Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

Retroviral Cause Suspected as Early as 1987

Discussion in 'XMRV Research and Replication Studies' started by Forbin, May 23, 2010.

  1. Forbin

    Forbin Senior Member

    Messages:
    950
    Likes:
    3,987
    Retroviral Cause Suspected in 1987 Pub. Letter

    This might be old news, because it literally is old news, but I was reading Dr. Bells The Doctors Guide to Chronic Fatigue Syndrome and in it he cites a letter written in 1987 by Professor J.C. Murdoch of New Zealand to the Journal of the Royal College of General Practitioners in which Dr. Murdoch states that he believes that M.E. is caused by a retrovirus.

    My impression is that Dr. Bell was citing this as the earliest example he could find in print that M.E. could be caused by a retrovirus.

    I dont know if the intervening years have surfaced earlier examples, but I find it historically interesting. Here is the pertinent passage:

    A subsequent study, as yet unpublished, has shown significantly decreased cell-mediated immunity in 33 patients as compared with age and sex matched controls. This latter study has led me to believe that the syndrome is an acquired immune deficiency syndrome and we are presently searching for evidence of retrovirus infection in our patients.

    J.C. MURDOCH​

    The entire letter can be seen here

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1711121/?page=1
     
  2. awol

    awol

    Messages:
    417
    Likes:
    0
    Yes, see earlier threads on DeFreitas
     
  3. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,323
    Likes:
    4,359
    London
    Forbin, I contacted some of the New Zealand doctors and they were all very interested in the XMRV news. The ones I spoke to (by email) were not surprised that a retrovirus had been implicated. There is still a question mark over the virus that Dr Holmes found and he confirmed that it was different to XMRV.

    Otago Uni (who worked on the 80's NZ) ME outbreak will be doing further research into XMRV anyway.

    University of Otago Division of Health Sciences.
    Indicative projects for 2010:

    XMRV as a potential cause of chronic fatigue syndrome

    Supervisor: Professor Warren Tate

    "Currently there is no diagnostic test for Chronic Fatigue Syndrome (CFS) although millions world wide are affected with the syndrome. A very recent Science paper (9.10.09) has linked CFS with a rodent retrovirus XMRV (rather like HIV-1) that can as well cause aggressive prostate cancer. About 70% of the affected group had evidence of the virus compared with only 4% of the control population. My lab has done developmental work on a rogue RNAse L cleavage fragment for a biomarker since it is claimed to be specific for CFS and indirectly to deplete affected cells of 50% of their ATP. We would like to examine the virus and its translational mechanisms as a potential drug target and establish the RNAse L fragment as a biomarker."
     
  4. Jill

    Jill Senior Member

    Messages:
    207
    Likes:
    708
    Auckland, NZ
    Yes, that's right. Mike believed he saw (i think he has electron micrographs) a lenti type retrovirus. Over here in NZ, Mike and Peter Snow (who coined the phrase Tapanui flu - as that is where an outbreak occurred - although a lot more sporadic cases happened that year throughout the country - just Peter saw a lot as he was only dr in Tapanui) termed 'whatever it was' "Poor Mans Aids". Mike no longer works at the Uni , but Warrens co-worker who was there when Mike was doing this work still is - so its all good news. Warren is waiting I think on ethics committee approval still for the above study. A sample bank is going to be created - if the rumours I hear are correct - so that is great. All Mikes samples were literally thrown away about 4 years ago. He and Elaine both got tainted with same brush - unfortunately for both of them.
     
  5. Mark

    Mark Former CEO

    Messages:
    5,224
    Likes:
    6,197
    Sofa, UK
    Indeed: searches for 1987, Defreitas, and osler's web would show a great deal of information and discussion about the history of a retrovirological connection. 1987 was a pivotal time in many respects, as Reeves and Wessely began to gain control of ME/CFS in US/UK, when DeFreitas' retrovirus discovery was not replicated elsewhere. At the same time, the spike in autism, MS, and other immune conditions begins to accelerate. And the big list of names locked up till 2070 or so dates from 1988, but that may not be relevant...

    One discussion I remember is here, where I summarised part of that story, giving the Benefit of Doubt to the CDC et al:
    http://www.forums.aboutmecfs.org/sh...vernment-cohorts&p=16753&viewfull=1#post16753

    Unfortunately the strain of attempting to construct a perfectly reasonable account of these events took rather a harsh toll on me at the time...
     
  6. Forbin

    Forbin Senior Member

    Messages:
    950
    Likes:
    3,987
    Thank you all. Yes, its clear that some suspected a retrovirus even prior to 1987.

    According to Oslers Web, an ill cardiologist (with the pseudonym of Jake Lindsay) proposed to DeFreitas that she investigate the possibility of a retroviral connection in November 1985 [p. 70].

    I brought up Professor Murdochs letter (published two years later, in November 1987) in my original post because I wondered if that was the first time that anyone had aired the idea in print in a medical journal.
     
  7. OverTheHills

    OverTheHills

    Messages:
    462
    Likes:
    1,034
    New Zealand
    More on Prof Murdoch

    Professor Murdoch has posted on these forums once

    http://www.forums.aboutmecfs.org/sh...hael-Holmes-Retrovirus-Work&p=67732#post67732 Retroviruses in Dunedin

    I was the clinician who referred patients to Dr Holmes back in the 80s in Dunedin. I also did a study of cell-mediated immunity in 33 people with ME/CFS and controls which demonstrated a T cell abnormality. In the discussion I commented " It is altogether possible that further retroviruses exist causing a spectrum of ill health in the community and further investigation of of this syndrome of relapsing malaise, muscle pain , early muscle fatigue and , noiw, immune deficiency, might be able to reveal such a factor." NZ Med J 1988;101:501-2.


    but unfortunately he hasn't been back.

    OTH
     
  8. akrasia

    akrasia Senior Member

    Messages:
    213
    Likes:
    464
    From Expert Answers on CFS
    Candice Towell, New York Times
    Nov. 24, 2009

    Nancy Klimas:

    I remember in the early 1990s a member of our laboratory, Dr. Roberto Patarca, found evidence of production of an enzyme called reverse transcriptase in our cell cultures, more evidence of an active retroviral infection. So the key thing now is for another reputable lab to find the same thing in chronic fatigue syndrome.
     
  9. campbell

    campbell

    Messages:
    2
    Likes:
    0
    Here I am back again! I have now returned to New Zealand after 8 years in Western Australia and in early August will be taking up the position of general practitioner in Tapanui where Dr Snow first described the mystery illness in the 1980s. You can read about it at http://www.odt.co.nz/regions/southland/116311/murdoch-be-town039s-next-gp
    It woudl be interesting to see what the prevalence of XMRV is in those who became ill all that long time ago. In the 1980s when I travelled around NZ talking to groups I used a slide with the quote "Time discovers truth." It's coming very slowly. By the way I'm not going to Tapanui because of CFS but because they don't have a doctor!
     
  10. OverTheHills

    OverTheHills

    Messages:
    462
    Likes:
    1,034
    New Zealand
    welcome back to the forums and to NZ.

    Hello again Campbell,

    I notice you say it would be interesting rather than it will be interesting - so I am assuming you have no plans to try and get locals into an XMRV study?

    Do let us know if you hear anything about NZ testing, there's a few of us on the forum from NZ who would love to get a test.

    Slow indeed.

    OTH
     
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,472
    Likes:
    498
    Clay, Alabama
    That's why I think XMRV is very likely the cause, and possibly some other virus causing many others.

    It just makes sense. A retrovirus that goes active, immune system attacks, virus goes dormant, but then comes out again.

    And, this is what Mikovits, who had worked with retroviruses for years, saw also. When Peterson described the cancers and the immune system abnormalities, Mikovits knew.

    I figured it was defect in Central Nervous System or immune system problem causing a problem with CNS. But what caused the immune system defect? Genetics, or what? Seems a retrovirus makes sense.

    Tina
     
  12. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,323
    Likes:
    4,359
    London
    Welcome back Campbell!

    I mentioned your name at the recent "Invest in ME" conference in London once and people not even from New Zealand, recognised your name and still remember all that you did for ME.

    Some people on this forum have been doing a questionaire for XMRV+ people and hopefully when they is ready for analysis we will know how many of the 80's people are infected.

    In the meantime maybe the WPI may have some data. VIP dx who do the private testing aren't taking any data from patients (on onset) so we don't know the figures for those having the private test.

    From people I have met or corresponded with personally in the UK, it appears that the current XMRV+ group are mixed over the decades including and since the 80's.
     
  13. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    24
    Victoria, Australia
    Absolutely awesome!

    Hopefully in the not too distant future many wonderful doctors/Profs who have believed in this horrible condition will be exonerated in their vocal persistence and support. Likewise, millions of patients who, for as long as they (we) have been 'diagnosed' with M.E. will finally feel validated in their personal knowledge that what has been happening to them (us) is immunologically/neurologically etc. based.
     
  14. sensing progress

    sensing progress Senior Member

    Messages:
    296
    Likes:
    14
    Tucson, AZ
    Interesting, I am currently reading Dr. Bell's CFIDS book also. In addition to the example you cite, he also speculates himself about a retrovirus being the most likely cause of CFS. Here is what he said:

    "One of the greatest supports to a retroviral theory is that retroviruses are known to be potent stimulators of cytokines, and this is consistent with the theory that cytokines cause the symptoms of CFIDS. Also, there is little or no tissue destruction seen in CFIDS, another characteristic of many retroviral infections. A further, and perhaps the most supportive, trait of retroviruses in general is that they may cause little or no illness. For example, in infections caused by the retrovirus HTLV-1, perhaps the majority of people with this virus have no symptoms at all. It is theoretically possible that the virus does little damage but that symptoms appear only when it stimulates the production of cytokines. People with a genetic tendency to overreact immunologically -- that is, to have allergies and/or asthma -- are more likely to develop symptoms."
     
  15. Lisa Simpson

    Lisa Simpson

    Messages:
    19
    Likes:
    2
    I got sick in NZ in 1984, in the north island. It's great to know that Campbell Murdoch and others who were well ahead of their time in terms of advancing knowledge about ME are still on the case.

    I have, like most patients, researched, read, watched and listened to everything out there on this illness for the last 25 years in an effort to find out what happened to me and to try to find a cure or treatment that works. From all the reading I’ve done over that time I have absolutely no doubt that this illness is caused by a retrovirus. None at all. I often wonder, knowing what we know about how retroviruses are transmitted, how it’s possible that I got infected with one, but I don’t doubt for a minute that infected with one I am.

    One of the things that I read that really cemented my belief was on a flight from Auckland about 15 years ago. I read an article in (Metro?) magazine about Peter Mwai, a man who had been knowingly infecting NZ women with HIV. It was an interesting article in itself but one thing in there made me literally sit bolt upright in my seat (my friend sitting next to me thought I was having a heart attack). It concerned the initial symptoms at onset of HIV infection and the reason it made my jaw drop was because it described in minute detail the onset of my ME. It was a kind of a eureka moment for me really because I had been telling every doctor that I’d been in contact with since becoming ill that the initial illness I had was definitely not “flu-like” as they invariably referred to it (unless they were referring to the Spanish flu of 1918…:), but was something the like of which I’d never experienced before. The magazine article described a catastrophic fever that some (not all) HIV sufferers report experiencing around the time they became infected. I think it described it (though I’ve read other stuff on the subject since so I may be getting my sources mixed) as the “ultimate fever”, the life or death battle the human body does as it tries to fight off initial infection with a retrovirus. The description given was absolutely identical to what I experienced. I felt like a huge piece of the puzzle had dropped into place for me and was convinced from that day on that it was an AIDS-like illness I was infected with (which I’d long suspected). It made such sense symptom-wise.

    I’ve met few fellow NZers with ME actually, and I’ve not to this day personally met anyone whose illness began the way mine did – though I read an account by a British man who described the same onset, he called it “the mother of all fevers”, and Dr Ros Vallings in Auckland told me that she’s treated people who had described such a fever – or have the same symptoms as me (primarily muscular and brain and severe to this day) so I have many, many questions that need answering. For starters, I was living a long way from Tapanui when I got sick so how did I get infected? Why did no-one else around me then (or since) become infected? To my knowledge I have never passed this illness to anybody else, including close family contacts and friends.

    Does anyone here (Professor Murdoch?) know when an XMRV test is going to be available internationally? I think this needs to hurry up and happen now so that we can start to find out just how long ago this began and how far this retrovirus has spread.
     
  16. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,323
    Likes:
    4,359
    London
    Lisa,

    I am so glad that you mentioned the fever. My initial onset was with a fever so bad that I was unconscious.

    XMRV+
     
  17. Lisa Simpson

    Lisa Simpson

    Messages:
    19
    Likes:
    2
    Don't you find it incredible that in all the literature out there about ME this mammoth fever onset is not really mentioned anywhere? What kind of "flu" renders people unconcious? It seems like it ought to be considered something of significance because most illnesses do not start that way, but...

    Did you become ill in the UK? What year was it (if you don't mind me asking)? A NZer left a comment in the comments section of an Otago Medical school blog that he/she had tested XMRV positive so I guess that's our proof that it's in NZ (if we needed it). What were the chances it wouldn't be.

    I really, really want to know if I'm XMRV positive. It's been way too long with no answers for me.
     
  18. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,323
    Likes:
    4,359
    London
    I'll send you a PM Lisa.

    I did hear that VIP dx was investigating Australia for testing. Plus Redlabs in Belgium will accept bloods within 48 hours.
     
  19. Lisa Simpson

    Lisa Simpson

    Messages:
    19
    Likes:
    2
    You'll have to excuse my ignorance but what is a PM...?
     
  20. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,323
    Likes:
    4,359
    London
    Sorry to use abbreviations Lisa. A private message through this forum.

    Look at the menu at the top of the page. Should be a message for you if you look under the "private messages" option.
     

See more popular forum discussions.

Share This Page