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What Happened in the early eighties?

Discussion in 'General ME/CFS News' started by justinreilly, Feb 27, 2011.

  1. insearchof

    insearchof Senior Member

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    Willow, what I understand is, that they gave the health care workers a serum based subtance which they injected into the health care workers which they thought would protect them from the polio outbreak.
     
  2. Mithriel

    Mithriel Senior Member

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    Just come to this thread and there are a few posts I would like to answer.

    I have been ill since 1963 so I can describe some of what happened.

    The epidemics were not polio as such as the patient's did not become paralyzed. It was thought they were caused by another enterovirus. As an accident of history, the enteroviruses have been given different names, polio, echo, cosxackie A and B etc but they are more closely related than the E. coli's for instance. Even nowadays, diagnostic labs simply look for enterovirus and they are only typed later.

    After the Royal Free epidemic, it was thought that the epidemics stopped because the polio vaccine meant people were partially protected from other enteroviruses as well. There have not been any "dropping like flies" epidemics in the last few decades.

    Of relevance also is the fact polio virus causes a simple infection that most people recover from in a week or so. What we think of as polio is a complication of infection. ME may well be a complication of a Coxsackie B infection. (I do not know how many of those who got sick at the Royal Free went on to have lifelong ME.) It is possible that an existing gammaretrovirus was present in those who developed the long term illness.

    In about 1970 two psychologists wrote a paper which said the the Royal Free epidemic was mass hysteria. They had been given access to the notes by Dr Melvin Ramsay, an old school gentleman of a doctor who spent the rest of his life atoning for it.

    The hysteria hypothesis was quickly debunked but it alerted psychologists to blood.

    By the early eighties, ME became an almost fashionable subject for study again and great strides were made but then things went wrong. For one thing, AIDS came along and took a lot of the research money (and researchers) and the psychologists took over.

    I always think of the wessely weasels as typical eighties wide boys, thatcherite whizz kids out to make themselves a fortune. The ME doctors were old fashioned polio specialists who were polite and courteous, and cared about their patients. They never knew what hit them. The weasels sat down one day and renamed and redefined the disease with no input from the ones who had been working on the disease for years. They had the ear of government and it seemed like they pushed everything through overnight.

    No offence to the Americans amongst us, but at the time I thought it was typical of the Us to come across a disease that had been around for years and ignore everything everyone else had ever done as if they had invented it. I know know that people thought the Incline Village outbreak was ME and I only wish that they had stuck to their guns and saved us all a load of trouble.

    I think CFS was seen as being "modern" and more accurate. New age psychological theories had become mainstream since the seventies and old school doctors, now getting on in years were the ignorant past.

    Our immune systems are under much more attack nowadays. Life is not so healthy and pollution is widespread all of that could be factors in the extent of ME/CFS. Conversely, children are not exposed to so many germs at a young age and that could leave them vulnerable to many things.

    However, if HMRVs were introduced into the population in Los Angeles in 1935 then it would be widespread now.

    And, of course, we do not get better so our numbers only increase every year.

    Mithriel
     
  3. WillowJ

    WillowJ Senior Member

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    interesting, thanks
     
  4. insearchof

    insearchof Senior Member

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    Hi Mithriel,

    First of all, let me say that I am sorry to hear that you have been ill with ME for so long. Having said that though, I would like to address your comments on ME and its historical association with polio.

    You said that the epidemics were not polio. I respectfully disagree. My reasoning in full can be seen below - which was posted in another thread:



    Your belief that the epidemics were not polio - is a commonly held misconception.

    The term ''polio'' prior to 1958 encompassed various forms thereof - and was divided into paralytic and non paralytic forms - but ALL were still diagnosed as and called polio. The non paralytic form of polio was also called atypical polio etc. The very first description of what we now know as ME was recorded from the LA General Hospital case in 1934 by Gilliam and it was known as non paralytic polio. After reclassifications associated with polio in 1958, non paralytic polio was classified (for diagnostic purposes) as coxsackie, echo etc - other entroviruses and referred to collectively as non polio enteroviral infections. Only paralytic polio after 1958 was regarded as polio. Consequently, the connection between ME and non paralytic forms of polio were lost - hidden away 'by reclassification - and estranged from their original polio association with introduction of the term ''non polio'' enterovirual infections etc. It was no ''accident of history''.

    The Royal Free epidemic occured in 1955, however - there were further epidemics of polio - (using the pre 1958 definition to include paralytic and non paralytic/ME) but I agree, there were less reported cases of paralysis ( which was attributed to the vaccines). However, I can list 30 epidemics that took place across the globe, after that one in 1955 up to and including Incline Village Lake Tahoe - where people were indeed, dropping like flies.

    For 95% of people, it is a simple infection that they recover from. However for the remaining 5% it is a chronic, serious life threatening illness - not a mere complication. ME = non paralytic polio as evidenced in abundant medical literature.

    I would be curious to know where you sourced this information from. In a paper written by Dr Ramsay in 1990 he said the outbreak at Royal Free Hospital - was very similar to non paralytic polio in its clinical presentation. Given the changes associated to what was and was not polio after 1958 and that Ramsay was writing about this illness in 1990 -he took the opportunity in this paper to point out that the the terms Post Viral Fatigue Syndrome and Chronic Fatigue Syndrome were being introduced - and he expressly stated in this paper that he refused to use them because he said they were obscuring (or hiding from view), the world wide incidence of non paralytic polio / ME outbreaks and the severity of the illness. (He knew what was going on and was not shy in stating such!) So I find it hard to believe that his notes would have suggested that the Royal Free case was mass hysteria - unless one or two patients presented with hysteria like symptoms. Based on this assumption, I dug deeper and found this might be correct as Sir Donald Acheson in a lengthy article published in the AJM in 1959, noted that hysteria was found in a few of Ramsay's patients (though here refers to an article Ramsay wrote and does not specifically state they were patients in the Royal Free case) and importantly - these symptoms were noted in the later stages of illness and as such, were not considered typical hysterical patients. Archeson continues then to argue why the Royal Free case was not an outbreak of hysteria and gives short shift to the notion that these patients were experiencing hysteria as distinct from cognitive problems associated with non paralytic polio/ME. As I said Mithriel, I would really love to know the source of this and read that 1970s article by those psychologists because perhaps you are correct - perhaps this was were the impetus for the psych lobby began. If you have the reference, I would be keen to have it.


    Correct - because ME was regarded as non paralytic or atypical poliomyelitis or simply: polio [or at least up until 1958 when they decided to bury 4% of all the polio (non paralytic) cases]

    Mithriel, I would love some sourced/reference material on this if you have it. I dont doubt this is what happened.
     
  5. SOC

    SOC Senior Member

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    One is not automatically excused of offensive speech by saying "No offense to..."

    That was offensive stereotyping.

    While the US is no more perfect than other nations, it is also not "typically" more ill-mannered. If one has to describe "typical" US behavior with regards to science, research, and medicine, it would be more accurate to say that the US generates vast amounts of research with its own resources (energy, money, materials, smarts) that it shares with the rest of the world to the benefit of all.

    Yes, the US screws up sometimes. So does the UK, South Africa, Australia, China... any country you name. We all make mistakes and we all do great things. That's life.

    How about we avoid international insults? There's no reason for them and they are unnecessarily divisive.
     
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Governments, the State, the "Powers Behind the Throne", the "power elite", and the "ordinary folk of a nation" are entirely different things, folks, always remember that!
    Some cultures are sick/screwed up like it or not, but it's usually in small groups, or in odd ways cause of how eventss unfolded and people screwed up etc.

    US is oddly very insular...but that's not too uncommon in extremely large countries because they get so much info generated locally
    Where as small countries like UK can have very "nosey" attitudes, always wondering what neighbours, especially larger neighbours, are up to ;)

    From personal experience, the UK's "management" at nearly all levels are the most hidebound, unimaginative, incompetant, smug, in-bred buttholes I have EVER had the dispelasure of having to deal with and fix their sodding screw ups: they literally couldn't organize a p*ss up in a brewery! :p (and yeah I am from the UK, lol)

    This is because of a fact of Human existance:
    Those who can, do!
    Those who can't, manage! ;)

    With due respect to the minority of folk in any form of "management" who actually are competant!
    Folk with ability and drive want ot get on with their craft or whatever it is they *care* about doing. This alas leaves management space vacant, and the detrius of the talentless fills the resulting gap, or rather as I usually put it: the excrement floats to the top of the bowl, ahem ;)

    Hence you get a disproportionate amount of jackasses running things, especially if they came form welath and their family wanted their moronic offspring to have a job and keep the hell away from them, sigh.
    That's actually why the British usually appointed complete nincompoops to the governorship etc of Jamaica, one of those "safe out of the way spots no one cares if it gets screwed up and everyone's just chilling", ya know?
    THOSE are the buttholes who keep saying or doing crass, incompetant, bigotted, or even inhumane stuff that ends up ticking off other nations and leading to problems and sleights that persist for years. For example George Bush Jr when he was rude to the Queen, was merely catching up on a millenia of prior doofus UK leaders ;)

    Hm, is M.E. really "Manageritis-wankerius Extremus-arsius-painickus"? :D

    Ahem, sorry for derail!
    AND NOW, BACK TO YOUR USUAL PROGRAM.... :p
     
  7. insearchof

    insearchof Senior Member

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    I dont think this is a fair accusation, and I don't think it is accurate either - in the sense that, I don't believe they ignored ME just so they could ''invent'' or replace ME with something more current - out of a misplaced sense of self importance. In fact, when the CDC set about to define CFS they called together an international panel of experts to do this (2 of whom were world renowned experts on ME). If what you suggest was correct Mithriel, then they would not have taken this step. On the other hand, it does appear as though they did in fact ignore the experts on ME - only one of which was an English man. The other was an American.
     
  8. insearchof

    insearchof Senior Member

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    Following on from my last post, does anyone know what happened in that international meeting convened to create a definition of Cfs? I don't know if the meeting progressed on the basis that the lake table epidemic was ME and Dr Shekelov and Parish walked out because they did not define ME correctly.....or whether, Shekelov and Parish were arguing (contrary to the rest of the group) that what they were looking at was another ME epidemic and this was rejected so they walked out. Does anyone have any information on this?
     
  9. Doogle

    Doogle Senior Member

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    Here, follow this link

    As presented at the London Conference of May 12, 2006
    by Byron Hyde MD:

    1987: The first CDC definitional meeting

    I have mentioned the April 1987, First International Symposium on Immunology
    and Pathogenesis of Persistent Virus Infections held in Atlanta Georgia hosted by the
    CDC and Dr Carlos Lopez. At the termination of this meeting Dr Gary Holmes called
    a committee to discuss the creation of a definition for this 1984 Lake Tahoe Raggedy
    Anne Illness that had appeared sporadically and in clusters in many areas of the United
    States and Canada.
    Approximately 25 people showed up for the meeting. Included in this 25 physicians and
    scientists were Dr Alexis Shelokov, Dr J. Gordon Parish and myself. Other than Dr
    Gary Holmes and Dr Stephen Straus, at that time I was not aware of whom the other
    people present may have been. Of Shelokov, Parish and myself, I was clearly the least
    knowledgeable of the three having only seen by then some hundred or so patients
    with M.E and read extensively the existing literature. However my knowledge at that
    point could not be compared to these two published giants.

    It was obvious that most of the assembly associated this epidemic disease with Epstein
    Barr Virus and infectious Mononucleosis, what the British refer to as glandular fever.
    It was immediately apparent that the consensus was going to be highjacked by this
    majority. Dr Shelokov and Dr Parish decided that this meeting was going nowhere
    and so decided to leave before it terminated. I followed them knowing full well that if I
    was going to learn anything credible about this disease process then 1 had to
    understand their incredible knowledge base that had been developed for over 20
    years.
    It was a wise choice for me in terms of acquiring knowledge but it was a bad choice
    for the three of us in that had we stayed, we might have influenced the definition that
    was to appear in 1988.
     
  10. insearchof

    insearchof Senior Member

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    Thanks for this Doogle. I recall Hyde making mention of this in a presentation he gave in Australia last year. I could not quite recall however, the factual details.

    If I recall, Oslers Web suggested that Holmes view of the mysterious illness at Lake Tahoe was mono and sought evidence accordingly ( Ie:went in with one and a rather narrow frame of reference and came back with narrow evidence to support such, even though the infectious period for mono was 30-40 days and not 3-7 days which was being seen.)

    Given that, there may have been little room to make a case for ME @Lake Tahoe, and perhaps this is why they felt there was little point hanging around. (Is this what Hyde meant when he stated that it was immediately apparent that the consensus was going to be hijacked?) if my recollection of this material from Oslers Web is correct, and it was thought to be mono and the evidence collected supported this with poor consideration given to anything else -then the question becomes: why even bother inviting two acknowledged ME experts to participate? Was it to make it look as though the forum had not been "obviously" hijacked?
     
  11. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    There's an outdoor toxin that is a factor in this disease.

    It doesn't cause ME/CFS. People can be sick with this disease without being exposed to this toxin.

    I personally believe that the retrovirus is necessary for people to have ME/CFS, though obviously that will have to be confirmed.

    What this toxin does is make people with ME/CFS much more sick, with specific symptoms associated with the disease.

    It's a toxin that affects normal people to a small extent, if they get enough exposure. But it affects people with ME/CFS even in very small quantities.

    This toxin is especially present in particular places. People in those places tend to get sick in epidemics, with the severe form of the disease.

    It first emerged in Lake Tahoe in 1984, just before the epidemic. It's still present in certain places in Lake Tahoe to a much larger extent than in the vast majority of places, which may explain why people with this disease who live there tend to be so sick.

    Unfortunately, almost no one realizes that this toxin is what is causing them to be sick. The problem is that the toxin causes people to have only minor effects when they're first encountering it. It takes a day or two for the effects to become fully notable.

    Most people think that they're having a random flare, perhaps due to getting some kind of infection. So they dismiss it.

    This toxin seems to have the characteristics of a particularly toxic cyanobacteria. If you look under "Amnesic Shellfish Poisoning," you will see that the illness (caused by a particular cyanobacteria toxin) is basically the same thing as the Tahoe epidemic in terms of the symptoms.

    http://en.wikipedia.org/wiki/Amnesic_shellfish_poisoning

    However, we can't rule out the idea that it could be a mold. Hopefully we will find out soon.

    My tendency is to think that people always have been influenced by this toxin, but that it's rarely present in large enough quantities to do them much harm.

    The game changes with ME/CFS, because the extent to which we can be affected by such tiny amounts of biotoxins is so large. That's the case with toxic mold found in buildings (lots of people will confirm that), and it's the case with this outdoor toxin as well.

    If anyone is interested in learning more about this, please let me know. I can give instructions on how to find it in the Tahoe area, so that people can see for themselves.

    OF course, no one has to believe me about this. I'm just telling you because it seems to me the right thing to do.

    Best, Lisa
     
  12. Doogle

    Doogle Senior Member

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    I can only speculate on this. Maybe one of the International working group who was there can elaborate.
     
  13. Mithriel

    Mithriel Senior Member

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    I apologise, I was explaining what I thought then. I was very angry at what was being done and the US doctors being insular seemed like an explanation. I have since learned that I was wrong, (though I was actually being generous to the CDC compared to what Strauss actually did)

    The information on polio is very interesting, I have found it difficult to get information on early polio. The separation may have been because of the typing of enteroviruses, but I do not know. I had a persistent Coxsackie B infection while they still tested for it.

    One of the last epidemics of paralytic polio was in my home town. I remember as a child standing queuing for hours for vaccine.

    When I spoke of no more epidemics, I meant ones like the hospitals where the majority of staff collapsed and they had to be closed. It might have been useful!

    I used complication to mean something that is beyond the normal consequences of a bug, such as encephalitis from measles or herpes. It was not meant to imply that it was not serious or long term.

    Because I find it hard to type, I am sometimes (often) too terse and don't make myself clear. The story of McEvedy and Beard is one such thing.

    This gruesome twosome had success describing epidemics of "mass hysteria" at two schools where teenage girls started throwing up after seeing others do so. At the time it was "known" that vomiting only spread by faecal/oral routes so , hysteria. I mentioned this to my microbiologist husband and before I finished the sentence he said "Norrovirus". That curse of hospital wards is spread by aerosol in vomit, so no hysteria involved.

    They then turned to the Royal Free epidemic. Dr Ramsay gave them access to the patient notes, not his. They included nurses who had not been considered part of the epidemic in their study and based everything solely on the notes, they examined or interviewed no one. Dr Ramsay said a colleague said to him "You will regret that" and he did.

    Somehow, M&B's study became medical myth despite the facts that showed they were wrong being published. I saw them on TV in the eighties completely unrepentant and repulsive.

    I lost all the papers I had kept, but http://health.groups.yahoo.com/group/MEActionUK/ has an archive and the essays by Margaret Williams have a lot of information.

    Mithriel
     
  14. insearchof

    insearchof Senior Member

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    Hi Mithriel

    Guilty of that too Mithriel :)

    Thanks for this information Mithriel, I will see what I can find on them. Very interesting.
     
  15. Mithriel

    Mithriel Senior Member

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    Dr Speedy had this in his website

    http://niceguidelines.blogspot.com/

    http://niceguidelines.files.wordpress.com/2011/03/brmedj02288-0066c-dr-david-c-poskanzer.pdf


    Mithriel
     
  16. insearchof

    insearchof Senior Member

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    Thank you Mithriel for going to the trouble of digging this up. appreciate it

    I couldn't help but stop and pause at the end of David Poskanzer's opening paragraph. The psycho babble theory has certainly impaired further investigations. I wonder what became of this neurologist? I wonder if he wrote or conducted further research into ME in the US? I wonder if the good Dr is still alive and if so, what his thoughts might be on the current state of affairs?

    Thank you again, Mithriel
     
  17. Doogle

    Doogle Senior Member

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    DAVID C. POSKANZER died September 1988, The Boston Globe Obit

    http://www.highbeam.com/doc/1P2-8077186.html

    Graveside services will be held today at 1:45 p.m. in Sharon Memorial Park for Dr. David Charles Poskanzer of Boston, who was associated with the National Cancer Institute in Bethesda, Md. He was 59.

    Dr. Poskanzer died of a brain tumor Tuesday at Massachusetts General Hospital.

    From 1981 until 1984, he was a private practitioner, and from the mid-1960s until 1982, he was an associate professor of neurology at Harvard Medical School and an associate neurologist at Massachusetts General Hospital.
     
  18. insearchof

    insearchof Senior Member

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    Thanks Doogle,

    THought it might be a long shot that he was still around. Sad.

    Ps: Is Doogle a play on Google? :)
     
  19. jaariel

    jaariel

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    YES!
    My pet theory is that HIV/AIDS took ALL the money, attention, etc that the govt/scientific/ medical worlds were willing to give at that time, which happened to be the 1980s. AIDS scared the general population spitless--can you imagine what kind of panic would have taken hold if there had been acknowledgement of even MORE immunological diseases/viruses that were infecting the population and that even more people were going to be chronically ill, requiring more millions of $$ to be spent to try to identify these other viruses that were spreading only God knows how...especially when it seemed as though only yuppies & middle aged women were suffering--just the demographic who could afford to be treated with Prozac, which actually seemed to help--for a while, that is...I can totally see how the powers that be (were) would REALLY want to sweep this thing under the rug. The Medical side was overwhelmed with AIDS research & all the politics that went with that so if the Psych side could placate these sick ppl who didn't have AIDS, with antidepressants and guilt into shutting up & just getting on with it, then all the better. Everybody wins! Right???
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    The were everyday doctors who believe but dont have access to proper testing or treatment for that matter. All they had at their disposal were valium and antidepressants to help relieve our suffering. Have to remember also that antidepressant do more then just help depression but can help sleep and pain and some energy. It was cutting edge docs that went that extra mile like cheney, petterson, bell, etc that went out on a limb and tried antivirals, gammaglobulin etc and risked themselves financially as well as their professional credibility.

    Also in Australia there were a few good studies done which the authorities ignored and blindly followed the health authorities of the USA and UK. There was a positive study on gamma globulin with cfs patients that was never expanded on as well as the Dubbo study which they have twisted into a psychological thing as well. Im sure there were others. Whatever Happened to the New Zealand doc who discovered a retrovirus in cfs shortly before defreitis, was he hushed up by NZ health system. I agree, its all shonky. I think every new doc going through university needs to read Olsers web.

    cheers!!!
     

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