Controversial Chronic Fatigue Syndrome Definition Examined

I would add to that that there is also a new study developed in UK, where it is shown that CFS responds a mitochondrial failure, and this is likely to be used as a diagnostic tool as well as for treatments to support mitochondria in CFS patients. This study also states that with the new findings, it is already demonstrated that CFS has nothing to do with psychological causes, neither major depression, therefore, this study could already refuse the conclusions of the one you mention in a way… I leave the link of the study:
http://www.ijcem.com/files/IJCEM812001.pdf

It’s a fascinating study, isn’t it? There’s also more on it here:

Possible Diagnostic Test for Chronic Fatigue Syndrome

The Canadian defn is really an international defn as the doctors involved include Kenny L. De Meirleir(Belgium) and from the USA Drs. Daniel L. Peterson, Nancy G. Klimas and A. Martin Lerner. Why doesn’t the IACFS(International Association for CFS/ME) take this over and set one as THE defn and commit to a review committee to enhance it as new info becomes known and scrap all the other multiple versions.

The Canadian definition is more based on science, so I agree that it is a good start.

Most other definitions are based on politics: namely, the politics of denigrating a diseases that is inconvenient to certain organizations.

If multiple sclerosis were treated as m.e. is treated, there would be public outrage on a massive scale.

Houses of cards do not stand forever. The anti-MS one (”hysterical paralysis”) fell. The anti-m.e. one will also fall.

Actually the full history would be as follows:

In 1988 the Holmes criteria was developed which included what were termed by nay sayers as “minor” physical criteria and when portrayed in that light supposedly “minor” signs such as swollen lymph nodes which are indicative of viral infection were marginalized and then eliminated.

Then in 1991, a “study” financed by British psychiatrist and George Engel disciple Peter White and known as the Oxford criteria was redefined in order to reflect the psychosocial contention (psychosomatic medicine)that so-called “chronic fatigue” was psychosomatic in nature. For example, one key element was the addition of the criteria that patients were also “mentally” tired which then allowed patients to be defined primarily by “depressive” psychiatric symptoms. UK researchers continued to use the Oxford definition for years in order to generate what many who support the biomedical model of research, and even some biopsychosocial supporters, would consider misleading and even unethical research.

It should be noted that this was done in direct defiance of the WHO mandate the UK was legally required to follow which classified ME/CFS is a non-psychogenic brain disease and only a non-psychogenic brain disease. Because the 1991 Oxford criteria selected a different group of study participants it cannot be extrapolated to patients defined under the then internationally accepted framework of the also flawed Fukada research definition. It should also be noted that many of the same British psychosomatic medicine researchers who developed the Oxford criteria also sat on the CDC Fukada committee and were instrumental in having the physical requirements of the Holmes criteria deleted.

It should be no surprise that the CDC 2005 definition developed by the CDC is skewed toward the psychiatric, as some of the participants taught, and may still teach, at Emory University in the psychiatric department.

As for the Canadian definition it was developed for diagnosis only – not research. The reason is scientific, and no not just the psychiatric version of scientific. As noted regarding the Oxford criteria, in order to compare and replicate study results scientists have to compare apples to apples. Although many ME/CFS patients have signs and symptoms in common this varies by intensity as well as by whether or not the ME/CFS patient has co-morbid disorders. Scientifically speaking we are a disorderly bunch.

Unfortunately the usual solution is to pare down the criteria by which researchers define their study population so that the research results can be duplicated by anyone following the exact same protocol.

This is in some ways actually a good thing. It adds credibility to the research when results are consistent across multiple studies which translates into a somewhat broader acceptance in the medical community.

The down side is as noted above – that it may delete key elements or water the research definition down into nothingness.

One method researchers for both fibromyalgia and ME/CFS such as Lenny Jason and Daniel Clauw have suggested in the scientific literature – addressing just this problem – is to break patients down into subgroups by say prevalence of certain groups of symptoms and/or severity so that they can be studied separately in smaller more homogeneous (alike)groups.

Accurate or not, fair or not this method would also allow researchers to separate patients who have extensive psychosocial issues resulting from from dealing with these diseases from patients who do not have such issues. This is yet another way rule out psychosomatic medicine claims that depression and/or other “psychsocial” issues play a significant role in these diseases thus distorting the clinical picture.

Hope this helps clarify the issue some.

I definitely agree that subgrouping is part of the solution. There’s more on ME/CFS subgrouping here:

The 7 Genomic Subtypes of Chronic Fatigue Syndrome

I think it’s the psychiatrist’s that consistently thwart any real progress in this disease. They just don’t want to give up ownership of it and will continue to have study after skewed study that support it’s “all in the head” theories.

If they could only spend a decade with an illness that is as debilitating as CFS and have to watch from the sidelines as a group of people continue to garble up statistics and studies to back-up their “theories”. It’s just inhumane!

I also can see how there can be an “overlap” as living with this disability is no walk in the park and one certainly could be prone to “depression”.

I personally hate to use the word and refuse to use it in my diagnosis. I tell the medical community when it comes up that “am I depressed” no but am I happy – certainly not! Who could be?

Our outbreak started as a strange rumor out of Truckee, about a
horrible “flu” that just seemed to take hold in some people, and go
on without stopping.
There seemed to be a “cut off” point.
If people recovered within two weeks, they seemed to have beaten it.
But if this “weird flu” went on for longer, for three weeks or more,
the illness seemed to actually get worse.
We had never heard of anything like this.
That’s not how any normal flu acts.
It scared us all to death.

Word went out that if the illness went on for three weeks or more,
it was time to see a doctor, for you might be one of the people that
were going to get worse.

When the “flu like illness” went on for a month, all doubt was gone.
It “had” you, and there was no escape.

I didn’t have any reason to think that this illness would single me
out. Quite the opposite. I thought that if anyone would beat it, my
chances were better than most. I was an athlete, no drugs, no smoke,
young, in excellent shape.

Later, in support groups, we looked around at each other, and
wondered “Where are all the drug addicts, alcoholics, immune
suppressed people that should be here, if “weakness” is what left us
open to this illness?”

Such people simply were not there.
“Normal” appeared to be a risk factor for not recovering.
It seemed as if having the kind of “dissipated lifestyle” that the
doctors kept accusing us of was actually something that prevented
people from becoming chronically ill.

It didn’t do any good to keep telling the doctors that their
theories didn’t fit the facts.

All they did was leap to the amazing conclusion that since the drug
abusing, alcohol drenched flotsam and jetsam of self induced human
wreckage were already somewhat perpetually ill, that they wouldn’t be
able to tell the difference between their normal depraved state and
this illness, so it was only the “obsessive complainers with money”
who were overly focused on exaggerating our complaints and kept “doctor
seeking” until doctors “validate the need for attention by giving the
illness a name”: The “type A’s” “The Yuppies” “The wealthy whiners”.

It took doctors less than thirty seconds to fixate their minds upon
the excuses they planned to use.
And nearly thirty years later, these same concepts are still firmly
lodged within the brains of doctors.

Dr Cheney and Dr Peterson were the only ones who believed us.
Dr Peterson called the CDC, which brought Kaplan and Holmes out to investigate.
The rest is just as Dr Hyde describes.

If anyone wants to know specifically what that illness was like, which was named “Chronic Fatigue Syndrome”, it’s easy to find out the truth.
Just read Osler’s Web, or simply ask us.
We’re still here.
-Erik Johnson
Incline Village “Tahoe Flu” survivor

http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
A Brief History of Myalgic Encephalomyelitis and an Irreverent
History of Chronic Fatigue Syndrome

As presented at the London Conference of May 12, 2006 by Byron Hyde
MD:

(snip)
Many of the M.E. epidemics started out among children or students.
This occurred in the 1936 Fond du Lac epidemic, the 1946 to 1949
Akureyri epidemics, the 1950 St Joseph Infirmary epidemic, the 1952
Middlesex epidemic, the 1955 Cumbria Street Children’s Hospital. It
was not then surprising, that the Incline Village epidemic should also
start among students.

The Lake Tahoe Epidemic

The Lake Tahoe epidemic that started in August 1984 also started
among students. In this case the epidemic began in a high school
girls basketball team that was travelling in a bus to play various
other teams. The epidemic spread rapidly with an incubation period
of approximately a week. As in many of the other epidemics, it then
spread to the general community. After the epidemic started it then
involved three high schools, both students and teachers and
ultimately spread to the community. For some reason it was
considered to be an epidemic of infectious mononucleosis. This is an
illness caused by a virus Epstein Barr Syndrome. Associating the
Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous
and you will see why almost immediately.

Dr Paul Cheney and Dr Daniel Peterson were inundated by the number of
rapidly developing cases of seriously ill patients and called for the
Centre for Disease Control (CDC) in Atlanta for back up. Initially
CDC did not appear to (be) very interested. Members of Congress were
then called and CDC jumped to investigate. According to one of the
principals who related the story to me, a crew headed by Dr Gary
Holmes from CDC came out ot Incline Village from Atlanta, drew blood
samples from the ill patients and spent much of the short remaining
time in Lake Tahoe playing golf. It is possible that the CDC crew
would have done a much more thorough investigation but they did not
and this may have been due to the political forces that gathered
steam.

Business Comes First

Reputedly, members of the business community whose commercial
interests depended upon tourist trade and the seasonal ski business
did not want news hitting television and other media that there was a
devastating infectious disease running around Lake Tahoe. It would
have cost the business community millions of dollars. Accordingly, I
was told that pressure was then placed upon the congressmen to stop
CDC from investigating this epidemic further or they would lose their
jobs. And apparently, so it came to pass. There was little further
investigation except for the sustained efforts of Dr Paul Cheney and
Dr Daniel Peterson. Reputedly, increasing negative pressure and
threats were placed upon both of these physicians, sufficiently so
that Dr Cheney eventually moved his family to South Carolina.

First International Symposium on Immunology and Pathogenesis of
Persistent Virus Infections.

Fast-forward to April 1987 and the First International Symposium on
Immunology of Persistent Virus Infections held in Atlanta Georgia.
This was a symposium hosted by the CDC and Dr Carlos Lopez. At this
meeting Dr Gary Holms gave out his new paper, “A cluster of patients
with a chronic mononucleosis like syndrome,” that had just been
published in JAMA. (See Holmes, Kaplan, Stewart et al: JAMA 1987:
287:2297-2302)

The publication essentially stated that Epstein Barr Virus was not
the apparent cause of this illness in the 130 patients from which
they took blood samples. But they weren’t sure and suggested that
further study be done. Stephen Straus who was apparently the NIH
chief behind the Lake Tahoe investigation was sitting beside me at
this symposium. When Dr Holmes gave both Dr Straus and myself the
paper, Dr Straus in a monolog to him reacted very negatively, stating
that the patients had tricked him. I was amazed.

Epstein Barr Virus (EBV)

Now, anyone who realizes that infectious mononucleosis is caused by
the herpes family virus, Epstein Barr Virus (EBV), and that the
incubation period of this illness is approximately 40 days, should
have realized that you simply cannot have a rapidly spreading viral
epidemic with a virus with a latent period of 40 days.

Neither Dr Straus nor Dr Holmes, senior government physicians, should
have fallen into such a trap. They only had to go to the excellent
CDC library to realize that rather than spending half a million
dollars or so on a publication that they should have known would not
have incriminated EBV.

Yet this epidemic and this Holmes paper somehow spread the myth that
this illness was caused by EBV. today, as I write this short history
of M.E. and CFS the vast majority of physicians and the public, at
least those physicians and public who don’t associate these
illnesses with McEvedy’s hysteria, still associate Epstein Barr Virus
with CFS.
Such is the perseverence of error.

Human Herpes Virus (HHV6)

This virus was not associated with CFS until after the 1990 period.
HHV6 is the virus that causes the benign childhood illness, Roseola.
By 1986 HHV6 was already known to have an incubation period of 9 days
due to human experimentation when the actual virus was injected into
several children. See (Gorbac, Second Edition, Infectious Diseases,
page 1335).
When acquired by random infection, the incubation period of HHV6
Roseola was more like 12 days. So once again anyone with access to a
library or a computer would have soon dispelled any view that HHV6
was a cause of M.E./ CFS epidemics where the incubation was
approximately seven days or less.

Is it possible that Steven Straus and the other intelligentsia of the
National Institute of Health (NIH) in Bethesda and CDC in Atlanta and
elsewhere didn’t have access to libraries and the Internet? Maybe we
should start a public request to ask for donations for them.

This is not the whole story of course. Individuals at NIH, who
solated the HHV6 virus, apparently stole the science for identifying
this virus and set up a private laboratory and apparently patented
this technology. It is they that published the false news that this
was the cause of CFS. Over the short period of little more than a
year, the principals of this lab apparently brought in several
million dollars from the gullible genral public. Then the feds
struck and one of the previous NIH scientists who were running the
lab was sentenced to a year in prison. This was subsequently
suspended for a year of scientific public service for free. It is my
understanding that the other NIH official was not charged, being much
too eminent, and was simply kicked upstairs. So now, at least until
the equally ridiculous Lyme disease boondoggle came along in 2005,
the non-literate American physicians and the gullible public had a
choice of hysteria, psychiatric or social abnormality, EBV or HHV6.

What did we know about M.E. in 1984 after the Lake Tahoe epidemic.

The CDC investigators and the physicians of Lake Tahoe were dealing
with a fast spreading infectious disease of a short one week or less
incubation period. Obviously this was consistent with the epidemics
of Myalgic Encephalomyelitis already documented in this brief history.

Like the several epidemics noted that started with children or
students, so this this.

Like the patients in all of the epidemics discussed, the effects of
the infection involved the Central Nervous System but unlike a stroke
caused by an embolism, or malignancy, or arterial obstruction, the
CNS involvement that occurred in these patients were not focal but
consistent with a diffuse CNS injury.

In the Lake Tahoe epidemic as in the previous epidemics described,
the type of Central Nervous System involvement was obviously of a
more diffuse nature and the type of peripheral involvement that
caused so many troubling symptoms in all these epidemics was
consistent with a very low grade vasculitis (See Mercy San Juan
Hospital Epidemic) or in many cases a classical radiculopathy (spinal
nerve root involvement) or even a very low grade Guillain-Barre’
Syndrome as was described by Alberto Marinacci when he examined the
Los Angeles County Hospital patients (See Dr Marinacci’s book Applied
Electromyography. Lea & Febiger, 1968: Chapter 9). However, I should
note that the mere mention of Guillain-Barre’ Syndrome drives many
neurologists crazy. They say that GB is a severe disease that if not
treated effectively may kill or leave the patient permanently
disabled. However, all real diseases have a wide variety of
penetration from so mild that they may be missed to, in some
diseases, having potentially mortal consequences.

If we consider the Lake Tahoe epidemic alone we have the primary
definitional determinant of Myalgic Encephalomyelitis.

The Lake Tahoe Epidemic represented an illness

a. With an acute onset.
b. With an incubation period of 4-7 days,
c. Occurring in both students and adults,
d. Involving the central nervous system in a diffuse, non focal
manner,
e. The onset of a Raynaud’s disease along with a peripheral coldness,
blanching and pain syndrome of fingers, hands and feet or
significant
postural hypotension or instability. A non-tramatic, acute onset
of these
two syndromes is consistent with an injury or a significant
diffuse change
in the autonomic physiology of the subcortical brain.
f. Rapidly developing flaccid muscle weakness with minimal effort or
activity, (The Lake Tahoe epidemic was initially called Raggedy
Anne
Syndrome due to this finding.)
g. There were two illnesses, an acute viral like illness and a
secondary
persisting illness that in the more severe cases left permanent
persisting
sequelae.
h. With peripheral pain symptoms that have variable features
resembling in
some cases, a radiculopathy,, in some cases a vasculitis, and
even a
very low grade Guillain-Barre’.

Although the final terminology of conclusion “h” is subject to
debate, are features “a to g” a very difficult set of conclusions to
come to? I don’t think so. There is a consistent similarity of the
Lake Tahoe epidemic patients to all of the previous epidemics
mentioned in this short history and the many others that are
documented in our textbook. The Clinical and Scientific Basis of
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.

Yet retain these above Lake Tahoe Features in mind when we come to
the first CDC definition that was largely based upon this very same
Lake Tahoe epidemic ilness.

1987: The first CDC definitional meeting

I have mentioned the April 1987, First International Symposium on
Immunology and Pathogenesis of Persistent Virus Infections held in
Atlanta Georgia hosted by the CDC and Dr Carlos Lopez. At the
termination of this meeting to discuss the creation of a definition
for this 1984 Lake Tahoe Raggedy Anne Illness that had appeared
sporadically and in clusters in many areas of the United States and
Canada.

Approximately 25 people showed up for the meeting. Included in the
25 physicians and scientists were Dr Alexis Shelokov, Dr J Gordon
Parish and myself. Other than Dr Gary Holmes and Dr Stephen Straus,
at that time I was not aware of whom the other people present may
have been. Of Shelekov, Parish and myself, I was clearly the least
knowledeable of the three having seen by then some hundred or so
patients with M.E. and read extensively the existing literature.
However my knowledge at that time could not be compared to these two
published giants.

It was obvious that most of the assembly associated this epidemic
disease with Epstein Barr Virus and infectious Mononucleosis, what
the British refer to as glandular fever. It was immediately apparent
that the concensus was going to be highjacked by this majority. Dr
Shelokov and Dr Parish decided that this meeting was going nowhere
and so decided to leave before it terminated. I followed them
knowing full well that if I was going to learn anything credible
about this disease process then I had to understand their incredible
knowledge bse that had been developed for over 20 years.

It was a wise choice for me in terms of acquiring knowledge but it
was a bad choice in that had we stayed, we might have influenced the
decision that was to appear in 1988.

The 1988 CDC definition did several things, all of which caused
immeasurable confusion.

Why did the 1988 CDC definition damage our knowledge and
understanding of the epidemic and endemic disease? Remember that in
describing the Lake Tahoe epidemic this committee were describing a
typical Myalgic Encephalomyelitis Epidemic.

Major Problems of the 1988 CDC definition

It is my opinion that the CDC 1988 definition of CFS describes a non-
existing chimera based upon inexperience individuals who lack any
historical knowledge this disease process. The CDC definition is not
a disease process. It is (a) partial mix of infectious
mononucleosis / glandular fever, (b) a mix of some of the least
important aspects of M.E. and (c) what amounts to a possibly
unintended psychiatric slant to an epidemic and endemic disease
process of major importance.

For ME, G93.3 patients (coded under 323.9 in the USA because the ICD9 Codes are still used), it remains very disconcerting and troubling to see the emergence and advancement of the
2003 ME/CFS Canadian Criteria, which represents an illogical ‘blend’ of both ME (G93.3) and CFS (R53.82).

- It is this ‘blending’ and ‘lumping together’ of two disparate things that CFS patients like, because it makes their ’syndrome’ (i.e., a group of symptoms) based on ‘fatigue’ sound more serious.

- It is this ‘blending’ and ‘lumping together’ of two disparate things that infuriates those of us who are ME-defined, because it waters down and weakens our severely debilitating CNS (Central Nervous System) illness!!!

Additionally, one would have to know the complete history of the past 20+ years to fully understand what’s all taken place. Basically, two entities, the USA CDC and the UK Wessely School (WS) have collaborated and done their utmost to turn CFS (or ‘CFS/ME’ in the UK) into a ‘psych’ thing, and to help insurance companies deny claims. They have been well-compensated for their actions which saved the insurance ocmpanies many millions of dollars.

Then, in the early 1990s (1992?, the facts remain difficult to uncover fully) the British CMO apparently in conjunction with a WHO official somehow managed to get ‘post viral CFS’ added to G93.3. Now, this does NOT mean that ALL CFS patients were added – just the very, very few who became ill post-virally!!!

But sadly, since then the UK contingent has adopted the term ‘ME/CFS’ and they cling tightly to it. Even tho it’s clearly a misnomer. Even tho that action was a mistake that needs to be UNDONE ASAP, as it it not based on any science, PLUS ‘G’ classifications cannot be mixed with ‘R’s’ (G93.3 vs R53.82) AND a syndrome, illness or disease (these are all different things in the WHO vernacular!)cannot be listed in two places.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

TAKEN DIRECTLY FROM THE WHO CLASSIFICATIONS (ICD10):

G93 Other Disorders of the Brain
G93.3 postviral fatigue syndrome (pvfs)
benign ME
–>EXCLUDED: CFS (nos) (R53.82)

NOTE: This is the USA CDC’s ‘CFS’ (Fukuda, et al) but does not refer to Reeve’s newest, his ‘empirical’ criteria. LKW

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

R00-R99 Symptoms, Signs and Abnormal Clinical and Lab findings, not elsewhere classified

R53 Malaise and Fatigue

R53.82 (pg 1324) Ch 18 – CFS (nos)
–>EXCLUDES: postviral fatigue syndrome, benign ME (G93.3)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And since 2005 now, with the USA CDC’s Reeve’s ‘empirical definition’ for CFS, they are pushing hard to both expand the numbers (more funding!) AND to get it classified under ‘mental’.

So desperate CFS patients–who are often MISdiagnosed and actually prove to have a myriad of OTHER THINGS wrong with them, many of which are treatable, like Lyme, thyroid, or ‘fatigue’ for a variety of reasons–have tried to make their illness sound more serious in an attempt to override Reeves and the WS’s attempts.

One of the ways they’ve done this is to latch onto ME. G93.3, and now start saying that ME and CFS belong together and are actually the same thing.

- They most certainly are not!

- ME, G93.3, is classified under Brain, CNS, Neurology…. It starts with a sudden onset viral event….

- CFS, R53.82, is classified under vector-borne, zoonotic, along with things like Lyme and Rocky Mt Spotted Fever, etc. It has always been and remains a DIAGNOSIS OF EXCLUSION only able to made after 6 months, AND only after everything else has been eliminated as a possibility.

- Furthermore, G’s in the WHO vernacular, do not get mixed with R’s…(different bodily systems!)

So it’s become a humungous MESS, made easier with the internet now, where large numbers of people can read all sorts of stuff and believe it’s the gospel truth, rather than question or verify it:(

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It also explains so well why all of the small, uncoordinated studies done to-date continue to get confusing readings and are unable to replicate study results (and therefore bring about no progress):

–>studies done on ‘mixed patient groups’ always produce MIXED DATA, which is irrelevant and helps NO ONE.

The only way to get pure research data is to separate out the ME, G93.3, patients from this blended ‘ME/CFS’ grouping, and study them separately.

Then feel free to compare the ME data with the CFS data. No doubt there will be interesting and critically important DIFFERENCES!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It is beyond time for the world to take ME, G93.3, seriously and stop subsuming it with, or under, ‘CFS’. This is both absurd and completely UNscientific.

Again, ME has been formally acknowledged by the WHO since 1969!!!

CFS was first made-up/written by USA CDC staff b/n 1988-1994.

~

ME is a CNS disease with a sudden onset viral event triggering it (3-7 days)…..

CFS is a slow onset ‘fatigue’ only able to be diagnosed after 6 months….

They START, PRESENT and END differently!!!

~

Lastly: ‘CFS/ME’ and ‘ME/CFS’ have no WHO classifications nor any ICD Codes assigned. They exist only in the minds of those who promote them. These (often self-proclaimed)
‘experts’ clearly do not know ME. If they did, they’d realize how absurd their ill-conceived blendings are….

Those presently diagnosed with ‘CFS’ need to be better evaluated rigorously by qualified medical personnel to determine precisely what it is that they have. The list of things they actually have is already quite long, and continues to grow:

http://www.ahummingbirdsguide.com/PDF/Where_to_after_a_CFS_misdiagnosis.pdf

To read everything that ‘CFS’ is–and ISN’T–(because every single criteria version is very broad and very brief) as determined by the originators/authors (1988-1994):

http://www.cdc.gov/cfs/

~

Hyde on the incubation periods:

“By 1986 HHV6 was already known to have an incubation period of 9 days due to human experimentation when the actual virus was injected into several children. See (Gorbac, Second Edition, Infectious Diseases, page 1335). When acquired by random infection, the incubation period of HHV6 Roseola was more like 12 days. So once again anyone with access to a library or a computer would have soon dispelled any view that HHV6 was a cause of M.E. epidemics where the incubation was approximately 7 days or less. Is it possible that Steven Strauss and the other intelligentsia of the National Institute of Health (NIH) in Bethesda and CDC in Atlanta and elsewhere didn’t have access to libraries and the Internet? Maybe we should start a public request to ask for donations for them.” – Dr Hyde M.D.

~

“Associating the Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous and you will see why almost immediately. Anyone who realizes that infectious mononucleosis is caused by the herpes family virus, Epstein Barr Virus (EBV), and that the incubation period of this illness is approximately 40 days, should have realized that you simply cannot have a rapidly spreading viral epidemic with a virus with a latent period of 40 days. Neither Dr Straus nor Dr Holmes, senior government physicians, should have fallen into such a trap. They only had to go to the excellent CDC library to realize that rather than spending half a million dollars or so on a publication that they should have known would not have incriminated EBV. Yet this epidemic somehow spread the myth that this illness was caused by EBV. Such is the perseverance of error.” – Dr Hyde M.D.

~

And this is how ME, G93.3,(not CFS) starts:

“[The] prodromal phase is associated with a short onset or triggering illness.

This onset illness usually takes the form of either, or any combination, of the following

(a) an upper respiratory illness,
(b) a gastrointestinal upset,
(c) vertigo and
(d) a moderate to severe meningitic type
headache.

The usual incubation period of the triggering illness is 4-7 days.

The second and third phases of the illness are usually always different in nature from the onset illness and usually become apparent within 1-4 weeks after the onset of the infectious triggering illness

(1998 [Online]).”

~

I hope this helps all of you understand the differences better now, so you can stand firm and demand correct and proper illness diagnosis for al patients.

And strict large-scale, well-coordinated scientific studies done on each patient group separately. This is the only way we’ll ever derive ~pure data~ that helps unravel the etiology and pathphysiology.

~

What Chronic Fatigue Syndrome is DOES NOT depend on who you ask. CFS just is. It doesn’t change or mutate depending on the understanding or misunderstanding of the various opinionated doctors and researchers who want to define it. When they finally learn that, perhaps there’ll be some progress in treating it.

Until then, articles phrased like this one only confound the issue. We didn’t make this disease up as a game for the researchers to play one-upmanship with. Through no fault of our own, we SUFFER from this disease. While the doctors and researchers are all vying on which definition will bring them the most prestige and research dollars, and the pharmaceutical companies are vying for the privilege of filling their wallets by selling us expensive medications which do nothing for our CFS but in general makes out lives more miserable, we continue to suffer from the disease and from the varying viewpoints promulgated by these doctors and researchers and pharmaceutical companies of the moment. I, for one, am complete tired of it. I will no longer take the cure of the moment. I am reduced to being my own physician. Once a year I visit a GP who believes that I know more about my body and its reactions than all those quarrelling experts. I get my PAP test, my mammogram, my yearly blood work, and I get a year’s worth of scripts of whatever I need (which isn’t much because there isn’t much that does anything for CFS), and that is the end of it. I have lost all respect for ‘expert’ doctors and researchers.

Oh! That made me feel better!! :>)

LK Woodruff.

Do you NOT understand that “CFS” was the name given to the illness Dr Hyde identified as “ME”?:

“Yet retain these above Lake Tahoe Features in mind when we come to
the first CDC definition that was largely based upon this very same
Lake Tahoe epidemic illness.”
-Byron Hyde M.D.

This means that “CFS” was describing ME, unless you are claiming that Dr Hyde, Dr Shelokov, and Dr Parish were wrong, and the other Holmes committee members who “hijacked” the illness were accurately claiming that CFS was some different illness.

Do you believe that Dr Hyde was wrong,
and Stephen Straus was correct?

-Erik Johnson

The British psychiatrists who created a different definition for “CFS” than the CDC’s Holmes and Fukuda definitions relyd heavily on a diagnosis of “neurasthenia” – what they used to call “the vapors” or “a nervous condition” a century ago. Neurasthenia was almost always diagnosed in women – and these psychiatrisis believe this is almost entirely a disease of women (despite good demographic studies in the US that showed it was only 60-70% female).

There are two serious problems with this. First, World Health Organisation (WHO)’s International Classification of Diseases (ICD) has placed M.E. in the catoegory “neurological conditions” (like MS) since the 1960s. In the latest version, ICD-10 (which has been adopted by almost all nations except the US) includes “CFS” with M.E. as a neurological condition. Simon Wessely, the leader of the psycho-social school on Britain, coded the condition as “neurasthenia” under psychological conditions in the offiicial British psychiatric handbook, but was ordered by Parliament to send out errata notices putting it back in the neurological condition because he had violated the rules for nations that belong to WHO.

CFS was not in ICD-9, because the name was created just before ICD-10 was released. While the US continues to use ICD-9, CDC can use whatever code it wants, and it places CFS in the category of “makaise and fatigue.”

The Reeves questionnaires (which is more accurate than calling it the “empirical definition” because it wasn’t as empirical as the Canadian definition) were based upon British psychiatrist Simon Wesslely’s questionnaires for CFS-neurasthenia, so it is not much of a coincidence that it tends to misdianose depressed patients as having CFS.

But there’s one more aspect to this story – and that’s the second major problem with Reeve’s questionnaires.

American psychiatrists do not recognize a diagnosis of “neurasthenia” (or “hysteria,” something else British psychiatrisis have used for CFS). You will not find either term in DSM-IV.

So Reeves’ questionnaires not only depend on a psychiatric diagnosis, but also a diagnosis that is not considered legitimate in the U.S.

When a large number of cluster outbreaks occurred in the US in the mid-1980s, experts in Myalgic Encephalomyelitis (M.E.) and its American counterpart, Epidemic Neurasthenia, informed CDC that the outbreaks fit the definition for those illnesses. The CDC ignored them, and first called the outbreaks Chronic Epstein-Barr – but then they backed off, gave it a name that they thought meant chronic mono syndrome – but replaced “mono” with “fatigue – and did not even include a footnote about M.E. or E.N. (EN has not been diagnosed anywhere since 1979, so that leaves M.E. As the only name, and only disease concept, dating back to the 1950s.). However, the late Stphen Straus, who made it clear in the meeting that the US wanted CFS, simultaneously published an essay on “CFS” as being the same thing as atypical polio (first diagnosed in 1934) and M.E. – AND neurasthenia.

How curious for there to be no mention of an alternate theory as to what this disease was in the Holmes article that introduced “CFS” and gave it the CDC’s approval in 1998, when Stephen Straus, Holmes’ counterpart at NIH published an article at the same time saying they were all the same thing.

The Straus article enabled the British psychiatrists to insist that “M.E.” was really “CFS” and that “CFS” was really “neurasthenia.”

The British definition enabled Straus at NIH to promote a conception of CFS dpendent upon a psychiatric definition that is not considered legitimate by US psychiatrists, and now has enabled the CDC’s William Reeves to create a set of questionnaires for diagnosing CFS that includes a lot of people who have mood disorders, and excludes the sickest of the ME/CFS patients because we have too many physical symptoms.

Ironically, CDC has not adopted Reeves’ so-called “empirical” definition as a replacement for the Fukuda (1994) definition – so technically CDC is still using Fukuda.

But the Reeves questionnaires do not diagnose CFS-Fukuda. They diagnose Wessley’s CFS-neurasthenia.

It is hard to see who would benefit from such obfuscation except insurance companies, those who wish to deny Social Security Disability Insurance to patients with “CFS”, and the makers of SSRI’s such as Prozac.

I have several biological and objective markers, from.the inability to pass a simple Romberg test, a score of 16 on the VO2 MAX stress test (an 80-year-old woman should score 20), and an abnormal SPECT scan. I also have the 37 kDa Rnase-L defect, low natural killer cell function, reacticated EBV, active HHV-6 (Variant A) and cytomegalovirus.

But if I only took the blood tests the CDC recommends for “CFS”, there would appear to be nothing wrong with me, because I am normal on THOSE markers.

The CDC is studying and promoting a different disease that the one I have – and that caused the cluster outbreak that prompted the meeting naming the disease “CFS” two decades ago.

How long is the federal government going to permit this sleight of hand to continue? The Canadian international definition for ME/CFS already exists, based on peer-reviewed research and the experience of clinical specialists, and it offers objective tests and treatments. Even the CDC admits no more than 15% of those who suffer from this serioud illness have any diagnosis at all. It is past time for this psychological tomfoolery to end.

Thank you for opening this up to the light of public scrutiny.

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: Michelle Akers played 90 minutes in blistering heat, until her body
gave out.

SPORTS ANNOUNCER: All eyes are on Michelle 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 Peterson 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 Mary
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. Peterson 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. William 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. Michelle 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. William 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. Jeffrey 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: Mary Nelson (ph) and Martha Williams (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: Mary 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, Peterson 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.

End Interview
—————————-

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. William 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.
—————————————

Dr Reeves and the CDC must have known about the abnormalities which disproved CEBV Syndrome, for this is the very reason why the name had to be changed AWAY from implicating EBV.
Can Dr Reeves statement about what the epidemiologists found, be completely forthright?

Is “Whistleblowing” truly an act of altruism, considering that the diversion had already been discovered and was about to be exposed anyway?
If it was this “brave act” on behalf of CFSers which elevated Dr Reeves to being placed in charge of CFS programs, then how did research into these abnormalities manage to remain diverted all these years after Dr Reeves blew the whistle?

Doesn’t this place us in a bit of a quandary?
-Erik Johnson

Osler’s Web
Inside the Labrinth of The Chronic Fatigue
Syndrome Epidemic
by Hillary Johnson

p. 371

(About trying to get Ampligen approved for round 3 trials):

FDA headquarters was the site of the largest of the three
meetings. Twelve HEM executives and scientific consultants were present, as
were Peterson, Denver researcher James Jones, the University of Seattle’s
Dedra Buchwald, and a sizable contingent from the FDA. The session lasted
ninety tense minutes. “The room was packed,” Peterson recalled.

The doctor was attacked by FDA scientist Giovanna Tosato, who had
been an author on Straus’s 1985 paper about the disease in the Annals of
Internal Medicine. Tosato told Peterson he must use the CDC’s case
definition of the disease to select his patients. “You can’t say they have
this disease if they have all the other problems you’re describing,” she
said to the doctor. She was referring to abnormalities such as brain
lesions, reduced performance IQ, evidence for active human herpesvirus 6
infection, and sky-high levels of
interleukin-2.

“If you use the CDC definition,” Peterson retorted, his patience
at the breaking point, “then none of my patients could be included, because
all of them have something wrong with them!”