Re: Great LA Times article on CFS

April 21, 2006

Hi ,

If it doesn't come through in another format please could you scan it -

I'd be very interested but am in the UK - rather a long way away to be

buying the LA Times ;-)

Rosie

Subject: Great LA Times article on CFS

I'm in LA so not sure if this newspaper goes out anywhere else; but

there

was a great article in it (front page!!) in which it discussed how

bebilitating the illness is; how there are 4 sub-groups who have it; how

it can be worse

than those with AIDS or on chemo, the researchers also identified many

genes

which would likely lead to MUCH better treatments in the future. Its

in the

April 21st issue (friday). It should be online at some point but if

not I

could scan it if no one can find it anywhere else. It is a must read

and

something one would really want to share with their family and friends,

especially the skeptics.

April 21, 2006

Hi, here is a url for this story.

http://www.latimes.com/news/printedition/la-sci-fatigue21apr21,0,7025295.story

Regards

Simon Lawrence

Great LA Times article on CFS

>

> I'm in LA so not sure if this newspaper goes out anywhere else; but

> there

> was a great article in it (front page!!) in which it discussed how

> bebilitating the illness is; how there are 4 sub-groups who have it; how

> it can be worse

> than those with AIDS or on chemo, the researchers also identified many

> genes

> which would likely lead to MUCH better treatments in the future. Its

> in the

> April 21st issue (friday). It should be online at some point but if

> not I

> could scan it if no one can find it anywhere else. It is a must read

> and

> something one would really want to share with their family and friends,

>

> especially the skeptics.

>

April 21, 2006

Sorry to be such a killjoy, but the LA Times article has another red

flag for me.

Only 16% of the people with CFS had been diagnosed.

I know that I was so sick when I first came down with ME/CFIDS that I

could not have gone on with my life until someone contacted me at

random and informed me that I had CFS.

It did take several months for me to get the diagnosis of ME/CFIDS

(in 1991) but I went to a number of doctors during that period and

could not believe my ears when they told me they couldn't find

anything wrong with me after I explained to them how sick I was. I

looked sick too. I was waking up constantly through the night and

dragging my half dead body around during the day.

I have my doubts that the CFS patients in this study have the same

illness that I have.

Tom

April 21, 2006

" Tomcy6 " wrote:

> Sorry to be such a killjoy, but the LA Times article has another

red flag for me.

Only 16% of the people with CFS had been diagnosed.

I know that I was so sick when I first came down with ME/CFIDS that

I could not have gone on with my life until someone contacted me at

random and informed me that I had CFS.

It did take several months for me to get the diagnosis of ME/CFIDS

(in 1991) but I went to a number of doctors during that period and

could not believe my ears when they told me they couldn't find

anything wrong with me after I explained to them how sick I was. I

looked sick too. I was waking up constantly through the night and

dragging my half dead body around during the day.

I have my doubts that the CFS patients in this study have the same

illness that I have.

> Tom

Tom. You are absolutely right!

You can see hints of the CDC " put up job " strategy of using Reeves

as a whistleblower to get themselves out of a jam after they stole

the money and lied to Congress in the CNN interview below.

It's playing " Good CDC / Bad CDC " and gets them off the hook with

less fuss than a Congressional censure and nothing more than

a " sincere apology " .

Reeves defends the team that went to Incline saying there was no

evidence.

That is a bald faced lie.

Ask anybody who was there. Ask the Kennedy's or Dr .

It's expressed in almost every interview that this illness could not

possibly be overlooked.

You could spot any of us at a hundred feet with that weird

staggering gait we used when we could walk at all.

Not only that, some people had their eyes almost completely shut

from myasthenia gravis, and EVERY ONE of us had dark circles under

our eyes worse than a heroin addict.

I remember going to Candace Gleeds support group meeting at Lord of

Mercy Lutheran church on Pyramid highway and wondering if she was

going to live long enough to have another meeting - she looked so

sick.

There was NO mistaking this illness.

When the girls basketball team suddenly got sick and couldn't walk,

let alone play basketball, that's fairly noticeable - except to the

CDC.

Oh yeah, forgot. All the girls must have been under some sort

of " stress " simultaneously.

Truckee Wolverines losing streak perhaps?

-

_________________________________________________

Station: Cable News Network (CNN)

Date: Oktober 24, 1999

Programme: CNN & Time

URL: http://cnn.com/TRANSCRIPTS/impc.html

(home page)

http://cnn.com/CNNPromos/cnntime

(home page 2)

http://cnn.com/TRANSCRIPTS/9910/24/impc.00.html (text)

SICK AND TIRED

--------------

ANNOUNCER: CNN & TIME. Tonight, " Sick and Tired. " It's been called

the yuppie flu, but it's been anything but a passing fad. It is a

major public outcry.

We all have days when it feels like we just can't roll out of bed.

We're tired, listless, completely drained. But imagine feeling that

way and worse day in and day out for weeks, months, and even years.

JEFF GREENFIELD, HOST: We're talking about chronic fatigue syndrome,

the mysterious, debilitating illness that first showed up in the mid-

1980s. And if you thought that this yuppie flu was the invention of

hypochondriacs or had gone the way of Duran Duran or somehow had

been cured, consider this. In the United States alone right now,

hundreds of thousands of people may be struggling with CFS.

Here's Daryn Kagan.

(BEGIN VIDEOTAPE)

DARYN KAGAN, CNN CORRESPONDENT (voice-over): As the 1999 Women's

World Cup came down to the wire in penalty kicks, another drama was

taking place behind the scenes.

MICHELLE AKERS, U.S. WOMEN'S SOCCER TEAM: I'm graying out, and I

can't hear, and my body's just clenched.

SPORTS ANNOUNCER: Look at Akers. She leads by example.

KAGAN: Akers played 90 minutes in blistering heat, until

her body gave out.

SPORTS ANNOUNCER: All eyes are on Akers.

AKERS: So they put me on the table and then started trying to get

the IVs in.

KAGAN: Akers' doctors, coaches, and teammates know her symptoms are

real, but some people think the disease she's recovering from,

chronic fatigue syndrome, is not.

(on camera): When you say worst, what does worst feel like for

people who don't know what that feels like?

AKERS: It's like just feeling totally empty on the inside. It's

like -- there's no reserve, no energy. It's like a black hole in the

very depths of your soul.

(voice-over): For years, CFS has been dismissed by many in the

general public, the medical profession, even experts at the Federal

Centers for Disease Control and Prevention. Fifteen years ago, a

mysterious illness swept through the Alpine resorts and towns near

Lake Tahoe. Incline Village, Nevada, was ground zero.

DR. DAN PETERSON, PHYSICIAN: The first ones were isolated cases. A

marathon runner in town who couldn't run any longer.

KAGAN: Dr. Dan is a local physician. He saw the first cases.

PETERSON: Then we started seeing the clustering with the girls' high

school basketball team where the entire team became ill -- extremely

ill.

KAGAN: At Tahoe-Truckee High School, dozens of students came down

with symptoms resembling mononucleosis. So did a third of the

teachers.

JERRY KENNEDY: You're not tired. You're -- it's like the blood's

drained out of you.

KAGAN: Like Jerry Kennedy who taught auto mechanics and drafting and

his wife Janice (ph) who taught English.

JANICE KENNEDY, FORMER HIGH SCHOOL TEACHER: It's like having bricks

piled on you. It's as though you're fighting to move at all.

JERRY KENNEDY: It's the worst feeling I've ever had in my life. I

can't compare it to anything else that's ever happened to me.

KAGAN: The number of cases multiplied during the summer of 1985.

PETERSON: That's when I first thought, well, there's some new

contagious disease, you know, I mean, there's something in the

water, some Typhoid had come into the school system and

affected the kids and the teachers.

KAGAN: Besides fatigue, most patients developed a bizarre mental

fogginess.

JERRY KENNEDY: You feel dumb because you can't remember things. You

forget people's -- you don't even comprehend the names. You lose it.

JANICE KENNEDY: As an English teacher, I remember one horrible

moment when I asked myself, " What is a subordinate clause? " I could

not remember what a subordinate clause was.

KAGAN: Eventually, more than 250 people living around Lake Tahoe

seemed to have the illness. For months, Dr. couldn't

persuade anyone to investigate. Finally, the CDC agreed to send a

two-man team.

JANICE KENNEDY: They didn't seem to feel that there was an epidemic,

and we knew there was. It might have been small, but it definitely

existed.

DR. WILLIAM REEVES, CDC EPIDEMIOLOGIST: CDC's study at that time

failed to identify any evidence that there was an unusual occurrence

of a chronically fatiguing illness.

KAGAN: Dr. Reeves is the CDC epidemiologist now in charge of

investigating chronic fatigue syndrome. He didn't go to Incline

Village, but he defends the team that did. He also defends their

findings, which are still controversial today. REEVES: Using

epidemiologic public expertise of the time, there was no evidence,

clear-cut, replicable evidence that anything unusual is

happening in that population.

PETERSON: As I just said right now, I'm right about this. I know

that these people were well, and now they're sick, and they're

staying sick. So I have to hang in there and be diligent about it,

regardless of what the rest of rest of the world thinks.

KAGAN: Over the years, chronic fatigue syndrome has been thought of

as a trendy illness, the yuppie flu. Sufferers say the official name

the CDC gave it didn't help.

JANICE KENNEDY: Ever since they started calling it chronic fatigue

syndrome, I think every person who has had it, every family member

of someone who has it, every doctor who is familiar with it hates

that name because it seems to trivialize.

KAGAN: A diagnostic test for CFS has yet to be developed, but the

CDC did come up with a definition: debilitating fatigue lasting at

least six months, along with four of eight other symptoms. They

include sore throat, muscle and joint pain, short-term memory loss,

and an inability to recover from exertion. New cases have continued

to crop up all over the country. Akers first

noticed her symptoms in 1991.

AKERS: I would go into the shower after training and just cry and

cry and cry. It was the only place I could go to where no one would

see me and just say, " I can't do this. I can't do it. "

KAGAN: Akers sidelined herself for almost an entire season in order

to recover, but when she came back to soccer, she suffered constant

relapses. Still, she kept the illness secret from her teammates,

friends, even her family. Finally, in 1996, Akers went public. She

wrote an emotional letter to Congress describing a day in the life

of a typical sufferer.

AKERS: That was the first time I admitted publicly even to my folks

how bad I was actually feeling, and I read it to my dad over the

phone. I remember my dad was just stunned.

KAGAN: And so were some members of Congress who voted to give

millions of dollars to the CDC to solve the mystery of chronic

fatigue. But less than half actually went directly to CFS research.

That led to another mystery. What happened to the money?

(on camera): This year, federal investigators found out. The CDC

diverted between $9 and $13 million dollars, money that Congress had

specifically set aside to study CFS. Instead, it was spent on other

diseases, like polio and measles.

(voice-over): It was Dr. Reeves, the head of the government

CFS lab who helped bring the diversion to light. He says he did so

after a superior asked him to lie about how much money was going to

CFS research.

REEVES: I felt that the best thing to do was just to report this to

Congress, and that's when I formally blew the whistle.

KAGAN: But not before CDC officials gave inaccurate and misleading

information to Congress about how the money was spent. But why was

the money taken from CFS in the first place?

REEVES: It was taken from chronic fatigue syndrome because it was not

perceived by the people doing it as important as the other ones, not

perceived as an infectious disease.

KAGAN: The CDC's current director, Dr. Koplan, says all the

missing money will be restored over the next four years, and while

nobody was fired, the division overseeing CFS has been put on

probationary status.

DR. JEFFREY KOPLAN, CDC DIRECTOR: CDC, in regard to chronic fatigue

syndrome, misspent funds allocated to us for chronic fatigue

syndrome, and for that, we sincerely apologize to all parties

involved and in particular the people and

their families that suffer from chronic fatigue syndrome.

REEVES: We were set back. There is no question about that. We were

set back substantially. Programs suffered because of this. This has

probably set us back three to five years.

JERRY KENNEDY: I'm not surprised that the money went someplace else.

Somebody had the power to move it some other place, some pet project

they had, and they did it.

KAGAN: Perhaps the government's premier laboratory didn't make CFS a

priority, but other researchers have. Dr. Dedra Buchwald, a Harvard-

trained physician, arrived in Incline Village after the CDC left,

and she's been studying CFS ever since. She believes she's on the

verge of a breakthrough. She's designed a unique study using

identical twins. She compares sick twins to their healthy

counterparts, trying to detect differences caused by CFS.

DR. DEDRA BUCHWALD, CFS RESEARCHER: So they'll put the electrodes on

your head, and then what they do is -- they'll monitor your brain

waves.

KAGAN: (ph) and Martha (ph) are the 21st pair

of twins to take part in Buchwald's study. Martha was an Arkansas

state trooper for 20 years, until a series of worsening symptoms

forced her into early retirement.

MARTHA WILLIAMS, FORMER ARKANSAS STATE TROOPER: I always had a

reason for why I was hurting. It was either the leather gear or the

bulletproof vest. The boots. Getting in and out of the car. The

headaches was from my hat. Or my eyes hurt because the sun...

KAGAN: is a construction worker in Missouri. She's still on the

job.

MARY NELSON, CONSTRUCTION WORKER: Oh, yes. Yes. Anything they've got

that comes in by delivery, if I'm -- I happen to be at the

warehouse, I'm unloading it. KAGAN: Researchers aren't supposed to

know which twin is sick, but it's pretty obvious. Martha's symptoms -

fatigue, muscle pain, difficulty thinking and sleeping -- are

familiar indicators of CFS.

WILLIAMS: Your legs hurt. It feels like you're walking on needles.

In the night while you're trying to sleep, you wake up, and it's

hard to describe to someone, but it's like your arms and your legs

are asleep, or they're numb but they hurt.

(BEGIN VIDEO CLIP)

CFS RESEARCHER: Here we go. Just stare at that thing, and if you

have to blink, blink all at once, get it over with.

(END VIDEO CLIP)

KAGAN: For an entire week, the twins were put through a battery of

tests, tests to measure exercise tolerance, memory and thought

processing, sleep disturbances, and blood hormone levels.

BUCHWALD: What we thought was that there would very substantial

differences between the healthy twin and the sick twin.

KAGAN: But there wasn't. Both twins performed low on many of the

tests. Buchwald believes it's because both twins have a genetic

predisposition to CFS.

BUCHWALD: Right now, our thinking is just that there is a group of

people that are vulnerable or that are likely to be vulnerable to

get CFS.

KAGAN: Buchwald's study presents a new option, that hereditary plays

a major role in chronic fatigue.

BUCHWALD: Most people who have that predisposition will never get

chronic fatigue syndrome, but for an unfortunate few, they will be

exposed to some series of triggers or trigger, which could be

anything from an infectious illness to an episode of depression or a

motor- vehicle accident, that will trigger this chronic fatigue

syndrome.

KAGAN: Meanwhile, the Centers for Disease Control is still trying to

catch up.

KOPLAN: We're looking at what we have now, what resources we have in

terms of people and laboratory techniques, what studies need to be

done, who else we need to involve from outside in giving us more

information. So we're trying to set a forward course in saying how

can we make a difference with this disease.

KAGAN: They're starting with a new national head count. As recently

as two years ago, the CDC believed only 10,000 Americans had the

illness. Now the CDC says, based on a study in Wichita, Kansas, that

number is actually 40 times higher. Today, the CDC estimates 400,000

Americans over age 18 have active CFS.

REEVES: This is a major public health problem, and as I said, in

Wichita at least, this is about a quarter the number of people that

have -- women that have breast cancer, and it's about four times

more than the number of women that have cervical cancer.

KAGAN: But 15 years after the outbreak of CFS in Incline Village,

Nevada, the man who first identified the illness expected to be

further along.

PETERSON: I mean, the CDC is still counting heads, still saying this

disease exists, and here are the numbers. Well, we -- I never

expected to be here still quandering (ph) this problem 15 years

later. I really didn't.

KAGAN: Recently, did his own follow-up of 180 of his

original patients.

PETERSON: About 30 percent of them are still severely disabled. The

remainder have had substantial or at least partial improvements.

KAGAN: And how many are completely recovered?

PETERSON: None.

(END VIDEOTAPE)

GREENFIELD: In April, the Social Security administration official

recognized

chronic fatigue syndrome as a medical impairment. That makes it much

easier

for CFS patients to receive disability payments.

--------

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April 21, 2006

Carole & Simon wrote:

> Hi, here is a url for this story.

>

> http://www.latimes.com/news/printedition/la-sci-fatigue21apr21,0,7025295.story

>

This is just another summary of the Pharmocogenics journal articles.

It's in every newspaper by now, probably. A friend sent me a URL to the

story in the San newspaper.

--

el (andreafrankel at sbcglobal dot net)

" wake now! Discover that YOU are the song that the morning brings... "

April 22, 2006

HI Tom,

I'm inclined to wonder too. From what I understand from these articles

the general population in Kansas was 'rung up' and asked 'how they were'

and from that they extrapolated people who had ME. Seems a bit weird.

It specifically says that they didn't look at patients who were already

diagnosed and in clinics. So does that mean there were a whole load of

individuals with ME hanging around in Witchita or wherever, never having

been to a doc/diagnosed/or complained about feeling dreadful and just

waiting for the day the CDC would ring them up and ask how they were?

And all the preliminaries carried out by 'phone too? Is this usual

practise for good science? Btw the last question is not rhetorical -

can someone actually tell me if this is good practise?

Rosie

Sorry to be such a killjoy, but the LA Times article has another red

flag for me.

Only 16% of the people with CFS had been diagnosed.

I know that I was so sick when I first came down with ME/CFIDS that I

could not have gone on with my life until someone contacted me at

random and informed me that I had CFS.

It did take several months for me to get the diagnosis of ME/CFIDS

(in 1991) but I went to a number of doctors during that period and

could not believe my ears when they told me they couldn't find

anything wrong with me after I explained to them how sick I was. I

looked sick too. I was waking up constantly through the night and

dragging my half dead body around during the day.

I have my doubts that the CFS patients in this study have the same

illness that I have.

Tom

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

April 22, 2006

I think this is really valid concern - its something that really worries me.

Like Tom and I'm sure most of the people on this list, as soon as I got sick I

immediately went to a doctor. OF course some we know went to the wrong doctior

or doctors, money ran out - whatever and that was their problem. THis may not

have been the wealthiest population either - not the yuppies. The big question I

have is how many never saw a doctor? In this day and age and particularly in

the US you would have thought a much more sizeable number would have been

diagnosed with CFS.

To really scare you - reported that Nisenbaum's similar type of

community study found that about 70% of the patients recruited this way no

longer met the CDC criteria for CFS after three years. THat doesnt sound like

the CFS we know. Also most (77%) had a gradual onset,. In a study he did

also found mnore gradual onset; and 65% had seen a physician and only 9% had

been diagnosed.

It sounds like a differnet set; , however, suggested that that the

ethnic minorities in his sample might be more functionally impaired than the

white Caucasians normally diagnosed with CFS. I think the WIchita survey is

mostly white (?). THeres obviously different readings of this.

It may be that the CDC is picking up milder cases of CFS?

It is a big question - a huge question mark hanging over these studies - I

think anyway. It would be great to have 's take on them.

Rosie <rosiecox@...> wrote: