History of CFS

[Guest guest]

I'd like to make a few comments on " The History of CFS " as posted

below my message.

I figure that I am in a position to do so since I got to see

this " CFS " mess happen. Dr Ryll went through a few jaw-cracking

names like " epidemic Phlebodynia " and " Myalgic Encephalomyelitis "

but these names didn't catch the attention of the public, doctors,

or the CDC, who did not investigate Dr Rylls cluster.

http://www.med-help.net/ME-CFIDS.html

It was a different story in Incline Village. Not only was the

place a pristine tourist resort that could ill afford to be

associated with " Tahoe Mystery Illness " , but the disease was

denigrated as being " Yupple Flu " amongst those rich spoiled whiners

up in their quaint mountain villas.

The CDC was forced to respond - and they did! By labelling it " Mass

Hysteria " and abandoing us. These historical " rewrites " say little

about the CDC's incompetence and malfeasance. The CDC did nothing

but fight reality all the way. They increased our pain

significantly by saying that we weren't ill, because our families

believed that the great scientific minds of the CDC could not

possibly be wrong. So our " friends " and families abandoned us.

Doctors called us crazy but would diagnosis people with CFS anyway,

which meant they lost their insurance because, just as with the mold

epidemic - they were aware long before any other profession.

Dr Cheney and Dr were threatened. Our beloved community

tried to run us all out of town and even asked if we could be

arrested for " crimes against the community " and " criminal mischief "

for claiming to be ill since the " CDC proved that all of you are

just making this up - for some unknown agenda " .

Dr Cheney called me into his office one day and asked me to

volunteer to be in the study group to refine the parameters of the

new syndrome. He told me it was to be called " CFS " .

I thought this was a good step up from " Yuppie Flu " and " Mystery

Illness " , but I declined because I had already told him that I was

reacting to mold and thought this would mess up the " purity " of the

syndrome, as Dr Cheney and Dr had stated that " CFS is

probably viral " . Dr Cheney didn't seem to care if mold was knocking

me flat and told me how important it was to include me as a

volunteer since " You are EBV negative. We need your blood to

demonstrate that this illness is definitely not CEBV " , as some were

calling it at the time.

I didn't think that CFS was an accurate reflection of the syndrome

but Dr Cheney said that this name would be temporary. Surely the

efforts of the CDC would identify this illness quickly and then it

would have a proper name.

The History of CFS is that this did not happen.

The CDC fought us all the way, and still continue to do so.

So, yes, I was present at the beginning of " CFS " and those people

who had the illness earlier surely have the same illness, but they

didn't have that name.

And you should know that I have spoken with Dr Ryll, whose wife is

part of that 1975 cluster, and she has not recovered.

When I asked particulars about symptoms that reveal mold reactivity,

she was a classic case.

But like so many other doctors, Dr Ryll had no interest in talking

to an original Incline Village CFS survivor who is inexplicably out

climbing mountains.

-

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Historical Aspects of CFS

from cfids.org

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HISTORICAL ASPECTS

In 1975, the first reported epidemic of CFIDS occurred which

involved health care workers at the Mercy San Hospital in

Carmichael, CA. Most of those cases are still being treated by Dr.

h Ryll of Sacramento, CA.

In 1984, the second, third and fourth epidemics occurred in the same

year. The first epidemic occurred in teachers and students at

Truckee High School (near Incline Village, Nevada); the second at an

elementary school in Lyndonville, New York; and the third in New

Zealand. Three of the physicians who were involved in those

outbreaks are still very much involved with research and treatment

today (Dr's Dan and Cheney from NV and Dr. Bell

from NY). In the three USA epidemics, the CDC became involved in the

investigation. Blood studies were done on the victims. Cultures were

taken for all known viruses, bacteria, mycoplasmas and rickettsiae,

and all were reported to be negative. From the outset, the new

disease was discounted by the government agencies. Most of the

children from the NY outbreak were treated with antibiotics. It was

not prescribed for the new disease, but rather for infections that

occurred because of their deficient immune systems; (i.e., the usual

things that children experience—strep throat, ear infections, etc.—

occurred more frequently and with more serious complications).

Perhaps, as a result, a majority of the children in the NY outbreak

have recovered. Most of the adults from the NV and NZ outbreaks did

not receive antibiotic treatment as a routine, however, and most are

still very ill.

In 1985, the physicians in NV began to see a change in the antibody

response to the Epstein Barr Virus (EBV) in their patients. The test

(called a titer) indicated that they had a reactivation of an old

infection. At first, they thought they had found the cause of their

new disease and called it Chronic EBV. But, they witnessed the EBV

come and go, and the disease remains. It was soon evident that the

Epstein Barr infection was only one of many viruses and fungi that

would occur in their severely immune deficient patients.

In 1986, the National Cancer Institute of the NIH discovered a new

human virus that they first named HBLV, and then renamed HHV6 for

Human Herpes Virus number 6. Most recently, this virus has been

split into variant type A and B. There was another flurry of

activity and claims that this virus was the cause of our disease.

But, this has not proved to be the case, however, studies still

continue.

In 1988, the Center for Disease Control (CDC) convened a symposium

featuring many prominent researchers of this disease from across the

country. The name Chronic Fatigue Syndrome was officially coined and

criteria for diagnosis were formulated.