The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

To the MCWPA on the Washing Post XMRV and 'CFS' ad

***Permission to repost in it's entirety***

 11/30/2010

MCWPA:

Your site is audacious - and that is not a compliment.

 

- Tactics to scare the public into panic mode is reprehensible. 

Particularly when not enough scientific facts are yet known.

 

- Demanding that the press get the facts straight, when the mixed 

crowd of patients has not yet managed to, is preposterous.

 

Furthermore, facts currently known continue to be mixed haphazardly 

together by non-medical types, as usual. Both continuing and

increasing the mass illness confusion.

 

The Fukuda, et al, consists of 2 major and up to 8 minor symptoms. 

Nothing more. It is very tiny.  A 'syndrome' based on 'fatigue'.

A 'diagnosis of exclusion' that can only be made after 6 months, and 

when everything else has been corssed off the list.

IF a patient has more than the CFS criteria outlines - then they  

do not have CFS!!!!!!!

 

The Canadian Criteria is a 'blend' of the Fukada, et al, and the 

formal definition for ME, G93.3.

 

Again, both 'CFS' and 'ME/CFS' have been made-up by groups not 

knowledgable enough or properly trained medically to do so.

 

Neither 'CFS' mor 'ME/CFS' has a formal WHO classification or ICD Code.

 

- The USA CDC has always classified 'CFS' under R53.82 (sonce it was 

written b/n 1988-1994).

 

- The WHO has classified ME under G93.3, Brain, Neuro, CNS, since 1969.

 

There are significant DIFFERENCES b/n the Fukuda, et al, the CC, and 

the Ramsey/Hyde ME definitions.

 

So how can any patient possibly meet them all??? That is not 

possible. Not when one is discerning and meticulous with the details.

 

Too many folks ignore these important details, and many, many more:(

 

There are other big sticking points that many like to forget/ignore, 

as well....

 

 

What's been long overdue and very much needed is to:

 

Establish a large national--or better yet--worldwide database!!! 

This should have been done years ago.

 

That includes as much patient info as possible, including things like:

 

individuals names, and dates of birth.

each person's age, and location, and date of illness onset.

 

Describe how it started (and be very specific!):

 

    suddenly?

    slowly?

    a viral event (describe thoroughly)

    bacterial?

    after a surgery?

    after a head injury?

    an accident?

    after a transfusion?

 

ETC

 

Then start adding in more info:

 

illness state at the time each became ill (again, be specific)

previous illnesses (inlcude times and dates, of course)

vaccinations, including recent and previous (with dates, types, etc.)

any and all adverse reactions to vaccines

any and all reactions to meds

meds currently taking

previous surgeries

blood transfusions

births

surgery complications

family members illnesses (esp more major ones, or related types)

 

and on and on and on....

 

I know I suggested many things to the WPI a year or two ago, and 

they did post some sort of list on their website (it may still be 

there).

 

--The goal is to be as specific as possible, and as detailed as possible.

 

And when--after some days, weeks or months--no more can be added, 

and no one can think of one more thing to add, than it falls to the 

researchers to really start looking very, very carefully at all of 

the data. Look for similarities, sure. But also be fully cognizant 

of the DIFFERENCES. Look for patterns. Look for disparities.

 

Just see what there is to see.....

How it all lays out.

 

Additionally:

 

Bear in mind that prodomal phases (how an illness starts precisely) 

are very important.

 

As are incubation periods (sudden onset versus slow onset).

 

Retroviruses are different things than enteroviruses.

 

WHO classifications and ICD Codes matter a lot (it's how the 

medical/insurance world operates!)

 

--Many of the various things mentioned by the current participants 

are classified and coded differently from each other in their 

medical files!

 

That is: some illnesses can be co-morbid; some cannot be. There are 

EXCLUSIONS listed in many formal criterias and definitions.

 

EXP: ME, G93.3, is listed as an exclusion to CFS, R53.82, and

          CFS is listed as an exclusion to ME (except in the UK's 

version of their ICD10, which is based on erroneous information.)

 

And some 'illnesses' claimed by some patients don't even really 

exist, and have no WHO classification or ICD Code!

Hello!!

 

A great deal of time and effort must be involved upfront when 

examining a patient thoroughly for the first time, taking a full 

medical history, running various lab and blood work, and sometimes 

even doing other testings if indicated. It takes a knowledgeable and 

qualified MD (at the least) to do this.

 

--It does not fall under the patients' purview to attempt to 

diagnose themselves or each other. That is completely unacceptable.

 

A large national or worldwide database of the ever-expanding mixed 

patient group is what's been needed since the Lake Tahoe outbreak in 

1984. It is a travesty that data hasn't been collected since...and 

all along. That type of data would be very valuable.

 

 

Lastly, DIFFERENCES matter far more than a few perceived 

similarities. And similar does not mean same!

 

a cold...is not at all the same as pneumonia

 

a mild infection with a slightly elevated white cell count...is not 

at all the same as having leukemia

 

not all headaches are migraines, and

a headache...is not at all the same as having meningitis

 

a cough...is not TB

 

an occasional allergic rash...is not the same as having eczema

 

a vaccine reaction...is a vaccine reaction

 

occasional, sporadic pain...is not at all like having polio, or a broken bone

 

and

 

chronic fatigue (cf) is not the same thing as CFS (Chronic Fatigue 

Syndrome), R53.82

 

nor is CFS, R53.82... anything at all like having ME, G93.3!!

 

because 'fatigue' (brought on for any reason) is not at all the same 

thing as Central Nervous System (CNS) damage.

 

--ME is much more like MS, and Polio. Hence the WHO's reasoning for 

classifying them all in the G's.

 

(CFS has always been classified by it's authors/originators, the USA 

CDC, under is R53.82, fatigue, ill-defined.)

 

Mixed patient groups will always and only produce: mixed data.

And mixed data is useful to no one.

 

If any group wishes to finally come up with any 100% replicable and 

verifiable answers, they MUST stop being so casual and sloppy and 

finally start to differentiate and tightly define their patient 

groups. And then share that information/process with others when 

they publish their study results. Because others MUST be able 100% 

replicate any scientific results in their own labs, or absolutely NO 

PROGRESS will ever be made.

 

Also be cognizant of the fact that even with so many gov'n agencies 

and now even pharma labs getting involved with XMRV, HGRB, HGRAD, 

MLV studies (see how the names are changing already??), there has 

still been absolutely no 100% replication of any study. Deeper 

attention has been paid to the processes used, and the samples 

provided, and more.

 

Pretty soon, the only thing left to do will be to 

tightly define the patient population. And it is at that point that 

we will FINALLY start to learn what it is that EACH patient in this 

ever-expanding 'ME/CFS' crowd actually has. Some portion will no 

doubt prove to have retroviruses. But I'm guessing many won't, and 

instead will be PROVEN to have OTHER things wrong with them. There 

are simply too many variables involved.... Too many DIFFERENCES b/n  

them all for it to ever possibly be ONE THING.

 

Details matter tremendously.

 

There is no place for rumors, hearsay, myths, misperceptions, 

personal opinions. They are what have kept this issue muddied for 

the past 26+ years.

 

Everyone needs to finally focus on the details and the differences: 

that is where the answers lie. Hopefully with many gov'n agencies 

and pharma labs involved now, answers will be forthcoming. And my 

guess is that 'CFS' and 'ME/CFS' will cease to be mentioned at all. 

Some portion of patients will prove to have XMRV, HGRB, HGRAD,  

MLV.  The others will prove to have OTHER.

 

LKWoodruff, USA

lkw777@charter.net

Fw: WPI response to The DSM-5 Task Force -APA - comments by LK Woodruff

3/24/2010

TO: All WPI staff and associates

PLEASE STOP USING THE INCORRECT and MADE-UP TERM/NAME OF 'ME/CFS' in
postings and letters.

I find it implausible that the WPI is asking the APA to:

- not make errors,
- not make illness assumptions,
- not make up illnesses or illness categories, and
- not mix or blend multiple illnesses...

when that is precisely what is happening with the made-up 'ME/CFS' !!!!

How audacious!!!!  Why is it not ok for them to do these things, but it is
ok for you and the ever-expanding mixed crowd to do so???
Why the double standard???

See additional green comments below.

And try really, really hard to look at the situation from a ME-defined
person's perspective. -->It's appalling.
It upsets us every bit as much as the possibility of CFS being
moved/classified under a 'mental' label upsets CFS patients.

So many casual mistakes have been made in the past 26+ years, resulting in a
horrific mess. It is well past time to straighten it all out once and for
all. That can only bedone by being very precise, very exact, very
discriminate.

Most Sincerely,

LaVonne K Woodruff
lkw777@charter.net

*permission to repost in it's entirety*


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


http://wpinstitute.org/news/docs/DSM-5WPIaw2.pdf


April 16, 2010


DSM-5 Task Force
American Psychiatric Association
1000 Wilson Boulevard Suite 1825
Arlington, VA 22209

 

Members of the DSM-5 Task Force:

The Whittemore Peterson Institute would like to
address the potential revision of the American
Psychiatric Association's (APA)'s Diagnostic and
Statistical Manual for Mental Disorders (DSM-5).
The APA's proposed changes would combine several
existing somatic categories into one larger category,
Complex Somatic Symptom Disorder, adding
language that closely resembles the CDC's criteria
for Chronic Fatigue Syndrome with additional
sickness related behaviors that are often evidenced
by those who are ill with a disease when it is poorly
understood and characterized symptomatically.

That would be the Fukuda, et al.


The following language has been proposed:

To meet criteria for CSSD, criteria A, B, and C are
necessary.


A. Somatic symptoms:

Multiple somatic symptoms that are distressing or
one severe symptom


B. Misattributions, excessive concern or
preoccupation with symptoms and illness: At least
two of the following are required to meet this
criterion:


     * High level of health-related anxiety.

     * Normal bodily symptoms are viewed as
        threatening and harmful

     * A tendency to assume the worst about
        their health (catastrophizing).

     * Belief in the medical seriousness of their
        symptoms despite evidence to the
        contrary.

     * Health concerns assume a central role in
        their lives

 

C. Chronicity: Although any one symptom may not be
continuously present, the state of being symptomatic
is chronic and persistent (at least six months).


This refers to CFS (Fukuda, et al) only.
NOT ME, which starts with a 'sudden onset viral event'.


Recent findings by researchers at the Whittemore
Peterson Institute, the Cleveland Clinic and the
National Cancer Institute have found a link between


No, you guys have found a 'possibility of association', to date, with
XMRV and 'CFS' (Fukuda, et al) only.

You have included NO ME, G93.3, patients in any study(ies).

You have proven nothing, to-date.

No other group has replicated the WPI study.

And even when one does (if they ever do, by adhering to strict
protocols) more and new studies will need to be done and the
entire process gone though again, etc.

 

those who have been previously diagnosed with
Chronic Fatigue Syndrome, (ME/CFS) and a new
human retrovirus, XMRV. Yet ME/CFS is currently
diagnosed symptomatically and requires the patient
experience 6 months of severe fatigue.


No, 'CFS' (Fukuda, et al) is.

ME, G93.3, is about CNS damage. NOT fatigue.


This disease
is chronic and often causes a great deal of anxiety
for those who suffer from its debilitating symptoms.
Therefore, an individual suffering from ME/CFS could
be erroneously classified within the new DSM-5
category as a somatic disorder when in fact they
clearly suffer from a chronic infectious disease
process, evidenced by many physical abnormalities.
(Low grade fever, sore throat, severe headache,
cognitive dysfunction, and enlarged lymph nodes,
and painful joints and muscles).


-->This is NOT a list of ME, G93.3, symptoms. full or partial.

It describes 'CFS' (Fukuda, et al), plus a bit more.

and to quote from the USA CDC site:

"Other Commonly Observed Symptoms in CFS

In addition to the eight primary defining symptoms of CFS, a number of other
symptoms have been reported by some CFS patients. The frequencies of
occurrence of these symptoms vary from 20% to 50% among CFS patients. They
include abdominal pain, alcohol intolerance, bloating, chest pain, chronic
cough, diarrhea, dizziness, dry eyes or mouth, earaches, irregular
heartbeat, jaw pain, morning stiffness, nausea, night sweats, psychological
problems (depression, irritability, anxiety, panic attacks), shortness of
breath, skin sensations, tingling sensations, and weight loss. These
symptoms do not contribute to the diagnosis of CFS."


The new language also adds undue concern about
one's health as criteria for establishing the diagnosis
of complex somatic disorder. This is an
immeasurable description of behavior that suggests
that if one is suffering from an unknown illness and
expresses deep concern or seeks answers from
multiple sources (a potentially perfectly natural
response to such a circumstance) that one could then
be classified as having a somatic disorder. Yet,
newly recognized diseases require time to develop
the appropriate conformational laboratory tests.
During that period of time, does it not remain the
responsibility of physicians to recognize the patient's
illness and reassure the patient that they will do all
they can to alleviate their suffering?


A person who is afflicted with Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome is often
incapable of taking care of their own most basic
needs. The swiftness with which one is incapacitated
without relief often results in accompanying
depression and anxiety. If this patient is advised not
to believe their own symptoms of illness they may
become further traumatized by the doctors whose
sworn duty is to "first do no harm".

 

NO ONE HAS 'ME/CFS'. IT DOES NOT EXIST, except in the minds of it's
authors/originators, plus some illness ignorant patients who don't bother to
adhere to criterias and definitions, WHO classifications and ICD Codes, or
bother to verify what they read, etc. Sloppy, sloppy, sloppy....

ME = G93.3 (WHO, 1969) - disease - Brain, Neuro, CNS damage - enterovirus -
3-7 days incubation

CFS = R53.82 (USA CDC, 1988-present) - syndrome - 'fatigue' - vector-borne,
rickettsial, zoonotic - retrovirus - much longer incubation


The Whittemore Peterson Institute is deeply
concerned that there will be future complex biological
diseases of unknown origin, which could too easily
be ignored as the result of the diagnosis of "complex
somatic disorders". This would result in serious
consequences for those patients who continue to
decline in health without appropriate medical
interventions.

The exact same applies to the made-up 'ME/CFS' usurping true ME, G93.3.


The term CSSD may also serve as a diagnosis to be
used by physicians who currently lack the
sophisticated diagnostic tools to describe a new and
emerging illness,

 

ME, G93.3, has been on the books for almost a century.

 

causing serious harm to those who
are ill. Two such recent examples of diseases once
categorized as somatic illnesses are multiple
sclerosis which was originally called, "hysterical
women's disease" and gastrointestinal ulcers. Only
after these diseases were pursued by those who
believed in their physical causes with subsequent
biological research, were medically effective
treatments made available. Thus creating a somatic
diagnosis, when there is in fact a physical illness,
would relegate a population of patients to many
more years of suffering, while basic biological
research funding is denied.

ME, G93.3, is classified by the WHO in the G's, as is MS, and polio.

CFS is not.

And this is exactly the sort of thing that has happened to ME, G93.3,
because CFSers have taken great liberties and tacked 'CFS' onto ME in an
effort to 'make it sound more serious'. Based on absolutely no proof, no
science, nothing logical.

Just some perceived similarities, and totally disregarding the critical
diffferences.

IF PATIENTS HAVE MORE THAN THE CFS FUKUDA, ET AL, CRITERIA LISTS - THEN THEY
CLEARLY DO NOT HAVE CFS!

They are MISdiagnosed!

And they and their Drs need to do further testings and evaluations to
determine what they actually have then.

-->ME, G93.3, can be definitively diagnosed with a SPECT scan.

For anyone at that point to say then THAT THEY HAVE 'ME/CFS'--WHICH DOESN'T
EVEN EXIST--IS BOTH A STRETCH AND ABSURD.

WHEN YOU HAVE MANY PATIENTS, ALL WITH DIFFERENT STORIES, OR VERSIONS, THAT
IS A HEADS UP TO DIG
DEEPER AND NOT JUST SCRATCH THE SURFACE. TO CONSIDER THE WAY EACH PERSON'S
ILLNESS STARTED,
AND THE WAY IT PRESENTS. TO ALSO FACTOR IN MANY OTHER VARIABLES. There is a
well-defined process to follow.

It is never acceptable TO JUMP TO CONCLUSIONS WITHOUT scientific proof or
JUSTIFICATION.


For these reasons, the WPI requests that the APA
thoughtfully examine the purpose and possible
unintended consequences for the encompassing
somatic category of illness, Complex Somatic
Disorder, and emphatically requests that the DSM-5
task force reject CSSD, as a medical or psychiatric
diagnosis.

RE: Stand Up For M.E. (USA proposed centers) - Whittemore Peterson Institute

/13/2009

 
Ms Whittemore and all:
 
MY OPEN RESPONSE
 
The past 20+ years have been WASTED on things like the
USA CDC's 'CFS' (R53.82) a tiny 'syndrome' based on 'fatigue',
and written in response to what staffers thought at the time was a
chronic Epstein Barr situation...but after what all now seem to
agree was actually a ME outbreak.
 
And the UK Wessely School's 'CFS/ME' (no classification or
code) written by this group of psychs to help insurance
companies deny patient claims...for which they've been well
compensated.
 
In all of this time, ME (G93.3)--classified by the WHO under
Brain, Neuro, CNS--has been grossly ignored, even tho it's
patients become ill suddenly from a viral onset event which
causes CNS damage, and then quickly morphs into a very
debilitating multi-systemic illness. 
 
ME is still not even formally acknowledged in the USA!!
 
Elsewhere in the world, thanks largely to the WS efforts, it is
assumed to be all about 'fatigue'. Ridiculous, illogical and
completely UNscientific 'blending' and 'lumping' together of a
now wide and growing variety illnesses has been the result.
 
An inordinate number of these blended patients actually seem
to fall under G05, a form of Encephalitis resulting from things
like Epstein Barr, Chicken Pox, CMV, etc. 
 
Many, many others are simply MISdiagnosed.
 
Dr Byron Hyde, the most knowledgable ME doc, has himself
written up a very lengthy list of 'other' things he's found, after 
he's taken the time to do thorough investigations and testings.
 
A process too often ignored by others....
 
The patients, and yes, even the (often self-proclaimed) 'experts'
involved in this debacle are often woefully illness ignorant.
Strict scientific protocols are completely ignored. Details don't
seem to matter. Similar in a few minor ways seems to be enough 
to sway the majority. Differences don't seem to matter to them, nor
criterias and definitions, classifications and codes. Illnesses are
made up by taking a bit from here, a bit from there, and then
adding things together to suit individuals. Terms are both made
up and used interchangably, with no regard for accuracy, etc.
 
This is bizarre behaviour, to say the least....
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
If these proposed centers the WPI are planning are going to deal with
ME (G93.3), then every single person involved, from the White
House down, needs to know precisely what ME, G93.3 is. And isn't. 
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
No one currently in this game can make that claim, except for the
few who actually have ME. And their numbers are few, as ME is rare.
 
And these ME patients are incredibly ill, with very poor stamina
and only a couple of hours of stamina per day, at best. We cannot
attend the now many conferences taking place. We must rely on
our computers to deliver our messages. And we remain absolutely
livid that our illness has been hijacked by 'fatigue' zealots who
make sure they keep the primary focus on 'fatigue'.
 
This does not help us one whit.
 
Nor does the fact that there are NO ME docs in the USA.
 
The American Neurological Association does not even acknowledge
ME (G93.3) even tho the WHO has formally done so since 1969!
-->That's 40 YEARS!!!!!!! What's wrong with this picture????
 
This is a case of horrific abuse demonstrated towards ME patients.
It is a case of woefully lacking medical and scientific approaches.
This is a case of the blind leading the blind.
Of vested interests spending monies to redirect and misinform,
instead of actually helping in any meaningful way.
It is a collosal joke. But it's not funny.
 
And it cannot continue. Actions these past 20+ years have been
misguided, misleading, confused...and unethical and reprehensible.
Even criminal.
 
Things must change. Dramatically. Now.
Lives--not just quality of life--of true ME patients remain in jeopardy.
This is unconscionable!!!
 
I got hit by ME (G93.3) 11+ years ago, while at work. I left that day
and did not return. I become progressively more ill each year.
Every day is a major struggle just to get thru. I am forced to live a
very tiny and frustrating life now, made worse by all of this gross
illness misinformation and misunderstanding and ignorance.
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
ME is not about 'fatigue', which is one symptom that many, many
illnesses present with.
 
ME is severe and very debilitating CNS damage, and a multi-systemic
illness.
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
I fit the ME definition(s) to a 't'. Not just sort of.... I am a textbook case.
And it is not difficult to diagnose, when one knows what to look for.
 
It only takes weeks to diagnose ME, not the 6 months that 'CFS'
(Fukuda, et al) does, for instance. But then, 'CFS' remains a 'diagnosis
of exclusion', only to be made after everything else possible has been
crossed off the list (a fact that too many like to forget/ignore).
 
 
Every single patient has the RIGHT to a correct and proper diagnosis.
Many of these 'mixed bag' patients could prove to have something
treatable, which would enable them to regain their health and their lives! 
 
To compare ME with CFS or the myriad of other things so many
patients have instead, is not even comparing apples with oranges - 
but is more like comparing fruits versus nuts. Different categories!
 
This madness must stop.True SCIENCE must replace it. Time is
marching on and people are suffering needlessly in many cases.
 
My very disciplined German parents always said,
"If you're going to do something, do it right."
 
I say that to everyone involved now in this mixed mess:
 
No more opinions, misconceptions, personal favorites, and so on.
No more making up terms and illnesses.
No more messing around and playing these sick, twisted games.
 
Good intentions are not enough, either.
 
Get real and get serious, everyone.
Verify, verify, verify every single detail!
Prove and disprove; both ways.
 
It's not about growing the numbers....
It's about the SCIENCE and the FACTS.
Insist that rigorous SCIENCE lead the way, from today forward.
This is the RIGHT THING to do. -->For everyone.
 
 
Sincerely,
 
LaVonne K Woodruff, USA
 
*permission to repost in full*
 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
 
Hello Friends and Family,

 
We need your help to find individuals, from the
states listed below, who will/can join in our efforts
to persuade key members of Congress to support a
major research funding proposal. 

This written proposal requests designated funding
for 3 to 4 regional medical research centers and a
National Neuro-Immune Research Center at the WPI/
University of Nevada.

We need advocates like yourselves to speak out in
support of funding for these critical medical research
institutions so those who suffer from ME/CFS and
other neuroimmune diseases can finally find the
answers and receive effective medical care that they
so deperately deserve.

There are over a million Americans with ME/CFS, yet
we still do not have one FDA approved treatment or
diagnostic test for this disease.

We have written and delivered a proposal to
Nevada's congressional delegation and all have
agreed to support this effort.  We can't do this alone
but together, we can!

President Obama has given Americans a critical
window of opportunity, through increased research
funding, that we must use to move these important
issues forward.

Please pass this on to your friends and relatives or
to anyone that you know of that may be able to help
our cause and have them contact me through my
email below. 
        

We are calling  this effort "Stand Up for
M.E."  (Myalgic Encephalomyelitis/CFS).


Thank you for your help! 
 
With Warmest Regards,
Annette 



Majority Members
Tom Harkin (D-IA), Chairman
Arlen Spector (D-PA),
Daniel Inouye (D-HI)
Herb Kohl (D-WI)
Patty Murray (D-WA)
Mary Landrieu (D-LA)
Richard “Dick” Durbin (D-IL)
Jack Reed (D-RI)
Mark Pryor (D-AR)
 
Minority Members
Thad Cochran (R-MA)
Judd Gregg (R-NH)
Kathryn Ann Bailey “Kay” Hutchinson (R-TX)
Richard Shelby (R-AL)
Lamar Alexander (R-TN)
 

 
`````

Annette Whittemore
Founder and President
Whittemore Peterson Institute
for Neuro Immune Disease
6600 N Wingfield Pkwy
Sparks, NV 89436
775-348-2335 Phone
775-348-2350 Fax
annette.whittemore@wpinstitute.org 
 

Re: WPI and associated partners announce potential XMRV study results by LK Woodruff

10/8/2009

Dear ALL:

I have not yet read all the fine print or specific details of the study mentioned in the announcement below.
Just this abstract, plus whatever I could unearth online doing a search.

PLEASE NOTE that this announcement below uses the term/name 'Chronic Fatigue Syndrome' and refers to CFS (R53.82) ONLY.
In other words: the 1994 Fukuda, et al, criteria.

Here is the first line from below. Read it carefully and do not even be tempted to add in your own words, change things around, or adjust it in any way to suit your own situation or beliefs - because that is how all of the nonsensical 'lumping' and 'blending' of disparate syndromes/illnesses has become so entrenched and confused:(

    "Scientists have discovered a potential retroviral link to chronic fatigue syndrome, known as CFS, a debilitating disease that affects millions of people in the United States."

And for the official record, bear in mind that 'CFS' remains a tiny little 'syndrome' based on 'fatigue', and a 'diagnosis of exclusion' only able to be made after 6 months, and when everything else has been crossed off the list of possibilties. It remains classified under rickettsial, vector-borne and zoonotic, where the USA CDC--it's originators/authors--have always placed it.

~

Notice as well that this study announcement makes no mention whatsoever of ME (G93.3, Neurogenic), which some confused patients and Drs--especially in more recent years--have decided on their own and with absolutely NO SCIENTIFIC SUBSTANTIATION WHATSOEVER is the same thing as CFS, or what they now refer to casually and erroneously as the made-up blend of 'ME/CFS'.

Nor does it mention or have anything to do with the UK Wesseley School's (WS) 'CFS/ME', which is that group of psych's made-up 'psychosocial illness MODEL' written in the 1990's to help insurers deny patient claims.

Remember, too, that neither 'ME/CFS' nor 'CFS/ME' are real illnesses or diseases.
Neither has an official WHO (World Health Organization) classification or a ICD Code assigned.
Only the UK's altered version does that:( And that needs corrective action, if it hasn't already taken place.

~

Lastly, while I applaud the initiative of the researchers below and the WPI overall, this XMRV is not a ~new~ idea; it has been potentially identified in prostate cancer, etc., as well. This work (below) only highlights:

    "...an association between XMRV and CFS but does not prove that XMRV causes CFS."


Many more studies will need to be done, including much larger ones, adhering the entire while to very strict scientific protocols. Other researchers will need to replicate the process(es) and end up with the very same results, and so on.... This could take years....

So all of you who fit the 'CFS' construct (and does anyone, really??) - temper your burgeoning excitement with practicality and reasonable doubt and adopt a wait-and-see attitude.

Those of us who are diagnosed with ME, G93.3, are mildly happy for you today. But we must and will continue to vigorously advocate for scientific research of our own illness, which is not classified under 'fatigue', but rather under CNS, Brain,  Neuro.......

LK Woodruff, USA
lkw777@charter.net

Permission to repost in it's entirety.


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

 

  U.S. Department of Health and Human Services
  NATIONAL INSTITUTES OF HEALTH NIH News
  National Cancer Institute (NCI)
 
http://www.cancer.gov/newscenter/


  Embargoed for Release:
  Thursday, October 8, 2009, 2 p.m. EDT


  Consortium of Researchers
  Discover Retroviral Link to
  Chronic Fatigue Syndrome

  
  Scientists have discovered a potential retroviral link
  to Chronic Fatigue Syndrome, known as CFS, a
  debilitating disease that affects millions of people in
  the United States. 

  Researchers from the Whittemore Peterson Institute
  (WPI), located at the University of Nevada, Reno,
  the National Cancer Institute (NCI), part of the
  National Institutes of Health, and the Cleveland
  Clinic, report this finding online Oct. 8, 2009, issue
  of Science.

 

  "We now have evidence that a retrovirus named
  XMRV is frequently present in the blood of
  patients with CFS. This discovery could be a major
  step in the discovery of vital treatment options for
  millions of patients,"

  said Judy Mikovits, Ph.D., director of research for
  WPI and leader of the team that discovered this
  association.  Researchers cautioned however, that
  this finding shows there is an association between
  XMRV and CFS but does not prove that XMRV causes
  CFS.


  The scientists provide a new hypothesis for a
  retrovirus link with CFS. The virus, XMRV, was first
  identified by Robert H. Silverman, Ph.D., professor in
  the Department of Cancer Biology at the Cleveland
  Clinic Lerner Research Institute, in men who had a
  specific immune system defect that reduced their
  ability to fight viral infections.


  "The discovery of XMRV in two major diseases,
  prostate cancer and now chronic fatigue
  syndrome, is very exciting.  If cause-and-effect is
  established, there would be a new opportunity for
  prevention and treatment of these diseases,"

  said Silverman, a co-author on the CFS paper.


  Commonality of an immune system defect in patients
  with CFS and prostate cancer led researchers to look
  for the virus in their blood samples.

  In this study, WPI scientists identified XMRV in the
  blood of 68 of 101 (67 percent) CFS patients.  In
  contrast, they found that eight of 218 healthy people
  (3.7 percent) contained XMRV DNA.

  The research team not only found that blood cells
  contained XMRV but also expressed XMRV proteins at
  high levels and produced infectious viral particles.

  A clinically validated test to detect XMRV antibodies
  in patients' plasma is currently under development.


  These results were also supported by the
  observation of retrovirus particles in patient samples
  when examined using transmission electron
  microscopy. The data demonstrate the first direct
  isolation of infectious XMRV from humans.


  "These compelling data allow the development of
  a hypothesis concerning a cause of this complex
  and misunderstood disease, since retroviruses are
  a known cause of neurodegenerative diseases
  and cancer in man,"

  said Francis Ruscetti, Ph.D.,  Laboratory of
  Experimental Immunology, NCI.


  Retroviruses like XMRV have also been shown to
  activate a number of other latent viruses. This could
  explain why so many different viruses, such as
  Epstein-Barr virus, which was causally linked to
  Burkitt's and other lymphomas in the 1970s, have
  been associated with CFS.

  It is important to note that retroviruses, like XMRV,
  are not airborne.


  "The scientific evidence that a retrovirus is
  implicated in CFS opens a new world of
  possibilities for so many people,"
                                             
  said Annette Whittemore, founder and president
  of WPI and mother of a CFS patient. 

  "Scientists can now begin the important work of
  translating this discovery into medical care for
  individuals with XMRV related diseases."


  Dan Peterson, M.D., medical director of WPI added:

  "Patients with CFS deal with a myriad of health
  issues as their quality of life declines.  I'm excited
  about the possibility of providing patients, who are
  positive for XMRV, a definitive diagnosis, and
  hopefully very soon, a range of effective
  treatments options."

  ~

  The Whittemore Peterson Institute (WPI) for Neuro
  Immune Disease exists to bring discovery,
  knowledge, and effective treatments to patients with
  illnesses that are caused by acquired dysregulation
  of both the immune system and the nervous system,
  often resulting in lifelong disease and disability.

  www.wpinstitute.org.


  The Lerner Research Institute is home to Cleveland
  Clinic's laboratory, translational and clinical
  research.

  Its mission: to promote human health by
  investigating in the laboratory and the clinic the
  causes of disease and discovering novel approaches
  to prevention and treatments; to train the next
  generation of biomedical researchers; and to foster
  productive collaborations with those providing clinical
  care.

  More than 1,200 people in 11 departments work in
  research programs focusing on cardiovascular, cancer,
  neurologic, musculoskeletal, allergic and
  immunologic, eye, metabolic, and infectious disease.

  The Institute also is an integral part of the Cleveland
  Clinic Lerner College of Medicine of Case Western
  Reserve University.


  The National Cancer Institute (NCI) leads the
  National Cancer Program and the NIH effort to
  dramatically reduce the burden of cancer and improve
  the lives of cancer patients and their families,
  through research into prevention and cancer biology,
  the development of new interventions, and the
  training and mentoring of new researchers. For more
  information about cancer, please visit the NCI Web
  site at
http://www.cancer.gov


  or call NCI's Cancer Information Service at 1-800-4-CANCER
  (1-800-422-6237).


  The National Institutes of Health (NIH) -- The
  Nation's Medical Research Agency -- includes 27
  Institutes and Centers and is a component of the
  U.S. Department of Health and Human Services. It is
  the primary federal agency for conducting and
  supporting basic, clinical and translational medical
  research, and it investigates the causes, treatments,
  and cures for both common and rare diseases. For
  more information about NIH and its programs, visit

  www.nih.gov
  ~

  REFERENCES:

  Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA,
  Hagen KS, Peterson DL,  Ruscetti SK, Bagni RK,
  Petrow-Sadowski C, Gold B, Dean M, Silverman RH,
  and Mikovits JA. Detection of Infectious Retrovirus,
  XMRV, in Blood Cells of Patients with Chronic Fatigue
  Syndrome. Online October 8, 2009. Science.

  ~

  CONTACTS:

  NCI Office of Media Relations, 301-496-6641,
 
ncipressofficers@mail.nih.gov
  
  Whittemore Peterson Institute, Frankie Vigil,
  775-336-4555,
Frankie.vigil@rrpartners.com
  
  Cleveland Clinic Corp. Communications, Megan F.
  Pruce, 216-445-7452,
prucem@ccf.org

  ~

Open letter to EMEA from LK Woodruff

10/17/2009
 
To the EMEA:
 
This XMRV study was done based on patients fulfilling the
CFS (R53.82 Fukuda, et al) criteria for 'fatigue', as well as the
(also made-up) 'ME/CFS' Canadian Criteria, which is not
acknowledged at all by the WHO, so has no formal classification
or ICD Code.
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
So to use the term ME, or refer to ME (G93.3, Neurogenic)
as being involved with this study is a glaring error.
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
Once again, various vested interests throughout the world are
using their own terms and adding their own 'spin' to this story.
This is how myths, rumours, misperceptions, and opinions
manage to stay alive.
 
It is also how a very large 'blended' patient co-hort not only
continues to exist, but grows. Always remember that a mixed
patient group will always and only produce mixed data. And
mixed data will not help anyone. Only by studying stringently
identified participants and adhering tightly to strict
scientific protocols will PURE DATA ever be produced.
 
And this is the only way illness etiology and pathphysiology
will be discovered and unraveled.
 
Far too much casual lumping and blending has taken place,
resulting in sloppy and piecemeal efforts done on a mixed
group. Terms/names, criterias and definitions, classifications
and codes have been ignored. It is time for everytime to get
serious and start paying far greater attention to the DETAILS.
To do it right, starting now. 
 
If you wish to be considered serious advocates for ME, G93.3,
then you MUST pay exquisite attention to all of the finer details.
Those of us who are diagnosed with ME will accept no less,
any longer.
 
Most sincerely,
 
LK Woodruff, USA
 
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
 
Date:    Fri, 16 Oct 2009 14:41:01 +0100
From:   
info@EURO-ME.ORG
Subject: ACT, NOT, RES: European ME Alliance Press release

The European ME Alliance (EMEA) wish to congratulate the =20
Whittemore-Peterson Institute
for the painstaking, professional and groundbreaking work which its =20
staff have performed,
along with the National Cancer Institute and the Cleveland Clinic, =20
which has resulted in
the publication of the findings of a novel virus XMRV in causing or =20
influencing ME.

The members of EMEA recognise that the staff at WPI are performing =20
research of the
highest quality.

The publication of this research in Science magazine is itself an =20
amazing achievement.

This work has been achieved in an amazingly short period of time and =20
the tenacity,
dedication and sheer excellence of the WPI has brought hope to =20
millions of people,
patients, carers and friends, in Europe and further afield.

EMEA announces its continued full support for WPI and hopes to be able =20
to become a
stronger partner in the future


Signed by all members of the European ME Alliance

Belgium - ME/CFS Association (Nieuwrode, Belgium)
Denmark - ME-NetDK
Ireland - Irish ME Trust
Germany - Fatigatio e.V.
Norway  - Norges ME-forening
Spain   - Liga SFC
Sweden  - Riksf=F6reningen f=F6r ME-patienter
UK      - Invest in ME

The European ME Alliance
www.europeanmealliance.org

Scientists find virus link to chronic fatigue; comments by LK Woodruff

This article is a more balanced view of the findings, albeit still with some curious statements. I've bolded and highlighted a few pertinent parts, and also inserted a few comments, and ended with a remembrance of a similar situation, at the end. LV

Scientists find virus link to chronic fatigue

In what may prove to be the first major breakthrough in the fight against the mysterious disorder known as "chronic fatigue syndrome" (CFS), researchers reported Thursday that they have found traces of a virus in the majority of patients with the disease.

of the very few tested.... See the small numbers listed below. LV

The same virus has previously been identified in at least a quarter of prostate tumors, particularly those that are very aggressive, and has also been linked to certain types of cancers of the blood.

It remains possible that the virus, known as xenotropic murine leukemia virus-related virus, or XMVR, is a passenger virus that infects patients whose immune systems have been suppressed by other causes.

But the new findings were sufficiently startling that the National Cancer Institute called together a group of experts in August to consider its potential effect on public health.

"We are in the very early days," said Stuart LeGrice, director of the National Cancer Institute's Center of Excellence in HIV/AIDS and Cancer Virology, who organized the meeting but was not involved in the new study. "The data need to be confirmed and repeated. ... We need to know that it is a cause and not just a passenger. In a sense, we are at the same stage as we were when HIV was first discovered. Hopefully, we can take advantage of what we learned from working with it."

Chronic fatigue syndrome, which affects at least 1 million Americans and more than 17 million people worldwide, is characterized by debilitating fatigue, chronic pain and depression, as well as other symptoms.

I have no idea where these numbers come from, but they continue to grow exponentially with each publication:( LV

Many doctors have argued that it is not a real disorder because there have previously been no biochemical markers that characterize it. The only effective treatments are behavioral changes and antidepressants, and they are of limited benefit.

!!!!! LV

CFS has been theoretically linked to a variety of other viruses, including Epstein-Barr virus (EBV) and human herpesvirus-6, but none has been found in a significant proportion of patients. Thursday's findings could explain why. Like HIV, which causes a constellation of symptoms, XMRV is a retrovirus, and retroviruses are known to suppress the immune system, making it easier for other viruses to establish themselves in a human body.

NOTE: ME, G93.3, has long been thought to be caused by an enterovirus.... LV

Dr. William Reeves, who heads CFS research at the U.S. Centers for Disease Control and Prevention, cautioned against racing to any conclusions based on the new findings, even though he characterized them as promising.

"It is almost unheard of to find an association of this magnitude in any study of an infectious agent and a well-defined disease, much less an (ill-defined) illness like chronic fatigue syndrome," he wrote in an e-mail.

And actually, CFS remains a 'syndrome' - not an illness, or a disease (according to the WHO vernacular). LV

It is extremely difficult to prove causation with a ubiquitous virus like XMRV, and it "is even more difficult in the case of CFS, which represents a clinically and epidemiologically complex illness," he added.

Oh, but CFS is NOT a clinically and epidemiologically complex illness. It's really quite tiny. Read what it is, and isn't, at:

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

The ever-increasing numbers of patients being given that label of 'CFS' actually--when tested and evaluated much more thoroughly--are proving to have many, many other maladies and illnesses, instead. And THAT is at the CRUX of this confused debacle!! LV

The new study was organized by Judy Mikovits, director of research at the Whittemore Peterson Institute, a CFS-oriented facility on the campus of the University of Nevada, Reno.

The team reported in the online version of the journal Science that they found the virus in 68 of 101 blood samples from patients with CFS, but in only eight of 218 healthy patients.

A very tiny and introductory study only. LV

In a telephone interview, Mikovits said they have also found antibodies against the virus in 95 percent of the CFS patients.


http://www.twincities.com/ci_13519746

By Thomas H. Maugh II
Los Angeles Times

Comments by LKW in respeonse to comments by a co-cure poster

Subject: NOT: On Replication of WPI findings

It's been stated that the blood from research came from patients

"fulfilling the 1994 CDC Fukuda Criteria for Chronic Fatigue Syndrome and
the 2003 Canadian Consensus Criteria for Chronic Fatigue Syndrome/myalgic
encephalomyelitis (CFS/ME) and presenting with severe disability"

So any replication of this study must test the same cohort of patients.
 
Yes...as well as other types of patients with different illlnesses!
 
So this research also validates & insists upon the use of the Canadian
Consensus Criteria.
 
-->No. Nothing is 'validated' at this point....
 
This study only suggests a 'possibility of an association' of XMRV
with illness (which illnesses to be determined)....
 
It studied a cohort of patients diagnosed with a 'syndome' based
on 'fatigue', and also an additional cohort of patients--many of them
'self-diagnosed'--with the CC's 'ME/CFS' . This grouping is thought
by many to include patients who actually have a wide variety of 'other'
things wrong with them (thyroid, Lyme, chronic mono, and so on.)
Furthermore, 'ME/CFS' is not formally acknowledged by the WHO,
so it has been assigned no classification or ICD Code. 
 
Lastly, this study completely ignores patients diagnosed with true
ME (G93.3, ICD10 worldwide; 323.9, ICD9 in the USA) who's
illness starts, presents and ends differently from the above-mentioned
patients. Whose illness--disease, actually--is classified not under
fatigue, ill-defined, but rather under Brain, Neuro, CNS....
 
-->This study focused on blood and immune....
 
Any and all further studies will need to adhere strictly to scientific
protocols every step of the way, and be replicated by other researchers.
This will take years.
 
Epstein Barr was thought, at one time, to be the culprit in CFS.
Turned out fully 90% of the general population had been exposed
to it and showed proof in their blood. However, most folks were
unaware of being exposed and never became ill. So those studies
proved only meaningful to approx 10% then, and even they, given
and care, largely recovered.
 
Everyone needs to step back, take a deep breath, and understand 
that this one tiny study is just the very first beginnings of a long and
rigorous road ahead - which may ultimately PROVE nothing. 
 
Perspective and objectivity are required by all. Please.
 
also remember that ME, G93.3, has long been thought to be caused by an enterovirus - not a retrovirus. this, too, remains to be PROVEN, however.

and
ME has a sudden onset viral triggering event, while CFS comes on slowly (and can't even be diagnosed for 6 months, and even then only when EVERTHING ELSE has been crosssed off the list of possibilities!) and  the USA CDC--the originators and authors of 'CFS' (Fukuda, et al)--has always classified it under R53.82, and under rickettsial, vector-borne, and zoonotic - along with other illnesses like Lyme, Rocky Mt Spotted Fever, and so on..... These are all infectious illnesses. And non-viral....

20+ years have been wasted on opinions, myths, misperceptions, lack of regard for terms/names, criterias and definitions, classifications and codes.... That madness cannot continue. Science requires careful attention to details. And accurate replication, under the very same conditions, and then new ones. 
SO MUCH needs to be unraveled and PROVEN.

Large studies need to be done, using stringent protocols.
Large databases need to be established.
Other researchers in other labs will need to replicate ALL findings.
It's a huge and daunting task that will take YEARS.

And in the meantime, patients cannot be jumping to too-soon conclusions.
LKWoodruff, USA
lkw777@charter.net

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