash - with apparantly NO PEER REVIEW.

    I agree that it looks like the CDC and the psychiatrists of UK are trying to make repeat itself. I don't agree that it will come out the same way this time around.

    And I do agree that there is something fishy going on with this, more than just greed and incompetence.
    Katherine likes this.
  5. Denn

    Denn Guest

    ditto to Muffin

    Ditto to Muffin's original post. Thanks, Muffin, for expressing the outrage that many of us feel. I just read Osler's Web recently, and it was hard to believe it was written so long ago. Deja vu!! Everytime it seems like the research is about to uncover the true nature of the illness, something happens to sabotage the effort or the results prove to be unverifiable. It is enough to make you believe in conspiracy theories. Personally, I do not. Most of the people involved just are not smart enough for this level of effective planning. I think it is just plain incompetence and politics. Like everything else in the US, it must be sold. We need to work on some sort of transgender angle... ;)

    However, being a fatalist, I do believe that what is happening with the illness serves a purpose to the evolution of consciousness. When I look at many of the posters here, I am so impressed with the intelligence, humility, and wisdom that this illness has spawned. Bless you all!

    Please forgive me, but I just have to give Hillary Johnson a plug for crafting such an intelligent and well-written book: what could have been dry and elusive is presented with clarity and compelling insight. I hope she gets to write another volume revealing the final solution.

  6. muffin

    muffin Senior Member

    I agree

    I too am very impressed with Hillary Johnson and her book. I read all her writings on her website/blog ( and have sent her emails as well. She is my HERO and were it not for her and her dogged efforts, none of us would know all that has happened in the past. And, she has allowed us great insight into how things in the medical/scientific community really work - or don't work. She is also responsible for catching the theft of our money when Reeves played Whistle Blower to cover his own butt and position himself for a new job. Kudos for her in gettting Congress to go look and listen.

    I too am always surprised at the level of intelligence (minus my own) that I see with CFIDS people. It always makes me wonder IF IQ somehow plays into this. But I have noted that as well, especially among those that complain that their cognitive and memory issues are terrible. They must have been brilliant to withstand an assault on the brain that dropped an IQ and damaged cognitive and memory.

    Have to run, so I won't spell check this disaster.
    Fingers crossed. And, yes - we must keep fighting.
  7. starryeyes

    starryeyes Senior Member

    Bay Area, California
    Oh yeah, good point oer! lol :cool:

    Yeah, I think it looks that way.

    I'm really impressed with everyone here too and thank you Denn. Bless you too. :angel:

    That is very true, muffin. Excellent points! Don't denigrate yourself... you're very intelligent too muffin. :Retro smile:
  8. Cloud

    Cloud Guest

    Regarding the fear of a "DeFrietus Redux": Dr Peterson has always been front lines confronting the unethical antics of the CDC. He was there from the start and through the entire history with Dr DeFrietus and all the other battles waged against us by a politicized and corrupt government agency. I just can't believe for second that WPI went into this without 110% foresight of the need to prepare for the inevitable government propaganda machines backlash they would experience. WPI knows what they are doing.
  9. dannybex

    dannybex Senior Member

    Pardon my brain fog, but didn't the WPI or other related researchers/scientists dismiss the DeFrietas retrovirus findings just recently? If indeed there was such a conspiratorial coverup, then why isn't Hillary Johnson, et al, demanding that her findings be looked at again? Why is the Defreitas retrovirus no longer so vitally, critically important, like it was in Osler's Web?

    I. Don't. Get. It. :)

  10. PoetInSF

    PoetInSF Senior Member

    ...and they used wrong primers... wrong enzimes... wrong cases... wrong controls... wrong sensitivity...

    Note that, after endless demands by DeFreitas, exasperated Folks proposed blind test with the same cases that DeFreitas used. DeFreitas balked with more execuses and then, when the result came back, she identified a bunch of false positives. More excuses from DeFreitas claiming her probe was truncated.

    Also note that, when Cheney sent samples mixed with controls, she identified controls as cases. Then she simply threw out the controls and replaced them with her own, thereby unblinding the experiment to claim 0 false positives.

    The bit about the patent fight is interesting too. At one point Wistar was expecting to profit $ billions from DeFreitas work. Next Koprowski was fired by the Wistar board and DeFreitas funding was cut off. I suppose Wistar board consipred with CDC too.

    Still, Hillary Johnson and her fans believe DeFreitas was the victim of CDC conspiracy. This is a matter of religion, not science. And now I see that many people already made up their mind regarding WPI and XMRV, thanks to Hillary Johnson's fiction. To them it will be another coverup if/when WPI study fails to get confirmed. This is what I mean by the repeat of DeFreitas affair.
  11. Cloud

    Cloud Guest

    The only statememt I have seen from WPI regarding DeFrietus was that xmrv is not the same Retro-virus that she had discovered...period. I have no idea if Dr Peterson or the rest of WPI views the DeFrietas drama as a conspiracy. All I know is that after 25 years of being on the front lines dealing with the CDC and their propaganda, Dr Peterson surely didn't approach October 9 without having everything in order.
  12. Cort

    Cort Phoenix Rising Founder

    I'm afraid I'm with Poet on this one. I've been rereading parts of Osler's web as well - trying to understand what happened with that first retrovirus. I remember being outraged when I first read it, although to tell the truth, there's just so much information in that book that what I got - at that point - was just a general feeling of disgust and anger.

    Now rereading it I came to the conclusion that despite the CDC's problems that Folks, the retrovirologist there - really wanted and tried to find the virus and couldn't. Plus the fact everyone else who tried to find it - and there were a good number of labs - failed made me think that there really was nothing here.

    This is not to say that the CDC acted well - the jokes were there and the money ran out but the retrovirologist team tried. It was complex issue for sure. I actually got so absorbed in it that Iwrote a paper on it - its out soon. Its a fascinating story.

    I don't think history will repeat itself;I think there's too much and too many big players working this issue. I think we will be clear in the end about XMRV however it turns out.
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    Just a few key points. Actually, folks at first did find the virus. But when he tried again, then he didn't.

    Also, the new guy at the CDC, back then, exposed the misspent funds at the CDC. Hillary was getting a sense that there was a problem in the spending, but she was having a real hard time proving it with documents. Then without asking, she got an anonymous source, at the time. I forgot his name.

    Also, DeFreitas virus was replicated by a researcher in Houston. Glasgow said they saw it but it was endogenous.

    And you are absolutely right, CDC absolutely refused to follow the DeFeitas testing methods. And she said it was real sensitive.

  14. muffin

    muffin Senior Member

    Go back and read how the DeFreitas Retrovirus WAS indeed found and replicated WHEN the protocol SHE established was followed. The CDC did NOT follow it and of course, found nothing - as was expected. But the book goes on to hit other findings that were replicated and there were a number of researchers who did believe that there was something, some sort of virus - be it a Retrovirus or HHV6 or a Foamy Cell virus, etc. But they did note and replicate and SEE that there was indeed something in the blood of the CFIDS sick.

    DeFreitas was set up for failure from the start. SHE was pushed into going public when she was not ready. And I hope that WPI did not get pushed by CAA into going out with XMRV too soon as well. It IS history repeating itself; However, as Cort and others have noted, THIS TIME, we have the Internet and other labs working on this. There is also the cancer connection and that is BIG MONEY and BIG interest. So, let's hope the rest of this oddessy takes a different route than the first Retrovirus did. God bless Dr. Defreitas, whereever she is now.
  15. bakercape

    bakercape Senior Member

    Cape Cod. Mass
    I still am perplexed at why no one is still looking for the Virus Defreitas found in her studies. It seems there was a replication by Folks at one point and another in Houston by a lab there. Then after that replication was not found.Bbut how many people followed her protocol? No one that I'm aware of.

    So to me there is no clear answer of what she found. The truth has been in limbo for 20 years. I wish WPI or some researcher would follow her protocol exactly and see what they find.

    It's like if people stopped looking for XMRV now because the UK studies and studies in Germany are not finding XMRV. Well if you don't look for it the same way and in the same patients then of course you may not find the same pathogen.

    I don't think people will quit looking this time because so many people are involved and it is accepted that XMRV exists. Also WPI is not going to quit on it and they have resources and support and true collaberation that poor Elaine did not have.
  16. flybro

    flybro Senior Member

    Iread soemwhere that DeFreitas filed for a patent on their testing procedures.

    I remem it saying about it was a very lengthy detailed document.

    Whats the chances of someone checking that out.

    To see what could be done with todays techniques.

    To look again at what DeFreitas, did or didn't find.
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    I agree that the snow ball is rolling down the hill and won't be stopped this time. A whole new group has picked up on it, people with no interest in CFS. Plus, there is the other illness aspect, especially autism and cancer.

    Klimas and others said there would be some studies with negative findings. Evidently, it isn't that unusual and shouldn't scare off the others. Thankfully, likely as early as last summer, other researchers started their research after the secret meeting last summer. So whatever results they would find they have already found. In fact, likely finished and just waiting for publication. I expect the next six months to be real exciting for us.

    I would also like to see someone look again at the DeFreitas virus.

  18. jackie

    jackie Senior Member

    It's here, maybe!....Topic/Thread "XMRV Research and Replication"...go to page 4 and Aftermath started a thread on the "De Freitas Retrovirus Publication". I THINK someone gave a link to the Patent Application in there (too many pages for me to re-read today!).
    I know at the time, I used the link (where ever it was!), read the entire app. (believe it was applied for under the name of the Lab?) and printed it out (have lost it, of course!).
    Sorry guys...I can't remember how to give a link! It WAS a lengthy doc.

    jackie:Retro smile:
  19. jackie

    jackie Senior Member

    Found it...the Thread is Aftermath's "De Freitas 1991 Retrovirus/CFS"...(pg.4) #29 has the patent link, for a leisurely Sunday afternoon read. (Whew!)
  20. Mithriel

    Mithriel Senior Member


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