The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Would we even be here today.....

Discussion in 'General ME/CFS Discussion' started by Sandman00747, Jan 23, 2017.

  1. Sandman00747

    Sandman00747 Senior Member

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    Would we even be gathered here today in this forum if those buffoons that first investigated the Incline Village outbreak in Nevada in 1984-85 would have even done a small resemblance of their job duties instead of looking through a few charts, skiing the other days away, and reporting back to the CDC we had a classic case of overachievers, burnt-out, good ol" yuppie flu hysteria.?

    What were those clowns names? I believe one was named Holmes? No idea on the other. I guess before I convict them personally I might consider they were perhaps given orders from above. I sometimes wonder if this was the first media notable jump in a coming epidemic that started back in Darwin and Nightingale times or even earlier. Or perhaps this was a coming epidemic created by the 1934-35 experiments in the California hospital to try a highly experimental polio vaccine with horrendous results. Who will ever know?

    At any rate it is easy logic to see the pandemic spread of this silent disease in relation to how small this earth has grown in terms of travel to every country imaginable at virtually any time.

    I don't know if those CDC doctors could have done a great deal even if they would have performed their duties above and beyond. But I can't help but believe we would be a lot further along if they would have performed real science and medicine and we today would be 34 or so years ahead of where we are. And that's just the USA!

    The situation in the UK just continues to upset and depress me. I feel for all you guys so much! Getting pushed onto antidepressants and GET and CBT just angers me. I never thought the UK would ever take this uncivilized road! When I was young the UK was always the epitome of hip and proper to me. I guess all things change with time. But I know it's all about money or lack of and it's getting scarce even here in the states. I worry if Lipkin or Davis or others will ever be allowed real proper funding. Gotta say though that Lipkin is looking way downstream from the problem I believe which is odd.( on one of my worse days even suspicious)

    But just what percentage of people need to become disabled in the world for the " big boys" to take notice of the brontosaurus in the room? One day soon I shall write of the horrific cluster I was in the middle of way back when and of the entire bizarre experience, the cover-up, and the things I learned from it about human nature. Just way too flared up today good people to even begin. It's a flippin' novel!
     
    Last edited: Jan 23, 2017
  2. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    People in groups tend towards a spiral into worsening attitudes and who they recruit
    Usually a BOSS culture evolves, boss and leader are vastly different things
    It takes a lot of effort by ethically and morally decent, strong willed people to keep angroup from degenerating into scumbaggery

    Happens in ALL areas, politics, religion, science etc
    Good laws and regulations help, but require good well supported leaders to keep hammering the wahoos down

    It's easier.to make a problem "go away" by lies or worse, than it is to fix or heal

    As extreme of this for example, Stalin was a scientifically ignorant jackass who prompoted Trofim Lysenk because Lysenko's bullshit sounded good to Stalin, supporting Stalin's loony ideas
    So lots of good scientists who were against Lysenko's garbage, got ruined, sent to gulags or murdered
    Similarly, civil engineers and many others who pointed out problems got ruined or worse, leading to all.kinds of accidents and disasters
    This wasn't because of "communism", it was because of Human Nature and a lousy system AND culture that didn't have enough safeguards to stop such issues. inhumanity and stupidity of government,, and "shooting the messenger" went way back in Russian history

    Uk and thus America profitted from a peculiar series of things that gave rise to more tolerance, beter government and care for Humanity...but it's never ever been "we are the good guys!"
    Always a case of decent individuals living up to the spirit of benign idealse, often such folk aren't listened to, silenced, or killed even in our cultures, see how "whistle blowers".are treated now

    "Gas lighting" victims has a long history, as does saying "it's all in their head!"

    Whole rotten Establishment in UK and US needs destroyed and replaced completely, alas
    Too many corrupt.people and practices won't allow things to be exposed honestly, prosecuted and punished :(
    We are just ONE group of victims
     
  3. halcyon

    halcyon Senior Member

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    I don't think much would be different. The CDC thoroughly (at least relative to the Incline Village outbreak) investigated the US outbreaks of ME in the 1950s and nothing much came of it.
     
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  4. Cohen2

    Cohen2 Senior Member

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    I don't know much about Lipkins research. Can you explain further?
     
  5. alex3619

    alex3619 Senior Member

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    LA County Hospital, 1932 (2 patients) and then 1934 (outbreak of thousands) appears to be the earliest origin that we can be reasonably sure of. There was a large report written about it back then. This was a hospital doing a lot of viral research, animal studies, and vaccine development. Earlier possible outbreaks were not that well documented.
     
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  6. Snow Leopard

    Snow Leopard Hibernating

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    It's impossible to say. All we can say is a much stronger effort needs to be made starting now.
     
  7. *GG*

    *GG* Senior Member

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    I think we would still be online looking to get better, like what happens with many diseases. I also think that we would be further ahead with Research, if we got more funding from the Gov't, but perhaps not?, if most of all of that would be psychobabble?

    GG
     
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  8. Old Bones

    Old Bones Senior Member

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    A very interesting thought, @Sandman00747 . I was one of many who became ill in my city the same year (after) we hosted the Olympics. It was speculated that visitors from around the world brought unfamiliar viruses with them.
     
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  9. Sandman00747

    Sandman00747 Senior Member

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    Well, I don't mean to be quite so harsh of Lipkin's work. The problem for me was for a long time he kept saying the suspected pathogens don't appear to be the problem and then focused his efforts so heavily on the herpes virus family. I'm glad he's undertaken looking at spinal fluid, which could hold some important clues, but has all but ignored brain, muscle, and GI tissue which seem like they could hold some clues since enterovirus keeps turning up in ME/CFS patients' autopsies in these tissues and that virus has an known affinity for these particular tissues. I've never heard a good reason for not investigating the enterovirus family more.


    They have extensively looked at blood and can't seem to find any really important clues at least in blood cells per say. But how come he has totally ignored Defrietas' and Mikovit's finding of patients' serums reacting to gammaretrovirus antigen some 15-20 years apart from each other's research. What are all these patients' serums reacting to here? This finding having nothing to do with the contamination factor that ended Mikovit's research. No one has ever pursued this and that seems odd to me. Why would no one else pursue this clue?
     
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  10. Sandman00747

    Sandman00747 Senior Member

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  11. alex3619

    alex3619 Senior Member

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    There are hundreds if not thousands of clues in ME, and most of them have not been pursued adequately.
     
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  12. Cohen2

    Cohen2 Senior Member

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    Question for anyone. Is there any evidence that ME triggered by enterovirus varies from M E triggered by other viruses. Symptom wise or that research has found?

    I generally agree but this ignores outbreaks
     
    Last edited: Jan 23, 2017
  13. Sandman00747

    Sandman00747 Senior Member

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    That's the trouble Alex is that all of the earliest documentations that I have tried to research are so poorly or sparsely documented. That doesn't help at all! The one you speak of with thousands of victims is quite interesting but proposes no speculations on possible causes. Here's what perplexes me, worst outbreak of polio I believe around 1916 or so, 26,000 cases, 6,000 deaths. If we could compare that to the number of cases of ME/CSF in it's worst outbreak year I bet it would dwarf this polio outbreak. Hopefully not in deaths but certainly in number of cases.

    I have always felt there is some kind of connection to polio and ME/CSF without a doubt!
     
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  14. Sandman00747

    Sandman00747 Senior Member

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    I know and that's why I get suspicious on a really bad day! Tell me why you think they haven't Alex. I always value your input!
     
  15. halcyon

    halcyon Senior Member

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    According to James Mowbray:
     
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  16. AndyPR

    AndyPR Senior Member

    @Sandman00747 Details on Lipkin's proposed study is here http://microbediscovery.org/microbial-discovery-immunity-study/
    This still needs funding and they are hoping, like many others, to be awarded funding from the NIH, but if you want to help fund it donations can be made via http://bit.ly/DonateToDrLipkin
     
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  17. Chrisb

    Chrisb Senior Member

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    Amazing the primitive pseudo scientific beliefs they used to hold. Never even thought of investigating whether belief that one had an enterovirus might result in a different condition to belief in EBV.
     
  18. alex3619

    alex3619 Senior Member

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    I am writing a long reply. I will probably blog it.
     
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  19. Sandman00747

    Sandman00747 Senior Member

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    Don't have a lot of excess funds anymore but I have donated to scientists back to Mikovits and Davis and Lipkin too. It's not much that I often have to give, but somehow I always feel an obligation to help these valued scientists, not only for my want of renewed health, but also for all future generations to NEVER have to feel the strange and horrific pains and suffering and anxiety and the gammit of misery that far too many of us have suffered!
     
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  20. ash0787

    ash0787 Senior Member

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    well lets be honest its not just the UK, its a worldwide disease and even countries that have been historically separate
    civilizations like Japan don't seem to have documented and studied the disease, I would be interested to look at the literature surrounding that actually, but I'm not properly fluent yet.

    If you think about it there must have been lots of isolated cases of me/cfs prior to these 'epidemics' that were also ignored, in a sense though I don't really blame them because there were also a lot of things that were not well understood at that time until people like Dr Davis elaborated on them with his genetic sequencing machines etc.

    Whats going on in the UK is just corruption to be honest, it happens everywhere not just in science, and even though it seems bad its not all bad, because there are good people that counterbalance the corruption. For example I was not expecting that my disability benefits would be renewed since I changed the description from OCD to CFS and let someone else fill in the rest of the details / wrote trolling things on there but somehow I still did get it.
     
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