Charlotte CFS/ME/FM Support Group Newsletter
for November 3, 2009
Hi Everyone,
This month's meeting November 19th will feature Dr. Jeffrey Ewert, neuropsychologist. More about that in my meeting reminder newsletter. The big news these days is all about the results of the XMRV research and finding a significant link to CFS. And who knows, it may include fibromyalgia as well as some other diseases.
For those who missed any or all of the CFSAC meeting, you can go to the following link to see both days. To go directly to Dan Peterson's presentation, move the cursor to the 1 hr and 15 min. position.
http://videocast.nih.gov/PastEvents.asp?c=39
Dr. David Bell's Latest E-Newsletter Hot off the Press Today:
http://www.davidsbell.com/index.htm#Latest
Read Cort Johnson's Latest Blog - the paragraph below is a snippet of his concern:
http://aboutmecfs.org/blog/ (if you have a problem, just click on the heading, the blog article "should appearl.)
“There are 215 conditions listed on NIH’s Estimates of Funding. Out of those 215, only one line item is projected to have less funding in 2010 than in 2009: Chronic Fatigue Syndrome. One out of 215. CFS funding is projected to drop from $4 million in 2009 to $3 million in 2010. This 25% cut in funding - especially when no other category is being cut - is emblematic of this entire Department’s lackadaisical approach to CFS.”
Dr. Pall Repositions MCS as Disease Initiated by Toxic Exposure - and a Global Epidemic
by
Dr. Martin L Pall, PhD
October 28, 2009
“It is clear, now, that MCS is physiological disease initiated by toxic chemical exposure that has been falsely claimed to be psychogenic.” –
http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=14955&B1=EM102809C
Date: Sun, 25 Oct 2009 21:15:25 -0700
From: John Herd <johnherd@JOHNHERD.COM>
Subject: ACT, MED, NOT, RES: Will Dominos Fall?
Will Dominos Fall?
John Herd;
johnherd@johnherd.com
With the advent of the Whittemore-Peterson Institute's XMRV research we may be
entering a new and more relevant era of research of our illness.
So will it put the medical fantasies about the illness to rest?
And what of the likes of Simon Wessely and Michael Sharpet whom have both
created and perpetuated those fantasies under the guise of supposed science?
For decades the psychiatric profession has been increasingly trying to elevate
itself by portraying psychiatry as pure science. They have been like the
somewhat dysfunctional child who wants to be seen on the
same tier as other medical professions, to elevate psychiatric and psychological
conditions to the same tier as medical conditions.
Let's accept for the sake of discussion that the road to credibility is pure
science.
So what of research psychiatrists such as Simon Wessely and Michael Sharpe now?
They have professed to be using that 'pure science' to define ME/CFS. We've seen
them generate lots of data shrouded in
supposedly pure science.
What happens now that Simon Wessely's and Michael Sharpe's theories about ME/CFS
and supposed science are being scientifically proven to be nothing more than
tainted data conducted and created to support preconceived flawed theories?
What does the so scientifically oriented psychiatric research sector do now that
it is becoming evident that two of their own have corrupted 'the science' so
profoundly?
Do the psychiatric sector, academic medical sector and government health sector
distance themselves from such corruptors of science?
That is usually what happens in science when an investigator is shown to have
been generating corrupted data.
Will Simon Wessely and Michael Sharpe be cut loose, on their own to go down in
history as having egg on their faces?
Or will the psychiatric research, academic medical and government health sectors
rally around to protect their own, only making the whole matter more
scientifically reprehensible?
As we enter this new era of ME/CFS research it is not enough to let the gradual
progress of science illuminate the contradictory nature of Simon Wessely's and
Michael Sharpe's decades long campaigns.
As research progresses we advocates, activists and patients must bring the
contradictions to the doorsteps of psychiatric research, academic medical,
government health, and media sectors.
Researcher's time is best spent researching. While under some circumstance we
need their voices, the are wise to for the most part steer clear of the
politics; that is up to us. If we do so effectively we can open the doors to
more needed research in the days and months ahead.
October E-News from Fibromyalgia Network
http://www.fmnetnews.com/pages/enews/Octob2009.html
The Latest ProHealth Newsletter
Topics include:
Wellness News &
Headlines
·
Dr. Bell's insights on XMRV
virus
·
US hospital mortality risks
vary 72%
·
High-fructose corn syrup &
toxicity
To read these articles:
http://www.prohealth.com/eg/EG102109/index.cfm
October 22, 2009
In
an Op-Ed piece published online Oct 20 in
The New York Times (http://www.nytimes.com/2009/10/21/opinion/21johnson.html?_r=1&emc=tnt&tntemail0=y),
Hillary Johnson depicts the CDC’s attitude toward and naming of ‘Chronic Fatigue
Syndrome’ as ‘dismissive’ and suggestive of a personality disorder rather than a
disease, beginning with the Lake Tahoe outbreak of 1984 and following it to the
present.
Hillary Johnson is the author of a book on this subject,
“Osler’s Web: Inside the Labyrinth of the
Chronic Fatigue Syndrome Epidemic.”
To read the
NY Times article online,
http://www.nytimes.com/2009/10/21/opinion/21johnson.html?_r=1&emc=tnt&tntemail0=y.
It also appeared on page A31 of the
Times print edition on
Oct 21, 2009.
Latest ProHealth E-Newsletter
Drs. Enlander and Kerr to Test 500 Blood Samples for XMRV
I went to
Dr. Enlander [in New York] this week, and they drew blood for an XMRV trial
he and
Dr. Jonathan Kerr [St. George’s University of London] are doing. They are
going to collect and test blood samples from 500 CFS patients. They couldn't
tell me how long it would take for the results to come back, but at least we
know that more research is under way, and quickly…. I believe the samples are
being shipped to London, where Dr. Kerr will be overseeing the testing. I didn't
have to pay anything, presumably because it's for a clinical trial. – S
Interesting Q&A's from a ProHealth newsletter: http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=14954&B1=EM102809C
$600K
Aussie Study of CFS/XMRV Marker Test Now Recruiting
[This
research at Bond University in Queensland] may be of interest to us Aussies.
And I thought we would be waiting for ages for something like that here.
Hopefully some sort of treatment too. - H
Is XAND Meant to Be New
Name for ME/CFS?
• I Don’t Think So.
[When the Whittemore-Peterson Institute refers to ‘the new disease entitity”
XAND - X associated neuro-immune disease] what it is saying is that XAND is a
category of disease that could include ME/CFS and other illnesses; not that XAND
would be the new name for ME/CFS alone.
In other words,
it's like saying that ME/CFS is a neurological illness; there are other
neurological illnesses, so we have not started referring to ME/CFS as
neurological illness (or NI) instead of ME/CFS. XAND basically narrows down the
type of neuro-immune disorder even more, but it is still a category that could
include other illnesses, as well. - A
• Seemingly Yes.
I think what they did was create a new disease category. However, I've also read
things like this:
"Daniel Peterson, MD, medical director of WPI, added, “Patients with ME/CFS (XAND)
deal with a myriad of health issues as their quality of life declines."
"Those with XAND (ME/CFS) and/or fibromyalgia, interested in participating in
research studies to further the development of diagnostic tests, should complete
the questionnaire available at
www.wpinstitute.org."
…Which suggest they're
trying to differentiate between cases of ME or CFS associated with the XMRV, and
cases that are not. So it really is confusing. - P
Flu Vaccine Package Inserts
- Ingredients, Warnings & Side Effects
There’s a website that lets you read the
package inserts
for all the vaccines currently scheduled to be administered to populations
worldwide for the N1N1 swine flu. You can see what each contains and does not
contain. – M
http://www.prohealth.com/em/EM102809C/index.cfm
Read about the work of P.A.N.D.O.R.A. at http://www.pandoranet.info/ . They are currently supporting the presentation by Dr. Nancy Klimas November 7th on:
Topic: The New XMRV Virus and What it Means to Chronic Fatigue Syndrome Patients
.
Interim XMRV Guidelines from National Cancer Institute
(Following the Oct. 8 publication by Lombardi et al in Science linking CFS and xenotropic murine-related retrovirus (XMRV) (see page 1), the CFIDS Association of America requested guidance from the National Cancer Institute about XMRV for persons diagnosed with CFS, their loved ones and the general public. The following are interim guidelines excerpted from a letter received from NCI director Dr. John E. Niederhuber.)
Interim XMRV Guidelines from National Cancer Institute
We at the National Cancer Institute (NCI) have great interest in these initial research findings. At present, we agree that a critical issue to be addressed is whether the exciting recent results obtained using samples from the Nevada cohort can be reproduced in additional cohorts of CFS-afflicted individuals. The NCI is striving to develop tools so that the general prevalence of XMRV in the population can be ascertained, and the association of XMRV with disease can be examined.
In the meantime, it is very important to reiterate what we do not know at this point, specifically:
It is very important to keep in mind that there is no evidence for a new increasing or spreading XMRV infection. Further, no credible evidence exists for direct transmission of either CFS or prostate cancer.
John E. Niederhuber, M.D.
Director, National Cancer Institute
U.S. National Institutes of Health
Department of Health and Human Services
October 23, 2009
Another News Report About XMRV - Listed at the WPInstitute Web Site ( www.wpinstitute.org )
http://www.wpinstitute.org/news/news_current.html
Flu Vaccine Package
Inserts - Ingredients, Warnings & Side Effects
There’s a website that lets you read the
package inserts for all the vaccines currently scheduled to be administered
to populations worldwide for the H1N1 swine flu. You can see what each contains
and does not contain. – M
|
From Cort Johnson's Phoenix Rising Web Site http://aboutmecfs.org/Rsrch/XMRVHopeCaution.aspx
From the American Academy of Pain Management Of particular interest is in article about a new "recipe" for oxycodone. http://www.aapainmanage.org/pain_management_news/NEW_newsletter/email/currents1009.html |
A Laugh a Day (Thank You Leslie)
Wednesday July 22, 2009
When you have fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS), it can be hard to keep a sense of humor. Now and then, we need to make sure we're still able to laugh, and that we don't take ourselves too seriously -- one of my favorite movie quotes is from Steel Magnolias: "Laughter through tears is my favorite emotion."
Humor can even be a good way to get other people to drop that concerned, "How are you feeling?" approach you. After I'd gone public at work with being chronically ill (though still in search of a diagnosis, after several wrong ones), some people constantly asked about my health, while others avoided casual conversation. Then I saw a Halloween costume that was a beauty queen with the title Miss Diagnosed. I wore it to work on Halloween, made up to look even sicker than I really was, and carrying a bouquet of dead flowers. It was a huge hit, everyone laughed, and things were back to normal.
Toward adding some humor to your day, I've come up with and compiled some jokes that I hope will make you smile. Most of them work for both conditions -- just change it as needed.
You know you have ME/CFS when you spray your hair with bathroom cleaner(NMH)
You know you have ME/CFS when you back up out of the garage before pressing the button to put up the garage door.(NMH)
You know you have ME/CFS when you punch a phone number into your microwave control panel. (VP)
You might have FMS/ME/CFS if:
Inspirational Corner
Editorial: With the news of finding the XRVM retrovirus, there are many opinions. Some people are hopeful and some are doubting because so many times before they've been let down. The real scientists realize that this is an extraordinary find. They have explained that they have yet to determine what the cause is - the retrovirus or another virus set off by the retrovirus. This is my paraphrasing as I understand it. Anyway, lets not give up hope. With everything step they take at the WPI, there new information to build upon.
“What does
hope do for humankind?” by saying…
Hope shines brightest when
the hour is darkest.
Hope motivates
when discouragement comes.
Hope energizes
when the body is tired.
Hope sweetens
while bitterness bites.
Hope sings when
all melodies are gone.
Hope believes
when evidence is eliminated.
Hope listens
for answers when no one is talking.
Hope climbs
over obstacles when no one is helping.
Hope endures
hardship when no one is caring.
Hope smiles
confidently when no one is laughing.
Hope reaches
for answers when no one is asking.
Hope presses
toward victory when no one is encouraging.
Hope dares to
give when no one is sharing.
Hope brings the
victory when no one is winning.”
12Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.
Nancy Henson, Editor
Charlotte Area ME/CFS/FM Support Group E-Newsletter