Charlotte CFS/ME/FM Support Group Newsletter

for October 22, 2009

 

Hi Everyone,

 

I've been sent this article several times and I'd seen it for myself as well so I'd better let you know about it if you don't already:

 

Dr. T On This Friday's The Dr. Oz Show

Dr. Teitelbaum will join Dr. Mehmet Oz on his new television program, The Dr. Oz Show, this Friday October 23. Please tune in to watch as they discuss CFS, fibromyalgia and Dr. T's "SHINE Protocol."

To find a program time and channel in your town, see local listings for The Dr. Oz Show. If you'd like to learn more about Dr. Oz, please visit the Dr. Oz website.

Dr. Oz with Dr. T

 

Don't  forget our November meeting is Dr. Jeffrey Ewert, neuropsychologist who will have some very informative information for us. My reminder newsletter will  have all the pertinent information regarding time, etc.

 

More on XMRV thanks to Co-Cure

 

By Suzanne D. Vernon, PhD
Scientific Director, the CFIDS Association of America

http://www.facebook.com/note.php?note_id=3D185660730538&ref=3Dmf


The announcement on October 8, 2009, that an infectious retrovirus
called XMRV (xenotropic murine leukemia virus-related virus) was
linked to CFS, could be the game-changing scientific event we have
been waiting for. Whether XMRV provides the long-awaited causal link
will depend on the findings described in the Science paper being
replicated by another laboratory in another group of CFS patients. To
help clarify what we know, let=92s review the findings.

Dr. Judy Mikovits and her team at the Whittemore Peterson Institute
for Neuro-immune Disorders (WPI) made a very insightful connection
three years ago. XMRV was first described in prostate cancer in 2007
by investigators at the Cleveland Clinic, who also reported that
XMRV-positive prostate cancer patients have alterations in RNase L, an
antiviral immune system pathway. The WPI investigators knew that RNase
L activity is also altered in blood cells from CFS patients and they
made the decision to look for XMRV in CFS patients with this immune
defect.

When scientists want to find a virus, we look for it in the sickest
individuals because often this is where there is likely to be the
highest levels of a virus, if present. Dr. Dan Peterson has been
caring for and researching CFS patients since the 1984 Incline Village
outbreak, so he identified CFS patients with prolonged disabling
fatigue, cognitive impairment, and documented laboratory immunological
abnormalities (including altered RNase L activity) to hunt for XMRV.

The WPI laboratory team detected XMRV sequences in 68 of 101 (67%) CFS
patients tested and in 8 of 218 (3.7%) healthy control subjects. The
Cleveland Clinic confirmed the presence of XMRV in a subset of these
same CFS cases, 7 of the 11 samples from WPI. The Cleveland Clinic
researchers found that the CFS XMRV was similar to prostate cancer
XMRV, and not a mouse virus (murine leukemia virus) that could have
been a contaminant explaining the discovery.

The investigators designed several laboratory tests to understand
XMRV. They looked to see if XMRV was expressed in peripheral blood
mononuclear cells (PBMCs) of CFS patients. PBMCs circulate throughout
the entire system and can be important =93sentinels=94 for processes
occurring in the body. PBMCs from 19 of 30 CFS patients expressed XMRV
proteins compared to 0 of 16 PBMC samples from healthy controls. They
also wanted to know which cells harbored XMRV; they found it in T and
B cells in the blood of one CFS patient. The investigators looked to
see if the XMRV from CFS patients was infectious. Both blood cells and
plasma (the cell-free fraction of blood) from XMRV-positive CFS
patients were able to transmit this virus to a susceptible cell line,
indicating the virus could be transmitted in laboratory culture.
Finally, they wanted to know if XMRV stimulated the immune system to
produce antibodies. Plasma from 9 of 18 CFS patients had antibodies
that reacted with a virus protein similar to that found in XMRV,
compared to no reaction from plasma of 7 healthy controls.

This Science paper tells us that XMRV plays a possible role in CFS
pathogenesis in these CFS patients. How much we can generalize these
findings to other CFS patient populations? That answer will depend on
the results of replication studies.

The design of replication studies should include CFS patients who are
similar to those selected by Dr. Peterson and reported in the Science
study. Unfortunately, the details about the CFS patients were not
sufficient to enable independent investigators to select similar CFS
patients. For example, we need to know the age, sex, duration of
illness, medical history, and medication use =96 to name a few
characteristics =96 of the studied patients to select CFS patients who
are as similar as possible to the original group. We also need to know
something about the healthy control subjects, since there is nothing
in the paper or supplemental materials that describes how they were
selected. Independent replication studies should also include patients
with mild and moderate CFS, at least one chronic disease control group
(e.g., multiple sclerosis, lupus) and sex and age-matched healthy
controls. We are actively working with several independent research
groups to expedite these studies.

While these exciting studies of XMRV continue, the CFIDS Association
continues its support of our funded investigators. It=92s important to
remember that HIV was first linked to AIDS in 1983, yet worldwide
research on HIV continues today. Our funded investigators=92 research on
why Epstein-Barr virus (EBV) triggers CFS, whether ion-channel
receptors are markers of fatigue, why CFS patients have higher rates
of leaky gut, why CFS patients have slow blood flow to the brain, why
CFS patients have metabolic disturbances in the brain, and how we can
bring this information, as well as XMRV, together using powerful
computational tools are all important as we work together to solve
CFS.

 

 

Date:    Fri, 16 Oct 2009 09:11:45 -0700
From:    "Deborah Waroff
         <debo@tiac.net>..........................................via Co-Cure
         Moderator" <co-cure_moderator@CHARTER.NET>
Subject: NOT: Newsweek on Air

Moderators note:

This is a podcast which contains lengthy political and other news before
you reach the part of the podcast on CFS. The subjects of the podcast are:
The Nobel President And Noble Veep, Afghan Debate, Researcher Reviled And
Chronic Fatigue, Man Of Taste, Scarlet Letterman, Archive - Negative
Campaigning NOA

Click on the "on" button below Newsweek Broadcast 10/11/2009.

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


From: Deborah Waroff <debo@tiac.net>

Newsweek on air

I was a guest on Newsweek on air in the program for the week of October 11
for about one and a half minutes, talking about my development of ME/CFS,
its miseries, and my interest in any future
trial based on the recent  retrovirus discover.

You can hook up with this at
http://www.podcastbunker.com/Podcast/Podcast_Picks/Newsweek_On_Air/

Or you can download from I-tunes

 

Chronic Pain - Share and Support E-Newsletter

Many, many interesting topics.

http://www.healthcentral.com/chronic-pain/poll-of-the-day.html?ic=6042

 

 

More from Co-Cure  

 Date:    Fri, 16 Oct 2009 15:06:56 -0400
From:    Jerry <rescindinc.org@GMAIL.COM>
Subject: Notice, Act: Dr. Klimas makes a powerful statement!

RESCIND would like to emphasize what we feel are probably the two most powerful quotes on record in M.E. (C.F.S.) history...

Dr. Nancy Klimas as quoted from the Q & A New York Times article a Virus - the
Cause of Fatigue Syndrome? - posted online Oct 15, 2009

http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/



"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V.  patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if  I had to choose between the two illnesses (in 2009) I would rather have H.I.V."

Dr. Marc Loveless as quoted by Tom Hennessy from A Brief History of the Name
Change Movement

http://www.rescindinc.org/history.htm


Dr. Shelekov looked puzzled and maybe a little skeptical.  But Dr. Marc Loveless, sitting next time to him said, "Dr. Shelekov, this man (meaning me) is telling you the truth.  I have treated more than 2500 AIDS and CFS patients over the past 12 years. and my CFS patients are MORE sick and MORE disabled, every single day, than my AIDS patients are,
except in the last two weeks of life!"

I immediately said to Dr. Loveless that "YOU have to use that line in every speech you give on this illness for the rest of your life!" (in 1994, Dr. Loveless gave this same testimony under oath to the US Congress).

             

More from Co-cure on XMRV          
Date:    Fri, 16 Oct 2009 15:26:09 -0400
From:    Jean Harrison <jeanharrison@VERIZON.NET>
Subject: National Public Radio/ Science Friday on XMRV

More good solid publicity.

http://www.sciencefriday.com/program/archives/200910163


Jean Harrison

 

Co-Cure Article by John Herd -

 

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0910c&L=co-cure&T=0&F=&S=&P=3438

 

He winds up with a request to support the WPI as much as possible. Just to remind anyone who doesn't know by now, I have a beading web site on Etsy.com where I sell beads and jewelry. Some of the jewelry is by me some by an excellent designer friend. We donate the sales to either the WPI or during November (Lung Cancer Awareness) Lung Cancer Research. You can see those items designated at www.grannysgewelry.etsy.com or you can go directly to the WPI to donate: 

www.wpinstitute.org .

 

More From Co-Cure 

Date:    Sat, 17 Oct 2009 09:40:14 -0700
From:    cort johnson <phoenixcfs@YAHOO.COM>
Subject: MED, RES: XMRV: Hope and  Caution

Who Are Those Guys? Gazing at the distant cloud of dust raised by his dogged but mysterious pursuers Butch Cassidy turned to theSundance Kid and with some awe muttered Who are those guys? Despite
all their tricks that posse had stuck on their trail like glue. Has the Whittemore Peterson Institute posse caught one of  the slippiest preys in all medicine? Or will a significant subset of ME/CFS patients slither through their hands?Check it out in the latest blog 'XMRV: Hope and Caution' From Phoenix Rising at
http://aboutmecfs.org/blog/?p=3D954=0A=0A

Sign up to get the blog on email now as we
Check out the complete news on XMRV on the XMRV/XAND Information Center
http://aboutmecfs.org/Rsrch/XMRVIntro.aspx=0A=0A=0A      

 

 http://aboutmecfs.org/blog/?p=3D954=0A=0A (this one works)

 

 

Date:    Wed, 26 Aug 2009 14:18:50 -0700
From:    "Lydia Neilson
         <ag922@ncf.ca>...........................................via Co-Cure
         Moderator" <co-cure_moderator@CHARTER.NET>
Subject: ACT: MAY12 - further news of personal interest - Fibromyalgia World Wide Group established

Dear Friends:
A few days ago, I sent you an announcement about Mr. Daniel
Moricoli's website, a worldwide social network for those affected by
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.  This website
is designed to facilitate direct communication between members via
Video Chat, Instant Messaging, Forums, Blogs as well as private
messaging systems.

I am now also pleased to advise you that on this same website,
http://www.ME-CFSKnowledgeCenter.Com a new Fibromyalgia World Wide
Group section has also been created. This group was developed at the
suggestion of one of our own, Mrs. Camilla Lawson, as a place to
facilitate direct communication among those who are afflicted
by  Fibromyalgia.  Please go to the above-mentioned website's Main
page to conveniently access the Fibromyalgia World Wide Group.

It features an old fashioned Kitchen Table discussion group as well
as the latest Internet technology with a Video Chat Room for real
time face to face communication.

Take a moment and check it out for yourself.
Lydia

Lydia E. Neilson, M.S.M.
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667     Fax (613) 829-8518
E-mail: ag922@ncf.ca
Web:
http://www.mefmaction.net

 

 

 

Date:    Wed, 26 Aug 2009 21:31:42 +0100
From:    Stephen Ralph <stephen.e.ralph@MEACTIONUK.ORG.UK>
Subject: ACT: Interstitial cystitis and Chronic Fatigue Syndrome - Margaret Williams 26th August 2009

Permission to Repost

http://www.meactionuk.org.uk/Interstitial_cystitis_and_Chronic_Fatigue_Syndr
ome.htm

http://www.meactionuk.org.uk/Interstitial_cystitis_and_Chronic_Fatigue_Syndr
ome.pdf


Interstitial cystitis and Chronic Fatigue Syndrome

Margaret Williams 26th August 2009

That there is a concerted campaign by members of the Wessely School to
re-classify as a single somatoform disorder various disparate syndromes
whose aetiology remains undetermined cannot be disputed.

It is worth noting that the British Medical Journal recently carried a
well-structured Clinical Review of interstitial cystitis, a condition
associated with gross bladder wall changes, and painful bladder syndrome,
which exhibits the same symptoms but lacks gross cystoscopic findings (Serge
Marinkovic et al; BMJ 8th August 2009:339:337-342). The authors stated that
patients with IC are 100 times more likely to have irritable bowel syndrome
and are 30 times more likely to have systemic lupus erythematosus, and that
other associated chronic illnesses include fibromyalgia and chronic fatigue
syndrome.

 

The authors provided a compelling but unconfirmed theory - based
on evidence that the authors say represents the majority opinion of
researchers actively involved in the field - of likely autoimmune causation:
"The pathological features of bladder epithelial damage and related blood
vessel transitions in the absence of infection have been recognised for more
than 100 years. One theory is that increased permeability of the protective
glycosaminoglycan lining of the bladder epithelium causes potassium (and)
toxins to leak into the mucosal interstitium, activating mast cells and
generating an autoimmune response. Mast cells produce immune reactive
chemicals, which in turn cause generalised bladder inflammation and bladder
mucosal damage through the presence of tachykinins and cytokines.

 

These further mediate the release of histamine, tumour necrosis factor, chymase,
tryptase, and prostaglandins. Finally, inflammatory agents sensitise
bladder neurones, producing pelvic and bladder pain...Some patients have
exacerbations of their symptoms after ingesting certain food or
dinks..Urothelial cell cultures express abnormal gene variants. When
urothelial biopsies.were subjected to stretch.they released significantly
higher concentrations of ATP than control biopsies, suggesting that ATP
plays an important role in this syndrome.

 

An investigation of cultured bladder urothelial cells.showed that such cells had higher than normal concentrations of ATP, which decreases the ability of the bladder wall to
conduct potassium ions.which again indicates that impaired potassium
conduction is involved in the pathophysiology of interstitial cystitis".

Professor Simon Wessely, champion of cognitive behavioural therapy and
proponent of the psychosocial model of ME/CFS, seems to reject outright any
autoimmune or allergic component: "The article.details associations with
fibromyalgia, chronic fatigue syndrome and, strikingly, a 100-fold increased
risk of irritable bowel syndrome - all of which have good evidence for the
role, at least in part, of psychological factors in the their aetiology or
maintenance.It is highly possible that psychological factors have an
aetiological contribution to conditions such as painful bladder syndrome.
Such disorders, where physical pathology cannot fully account for symptoms,
are known as 'medically unexplained' or 'functional' (somatic) syndromes.

 

It has been proposed (citing his own Lancet paper 1999:354:936-939) that they
may be the same underlying disorder manifesting itself in different bodily
systems.Dr Marinkovic, however, despite drawing out the evidence for such a
description, seems to resist the inference, making no mention of
psychological factors even as possible contributors to the aetiology.The
experience of other functional somatic syndromes.is that a biopsychosocial
approach is the foundation of successful cognitive behavioural therapy.
This.surely deserves a place in any review (of) painful bladder syndrome"

( http://www.bmj.com/cgi/eletters/339/jul31_2/b2707#218935 ).

People must decide for themselves whether or not, based on the evidence, Dr
Marinkovic did "draw out the evidence" that IC is a functional somatic
disorder, and which of the two theories is the more convincing.


http://www.meactionuk.org.uk

 

Reminder:  Where to subscribe to the CheneyClinic.com Newsletter:

 

http://cheneyclinic.com/contact-us

 

Cheney has two sites and two modes of generating information. This mode is free. There is another for "CHENEY RESEARCH" that is very expensive to subscribe to. I wanted to be sure you understood that.

 

 

Remember to Click for Your Favorite Charity - you'll get a daily reminder - just look around and you'll find a place to click to register for the reminders - such as for Breast Cancer and other worthy causes. I just happened to sign up for the animal rescue. But there are tabs across the top of the screen to click on - click the following link (or copy it into your web browser) - then just click on the tabs. Sponsors donate to these causes for every click.

http://www.theanimalrescuesite.com/tpc/ERA_101709_ARS



Nancy Henson