Friday, November 19, 2010

Matching Donations for Our First-Ever Widely Circulated Press Release

*Matching Donations for Our First-Ever Widely Circulated Press Release*
* - The ME/CFS Worldwide Patient Alliance (MCWPA) -*

We have an Angel donor willing to match donations up to $1,000 for us to be
able to send a press release to all major media outlets and reporters in the
U.S. and the U.K.  This is timed to go out on the same day as the
advertisement, to bring attention to the ad, our cause and our illness.  The
cost for this news reporting service is $1,130.  That's our goal.

Our MCWPA ad is a milestone.  Never has a patient group raised this much
money or advertised in a major daily newspaper! Getting our press release
into the hands of all major media in the U.S. and U.K. would also be a
first.  Please help us reach this goal.

Any donations, large or small are so appreciated!  Thank you all for making
this happen.

Websites for learning about this major worldwide media campaign, joining as
a member, or donating to the Cause can be found at the following links:

Patient Discussion Forum:

Thank You -- The ME/CFS Worldwide Patient Alliance (MCWPA) Team

Our website address is<>
Our Patient Discussion Forum is<>

*And here is our Cause Page for FB fans:

Ask me.

Check out Products That May Help You Sleep - sleep -

Wednesday, November 17, 2010

Gearing Up for the Big Search for XMRV

Gearing Up for the Big Search for XMRV
November 17, 2010, 12:50 PM ET
By Amy Dockser Marcus

Since a group of researchers published a paper in Science last year
suggesting the retrovirus XMRV is linked to chronic fatigue syndrome,
scientists have been debating the accuracy of that finding. Now a
study designed to address that issue once and for all is moving

Clinicians who treat CFS patients, scientists and others convened
recently in New York, where virus hunter Ian Lipkin is based. Lipkin
was asked by NIH and NIAID to head up the study.

At least three labs have agreed to test fresh blood samples for XMRV.
Two labs, at FDA/NIH and the Whittemore-Peterson Institute, have
previously found XMRV or related viruses in patients. The third lab,
at the CDC, has not.

Clinicians who treat patients in different regions of the country,
including Miami, Boston, Palo Alto, and Salt Lake City, will be
collecting the blood from both healthy people and CFS patients.

Lipkin tells the Health Blog that the study focuses on whether XMRV or
other viruses in the same family are found in higher frequency in
patients with CFS.

As a starting point, everyone had to agree on how to define a CFS
patient for the purposes of the study. The issue has been highly
contentious and Lipkin says they tried to agree to criteria for
patient selection that "includes everyone's viewpoints."

The solution: the study will seek to enroll people who in addition to
meeting criteria for two widely used, symptom-based definitions of
CFS, showed signs of infection — such as a sore throat or tender lymph
nodes — around the time they developed CFS. The thought is that if
there is a viral link to CFS, it's most likely to show up in those

More work still needs to be done. The physicians participating in the
study will meet with Lipkin in coming weeks to develop a standard
checklist for evaluating patients. The scientists are still working
out a common protocol for how they handle and process the blood. But
Lipkin tells the Health Blog that everything they are doing is
designed to make it possible to finally end the debate over whether
XMRV is associated with CFS.

Treatment mistakes for 1 in 7 hospitalized Medicare patients

Researchers estimate that these types of adverse events contribute to 15,000 deaths per month or 180,000 deaths each year,

Monday, November 15, 2010

How to Keep Your Marriage Healthy When One of You Is in Pain

Oxford Review of Books on CFS/ME

Dear All

I am happy to report that "The Oxonian: Oxford Review of Books" has today
published a book review of mine entitled "Chronically Wiser" on the subject
of CFS/ME.


Good to see that the traditionally conservative Oxford University is showing
some interest in CFS/ME!

Warmest regards


Chronically Wiser

Herman Salton


Toni Bernhard
How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and
Their Caregivers
Wisdom, 2010
176 Pages
ISBN 978-0861716265

Roberta Pelletta
Stanchi si diventa: Manuale di soppravvivenza alla CFS
Turin: Seneca Edizioni, 2010
41 Pages
ISBN 978-8861222113

Imagine you are a high-flying law professor at the height of your career.
You have a happy marriage, are involved in the local community, love your
subject, and enjoy working with students. Your socio-economic position is
comfortable, and your family relationships are gratifying. In short, life is
smiling at you, and you are smiling back.

Then you go to Paris—and everything changes. A mysterious bug floors you.
Standing up becomes a struggle, noise bothers you, and you are magnetically
attracted to your bed. Except that you are too exhausted to sleep—too
exhausted, in fact, to do anything at all. You return to the classroom—but
the noise, lights, and interactions are just too overwhelming. You start
writing a paper—but the brain-fog, headache, and impaired memory allow you
to work only for a few minutes. You explain what's happening—but nobody
understands, and since you don't either, how can you blame them? Days go by
and doctors reassure you it will go away. Except that it doesn't, and ten
years later, you are still bed-bound.

This is the perfect storm that hit Toni Bernhard—and the other 17 million
people in the world who are estimated to be suffering from myalgic
encephalomyelitis (also controversially known as CFS, or chronic fatigue
syndrome). At its worst, this Kafka-esque illness is as debilitating as
late-stage cancer, multiple sclerosis, and HIV—but it is not fatal, and so
does not carry the drama (or empathy) associated with them. There is no cure
for it and patients—including children—are largely left to themselves and
their families. It can hit anybody, at anytime, anywhere in the world,
without any warning.

When doctors are baffled, friends desert you, and your life goes
upside-down, where should you turn? Buddhism, Bernhard suggests in this
compact and refreshing guide on how to manage a chronic condition. Illness
does tend to bring out a renewed sense of spirituality, but what is
interesting in Bernhard's case is that hers is by no means an overnight,
illness-induced conversion: she was already a committed Buddhist before
becoming ill with ME/CFS, and she candidly admits that her illness made it
more difficult to adhere to her faith. It also made it harder to write How
to Be Sick—she did so from her bed, laptop on her knees, printer at hand, a
few minutes a day, year after year. The result is an inspiring and
optimistic guide on how to be sick—on how to live a life of equanimity
despite the limitations of a chronic illness.

Bernhard believes that Buddhism can help. Suffering (dukkha) is the First
Noble Truth of the Buddha, while kindness (metta) and joy in the joy of
others (mudita) should be the pillars of our lives. Humans are inevitably
subject to disease and death; our lives are in constant flux and the only
way to prepare for change, so Buddhism dictates, is to cultivate compassion
(karuna) and equanimity (upekkha) for ourselves and others.

Were this the end of the story, How To Be Sick would be interesting but
hardly original. Instead, Bernhard goes on to admit that those Buddhist
tools failed to assist her when she needed them most. She just could not
muster enough energy to meditate. As such, she had to adapt Buddhism to her
specific chronic condition, rather than the other way around. Feeling
compassion for others, she soon discovered, is far easier when you are well
than when you are confined to bed and looking, from your window, at people
happily going about their business. The envy can be overwhelming.

But this can and should be corrected. Frustration about an illness that
doctors don't fully understand should be greeted with the hope that sooner
or later they will. The obvious complaint "why me?" should be countered with
the simple question "why not me?" And physical pain should be tackled with
what the Buddha defines as "patience endurance" (khanti). Bernhard's
approach is far from dogmatic: try this or that meditation practice, she
suggests, and if it doesn't work or you are too fatigued, switch to another.
Her contribution is refreshing because she does not want you to convert to
Buddhism—she just wants you to feel better.

On the face of it, Pelletta's book is shorter and more concise. She looks at
simple everyday problems and her work has little to do with the transcendent
state of mental well-being sought by Bernhard. Where Bernhard takes great
pain to explain her subject and to gain her reader's attention, to the point
of seeming didactic, Pelletta writes in short, deliberate sentences like
precision bullets—hitting the target and holding firm in the reader's mind.

These differences aside, however, the two books are strikingly similar.
Pelletta, too, was hit by the "ME/CFS storm" in a way that reminds us of
Bernhard's Paris trip. A Brussels-based parliamentary interpreter for over
30 years, Pelletta was abruptly forced to abandon her job and is, years
later, still severely limited in her daily activities. Other issues she
tackles will be very familiar to Bernhard's readers: the apathy of the
medical community; the problems experienced in attempting to explain ME/CFS
to family and friends; the loneliness that being house-bound imposes; the
loss of earning and professional gratification; and the frightening
uncertainty associated with a condition that could last for years.

Yet the most visible convergence in these two volumes comes in their
conclusion: accept with equanimity whatever in life cannot be changed. "We
must accept our own endless powerlessness", Pelletta concludes, in
strikingly spiritual terms that Bernhard would likely endorse. For the
Buddha, too, was a common human being and endured severe pain without

There is no doubt that ME/CFS took a heavy toll in the life of both Bernhard
and Pelletta. They have experienced the skepticism of doctors, the
insensitivity of acquaintances, the bewilderment of friends, and the
breakdown of families. But illness has also shown them something new—human
fragility—and given them the tools to better deal with it. It has made them
wiser, sooner. The reader, too, is left wiser by their books and by the
message of courage that they convey.

Dr Herman Salton graduated  from Exeter College, Oxford with an MPhil in
International Relations, which he gained while suffering with ME/CFS. He is
the author of two books on law and politics, and is working on a third one.

Want to be happy? Stop trying to be perfect -

The hardest thing for many CFS patients is to stop trying to be perfect.

Sunday, November 14, 2010

Joe Barton takes on Fluorescent vs. Incandescent Bulbs

One of the prior articles on the subject, with links:
Many of us with neurological conditions have problems with fluorescent bulbs.  The manufacturers say they've fixed the problems in the newer generation, but I'm still hearing negative reports from patients and teachers.
Not to mention that if you drop and break a CFL -- always a concern for those of us with bad hands -- it's a toxic spill with mercury.  You're supposed to leave the room for 15 minutes (how do you do that if you live in a studio apartment and are housebound?) and then take special measures to clean up the mercury (which must be done pronto, not in two days when you feel up to it). 
When a CFL burns out, you're not supposed to put it in the trash.  Since I don't drive, I would have to pay cab fare halfway across the county to deliver each one to the recycling facility, which sort of negates the cost savings on the electricity!
Oh, yeah, and I just replaced the 60W incandescent in my kitchen with a 100W CFL so I don't have to get up on that ladder for another 5 years ... even after the CFL has been burning for several minutes and should be warmed up, it doesn't seem as bright to me as the incandescent that's supposed to be just more than half as bright.  This is a problem for those of us with tired old eyes who need brighter lights!
Address your thanks for the fight to restore incandescent bulbs to store shelves to:
Rep. Joe Barton
2109 Rayburn Building
Washington, DC 20515
(202) 225-2002
(202) 225-3052 fax