Re: /Amygdala / Incline Outcome

[Guest guest]

Come ,

I know you're referring to Incline. As if the

heterogeneous nature of CFS or ME for that matter, was

any less heterogeneous then.

But in this paragraph are quotes taken directly from a

paper assessing the prognosis of your beloved Incline

village compatriots.

A large 1993 follow up study found that most patients

got better over time; the researchers, in fact, stated

that ‘the overall prognosis of chronic fatigue

syndrome is usually favorable.’(!) and that ‘After 3

years of follow-up, almost all study subjects were

able to return to pre-illness activity’ (!). While

most apparently got well a subset of these patients

had " More-serious and longer-lasting neurologic

impairments, including seizures, psychosis, and

dementia " .

If you want to read more about what they thought about

the Incline Village outbreak - a very mixed bunch it

turns out - check out this paper.

http://phoenix-cfs.org/Original%20Sin%20Incline%20Village.htm

--- erikmoldwarrior <erikmoldwarrior@...>

wrote:

> Come now, Cort.

> Is it really fair to present your case and ask that

> it be the last

> word?

> Perhaps there ARE many kinds of " CFS " ... nowadays.

> But at one point, there was only one.

> Naturally, anyone who even remotely knows the

> history of CFS is

> fully aware of this.

> Don't you think it's a bit false to assert

> otherwise?; Knowing that

> all the latterday CFS variations were built, rightly

> or wrongly, on

> comparisons against that one illness?

> -

>

>

>> >

> >

> >

> > ---------------------------------

> > Be a better friend, newshound, and know-it-all

> with Mobile.

> Try it now.

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

________________________________________________________________________________\

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[Guest guest]

cort johnson <cortttt@...> wrote:

>

> Come ,

>

> I know you're referring to Incline. As if the

> heterogeneous nature of CFS or ME for that matter, was

> any less heterogeneous then.

>

> But in this paragraph are quotes taken directly from a

> paper assessing the prognosis of your beloved Incline

> village compatriots.

>

> If you want to read more about what they thought about

> the Incline Village outbreak - a very mixed bunch it

> turns out - check out this paper.

>

> http://phoenix-cfs.org/Original%20Sin%20Incline%20Village.htm

_____________________________________________________________

Cort, my " beloved Incline Village compatriots " , is it?

And you cite " directly taken from a paper " that you wrote yourself as

evidence to be used against me?

" A mixed bunch "

" This explodes the myth that all or even most CFS/ME patients

are ¡®disabled¡¯ "

" Both ME and CFS advocates claim Incline Village as their own "

" The CDC, of course, was on the scene early but they weren¡¯t the only

ones. A group of committed CFS researchers/physicians were there

also. This group came to this disease with open eyes and for several

of them it was a career changing event. "

For those who know what really happened, the slant and spin in your

words could make no clearer statement.

-

___________________________________________________________

ORIGINAL SIN: Incline Village, Chronic Fatigue Syndrome and Myalgic

Encephalomyelitis by Cort

Incline Village is ground zero for the modern era of CFS/ME. It is

where CFS/ME first (re)emerged in a big way and made it onto the

national scene. What a scene it was; we had a bucolic (upper class)

community in a resort town in the Sierra¡¯s beset by a bizarre

epidemic. We have the embattled good guys (our doctors) struggling

against their supposed allies (big, bad government bureaucracy ¨C the

CDC) and the rest of the medical establishment all the while

defending their scorned and disabled patients. What a stirring story

it was.

Incline Village is a place where, paradoxically, things went right in

a big way (CFS/ME finally gets attention) and wrong in a big way

(CFS/ME called ¡®yuppie disease¡¯.) Not so long after the Incline

Outbreak the name ¡®chronic fatigue syndrome¡¯ was coined and down the

slippery slope of ¡®fatigue¡¯ this disease slid.

Both ME and CFS advocates claim Incline Village as their own. Some

believe it was our first big chance ¨C perhaps our only chance - to

fix this disease in the research community¡¯s mind before it got

tainted by the fatigue label. The facts were all there they say! All

the powers that be had to do was open their eyes. Instead they turned

them away and we have suffered the consequences ever since.

The CDC, of course, was on the scene early but they weren¡¯t the only

ones. A group of committed CFS researchers/physicians were there

also. This group came to this disease with open eyes and for several

of them it was a career changing event. The pedigree of this group is

amazing; many (Cheney, , Ablashi, Komaroff, Bastien,

Buchwald) will go on to take central roles in CFS research or

treatment. Early on they were able to garner a series of large NIH

grants and over the next six or seven years they would come to

publish at least five studies examining the Incline Village (and

other cohorts).

We know the CDC found nothing interesting but did ¡®our side¡¯ say?

These researchers - so passionately struck by their patients

suffering - knew they were facing a real disease. What did they

report? What kinds of patients did they find? Were they CFS patients

or ME patients? Were their conclusions listened to or were they

dismissed? What kind of start did CFS research get off to? Twenty-two

years later we take a look at Incline Village and what it meant and

didn¡¯t mean for CFS/ME patients.

The Studies: These were not small efforts. Much of the information in

this paper will be taken from a major paper published in 1992

(Buchwald, Cheney, , Ablashi, Komaroff et. al. 1992). It was

one of the first major studies ever done on CFS/ME and it is still

one of the largest. It involved cerebrospinal fluid draws, MRI¡¯s, HHV-

6, HTLV and lymphocyte testing in at least a portion of over 200

patients.

Defining CFS: One of the first problems the investigators of the 1992

study faced was one researchers are still struggling with; how to

define an often debilitating disease that is marked, for the most

part, by rather common symptoms. As most definitions have done, these

researchers focused on the predominating symptom, fatigue. They

required each patient in the study to have at least three months of

chronic, debilitating fatigue with at least two of eight other

symptoms (fever, headache, sore throat, earache, rhinnorhea, cough,

diarrhea or muscle pain.

Aside from fatigue the symptom set was somewhat unusual; fever,

earache, post-nasal drip, cough and diarrhea will not appear in the

1994 definition or be prominent in others. Headache, sore throat and

muscle aches will. A perhaps special kind of fatigue ¨C post-

exertional fatigue ¨C that some researchers believe characterizes CFS

was not mentioned and had not yet been delineated. Neither cognitive

problems nor joint pains were part of the definition but both were

common (79-88/67-82%) in this group.

They noted that a ¡®few patients¡¯ (8%) developed ¡®transient periods¡¯

of an encephalitis-like symptoms including confusion, gait problems,

paralysis and seizures. These early symptoms are similar to some

described in early ME epidemics. Was this an ¡®ME¡¯ subset? Like ME

patients earlier studies described the most severe nervous system

problems (paralysis, seizure) were described as ¡®transient¡¯. As the

disease progressed these patients looked more and more like the other

patients and they were not segregated out again.

Acute (infectious) vs. Gradual Onset or Acute and Gradual Onset?

Debate persists in the CFS/ME community whether infectious onset

patients are fundamentally different from non-infectious onset

patients. While ME researchers do not require an infectious onset for

ME the presence or absence of an infectious onset is used by some to

differentiate ME from CFS patients; ME patients tend to have an

infectious onset while CFS patients do not. This has at times morphed

into the belief that ME patients have a real illness while CFS

patients have psychological problems.

These two groups of patients were also found in the Incline Village

studies. The acute onset epidemic type patients could not be

distinguished symptomatically or with regard to laboratory tests from

the gradual onset endemic type patients and they were lumped

together. Neither an acute onset nor the presence of flu-like

symptoms led to a more severe illness. In the end the investigators

believed it didn¡¯t matter whether the trigger was an infection or

some other event or nothing visible at all; the patients were

essentially, so far as they could tell, the same. They believed

a ¡®common pathogenetic pathway¡¯ was present in all of these patients.

THE PATIENT. As expected about 65% were women. Most were middle-aged

(average age of about 39). About 25% were either bed ridden or shut

in. Even in this severe outbreak, though, almost half the patients

(49%) were able, despite their fatigue, to fulfill ¡®all work or home

responsibilities¡¯ (but with nothing left over).

(This explodes the myth that all or even most CFS/ME patients

are ¡®disabled¡¯. While a significant number of CFS/ME are disabled

substantial numbers of CFS/ME patients are able to work. Rates of

employment in CFS studies have varied dramatically from study to

study (32% to 73%) with an average employment rate probably around

50%).

A large 1993 follow up study found that most patients got better over

time; the researchers, in fact, stated that ¡®the overall prognosis of

chronic fatigue syndrome is usually favorable.¡¯(!) and that ¡®After 3

years of follow-up, almost all study subjects were able to return to

pre-illness activity¡¯ (!). While most apparently got well a subset of

these patients had " More-serious and longer-lasting neurologic

impairments, including seizures, psychosis, and dementia " .

LABORATORY FINDINGS ¨C Were these CFS researchers findings taken

seriously? Were they on the right track? Let¡¯s find out.

MRI BRAIN SCANS. The MRI findings have been described as objective

evidence of central nervous system damage, something that only an

agency determined to subvert CFS patients could ignore. Indeed the

researchers ¡®frequently saw areas of abnormal signal intensity in the

white matter of the central nervous system " of CFS patients. The

meaning of those abnormal signal intensities were, however, unclear.

In a few patients they were able to correlate problems in, say,

vision with abnormalities in the visual cortex but in most they were

not. The fact that ¡®similar white matter changes were found in many

disease and conditions (multiple sclerosis, Alzheimer¡¯s, metastatic

disease, post- chemotherapy, trauma, viral infection, etc.)¡¯

suggested some pathology was at work but left the cause of it

unclear.

Problematically while significantly more CFS patients demonstrated

these abnormalities than the healthy controls a significant

percentage (20%) of the healthy controls had them as well. The

researchers noted that this was not unexpected

stating " such..areas..can also be seen in apparently health people of

all ages " .

A further problem involved linking these areas to the actual disease

since they occurred in different areas in different patients. While

they suggested that at least some patients were ¡®experiencing a

genuine but as yet undefined pathologic process " they concluded that

the significance of these ¡®incidental¡¯ areas ¡®is not known¡¯.

The significance of the MRI findings was muddied by a lower rate of

MRI abnormalities in the New England cohort of patients and by the

fact that they were not found in all the patients. Suggestions that

these abnormalities increased with age did not help clarify matters.

Finally, since the clinical significance of the tests was unclear

they did not recommend the routine use of MRI in CFS patients. It was

clear the authors thought they might be onto something but were

unsure what it was.

Medical Community¡¯s Response. At least nine studies will examine MRI

findings in CFS between 1990 and 2000. All will display variable

findings; a 1993 study found abnormalities in 27% of CFS patients;

a1994 study in 50%; another found them in 32% of CFS patients (and a

statistically equal numbers of controls). The inability to find

abnormalities in all or at times in a majority of CFS patients or to

find them in specific areas of the brain will continue to leave the

scientific community unclear as to their significance.

The Present. Things will change for the better around 2000 as

researchers refine their techniques and imaging technology improves.

Dr. Natelson¡¯s finding of increased central nervous system

abnormalities in CFS patients without mood disorders as opposed to

those with mood disorders will help to increase interest in this

area. Functional MRI¡¯s and other brain imaging techniques now

consistently show abnormalities in certain parts of the brains of CFS

patients. CFS patients have had to wait for brain imagining

technology to catch up to them before it could reveal consistent

results.

IMMUNE FINDINGS. These researchers concentrated on two herpesviruses,

EBV and HHV-6. Both were relative newcomers to the medical world at

that point. EBV was discovered in 1964 and HHV-6 in 1986. Several of

the Incline Village studies did find evidence of increased EBV and

HHV-6 activation in their patients but all were unclear as to their

significance. The 1993 Levine, Cheney, Pocinki, Ablashi,

study noted that HHV-6 reactivation might either be an epiphenomenon,

secondary to immune dysfunction¡­.or could have no relation to

patients symptoms " or it could be destroying nerve and immune cells.

This study concluded that " None of the viruses evaluated--human T-

lymphotropic viruses I and II, Epstein-Barr virus, or human

herpesvirus-6--could be etiologically linked to these outbreaks " .

They postulated that one outbreak was caused not by HHV-6 or EBV but

by giardiasis.

Medical Communities Response. EBV and HHV-6 will both be studied

intensively in CFS in the aftermath of Incline Village. Between 1987

and 1996 over twenty studies will examine the relationship between

EBV infection and CFS and between 1990 and 2000 at least 14 studies

will examine the relationship between HHV-6 infection and CFS. At one

point, Dr. Komaroff, now an advocate for HHV-6¡¯s effects in CFS, will

co-author a paper concluding the opposite (Buchwald 1996). This very

large study (548 CF and CFS patients and controls) found no

differences in the levels of 13 viruses in CFS patients relative to

the other groups or to CFS patients with acute onset. (This size

study is almost unimaginable today!) Researchers will end up

concluding that increased EBV activation does not play a role in CFS.

A similar but less strong consensus will emerge concerning HHV-6.

The Present. Again, improved testing and knowledge will re-ignite

some interest in both these pathogens. Dr. Komaroff recently detailed

a series of factors suggesting that HHV-6 reactivation does play a

role in some CFS patients. Dr. Glaser has continued to explore the

possibility that some types of EBV activation are damaging in CFS.

While underfunding is a problem resolving the role these pathogens

play in CFS may await further technological advances. In particular

inadequate testing for HHV-6A virus still limits our understanding of

its effects.

CFS and ME and Post-viral Syndrome and. Icelandic Disease and Royal

Free disease, etc. or Not? Debate rages in the CFS/ME communities

whether CFS and ME are similar diseases. The authors of the 1992

paper (Buchwald, Cheney, , Ablashi, Gallo, Komaroff, etc.)

were faced with a similar question. Notice that the title of the

paper ¡®A Chronic Illness.. " doesn¡¯t mention CFS or ME or any other

names. Because CFS and its definition ¨C which differed from the one

used ¨C came after the study began they couldn¡¯t refer to their

patients as CFS patients. The most they could say was that ¡®most

patients probably would have met the case definition for chronic

fatigue syndrome "

They didn¡¯t refer to their patients as myalgic encephalomyelitis (ME)

or Icelandic disease or Royal Free disease, etc. patients either.

Instead they noted that ¡®the illness we have observed shares many

features with entities variably called¡­ " postviral fatigue syndrome,

myalgic encephalomyelitis, Icelandic disease, etc. "

It was clear that seven years after they first encountered these

patients that they felt that their group (still one of the most

intensively studied group of CFS patients ever) was very closely

allied with if not identical with these other groups.

After all this study these researchers felt competent to address some

basic questions regarding not just their group of patients but all

this entire group of patients (CFS/ME/Royal Free, etc.). In the

beginning of the discussion section of the paper they asked whether

all these diseases were each caused by one pathogen, were caused by

different factors, or did they all represent one general illness that

could be triggered in numerous ways?

They came down on the last possibility ¨Cthe one that prevails in the

US today. In the last paragraph of the paper they stated that ¡®we

think that this is probably a heterogeneous illness that can be

triggered by multiple different genetic and environmental factors

(including stress, toxins and exogenous infectious agents) " ¨C

Thus while some ME advocates may single out the Incline Village

outbreak as an ME as opposed to a CFS outbreak the researchers and

physicians involved in treating and examining these patients did not.

Nor did they believe that acute infectious onset patients differed

from gradual onset patients. While many point their fingers at the

CDC for turning an infectious illness into a grab bag of

undifferentiated and fatiguing illnesses, they should note that this

group, which featured many who will go on to be outspoken advocates

for CFS/ME ¨C will come to much the same conclusion; CFS/ME is an

illness that can be triggered in many different ways but which

reveals itself by a core group of symptoms.

Overall Conclusion. The ¡®CFS friendly¡¯ researchers at the Incline

Village outbreak (and elsewhere) raised questions that the scientific

community did look more closely at. EBV and HHV-6, in particular,

were exhaustively researched but substantial numbers of MRI studies

were done as well.

The progess in unraveling CFS has been slower than one would have

hoped. Much of the blame for this has been laid at the hands of an

inattentive if not biased research community. CFS has certainly never

enjoyed the amount of research funding it deserves but this short

survey suggests that the research community did respond to many of

the issues raised.

The blame for the slow progress in understanding CFS can be laid at

many different feet; the bias evoked by the name, the poor

performance by the CDC, the poor leadership at the NIH, an inherent

conservatism at research institutions around the world, an inadequate

technology, a lack of creativity, etc. but a good share of it must be

laid at the complexity of the disease itself. Many of the issues that

plague researchers today such as how to define CFS, the difficulties

replicating study results and the obvious presence of subsets showed

up in these early studies as well. CFS/ME was a puzzle from the

beginning ¨C not only to the research community at large but to those

intimately involved in studying it. Even when they have had adequate

resources to study it CFS has often yielded its insights slowly and

grudgingly.

Addendum. Ironically the research community may have been more

amenable to embracing CFS before much was known about it. The search

for pathogens that much early research was focused on is, after all,

something the research community knows well. The large size of

several early studies suggests a commitment to understanding CFS/ME

that is not be present today. Ironically while much more is known

about CFS today and more intriguing research avenues exist than ever

before the CFS/ME research program has been cut back severely at both

the NIH and the CDC.

There are many easier diseases to study, many diseases that provide

much better expectations of success for researchers. The difficulty

CFS/ME presents researchers requires that we a) be appreciative of

those that have joined us for this hard slog and be vigilant in

demanding that the scientific community commits the resources needed

to adequately study it. ____________________________________-

Buchwald, D., Cheney, P., , D., Henry, B., Wormsley, S.,

Geiger, A., Ablashi, D., Komaroff, D.etc. 1992. A chronic illness

characterized by fatigue, neurologic and immunologic disorders, and

active Human Herpesvirus Type 6 Infection. ls of Internal

Medicine 1116: 103-13.

Daugherty SA, Henry BE, DL, Swarts RL, Bastien S, RS.

Rev Infect Dis. 1991 Jan-Feb;13 Suppl 1:S39-44. Chronic fatigue

syndrome in northern Nevada.

Buchwald D, RL, Pearlman T, Kith P, Komaroff AL., J Med Virol.

1996 Sep;50(1):25-30.Viral serologies in patients with chronic

fatigue and chronic fatigue syndrome.

Levine PH, son S, Pocinki AG, Cheney P, D, Connelly RR,

Weil R, SM, Ablashi DV, Salahuddin SZ, et al. Arch Intern

Med. 1993 Mar 8;153(5):661. Clinical, epidemiologic, and virologic

studies in four clusters of the chronic fatigue syndrome.

¡¡

[Guest guest]

I have no idea what you're talking about. I took the

quote from a 1993 paper on outcomes in Incline

Village. Its in the reference section below the paper.

Everything else is mine.

What slant and spin are you talking about. I cant

imagine what problems you with that paragraph.

--- erikmoldwarrior <erikmoldwarrior@...>

wrote:

> cort johnson <cortttt@...> wrote:

> >

> > Come ,

> >

> > I know you're referring to Incline. As if the

> > heterogeneous nature of CFS or ME for that matter,

> was

> > any less heterogeneous then.

> >

> > But in this paragraph are quotes taken directly

> from a

> > paper assessing the prognosis of your beloved

> Incline

> > village compatriots.

> >

> > If you want to read more about what they thought

> about

> > the Incline Village outbreak - a very mixed bunch

> it

> > turns out - check out this paper.

> >

> >

>

http://phoenix-cfs.org/Original%20Sin%20Incline%20Village.htm

>

>

_____________________________________________________________

>

>

> Cort, my " beloved Incline Village compatriots " , is

> it?

> And you cite " directly taken from a paper " that you

> wrote yourself as

> evidence to be used against me?

>

> " A mixed bunch "

>

> " This explodes the myth that all or even most

> CFS/ME patients

> are ¡®disabled¡¯ "

>

> " Both ME and CFS advocates claim Incline Village as

> their own "

>

> " The CDC, of course, was on the scene early but they

> weren¡¯t the only

> ones. A group of committed CFS

> researchers/physicians were there

> also. This group came to this disease with open eyes

> and for several

> of them it was a career changing event. "

>

> For those who know what really happened, the slant

> and spin in your

> words could make no clearer statement.

>

> -

>

___________________________________________________________

>

>

> ORIGINAL SIN: Incline Village, Chronic Fatigue

> Syndrome and Myalgic

> Encephalomyelitis by Cort

>

> Incline Village is ground zero for the modern era of

> CFS/ME. It is

> where CFS/ME first (re)emerged in a big way and made

> it onto the

> national scene. What a scene it was; we had a

> bucolic (upper class)

> community in a resort town in the Sierra¡¯s beset by

> a bizarre

> epidemic. We have the embattled good guys (our

> doctors) struggling

> against their supposed allies (big, bad government

> bureaucracy ¨C the

> CDC) and the rest of the medical establishment all

> the while

> defending their scorned and disabled patients. What

> a stirring story

> it was.

>

> Incline Village is a place where, paradoxically,

> things went right in

> a big way (CFS/ME finally gets attention) and wrong

> in a big way

> (CFS/ME called ¡®yuppie disease¡¯.) Not so long

> after the Incline

> Outbreak the name ¡®chronic fatigue syndrome¡¯ was

> coined and down the

> slippery slope of ¡®fatigue¡¯ this disease slid.

>

> Both ME and CFS advocates claim Incline Village as

> their own. Some

> believe it was our first big chance ¨C perhaps our

> only chance - to

> fix this disease in the research community¡¯s mind

> before it got

> tainted by the fatigue label. The facts were all

> there they say! All

> the powers that be had to do was open their eyes.

> Instead they turned

> them away and we have suffered the consequences ever

> since.

>

> The CDC, of course, was on the scene early but they

> weren¡¯t the only

> ones. A group of committed CFS

> researchers/physicians were there

> also. This group came to this disease with open eyes

> and for several

> of them it was a career changing event. The pedigree

> of this group is

> amazing; many (Cheney, , Ablashi, Komaroff,

> Bastien,

> Buchwald) will go on to take central roles in CFS

> research or

> treatment. Early on they were able to garner a

> series of large NIH

> grants and over the next six or seven years they

> would come to

> publish at least five studies examining the Incline

> Village (and

> other cohorts).

>

> We know the CDC found nothing interesting but did

> ¡®our side¡¯ say?

> These researchers - so passionately struck by their

> patients

> suffering - knew they were facing a real disease.

> What did they

> report? What kinds of patients did they find? Were

> they CFS patients

> or ME patients? Were their conclusions listened to

> or were they

> dismissed? What kind of start did CFS research get

> off to? Twenty-two

> years later we take a look at Incline Village and

> what it meant and

> didn¡¯t mean for CFS/ME patients.

>

> The Studies: These were not small efforts. Much of

> the information in

> this paper will be taken from a major paper

> published in 1992

> (Buchwald, Cheney, , Ablashi, Komaroff et.

> al. 1992). It was

> one of the first major studies ever done on CFS/ME

> and it is still

> one of the largest. It involved cerebrospinal fluid

> draws, MRI¡¯s, HHV-

> 6, HTLV and lymphocyte testing in at least a portion

> of over 200

> patients.

>

> Defining CFS: One of the first problems the

> investigators of the 1992

> study faced was one researchers are still struggling

> with; how to

> define an often debilitating disease that is marked,

> for the most

> part, by rather common symptoms. As most definitions

> have done, these

> researchers focused on the predominating symptom,

> fatigue. They

> required each patient in the study to have at least

> three months of

> chronic, debilitating fatigue with at least two of

> eight other

> symptoms (fever, headache, sore throat, earache,

> rhinnorhea, cough,

> diarrhea or muscle pain.

>

> Aside from fatigue the symptom set was somewhat

> unusual; fever,

> earache, post-nasal drip, cough and diarrhea will

> not appear in the

> 1994 definition or be prominent in others. Headache,

> sore throat and

> muscle aches will. A perhaps special kind of fatigue

> ¨C post-

> exertional fatigue ¨C that some researchers believe

> characterizes CFS

> was not mentioned and had not yet been delineated.

> Neither cognitive

> problems nor joint pains were part of the definition

> but both were

> common (79-88/67-82%) in this group.

>

> They noted that a ¡®few patients¡¯ (8%) developed

> ¡®transient periods¡¯

> of an encephalitis-like symptoms including

> confusion, gait problems,

> paralysis and seizures. These early symptoms are

> similar to some

> described in early ME epidemics. Was this an ¡®ME¡¯

> subset? Like ME

> patients earlier studies described the most severe

> nervous system

> problems (paralysis, seizure) were described as

> ¡®transient¡¯. As the

> disease progressed these patients looked more and

> more like the other

>

=== message truncated ===

________________________________________________________________________________\

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[Guest guest]

cort johnson <cortttt@...> wrote:

> What slant and spin are you talking about. I cant

> imagine what problems you with that paragraph.

" The CDC, of course, was on the scene early but they weren't the only

ones. A group of committed CFS physicians were there also. "

" On the scene early "

" Also "

You don't see any problem with that?

-

[Guest guest]

You mean the CDC wasnt there that early? Is that the

problem????? The CDC was put in front because

everybody refers to them. What I was trying to bring

out that there a bunch of CFS physicians there as well

and they did alot of studies. Not that the CDC was

there first .

--- erikmoldwarrior <erikmoldwarrior@...>

wrote:

> cort johnson <cortttt@...> wrote:

> > What slant and spin are you talking about. I cant

> > imagine what problems you with that paragraph.

>

>

> " The CDC, of course, was on the scene early but

> they weren't the only

> ones. A group of committed CFS physicians were there

> also. "

>

>

>

> " On the scene early "

> " Also "

>

> You don't see any problem with that?

> -

>

>

>

________________________________________________________________________________\

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[Guest guest]

cort johnson <cortttt@...> wrote:

>

> You mean the CDC wasnt there that early? Is that the

> problem????? The CDC was put in front because

> everybody refers to them. What I was trying to bring

> out that there a bunch of CFS physicians there as well

> and they did alot of studies. Not that the CDC was

> there first .

Say, you mean that Dr Cheney and Dr were " there as well " ,

and they even may have contributed a thing or two by doing " alot of

studies " ?

How important could those studies have POSSIBLY been?

After all, didn't the CDC say they found " no evidence of a fatiguing

illness " ? Guess that settles THAT, huh?

And golly gee whilikers, you want to know if the problem was that

the CDC wasn't there that early?

No doubt, whatever slight little problems may have ensued because

the CDC " wasn't there that early " has all been resolved by now, right?

Must have, because they have " taken the lead in CFS research " and

redefined it since then, what?

This is too funny.

If you ever heard of the history of CFS and the Wessely school

debacles, you hide it well.

Or at least you would, if it weren't for all the old messages which

show you know these things full well - but have an awfully strange

way of expressing them.

-

[Guest guest]

On Jan 16, 2008 5:25 PM, cort johnson <cortttt@...> wrote:

*> Honestly - what I meant to show was that no one could figure what

was going on with those CFS patients; that the 'good guys' had their shot

and they couldnt really figure it out either. *

But that leaves out the " good guys " that had *experience* - J. Gordon

Parrish and is Shelokov - who clearly recognized an existing disease,

identified at least during the 50s and possibly back to the 30s: Epidemic

Neuromyasthenia (US) and Myalgic Encephalomyelits (UK and related

countries). They railed against the new name, with Shelokov conceding that

EN and ME were the same and deferring to the British name.

There was plenty of understanding of this entity around.

Had the CDC **not** shown up, the patients would have been *better* off.

The NIH/CDC steamrolled over the superior knowledge and give-a-damn of

Selokov and Parish to create the new name and much of the sorry history

associated with research into this disease, persisiting to this day.

I perceive that Cort has recently shown apologist tendencies with respect to

CDC.

(The most memorable example to me being the apparent respect he holds for

the 'science' involved in Reeves's study showing no sleep disorders in

ME/CFS, after Reeves did everything he could to get the true representation

of real ME/CFS down (by some accounts to as low as 6%) in his " patient

population " . If you are not looking at real ME/CFS patients, it does no

matter how good the rest of the 'science' was.)

I don't know where this appeasement comes from - possibly gratitude for the

kind noises CDC made in November 2006. Unfortunately, Reeves continues to

publish rubish like the stuff above, undermining what we do know about this

disease, by defining it out of existence with overly broad criteria.

[Guest guest]

Hi Bob!

Well as soon as I can get my computer fixed one of the upcoming newsletters

will highlight Rowes paper taking the CDC to task for that study. By the way he

didnt do it because they weeded all the ME patients he did it because the sample

size was too small. I consider weeding patients with other potentially

confounding disorders out of a study good science.

My surprise was that alot of the 'good guys' had their shot at Incline - quite

a few big studies were done by them - and they couldnt figure it out either. I

dont think they're in the pocket of the CDC - I think this is a very difficult

disease to understand.

I am neither for nor against the CDC. Sometimes they do good work

(Pharmacogenomics and other studies) sometimes they dont (Empirical definition).

As you may recall I had an entire issue devoted to that subject plus an

interview with Lenny . I call it as my poor brain sees it!

bob niederman <bobn1955@...> wrote:

On Jan 16, 2008 5:25 PM, cort johnson <cortttt@...> wrote:

*> Honestly - what I meant to show was that no one could figure what

was going on with those CFS patients; that the 'good guys' had their shot

and they couldnt really figure it out either. *

But that leaves out the " good guys " that had *experience* - J. Gordon

Parrish and is Shelokov - who clearly recognized an existing disease,

identified at least during the 50s and possibly back to the 30s: Epidemic

Neuromyasthenia (US) and Myalgic Encephalomyelits (UK and related

countries). They railed against the new name, with Shelokov conceding that

EN and ME were the same and deferring to the British name.

There was plenty of understanding of this entity around.

Had the CDC **not** shown up, the patients would have been *better* off.

The NIH/CDC steamrolled over the superior knowledge and give-a-damn of

Selokov and Parish to create the new name and much of the sorry history

associated with research into this disease, persisiting to this day.

I perceive that Cort has recently shown apologist tendencies with respect to

CDC.

(The most memorable example to me being the apparent respect he holds for

the 'science' involved in Reeves's study showing no sleep disorders in

ME/CFS, after Reeves did everything he could to get the true representation

of real ME/CFS down (by some accounts to as low as 6%) in his " patient

population " . If you are not looking at real ME/CFS patients, it does no

matter how good the rest of the 'science' was.)

I don't know where this appeasement comes from - possibly gratitude for the

kind noises CDC made in November 2006. Unfortunately, Reeves continues to

publish rubish like the stuff above, undermining what we do know about this

disease, by defining it out of existence with overly broad criteria.

[Guest guest]

I dont know what you mean? The CDC hasnt thought CFS was EBV for a long long

time. Nobody really has. They're plainly not putting out that piece of

misinformation. Thats an old old issue.

Maybe you're worried about 'stress related' reactivation. Thats certainly

still a possibility. There are signs that both axes of the stress response are

impaired in CFS. But its clearly not THE ANSWER - the impairments are too mild

to account for CFS.

Actually Dr. Glazer is studying a variant of EBV in CFS right now.

erikmoldwarrior <erikmoldwarrior@...> wrote:

cort johnson <cortttt@...> wrote:

>

> Honestly - what I meant to show was that no one could figure

what was going on with those CFS patients; that the 'good guys' had

their shot and they couldnt really figure it out either. I dont think

Cheney et al based their opinions or their finding on the CDC - and I

know you dont either - altho one of your comments (sarcastic I

suppose) suggests you do.

>

> You have an unparalleled ability to read whatever you want into

whatever I write. I have absolutely no idea how you got the idea I

thought the CDC should have been there earlier???That was not the

point of the piece. The point, as I remember it, was - very difficult

disease, no one got it right - everyone had their shot at it (not

just the CDC) better technology has helped (with regards to this

discussion alot of people apparently recovered)

>

Cort, if you are truly not being dishonest about your presentation

of CFS, will you PLEASE read Osler's Web and find out what really

happened.

Dr Cheney and Dr presented definitive evidence as to what

this illnes was NOT: Chronic Mononucleosis.

That was the entire reason for changing the name from CEBV syndrome

to CFS.

That " nonEBV " evidence was only halfheartedly accepted by Straus and

the Holmes committee in order to construct their provisional " CFS "

research tool - Dr Cheney's evidence GAVE THEM NO CHOICE.

Otherwise the CEBV Syndrome term would have been perfectly fine, and

could have been retained. Yet the CDC continued to equivocate as

though the issue had never been scientifically resolved, and might

still be some form of chronic EBV that was kept reactivated by stress.

That's why Dr Hyde called attention to this by saying " Such is the

perserverence of error " even as he knows full well, IT WAS NO ERROR.

You people are supposed to figure it out!

Both views cannot be right - so YOU are supposed to SEE who is

telling the straight story.

Your presentation of these events is so much in alignment with the

CDC's " cover story " that it seems impossible to me that you could

know what really happened, and still portray CFS as you do.

Dr Cheney and Dr DID " get it right " .

It is the people who adhere to the cover story who are all getting it

wrong.

Their numbers have grown - as the cover story is endlessly repeated.

But that doesn't make it right - and never will.

-

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

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