CDC's History with ME/CFS - 1996 PrimeTime Report

George

waitin' fer rabbits
Messages
853
Likes
80
Location
South Texas
I don't know muffin I think that Dr. Reeves, in his supreme arrogance, might have given patient advocacy groups enough ammunition to at least get him a congressional hearing. If all the stars line up just right. (grins)
 
Messages
1,035
Likes
819
It's outrageous isn't it, and tragic.
There was a thread on this a couple of days ago...
(I think everyone should see this video.)

Check out this video from 1996:

http://vimeo.com/13048135

Can you believe it, all those years ago, even after the 1991-92 DeFreitas CAV retrovirus, it was still ignored. And even the assistant health minister suggested ME/CFS was caused by a retrovirus all them years ago!! Unbelievable!
 

muffin

Senior Member
Messages
940
Likes
15
Sent the video link all around

Sent it to Freiden at CDC and Sebelius at DHHS. Hope they bother to watch what happened 15 years ago and since then nothing has changed. Video really blew my mind and enraged me.

I suggest sending the video link to anyone and everyone so that they can see what was said all those years ago. Send it to the media types, they might watch it. Put www.oslersweb.com in the email for background. Worth a shot.
 
Messages
74
Likes
14
Thanks for posting.

I think that it is really sad to think back on what patients must have felt like in 1996. Osler's Web had just come out, there was Media Coverage, and it seemed like some kind of infection theory was sure to pan out in the next few years and then treatments. I wonder if most everyone sick at that time felt that Osler's Web, and all the exposure would turn the tide? Maybe someone can tell us how optimistic or pessimistic they felt at that time?

Additionally you have a government scientist going on record as calling patients hysterical in what seems like the height of absurdity, being derelict at the very least.

In some ways it is eerily like now. It's really sad that if you transported someone from 1996 to now they would think for sure there would be some treatment, something by now. I wonder if they would gag at the mention that one of the hot new treatments is Ampligen, which is being tried for the umpteenth time? And no it isn't approved now either. And yes the CDC is now studying the connection between metabolic syndrome and CFS. And also child-hood trauma.

Search Google Images, there isn't a face-palm icon worthy of the ridiculousness of all that.
 

thegodofpleasure

Player in a Greek Tragedy
Messages
205
Likes
403
Location
Matlock, Derbyshire, Uk
Vested interests & reputations (pensions) to protect.

If you watch this and then put it into the context of the politics of what's happened in the last month (i.e. CDC -ve study & supression of the Alter / Lo paper) then you can understand why people who have been ill with this for a very long time, want to see the heads of people like Reeves, The Weasle et al. , removed & stuck on a spike !

Will there be a Federal Investigation in order to prove wrong doing?
I really hope so - and similalrly, a public enquiry in the U.K.

There's clearly plenty of scope for one over here in the UK - chaired by someone, respected by the British Public, with a good track record for getting at the truth. Someone impartial and free from government interference. Someone who won't feel obliged to reach a predetermined outcome. Someone like..........Lord Hutton !!!! :confused: :eek: :innocent1: :scared: :oops:

TGOP
 

LaurelB

Senior Member
Messages
127
Likes
23
Just FYI, with permission from the person who put it up on Vimeo, I now have this up on youtube as well (to help get a wider audience). Unfortunately, all youtube videos now have to be under 10 minutes, so it had to be separated into parts.

PART 1
http://www.youtube.com/watch?v=sjVsSbmiTZg

PART 2
http://www.youtube.com/watch?v=dslZpCMCTMI

Someone else may have done a better job at splitting them up, but I did the best I could. :)
 

mezombie

Senior Member
Messages
324
Likes
30
Location
East Coast city, USA
I think that it is really sad to think back on what patients must have felt like in 1996. Osler's Web had just come out, there was Media Coverage, and it seemed like some kind of infection theory was sure to pan out in the next few years and then treatments. I wonder if most everyone sick at that time felt that Osler's Web, and all the exposure would turn the tide? Maybe someone can tell us how optimistic or pessimistic they felt at that time?
I was there.

Much of the media coverage came after those of us who were advocates pushed, and pushed hard for it (including this Dateline show).

Phil Lee was one of the "good guys"; he was a former health commissioner for California when AIDS started, so he truly did feel there was a viral cause for ME/CFS. And, most important, he actually gave a hoot about the patients. But even he, who was head of the US Public Health Service at the time, could not change the tide.

As to Osler's Web, yes, I certainly felt the tide would change after its publication. The book was prominently displayed in all book stores. The publicists arranged what looked to be a good book tour for Hillary Johnson.

Then the CFIDS Association became enraged at HJ's assertions that ME/CFS was a contagious brain disease. Apparently, the membership was upset. (Oh no! Can't have that!) The CAA also was miffed that HJ criticized the organization in her book. Plus, the CAA had given HJ some financial support to help her write the book and felt she did not acknowledge this properly.

The entire book tour turned into a fiasco when the CAA learned where she would be speaking and managed to convince the producers of all shows to include Kim McCleary. Kim did her best to poo-poo Osler's Web in front of a national audience. The tour turned into the Hillary & Kim show. It was awful to watch and listen to.

I believe Osler's Web and the resulting publicity could have turned things around. Instead, the CAA, "our" (cough, sputter) advocacy organization did their best to kill the message.
 

muffin

Senior Member
Messages
940
Likes
15
I got sick with CFIDS in 1994, two years before Osler's Web came out

KnightofZERO
I think that it is really sad to think back on what patients must have felt like in 1996. Osler's Web had just come out, there was Media Coverage, and it seemed like some kind of infection theory was sure to pan out in the next few years and then treatments. I wonder if most everyone sick at that time felt that Osler's Web, and all the exposure would turn the tide? Maybe someone can tell us how optimistic or pessimistic they felt at that time?

MUFFIN--->>> We did think that it may be over when Osler's Web hit and there was a fair amount of media coverage. Then BOOM! Gone. And nothing more came of any of it, as I recall. So I and others I am sure went into a depression because they held this big thing out to us and then grabbed it away again. And we continued to be deemed lazy, crazy, and all sorts of other horrible titles that I/others got nailed with time and again. All because we happened to get the wrong diagnosis (CFIDS) and the CDC and NIH were damned if they were going to allow any more real research be done on this disease or the Defreitas Retrovirus. Yes, the NIH killed off funding for Retrovirus research so don't think that the NIH is our friend - they weren't and I still don't trust them either, yet). So here we are again, Round Two, of another Retrovirus and more public interest. But this time it will NOT get killed off, not again.

Additionally you have a government scientist going on record as calling patients hysterical in what seems like the height of absurdity, being derelict at the very least.

In some ways it is eerily like now. It's really sad that if you transported someone from 1996 to now they would think for sure there would be some treatment, something by now. I wonder if they would gag at the mention that one of the hot new treatments is Ampligen, which is being tried for the umpteenth time? And no it isn't approved now either. And yes the CDC is now studying the connection between metabolic syndrome and CFS. And also child-hood trauma.
Search Google Images, there isn't a face-palm icon worthy of the ridiculousness of all that.[/QUOTE]
 

glenp

"and this too shall pass"
Messages
776
Likes
20
Location
Vancouver Canada suburbs
Transcript Prime Time Live ME -- 27 march 1996

http://www.me-cvs.nl/index.php?pageid=3474&printlink=true&highlight=scriptie7 april 1996

Bijdrage: Bob Hutchison / Elaine Blanchard




Transcript Prime Time Live ME -- 27 march 1996
-------------------------------------------------------

PRIME TIME LIVE, Wednesday 3/27/96 Segment: Sick & Tired. The Players:
Sam Donaldson, Nancy Snyderman, M.D. [Good Morning America], Paul Cheney,
M.D., various PWCs, Hillary Johnson [Osler's Web author], Elaine DeFreitas
[researcher]

Sam Donaldson: A mysterious ailment surfaced more than a decade ago which
some experts say has affected more than 2 million people across the country.
You might assume that federal medical researchers have been actively
investigating its cause and possible cure. But a new book, "Osler's Web" by
Hillary Johnson, charges that for too long the government dismissed the
disease, with devastating consequences. Good Morning America's Dr. Nancy
Snyderman travelled to Ground Zero to learn more.

Nancy Snyderman: [walking beside Lake Tahoe, near Incline Village] There
were no warnings, no signs in the fall of 1984 that life would be any
different in Lake Tahoe than it had been in all the months and years before.
For most people, nothing looked different, nothing was different. But for
some, a shadow began to fall over everything that was familiar. [ominous music]

Male PWC: I was totally disoriented, stepping out my front door literally
into the street and not know where I was. We had very bright individuals
who had difficulty finding their way home from the grocery store, getting
lost in a small town.

Female PWC: Things were shifting. I couldn't figure out if I was sitting
at an angle or if the rest of the world was.

NS: It seemed like many in the Tahoe area were suddenly coming down with a
bad flu, developing a weird kind of dementia and an almost total loss of
energy. Dr. Paul Cheney was mystified; he had never seen patients like this
in all his years of practice or study. Neither had his partner.

Paul Cheney: This seemed to be like evolving before our eyes from a
flu-like illness into something else.

PWC Kelley Jeffery: Your body is just limp; it's like a wet noodle.

PWC Jerry Crum: At my worst, my IQ had dropped to 85, which is borderline
mental retardation, so I'm told.

NS: Something serious was happening, but Cheney didn't know what it was.
Lab test after standard lab test showed nothing, and it seemed to be
spreading, through the local hotel and casino, two area high schools,
members of a girls' basketball team.

PC: That's when we wondered hey, maybe we oughta call somebody--this is
really unusual.

NS: They called the CDC, the Centers for Disease Control and Prevention,
the government agency in charge of tracking epidemics. But instead of
coming to the rescue, the CDC just kept putting them off.

PC: I remember calling them from time to time and saying, the numbers are
up to a hundred and ten, and then the numbers are up to a hundred and
twenty, and you wouldn't believe what I saw today.

NS: By September 1985, Cheney and Peterson had been calling the CDC for
months pleading with them to investigate the outbreak in the Tahoe area.
Now they had a hundred and fifty patients, many of whom had been disabled
for months. Their hopes the CDC would send investigators were fading when
suddenly the CDC called! Investigators were coming. FINALLY, they thought,
someone is coming to help. They were wrong.

PC: This illness required that you just stare at these people and just
listen for long periods of time and that's exactly what they didn't do.

NS: Instead, according to Cheney, the CDC investigators looked at their
charts and test results, took some blood samples, and headed back to the CDC
without a word.

PC: It was as if they just sort of disappeared.

NS: Alone again, Cheney and his partner wouldn't give up. They had a
theory that required using over $200,000 of their own money to order MRI
scans of their patients heads. That's when they got their first big break
and discovered that their patients had lesions on their brains.

PC: We took a stack of them to a neuroradiologist and showed them to him
and he said, "Very interesting, let me show you these." And I said yeah,
that looks just like mine. I said, "Who are these?" He said, "These are
AIDS patients."

NS: Another lead. The similarity to AIDS might mean his patients had
immune system problems. That's where Cheney decided to look next.
Meanwhile, at the CDC, the mood was anything but urgent.

Hillary Johnson: The tone behind the scenes at the CDC was one of complete
and utter ridicule.

NS: Reporter Hillary Johnson has tracked the story for ten years.

HJ: Employees of the CDC would make jokes about this disease. If anyone
ever said something like, gee I'm tired, they would be teased about having
this fake, bogus disease.

NS: In May 1986 the Centers for Disease Control released this report
[Morbidity & Mortality weekly Report, May 30, 1986] on the investigation of
the Tahoe outbreak. [A string of newspaper headlines flash by: "Health
officials dismiss mysterious disease at Incline" "Stealthy Epidemic of
Exhaustion--Doctors are perplexed by the mysterious 'yuppie disease'"
"Fatigue: Chronic Fatigue Syndrome prevalent in several Tahoe communities"]

PC: The overall message, the tone of the paper, was that this was, this did
not appear to be anything at all.

NS: To Cheney and his supporters it was a major blow. Even the name the
government gave the disease, Chronic Fatigue Syndrome, was belittling.

HJ: It makes it sound like a benign condition. It doesn't sound catching;
after all, you can't catch yuppie burnout. This is not a disease about
being tired; this is a very serious brain illness. It's an epidemic hiding
in plain sight.

NS: And it wasn't just in Lake Tahoe. Over 2,000 miles away in the small
rural town of Lyndonville, New York, Dr. David Bell was dealing with his own
outbreak.

David Bell: It appeared that this was some type of a viral infection that
was going through town.

NS: And in Lyndonville, that illness seemed to be targeting the young. All
four of Jean and Paul Pollard's daughters got sick.

Paul Pollard: I felt helpless and it was difficult to see them suffer, and
they suffered a lot.

NS: With more than 50 patients ill and no answers, Dr. Bell reached out to
the CDC for support, hoping he wouldn't have to battle the illness alone.

DB: I was under the impression that this was the only place in the country
where this illness was occurring.

NS: The CDC never helped, and they never told him about Lake Tahoe. But in
1987 doctors from around the country met at a medical conference in
Portland, Oregon, to discuss the disease. It was there that Dr. Bell met
Dr. Cheney and they decided to join forces to look for the virus that they
believed was attacking their patients' immune systems in the hopes that
FINALLY the CDC would believe them. But it was still an uphill battle.

Back then, the press was reporting that patients were infected with an
already familiar virus. [ABC's Nightline clip: ABC medical reporter Dr. Tim
Johnson saying, Chronic Epstein-Barr Virus Syndrome..] [Newspaper
headlines: "Tired all the time--Doctors study Chronic Fatigue and its link
to the Epstein-Barr virus" "Malaise of the '80s--the puzzling and
debilitating Epstein-Barr virus" "Basic symptoms may be sign of sign of
Epstein-Barr virus"] Epstein Barr was eventually ruled out, but the
government's favorite explanation for the disease, that a cause was in the
mind, remained. The National Institutes of Health lead researcher appeared
on Nightline: [Steven Straus, NIH] "From my own research I know this
disorder is so subjective that patients will commonly feel better no matter
what you give them."

Physicians everywhere followed the government's lead. And patients
like 13-year-old Skye Dailor in Rochester, New York, would go from doctor to
doctor, only to be told it was all in her head.

Mrs. Dailor: They were convinced she was crazy. They said, she just
doesn't want to go to school, there's nothing wrong with this girl.

NS: The kids at school made it worse for Skye. Many teased her and refused
to believe she was sick. Some even ostracized her, saying she had AIDS,
refusing to sit with her in the cafeteria. Finally, her mother found David
Bell.

Mrs. Dailor: I can't even tell you how we felt; it was, you mean we're not
crazy?

NS: Meanwhile, in 1988, Cheney had another lead--Elaine DeFreitas, a bright
young scientist studying the link between multiple sclerosis and an immune
system virus. Because MS had some symptoms in common with Chronic Fatigue
Syndrome, DeFreitas agreed to test some of David Bell's patients, including
13-year-old Skye, for the viruses she was working with.

Elaine DeFreitas: And to my surprise a number of these patients were
positive. I didn't KNOW what it meant. But, we felt that we had to pursue
it further and if the data held up, we had a responsibility to tell the
scientific community what we found.

NS: What she found was the first evidence that the patients might be
infected with a new immune system virus. DeFreitas' findings were something
to tell the world about but on the night she, Bell and Cheney were leaving
for a meeting in Japan [The CFIDS Chronicle, Special Issue, Research
Breakthrough! picturing Cheney, Bell and DeFreitas] to announce the
discovery, David Bell was paged in the airport. It was an emergency room
doctor in Rochester, New York who was trying to resuscitate Skye Dailor.
That day, a classmate of Skye's had cruelly suggested she go home and kill
herself. David Bell listened over the phone as 14-year-old Skye died from
an overdose of pills. [Skye's grave: Skye Kristina Dailor, January 28,
1976 - September 1, 1990]

Mrs. Dailor: She died for no reason. No one should have to suffer that
way, nobody.

NS: It was too late to help Skye, but Cheney and Bell thought the CDC would
be interested in DeFreitas' major discovery. Once again, they were wrong.
[Newspaper Headlines: "Virus found that may be linked to a debilitating
fatigue ailment" "Does a retrovirus explain fatigue syndrome puzzle?"
"Chronic fatigue linked to Virus" "Viral clues found in 'yuppie flu'"]

HJ: Even though this was in every major paper, headlines all over the
world, NO comment from the federal government--absolute dead silence.

NS: Eventually, the CDC wrote a paper dismissing DeFreitas' findings
[Investigation of retroviral involvement in chronic fatigue syndrome]. But
she pushed on, finally isolating a new virus, seen here for the first time,
which she believes may be one of the causes of Chronic Fatigue Syndrome. It
is a virus that attacks the immune system and can lay dormant for years.
But DeFreitas says the government has ignored her discovery.

We asked to speak with the Centers for Disease Control and the National
Institutes of Health about Chronic Fatigue Syndrome but they refused.
Instead, Dr. William Reeves, the man in charge of investigating chronic
fatigue for the CDC, told us over the phone that (1) there IS no viral cause
for this problem, (2) there are no immune symptom abnormalities in patients
with chronic fatigue, and (3) there are no clusters. So when asked about
the illness at Lake Tahoe, he said that was hysteria.

EDF: If they admit to a cluster, then they MUST say it's infectious and I
don't think the CDC wants Chronic Fatigue Syndrome to be considered infectious.

NS: The government finally did put someone forward to talk to us--Dr.
Philip Lee, Assistant Secretary of Health. [Snyderman interviewing Lee]:
Do you believe in clusters?

PL: Do we have clusters of cases? Oh yes, I do.

NS: Dr. Reeves told the producer for this piece that in fact the Lake Tahoe
"cluster" didn't exist and the people living there are hysterical.

PL: Well again, that's his view.

NS: But he's a scientist at the CDC; he's responsible for investigating
these kinds of things!

PL: The CDC did investigate that. They reached certain conCLUsions, which
many people disagree with.

NS: Do you believe it's a virus?

PL: I really don't know, I mean..

NS: If you had to take..

PL: Well I would guess..

NS: an academic hunch..

PL: Well I would say it would be a retrovirus or a virus, I would think so.

NS: Lee says the government is making progress. But Hillary Johnson, whose
book is being released today, remains unconvinced.

HJ: I think it's one of the most incredible medical stories of our century
and it's going to be very, very hard for the government to change its
position on this disease. I mean to have to sort of call up the American
public and say, hey, you know that disease that we've been calling chronic
fatigue syndrome for the last ten years, well guess what, it's really
something far more serious and it's transmissible and we made a mistake in
Tahoe and we've been making a mistake ever since.

Sam Donaldson: The debate inside the government continues about what causes
Chronic Fatigue Syndrome and about whether it's contagious. There is no
treatment for the disease itself; doctors can treat only the symptoms that
patients continue to suffer.
 
Messages
1,028
Likes
377
Location
Washington
Wow, Awesome find. Definately explains why CDC does not want CFS to be contagious.

I had no idea that there were cluster outbreaks of CFS. This definately explains why the CDC has an interest in making sure no one sees this disease as contagious. I assume that if CFS is discovered to be a virus, and the CDC ignored the original outbreaks, people would loose their jobs, and, hopefully, their reputation. The part about the girl who killed herself was so sad, I cried. I don't know whether to be mad, sad or vindicated right now. Can you imagine if they find out most cases of CFS and some FMS cases are caused by a virus and they let this spread? Wow, it just blows my mind that a group of people we depend on to keep us safe would be so incompetent.
 

muffin

Senior Member
Messages
940
Likes
15
Already sent that video link off to many people

Amy Marcus (WSJ) was first on the list followed by Sebelius and Freiden (CDC). Also sent it off to other media types as well. Wanted them all to see how long this saga has gone on. Also wanted them to see that the media did pick it up and run with it (Sam Donaldson?!) and it was about the DeFreitas virus that the CDC damaged (two replications with opposite results) and then the CDC and NIH killed off any further funding on this Retrovirus.

I just hope people took the time to hit the link and watch the video. Tried to embed video into email but it wouldn't work.

Very powerful video and it goes back almost 15 friggin years!!! Nothing has changed and they all need to see this. But, what has changed is the Internet and the super fast information that moves at MACH 6 speeds. Now, none of them can get away with much without us and others knowing about it as soon as it gets out.

Keep emailing that video/link to the media types. Email it all over. Very powerful. Very upsetting and made me mad as sin since I have been sick since 1994.
 

biophile

Places I'd rather be.
Messages
8,977
Likes
16,579
So if it wasn't for such "patient lobbying", the US government wouldn't have spent anything at all on CFS? That's disgusting.

This video is further evidence that the CDC has been part of the problem from the very beginning. What have they actually achieved after 25 years? Under the CDC's watch, at least 25 years x $25 billion per year in economic losses due to ME/CFIDS = $625 billion. Progress has been so slow (and has even gone backwards in some areas) that unless something fundamental changes, there will certainly be another 25 years and $625B, totalling at least 50 years of suffering for millions of US citizens with some premature deaths, and OVER A TRILLION DOLLARS IN LOSSES, largely because the authorities refused to take "CFS" seriously. It's insane that more isn't being done.

It's also pathetic that I am impressed and grateful with recent studies which validate the bleeding obvious, like the existence of post-exertional symptoms and the biological consequences of exercise, as patients have been complaining of this for decades and this kind of research should have been funded in the 1980's already.

Reeves is "on record" (1996) for dismissing the Lake Tahoe cluster as "hysteria" and claiming that CFS "has no viral cause". Reeves is also "on record" (2010) for oxymoronic comments like "XMRV is ubiquitous (everywhere) [...] we probably won't find it". I expect the CDC to soon classify XMRV infection as "exclusionary" for CFS but still deny pathogenesis of XMRV for as long as bureaucratically possible.
 
Messages
1,028
Likes
377
Location
Washington
Hi. I was reading an abstract the other day about Gene Therapy experiments. I wish I could remeber what I did with the article. Anyway, it said that they were using retroviruses and the adeno virus, but stopped when they found they were too viril (I don't think I spelled that correctly). I was wondering how they figured out it was a bad idea and who or what they experimented on. It did not give that information.