Wednesday, August 5, 2009

August CFIDS Link

August 2009

In This Issue

From the CEO
Research Matters
Treatment Matters
Advocacy Counts
You Matter
News & Notes

From the CEO's Desk

We're hearing from readers about our new SolveCFS publication, with positive feedback
and constructive critiques. CEO Kim McCleary provides some ideas about places
to locate content you might be missing from the Chronicle format.

Research Matters
Association-funded researchers continue marking progress with peer-reviewed publications. In July, Dr. Ben Katz was the lead author on an article published in Pediatrics about CFS following acute Epstein-Barr virus (EBV) infection. His patient group is also being studied by Dr. Gordon Broderick.

Another study just out in the Journal of Pain by Drs. Alan and Kathy Light may identify
a blood biomarker for a subset of CFS patients. Dr. Suzanne Vernon describes the study and its exciting findings.

1,200 patients participated in our online Symptom Survey. Dr. Suzanne Vernon presents
some early results of what respondents said about factors they believe made them sick and factors that contribute to their symptoms over time.

Treatment Matters 

Several published studies highlight the negative effects of exertion on CFS patients.
Learning to pace activity is a key strategy to reduce the push-crash cycle of overactivity
and relapse. It may also help reduce spikes of certain chemicals in the body that
provoke symptoms. Bruce Campbell, PhD, shares ways to identify and maximize the energy you have.

Conserving energy in every day tasks can help reserve your energy for more enjoyable
activities. Here's a list of tips from a past issue of the CFIDS Chronicle.

Advocacy Counts

This month, members of Congress will be back in home districts/states and many will
hold "town meetings" or "listening sessions" for constituents. Take advantage of local opportunities to get CFS on the record.

The bill that funds medical research is the largest non-defense spending bill considered
by Congress. Click here to read language about CFS programs just passed by the Senate.

The CFIDS Association has joined the Alliance for Taxpayer Access as part of its effort to "free the data" on CFS that has been created by CDC and other agencies
using public funds. Ask your U.S. Senators to support the Federal Research Public
Access Act.

You Matter

Stories from two women in Japan, Ms. Kazue Hirano and Ms. Motoko Haraba, illustrate how similar their experiences are to Americans living with CFS.

We invited Association Facebook fans to share their favorite memory aids with readers.
Here are some tips for keeping track of appointments, meds and other daily tasks.

This month we invite readers to help us fine-tune our content based on your life
circumstances, experiences and opinions. Please complete the 25-item survey at
Only one response per computer; the survey will close on August 31. Responses are
completely anonymous.

News & Notes

SolveCFS, our new print publication, was mailed to donors and members on June 22.
You can request a copy be mailed to you by sending a message to
or you can read it (and recent updates) online. 

The "Faces of CFS" traveling exhibit has three stops this fall. Check out the dates and locations for upcoming venues near Detroit, Nashville and
San Diego.

A decision on approval for Ampligen has been delayed again due to staffing issues at the Food & Drug Administration (FDA). According to a July 22 report, the
drug's manufacturer expects to receive word on the application to market the drug for CFS this fall. If approved, it will be the first for CFS.

We're updating our  H1N1 guide  [] as new info is issued. CDC is making recommendations about the flu vaccine that prioritize people with chronic conditions.


Our Mission:
For CFS to be widely understood, diagnosable,curable and preventable.

Our Strategy:
To stimulate research aimed at the early detection, objective diagnosis and effective
treatment of CFS through expanded public, private and commercial investment.

Our Core Values:
To lead with integrity, innovation and purpose.

Tuesday, August 4, 2009

Great News!

In what could be a groundbreaking discovery for CFS, Alan R. Light, PhD, and his team at the University of Utah Health Sciences Center have identified genes that increase in activity following moderate exercise.
The gene activity increases persisted for up to 48 hours after exercise in the CFS patients. As anticipated with moderate exercise, there was no gene activity increase in the healthy subjects. The activity of these nine genes could be used to distinguish/identify most of the CFS patients from the control subjects.

Monday, August 3, 2009

Injustice in Disability Benefits

Oprah's show today was about super-obese people, those who weigh 600+ pounds.
My SSDI lawyer was representing one of them, and simply was going to tell the judge that the gal (a) physically could not leave home to attend medical exams and the court hearing, (b) was too big and would break the available chairs, and that was likely to be enough to get her claim approved. 
My lawyer couldn't explain the injustice that someone who brought their disabling condition on themselves would get benefits and someone who didn't do a thing to cause it was going to have to fight for a decade.  
That gal, all she had to do was stop eating, and she would not be disabled any more – why don't the judges suggest that to her in the same derogatory tone of voice they use to tell me that I just need to get counseling and go back to work?  She's the one who needs counseling, but she gets enabled with money to buy more food to feed her addiction; I have a virus and am told that if I don't have money for food, I should get a job.
The letter I received scheduling my medical exam was quite blunt, that if I didn't attend, they'd assume I was not disabled, and I would not receive benefits.  I was essentially housebound at the time; that didn't matter.  I was still told to show up or else.
Why the different rules for different medical conditions?  If I needed to be brought to the hearing in a wheelchair because I couldn't walk that far without collapsing, then that was what I needed to arrange for, not just tell them "I can't come", because "the judge needs to see you in person".  So I went, and kept telling the judge that I was dizzy and about to pass out, I needed to put my head down, and then was given the illogic that my ability to get to a hearing and sit with my head down for most of the hour proved that I could get to an office and sit up for 8 hours at a desk, fully functional. 
Maybe if I hadn't put my head down, so I would actually pass out, that would've rated a mention in his decision?


Viral Persistence

Although rather technical, this study gives a good overall look at theories
of viral persistence and with the goal of understanding basic principles in
viral pathogenesis and ...resolve persistent infections of humans. Oldstone
MBA (2009) Anatomy of Viral Persistence. PLoS Pathog 5(7): e1000523Ingredients
of a Chronic Viral Infection

The many millions of humans who have life-long virus infections represent a
major health issue for the 21st century but also a unique opportunity for
investigative virologists.

For persistent virus infections to endure, two ingredients are essential.

The first is a unique strategy of viral replication; that is, instead of
killing its host cell, the pathogen causes little to no damage so it can
continue to reside in those cells.

The second requirement for persistent virus infection is an immune response
that does not react to or remove virus-infected cells.

Overall, our knowledge of how viral genes and cellular factors interact to
allow persistence to occur is incomplete. Although our libraries contain
volumes of facts on this subject, many physiologic functions and
interrelationships of viral genes with host genes that establish persistence
remain, in large part, unknown.

We do know that acutely infected cells express viral peptides, which, when
attached to host major histocompatibility complex (MHC) molecules on their
surfaces, signal the immune system to kill such cells. However, viruses
apply numerous avoidance strategies to persist.

One is direct selective pressure to suppress the infected host's innate
and/or adoptive immune system that would otherwise destroy them (reviewed
1,2,3). For example, viruses can alter or interfere with the processing of
viral peptides by professional antigen-presenting cells, thereby restricting
expression of MHC/peptide complexes on cell surfaces, a requirement for
activation and expansion of the T cells that normally remove infected cells.

Additionally, viruses can downregulate co-stimulatory and/or MHC molecules
also required for T cell signaling and expansion; they can inhibit the
differentiation of antigen-presenting conventional dendritic cells (cDCs),
and can infect effector T and B cells directly. Similarly, to persist in
infected cells, viruses can disrupt the processing or migration of viral
peptides or viral peptide/MHC complexes to the cells' surface, thereby
removing the recognition signals for activated killer T cells.

Finally, viruses that persist frequently infect neurons, which have defects
in TAP, a molecule required for the translocation of viral peptides to
endoplasmic reticulum (ER)4,5 . Perhaps neurons can also actively prevent
cytotoxic T lymphocytes (CTLs) or natural killer (NK) cells from
degranulating and thereby limit the activity of such virus-removing effector
cells. Since neurons are essential to health but rarely regenerate when
destroyed, Darwinian selection likely caused them to evolve mechanisms to
avoid immunologic assault. Such events would allow infected neurons to
escape immune recognition and live, as well as allow viruses to persist in a
neuronal safe house...

The full study is available here:

Other articles of similar nature that while not specifically about ME/CFS
include many of the principles of biomedical research involving ME/CFS

Viral Control of Mitchondrial Apoptosis (cell death)

Duca KA, Shapiro M, Delgado-Eckert E, Hadinoto V, Jarrah AS, et al. (2007) A
Virtual Look at Epstein–Barr Virus Infection: Biological Interpretations.
PLoS Pathog 3(10): e137. doi:10.1371/journal.ppat.0030137

The possibility of using computer simulation and mathematical modeling to
gain insight into biological systems is receiving increased attention.
However, it is as yet unclear to what extent these techniques will provide
useful biological insights or even what the best approach is.

Epstein–Barr virus (EBV) provides a good candidate to address these issues.
It persistently infects most humans and is associated with several important
diseases, including cancer.

We have developed an agent-based computer model/simulation (PathSim,
Pathogen Simulation) of EBV infection. The simulation is performed on a
virtual grid that represents the anatomy where EBV infects and persists.

The simulation is presented on a computer screen in a form that resembles a
computer game. This makes it readily accessible to investigators who are not
well versed in computer technology. The simulation allows us to identify
switch points in the infection process that direct the disease course
towards the end points of persistence, clearance, or death, and identify
conditions that reproduce aspects of EBV-associated diseases.

Such simulations, combined with laboratory and clinical studies and animal
models, provide a powerful approach to investigating and controlling EBV
infection, including the design of targeted anti-viral therapies.
* * *
I will note that when I finally got sleeping pills that put me to sleep for 8 hours every night without fail, after a few months my immune system regenerated enough to beat back the virus, with 6 months of a 101 fever. 
I am still fighting off the effects of the damage caused by several years of sleeping only 2 hours a night, but I definitely feel better than I did before those sleeping pills.

Sunday, August 2, 2009

Words to Live By

"Life may not be the party we hoped for,
but while we are here we might as well dance!"
While I'm not one of those who believes that CBT will "cure" CFS, I do think that some people with CFS would benefit from counseling to learn to cope with the changes wrought by the illness.
Many of us were very active people – hikers, marathoners, even professional/Olympic athletes – before getting sick.  Sitting down is simply not in our nature, much less lying down, so it's especially tough for us to get a disease like this that brings life to a screeching halt.
In my youth, I was a dancer.  We did a lot of performances at nursing homes, where the audience participation portion was a challenge because of the various debilities of the patients.  Fortunately, our group had a lot of creative minds who figured out there are ways to dance even if you're in a wheelchair, as well as ways to be danced with.
I've seen wedding photos where the father-daughter dance was performed with the daughter sitting on dad's lap while he propelled his wheelchair around the floor, as well as with the bride perched on the armrest while the groom wheeled them around.
So, put your mind to it and figure out alternate ways of having fun.  It may be finding some exercise that can be performed lying down, or something like yoga that keeps you flexible without exhausting you.
As I've had to explain to many people, if they'd asked my hobbies before I got sick, I would've mentioned things like volleyball, baseball, and hiking in the nearby mountains. Now, they're watching other people play baseball, listening to music and reading.  I do a bit more physical activity than I probably should (walking and housework), and pay the price for it afterward, but that's the best compromise I can make.
Similarly, my ultimate career goal is now out of reach because of my health, but I found something else to do that fulfills my need to succeed.  One of our most prolific CFS activists is entirely bedridden and dependent on others.  Just be creative and figure out how to make the best of your situation.