Friday, August 28, 2009
Wednesday, August 26, 2009
website of the Irish ME Trust (separate group from the group I'm
involved in). I know a lot of people who think that the different
editions of her book are very good. The books combine her knowledge
as both a doctor and a patient with the illness. Looking again at this
edition, it includes a lot of information about research published
thru' 1992 that one doesn't hear much about now. Tom
M.E. – Post-Viral Fatigue Syndrome – How To Live With It
M.E. – Post-Viral Fatigue Syndrome – How To Live With It – the title
of the popular book on ME by Dr Anne Macintyre is now unfortunately
out of print. We understand that there are no plans by the publishers
to re-print this book in its current form and in light of this have
been given permission by Dr Anne Macintyre to reproduce the book ,
chapter by chapter, on the Irish ME Trust website. Please note that
copyright regulations still apply and the following files are intended
for personal consumption only and no permission is granted to further
reproduce these files or for dispersal either electronically or
What is M.E.?
The Immune System
What causes M.E. - Part 1
What causes M.E. - Part 2
M.E. - The Diagnosis
Plan of Management
Rest and Sleep
Good Nutrition for CFS and M.E.
Treatments and Hazards
Homeopathy and Other Therapies
Women with M.E.
Finance and practical problems
Children and M.E.
Caring for someone with M.E.
HUMAN INTEREST FEATURE
makes life difficult, but for
people with severe symptoms,
few resources and no hands-on
assistance, even the barest
essentials are hard to maintain.
One Association member
shares her front-row view
of life in dire straits.
Some people with
CFS have so few
resources and such
that they aren't able
to piece together
an adequate quality
These people with
CFS often feel
unseen not only by
society at large but
even by those within
the CFS community.
By confronting the
the disabled sick,
everyone with CFS
and society as a
whole will benefit.
hronic fatigue syndrome (CFS) has been called a
catastrophic illness, which it most certainly is. Yet
articles and books—sometimes even ones written
by people with CFS—don't always reflect just how catastrophic
it can be. For the most part, published writings
seem to describe the ways people manage, pace and cope.
While such strategies are important and must be shared,
they speak primarily to people who have enough help from
friends and family, enough housing stability, enough medical
care or enough physical and mental function. In short,
some combination of several "enoughs" gives them the
material with which to rebuild a life.
enough supportive factors to combine to produce a manageable
life. Social and financial structures can crumble when
people become disabled. This is true for everyone, but some
are left with even fewer resources than others. And some
people struggling with this devastating illness have next to
nothing and no one to help them.
great suffering for people in supportive circumstances. It's
my intention to bring to light those people living in dire
straits, to look beyond the "coping face" CFS that's so often
presented to reveal the blemished and unsavory rawness in
which some of us live.
able to get by. Some don't have enough money to meet
basic survival needs. Some have no spouse, family or
friends providing hands-on assistance. For these people,
even simple pacing and rest can be out of reach as they
expend all their energy just to stay alive. The experience
and self-care don't take place. They don't eat when they
can't get up. They aren't able to get groceries for weeks
because they have no transportation or assistance. They're
HUMAN INTEREST FEATURE
through the steps involved in seeking medical answers,
much less carry out advice given by doctors. Many of them
don't have health insurance or the money to pay doctors
and other health practitioners.
Financially strained and without enough help, energy or
mental focus to effectively seek potential sources of assistance,
their precious energy is consumed by repeated relocations.
Others find themselves in substandard housing,
such as old spaces with mold that sickens them further or
tiny living quarters that make the housebound feel as if
they're in a jail cell.
at all—living instead in an RV or a car. Exposed to the
elements, these people with CFS spend their energy trying
to stay cool, or warm or dry. They exhaust their mental
resources figuring out where to park, where to get cleaned
up and how to avoid detection.
dysfunctional, even abusive, relationships because they
don't have the means or physical energy to venture beyond
their current existence.
unmanageable. For people whose health and resources have
been truly decimated by CFS—myself included—there
simply are not enough ingredients to cobble together
an adequate quality of life.
Yet many in such dire straits don't know how long they can
continue this type of survival. Surrounded by able-bodied
people who live comfortably—and even other CFS sufferers
who manage, with sacrifice, to cope reasonably well—
they sound an SOS, but feel largely unheard.
and the society at large are complex. They require extensive
analysis and much soul-searching to be understood. I gratefully
acknowledge the help I've received along the way.
Without it, I would not have survived. Still, I fall well
within the category of the people I describe. This front-row
seat has given me a view from which to share parts of the
puzzle, as I see it.
acceptance of the marginalization of the ill. This societal
blind spot shapes responses when the healthy world interfaces
with the disabled sick. The disabled life is somehow
spontaneously devalued. For those who also lack life's
material basics—projecting an image even more foreign to
the public at large—this attitude is compounded.
is defined as someone who has been injured by an external
cause. Certainly that applies to people disabled by CFS. Yet
the word victim has become a derogatory term. In popular
culture, its meaning has been altered to refer to someone
For some people with CFS, housing is
relay their experience. They resort to analogies unstable. Their precious energy is con-
describing their lives as a sinking ship, a toppling
to cope as barely held together with scotch tape.
They are so marginalized that some live as recluses. They
feel so displaced that some call themselves refugees. The
conditions of life are so precarious that one woman
described it like "living at the base of an active volcano."
They are "anybody USA." From a variety of cultural,
regional, spiritual, educational and economic backgrounds,
they are former artists, cooks, med students, janitors,
nurses, scientists, corporate employees, veterans and so on.
They are shocked by their circumstances. They're convinced
that their symptoms are made worse by the duress of
their experiences. They've sought, like others, to improve
their lot. Some of them make progress, and the rest con-
or who refuses to take responsibility for his own life.
It's as if our empowered culture thinks it has outgrown the
possibility that there can be victims in need of help. Despite
its spelling, victim has become a four-letter word.
often told that we need to be more resourceful, more self-
reliant and more courageous. We're admonished to cope
differently, to seek psychiatric counsel and to look at the
brighter side of things. We are handed society's credo:
"choice determines destiny." The fact that illness is limiting
our choices is overlooked, and we're often regarded as the
cause of our predicament.
HUMAN INTEREST FEATURE
their predicament permits the able-bodied among us to walk
away. And walk away they often do.
he can't believe that he's received no help from those he's
told about his disabling case of CFS. He repeatedly says,
"They don't get it, and I guess they don't want to get it
because then they'd have to leave their comfort zone." To
him (and many of us), the healthy world doesn't seem to
want to be disturbed. It doesn't want to be inconvenienced.
It doesn't want to change. And other people with CFS, who
are more likely to understand our plight, are often using the
bulk of their energy holding their own lives together.
who needs it. Along with this belief comes the apparent
assumption that the obligation to help belongs to someone
else. Service agencies assume that church, family and
friends will help; families assume that friends and social
services will help. Around and around it goes.
They're scrambling to pay the bills and get the kids to school
and, for a gamut of reasons, cannot add to their responsibilities.
Yet I've encountered people capable of extending a
hand who make conscious decisions to change nothing in
the trajectory of their lives. No space is made to embrace
the life of a disabled friend or neighbor if it means shaking
up the status quo (which it often does).
that even well-intentioned people can sometimes get
ensnared by it.
disabling symptoms. Moral people don't
inquire about what we need. Ethical people
who claim to love us often keep a distance
rather than feel grief. The comfort zone is
so inviting that even good people sometimes
stand together behind its protective
walls as if there's nothing they can
do to help.
good character aren't immune to
the unquestioned beliefs and
excuses held by the society that
molds them. As a result, some of us who
fringes to fend for ourselves when we cannot.
HUMAN INTEREST FEATURE
do to help.
I can't bear the touch of a blanket on
my legs. My arms are too heavy to lift
and my hands too weak to stroke my
dog. The headaches, the nausea, the
pain. I've been battling this illness for
8 long years. It feels more like 80.
Yes, there are compassionate people who show concern
enough to help. But others offer "random acts of
kindness" and no more. The rare ones stand by consistently.
And since consistency (of food, shelter, income,
etc.) is in short supply for those of us in dire straits, that
ongoing understanding and support alone can be an
essential ingredient for survival.
with CFS surviving in extremely rough circumstances.
So I conclude that there are likely people with CFS living
in dire straits everywhere, in significant numbers.
Ev erything I w o rk ed f or is no wgone.
—Eugene, O r e gon
people sometimes stand behind its protective
walls as if there's nothing they can
Gina Kerner lives in Arizona. She has suffered with
severe CFS for years, sometimes barely able to keep a
roof over her head. During this time she's taken a
strong interest in the people with CFS who are similarly
struggling to keep things together.
failure. Studies also show that the negative financial impact of living with CFS can be substantial. This is a
devastating combination for many people with the illness—particularly those without significant familial or
The Centers for Disease Control and Prevention (CDC) estimates the annual total value of lost productivity in
the United States due to CFS is $9.1 billion—representing about $20,000 per person with the illness. CDC
research also indicates that approximately a quarter of those with CFS, who would otherwise be employed, can
no longer work due their illness, and those who continue to work lose about a third of their income.
Unfortunately, many people with CFS also report obstacles to receiving Social Security Disability Insurance
(SSDI) and Supplemental Security Income (SSI) benefits, and even fewer receive consistent long-term disability
benefits from private insurers to help close the gap.
For this and other reasons it's important to support the
fight against CFS. Support the CFIDS Association's
research, education, and advocacy initiatives by visiting
THE CFIDS CHRONICLE FALL 2006
Tuesday, August 25, 2009
Trouble Paying for Needed Medicines? Try the Dispensary of Hope
Some 1,000 medical practices across the US are donating drug samples they'd otherwise destroy ($3.5 billion a year) to a 30-location med dispensary system that's handing out 100,000 prescriptions a year to low-income patients.
Jason, L.A., Jessen, T., Porter, N., Boulton, A., Njoku, M.G., & Friedberg, F.
Disability Studies Quarterly, 2009, 29, 3
Severe, persisting fatigue is a prominent symptom of Myalgic
Encephalomyelitis/chronic fatigue syndrome (ME/CFS), but individuals
with this illness frequently report the occurrence of unique fatigue
states that might be different from conventional symptoms of fatigue.
The present study attempted to assess a comprehensive set of fatigue
symptoms that have been commonly reported among patients with ME/CFS.
A 22-item fatigue questionnaire was developed and administered to 130
persons diagnosed with ME/CFS and 251 controls. Adequate scale
reliability was found. Factor analyses revealed a five-factor
structure for participants with ME/CFS but only a one-factor solution
for the control group. The new scale was also contrasted with other
more traditional scales developed to measure fatigue. Findings suggest
that individuals with ME/CFS experience different types of fatigue
than what are reported in the general populations.
The full text is available for free at:
* * *
One thing that often goes unnoticed is that ME/CFS is not "just fatigue". When I am fatigued, all my other symptoms get worse, too. This is why my first specialist told me the first step had to be improving the quality/quantity of sleep; then you could see what improved on its own and what was left to still be addressed pharmacologically. Since finding the right combination of pills to allow me to sleep 5-6 hours most nights (instead of 2 hours a night), a number of things that used to be daily major problems are now once-a-week minor annoyances.