• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

What Happened in the early eighties?

*GG*

senior member
Messages
6,389
Location
Concord, NH
Alot happened in the 80's. Aspartame, spread of Lyme, contaminated vaccines, microwave cooking, micoplasma being released via mosquito and dairy vector into the general population. Both HIV and XMRV rose concurrently. GMO foods, growth hormone in the dairy products. The list just goes on and on. I was healthy up until about 85 or 86 and so was my mother. We weren't sick till then. Same with alot of people I know who are sick. We all got hit mid 80's. But prior to that, we were healthy people. We were working out. My mother and I used to watch the Richard Simmons show and exercise to it. We even belonged to a gym together for awhile. We were living real full healthy lives until the mid 80's.

Were GMOs abundant in the 80s? I was under the impression only the last 10 or 20 years? I became sick in 2003 (age 33), so I have only been sick for nearly 8 years.

GG
 

IamME

Too sick for an identity
Messages
110
Also in the Royal Free it may have been Polio, which may have been why they had more common paralysis and spinal cord inflammation (as I understand it we still all have encephalitis or brain inflammation, but not necessarily all of us encephalomyelitis or brain and spinal cord inflammation).

WHere did you hear that? I don't think there's any doubt that the Royal Free epidemic was ME. Acute onset ME is severe and will cause some degree of transient flaccid paralysis initially, and this is as true today as it was 50 years ago (people that say otherwise are out of touch and not worth listening to, as severely affected sufferers are the living proof).

As for the spinal inflammation, AFAIK it was based on clinical signs and history not postmortems, but ironically we now have a steady stream of postmortems finding ganglionitis and neural cell death (lesions) on postmortems, some well publicised.

Unfortunately, for reasons best known to themselves, Shepherd and Chaudhuri are declaring these cases as comorbidities or even differential diagnosis. Bizarre...


But there's also the fact that we don't get diagnosed right away. Not even allowed to diagnose until it has persisted for 6 months, but many of us aren't diagnosed for years. It's very hard to notice an outbreak when you don't diagnose promptly, so it's entirely possible that we have outbreaks which are missed.

Indeed, that and genuine ME has been driven underground. Clinics and specialists tend to never see severe cases.

And the old outbreaks they gave people what they needed - rest - rather than abandoning them and expecting them to do more more than they can then blaming them for "push crash".
 

Crappy

Senior Member
Messages
113
Location
TX
genuine ME has been driven underground. Clinics and specialists tend to never see severe cases.

I had never considered that. Underground, black market treatment for ME, People trying to self medicate with black market drugs or alcohol for the condition? No one really has any idea how large the segment of the population that is suffering from this condition.

For every one person tenacious and irreverent like us, telling their doctors what the want done; how many have just resoled themselves to not finding help, or self medicating? 10, 20, this condition could be alarmingly common.
 

dannybex

Senior Member
Messages
3,564
Location
Seattle
Alot happened in the 80's. Aspartame, spread of Lyme, contaminated vaccines, microwave cooking, micoplasma being released via mosquito and dairy vector into the general population. Both HIV and XMRV rose concurrently. GMO foods, growth hormone in the dairy products. The list just goes on and on. I was healthy up until about 85 or 86 and so was my mother. We weren't sick till then. Same with alot of people I know who are sick.

Excellent points Carrigon. There are so many other things we could add to your list -- plastics, increasing use of chemicals and artificial colors, flavors, pesticides, fungicides (and as you say GMO foods), non-stick pans (that leach aluminum, etc.) that started in the seventies but are ubiquitous now...etc., etc., etc..

Most of these poisons weaken and certainly disrupt immune function, thyroid function, adrenal function, etc., yet are so difficult to test for.

It's not just about viruses, bacteria, or other infections, IMHO.
 

rlc

Senior Member
Messages
822
Hi all, here is some essential reading on outbreaks of M.E and what really happened in the eighties! the first is an indebth report on the early epidemics of ME between 1934 and 1959 link http://www.meresearch.org.uk/information/keypubs/Acheson_AmJMed.pdf The next two look at the history of ME and contain a lot of scientific information and history and explain what really happened in the eighties link http://www.investinme.org/Documents...de Little Red Book for www.investinme.org.pdf and http://www.hfme.org/topicoutbreaks.htm the last one looks at who benifits from the lies promoted about M.E http://www.hfme.org/whobenefitsfromcfs.htm on these last two links there more links to a lot of other information!

All the best
 

insearchof

Senior Member
Messages
598
He also lists many diagnostic biomarkers for the disease: http://www.prohealth.com/library/sho...cfm?libid=9926

I find these are extraordinary facts, and it puzzles me how easily they were removed from use.

I find it incredibly ironic that it wasn’t until 1988 in the UK (just a few years after the Lake Tahoe outbreak) that Wessely became involved and things began to change from then: http://www.ncbi.nlm.nih.gov/pmc/art...dont forget the entire UK medical profession.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
What was wrong in the 1980s? well in the UK, it appears that the intelligence, scientific scrutiny, backbone and moral conscience of medical doctors and researchers right across the UK went AWOL. If anyone is to be held accountable, dont forget the entire UK medical profession.

I suggest you look at who got into power in the UK in the 1980s and their devastation of the nation and corruption...that would explain a lot of the background of HOW this could happen.
The UK (or arguable, SE of it) became a "F***, you I'm all right, Jack!" society: greed, selfishness, xenophobia etc shot through the roof as our leaders encouragd such and wrecked the nation in many ways, meh :/
 

insearchof

Senior Member
Messages
598
I do not discount the role of government SB - but greed and selfishness infecting the minds of hundreds of treating physicans knowledgable about ME at the time, does not explain this for me. How would greed of physicians factor in here or selfishness (unless you interpret "selfishness"as apathy) explain them dumping a clinical approach to an illness backed up by scientific literature for a new model/understanding AND from a part of the medical profession that was largely seen at that time by its own members, (and still is) as a pseudo scientific branch of medicine ie the mickey mouse part of medicine? .

If the medical professions many members (other than just those with ME practices) actively and continually spoke out against the introduction of the psycho model to replace sound bio physical findings in ME accumulated over 54 years, and debunk it for the nonsense it is - then enteroviral research might have continued and we might have had another vaccine etc. One thing is certain, millions across the world would not have been left to languish in poverty, pain and despair and written off as hypochondriac's not worthy of spending precious health $ on.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Insearchof
governments role is that it's policies of clampping down on dissent, lettign corportes gain more power, letting anti-Whistleblower policy and contracts come in, etc etc, created an atmosphere of tyranny.
NHs was getting whittled down, nepotistic placements, encouragement of private health care etc etc all made for a very bad "atmosphere"

so if someone came in and said "Hey let's claim all these folk are mental cases, we cna deny them compensation/health care, save millions!" assholes could be very supportive of it, expecially if the insurance ocmpanies said "Oh go with this we'll double out campaign contributions!"

and since the NHS is controlled by a vast bureacracy...dissent is crushed when openness and job security is destoryed, as it was then (and is always a problem anyway in such huge, unwieldy organizations).

there's NOTHING damn foul enough I wouldn't put past corporates or that government of the time (lol or any government especially now).

Right man, at right time, saying right things to the right callous scumbags in power...that's all it takes.
Doctors roll over or get silenced (booted out lose pension etc) as their organization is..another orgnization and ALL it really cares about is it's own selfish interests, that is hard fact of Human society: all our organizaitons only end up caring about their own continuance and power, not the ethos they are mean to represent/support :/
 
Messages
877
I do not discount the role of government SB - but greed and selfishness infecting the minds of hundreds of treating physicans knowledgable about ME at the time, does not explain this for me. How would greed of physicians factor in here or selfishness (unless you interpret "selfishness"as apathy) explain them dumping a clinical approach to an illness backed up by scientific literature for a new model/understanding AND from a part of the medical profession that was largely seen at that time by its own members, (and still is) as a pseudo scientific branch of medicine ie the mickey mouse part of medicine? .

If the medical professions many members (other than just those with ME practices) actively and continually spoke out against the introduction of the psycho model to replace sound bio physical findings in ME accumulated over 54 years, and debunk it for the nonsense it is - then enteroviral research might have continued and we might have had another vaccine etc. One thing is certain, millions across the world would not have been left to languish in poverty, pain and despair and written off as hypochondriac's not worthy of spending precious health $ on.

INsearchof. Have you considered manipulation and leverage? Maybe the scientists didn't agree they were threatened to be tossed under the bus? Don't know.
 

SaveMe

Senior Member
Messages
421
Location
the city
1) What they had back then may not have been ME, could have been some form of polio or polio-consequence?
or, polio triggered ME and caused it's own unqiue ADDITIONAL issues form the polio.
very hard to tell.

2) What if ME is triggered by polio vaccinations? historically there have been a huge amount of problems with such and still are in developing countries where they test new versions

3) Note also that "triggering" maybe due ot XMRV being involved

4) Mass vaccinations grealty ramped up in number of shots and forced on folk for schooling etc aorund that time

5) Air travel. this is the STUPIDEST thing we Humans have ever done in terms of allowing diseases to spread! Since the 70s, massive proliferation fo cheap air travel's let God only knows how many diseases spread, where as before they'd die out in travel onboard ships as the patients recovered.

6) Yes biowarrfare is a possible issue, but one pathogen doens't carry dozens of other ones! however, wepaonized strains could pass on genes to other pathogens in the wild and that's a scary damn thought.
to make a bug affect Humans better, the assholes used various techniques, resulting in germs that had a unnatural affinity to infect us. If these germs then got into the wild it's highly likely they coudl pass on those genes to other pathogens, which is one reaosn why any sane person should never had began such work, they aren't weapons, they are uncontrollable damn liabilities.

Also, forever after, any unusual disease casts the shadow of it being a bioweapon because these lunatics did in fact do such work, such as HIV making many folk think it's a bioweapon, due to known requests/funds for investments in pathogens that attack the immune system
no, I'm not saying HIV is a bioweapon, merely that it is a plausible if unlikely possibility, as the stupid idiots actually seriosuly considered making such, see USA 1968 $10 million budget for such a bioweapon. however, techniques of "gene splicing"/understanding of retroviruses etc was lacking at the time so it is unlikely.
Always remember with science, it's about *probabilities*, there's no such thing as "the truth", only likelyhoods of probability.

Yes, Western biowarfare systems were about economic warfare, crippling, not killing, creatign fmaines, sickening workers of the producive years etc.
But does this mean ME is related to a bioweapon? I tend to doubt it except in relation to Lyme, which almsot certainly is a bioweapon. Governments may have panicked thinking ME is one of their germs got lose, or merely to protect prfits of their insurance company campaign contributers especially after the HIV mess, or the feared it was related to vaccines...or who knows.
Again, techniques of viral manipulaiton weren't advanced enough back then, so it's unlikely, but not impossible.

7) Many immuno-comprimised people in society increases risk of a pathogen mutating in a weak defence system, to become able to infect Humans where as it should have died out.
for example, bad health care in USA let multi-resistant TB develop there in the sick and poor, which could then affect healthy people and is incredibly virulent.

8) Clusters still occur but I don't think they're being reported
when I got ME back around 1994, it was after a very nasty flu-like bug (took about 2 months to get over), it had hit a hell of a lot of folk around my town and left a good few with ME (from what a GP said).

You bring up a good point, and I like your strong emphasis on vaccinations as a possible trigger. I developed ME-CFS after a Hep B Vaccine. Interestingly, many others have reported the same thing. Because of this, there are actually studies on PubMed and Ncbi/nih http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1488229/ vaccination in chronic fatigue syndrome: myth or reality? Alleged link between hepatitis B vaccine and chronic fatigue syndrome. Further evidenced by the WHO http://www.who.int/vaccine_safety/topics/hepatitisb/en/index.html.

So why the need for reputable health organizations, research databases, and other sources disputing that vaccinations trigger CFS-ME? Because its true!!
Dr Bell---Lyndonville, NY outbreak affecting almost all children after vaccinations.


In addition, many people will blame a viral infection of some sort, ie flu, but people must remember that it could take a long time before one starts experiencing fatigue or cognitive dysfunction from a vaccine.
It takes time for vaccines to throw off and impair your immune system. (in some people) Sacrificing the few to save the many!!!
 

SaveMe

Senior Member
Messages
421
Location
the city
It seems very obvious to me, and i would think everyone, they're hiding something very wrong that they did, most probably biological weapons (and/or vaccine contamination with ME causing viruses). They claim it's because it will take too long to redact personal medical info, which seems laughable to me. I wonder what would happen if we raised a fund to pay for the redaction. Something tells me they would still not release the records.

Alleged link between hepatitis B vaccine and chronic fatigue syndrome.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1488229/

Its just really difficult for doctors to see the association between ME-CFS and vaccinations, because it wont show up on any blood test or exam. The potent vaccine altered and dysfunctioned the immune system--bottom line. They can detect that with NK cells, cytokines, etc. My immune system is over-active because of a Hep B Vaccine. Can you believe that? I wouldnt be surprised if XMRV or a different virus is transmitted through vaccines.

SV40 in polio vaccine FACT....
The outbreak is most remembered for the mass immunization that it prompted in the United States. The strain itself killed one person and hospitalized 13.However, side-effects from the vaccine caused five hundred cases of GuillainBarr syndrome and 25 deaths.[3][4] FACT
And what happened to the Swine Flu pandemic that people were waiting in line to get vaccinations for? I never hear about it on the news any more??
And why is Obama being a role model in this picture? http://news.discovery.com/human/president-obama-gets-his-h1n1-shot.html
Its probally a set-up, because he didn't have his daughters vaccinated.
http://www.youtube.com/watch?v=zT9fxhrjoQc (does anyone else find it amusing that the first piece advice for swine flu is "catch it"?)
http://www.youtube.com/watch?v=1yqJKhkOXWM&feature=related (swine flu ad 1976)
I think for the majority of Americans, vaccination is fine, but with people who have vulnerable genetics, the vaccination will cause harm, and in my case CFS-ME.
 

insearchof

Senior Member
Messages
598
SB- I understand how governments work and the scenario you put forward. I liken that to the beingings of privatisation of the public sector, that was taking place not only in the UK, but also here. I dont pretend to know or understand how the medical system operates in the UK, and that might add to my understanding.

However, it still does not give me a convincing explanation for the silence of thousands of medical practitioners suddenly accepting the idea of CFS (CDC) replacing a distinct well understood diverse medical entity called ME- many of whom in the polio days, would have observed clinicial manifestations spoken of in the medical literature first hand. And I will give you a very good reason why: english common law / fear of litigation. Doctors hate the word - but it is a big motivational factor in the way they practice medicine. If a doctor ignored years of sound medical literature pointing to diagnostic tests and management and care for a condition -in favour of a new model that was not even related to the condition - they would be looking at a negligence action. That would have had many doctors familiar with ME troubled and highly motivated asking questions and rejecting the CDC CFS. And those specialist ME doctors did so - and continued to reject CFS as a substitute for ME - because it was not and is not. But what about the thousands of others ?

MarkMC - hard to manipulate thousands of medical practitioners. One or two sure, but not thousands.
 
Messages
877
MarkMC - hard to manipulate thousands of medical practitioners. One or two sure, but not thousands.

I think I got it insearchof, at least the tactics used today in 2011:

Have a bunch of bogus research done and published by government researchers to make it seem like a psychological illness.

Write about it in the news over and over.

Have the chief of the governments CDC or MRC support the position it is psychological.

Bingo. No more liability for the doctors treating a biological illness as psychological? The goverment, news, head of research council all officially support the position and the research is there to back it up. Old stuff is a distant memory.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
This left me deeply troubled for a long time Bullybeef.

What defies belief, is that the medical profession in the UK simply accepted that 54 years worth of medical literature on non paralytic polio/ME was no longer valid - and that the psycho one was .....and with the exception of Richardson, Ramsay, Behan et al - all without question or any real challenge.

What was wrong in the 1980s? well in the UK, it appears that the intelligence, scientific scrutiny, backbone and moral conscience of medical doctors and researchers right across the UK went AWOL. If anyone is to be held accountable, dont forget the entire UK medical profession.

This doesn't speak well of medical profession in the UK etc if true. So large numbers of people had no morals or just threw out their Hippocratic oath? How disturbing if it were/is true. Unconscienable, how about serving the poor and weak?

GG
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
In Osler's Web, Walter Gunn said CDC was getting at least 10 reports of outbreaks from doctors a year in the late 80s

My thoughts is that it just was more publicized in the 1980s hence outbreaks more reported. Large outbreaks have happened all over the world for a very long time eg 600 close to where where i live in the 1950s. I personally dont think it can be said it was more common then due to lack of ones who report it, we just dont know accurate figures. Less doctors would of known about it way back (before the 1980s) then then they do now.

I also think there may be cofactors in these outbreaks eg in one big ME outbreak, there had been also an outbreak of polio at the time. It makes me wonder if some viruses or other things, weaken the body enough for XMRV or something else to take hold.
 

anne_likes_red

Senior Member
Messages
1,103
Also of note re the 80's epidemics is that those doctors who were right there on the spot during the epidemics (Bell, Peterson, Cheney, and the late Dr Snow in Tapanui NZ) really hung in there for their patients. I think those doctors (and there are probably others I'm not remembering right now) saw something pretty significant in their patient populations.

Tapanui Flu people tested positive for coxackie too I think.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
WHere did you hear that? I don't think there's any doubt that the Royal Free epidemic was ME. Acute onset ME is severe and will cause some degree of transient flaccid paralysis initially, and this is as true today as it was 50 years ago (people that say otherwise are out of touch and not worth listening to, as severely affected sufferers are the living proof).
which? that it might have been polio? Dowset mentions this, and it's my own supposition based on the fact that LA General Hosp was documented that the persons who got the Disease walked through the polio ward, and from the notion that earlier there was more paralysis. That it had more paralysis? Not sure, I think Ramsay described some of that? Or other early descriptions? Don't recall for sure, sorry.

I agree: There's no doubt at all that Royal Free was ME; that's where the disease was characterized and named.

As for the spinal inflammation, AFAIK it was based on clinical signs and history not postmortems, but ironically we now have a steady stream of postmortems finding ganglionitis and neural cell death (lesions) on postmortems, some well publicised.

Unfortunately, for reasons best known to themselves, Shepherd and Chaudhuri are declaring these cases as comorbidities or even differential diagnosis. Bizarre...

Indeed, that and genuine ME has been driven underground. Clinics and specialists tend to never see severe cases.

And the old outbreaks they gave people what they needed - rest - rather than abandoning them and expecting them to do more more than they can then blaming them for "push crash".

AFAIK?

So you're saying we do have myalgic encephalomyelitis now? Cool. I had not heard and I'm happy to know this. Can you give me some citations or anything for my collection?
 

insearchof

Senior Member
Messages
598
MarkMC - that was the conclusion I arrived at also.

However, I dont know - but I would question whether legally that would hold sway ie: replace medical literature of bio physical abnormalities and illness with a psychological/non physiological one. Not sure at all on that. But I bet its never been tested.


So you're saying we do have myalgic encephalomyelitis now? Cool. I had not heard and I'm happy to know this. Can you give me some citations or anything for my collection?

Willow - google/visit - Hummingbirds Foundation for ME or a Hummingbirds Guide to ME - loads of information there.

Re the LA General Hospital Outbreak in 1934 - was studied and written up about by Alexander Gilliam and became the first medical characterisation of ME. I think there were two outbreaks associated with this case. The second wave of illness amongst health care workers was thought to be due to a prophylatic of pooled adult serum via injection. These patients ended up suing the state and hospital and it was settled back then for several million dollars in 1938-39.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
insearchof, thanks :) I've been to hfme, but it's a huge site and not necessarily well organized. I'll check if I ever get the energy, tho. Have other pressing projects just now.

I know the words, but I don't understand what is meant by "prophylatic of pooled adult serum via injection". Can you rephrase?