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Would we even be here today.....

Sandman00747

Senior Member
Messages
106
Location
United States, Kansas
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!
 
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SilverbladeTE

Senior Member
Messages
3,043
Location
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
 

halcyon

Senior Member
Messages
2,482
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!
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.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
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.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
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.

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
 

Old Bones

Senior Member
Messages
808
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.

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.
 

Sandman00747

Senior Member
Messages
106
Location
United States, Kansas
I don't know much about Lipkins research. Can you explain further?

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?
 

Cohen2

Senior Member
Messages
119
Location
New Zealand
enterovirus keeps turning up in ME/CFS patients' autopsies in these tissues and that virus has an known affinity for these particular tissues.

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?

The problem for me was for a long time he kept saying the suspected pathogens don't appear to be the problem

I generally agree but this ignores outbreaks
 
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Sandman00747

Senior Member
Messages
106
Location
United States, Kansas
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.

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!
 

halcyon

Senior Member
Messages
2,482
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?
According to James Mowbray:
The postviral fatigue syndrome (PVFS), with profound muscle fatigue on exertion, and slow recovery from exhaustion seems to be related specifically to enteroviral infection. The form seen with chronic reactivated EBV infection is superficially similar, but without the profound muscle fatigue on exercise. In both, there are CNS symptoms, but the fatigue of EBV infection seems to be more of lethargy, than muscle fatigue on exercise. In this it shows similarity to the anhedonia, lethargy and inanition characteristic of acute EBV infection seen as infectious mononucleosis or glandular fever.
 
@Sandman00747 Details on Lipkin's proposed study is here http://microbediscovery.org/microbial-discovery-immunity-study/
The study intends to test the hypothesis that ME/CFS cases and controls have different bacterial, fungal or viral microflora in the oropharynx (mouth and throat regions), lower gastrointestinal tract (gut) and blood in a massive, well-powered study. By rigorously characterizing cases and controls and using state-of-the-art methods for identifying microbes, even currently-unknown ones, the CII will also study patients and controls for evidence of differences in immune system function and metabolic function.

This will be the first ME/CFS study to look at the microbiome over time. They are collecting stool and saliva at four different times over the course of a year, allowing the researchers to see if the changes in microbiome and immune system are related to changes in symptoms over time. Blood is also collected at the first and last time points.
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
 

Chrisb

Senior Member
Messages
1,051
According to James Mowbray:
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.
 

Sandman00747

Senior Member
Messages
106
Location
United States, Kansas
@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

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!
 

ash0787

Senior Member
Messages
308
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.