Chronic Fatigue Syndrome (ME/CFS) Stories
1974, Arlene - Rhode Island - Arlene has had a
long and difficult struggle with ME/CFS. More than anyone on this list
Marlene's struggle exemplifies the difficulties that people who've had this
disease for decades went through in simply getting their illness recognized (let
alone treated). Despite her travails and the long duration of her illness
Arlene remains determined not to let this illness define who she is.
1979, Cort - San Diego/Las Vegas -
Cort came down with CFS about 25 years ago
while in college and MCS about 10 years ago. He was always able to go to school or work
at least part time a severe case of MCS stopped him from working about five years ago. Single in his late-forties, he has, except
for his MCS, slowly improved over time. He runs this website. (5/10/04)
DM's Story - Most of DM's family has chronic fatigue syndrome. Their story
demonstrates the devastating emotional as well as physical effects CFS can
emotional have. DM’s family, with their diagnosis by a prominent physician
and their well documented immune abnormalities, illustrates the many way
this devastating disease can touch a family. (12/07)
1985, Linda - Canada -
Linda very poignantly talks of the ups and downs of a 20 year journey with severe ME/CFS that began in college.
Fiercely committed to advocacy and improving the lives of chronic fatigue
syndrome (ME/CFS) patients she provides a resources list at the end of her
story. (4/07)
1987, Lauren
- This is not Lauren Hillenbrandt's personal story but it is a story, a very touching story, of her
life. Lauren Hillenbrandt is the author of Seabiscuit.
1990, Pat - Boulder, Colorado - At success story. At one
time sick enough to contemplate suicide, she was able with the help of
various practitioners and her own emphasis on lifestyle changes to
completely overcome fibromyalgia. Pat still has CFS but she also, as she
puts it, has her life back. An awarding winning support group leader and
psychotherapist and Lifestyle Counselor, Pat now teaches others how to
successfully manage CFS.
1996, Laurel - A young,vibrant, talented
(magna cum laude in Psychology from Tufts), adventurous (spent a summer
backpacking across Europe) young woman, Laurel was felled by infectious
mononucleosis that did not, alas, resolve. She tried to push through it and,
like so many others, was laid low. Her bright future completely eclipsed Laurel
has been confined to her bedroom for the past nine years and can barely speak
above a whisper. Still hopeful about a cure she now blogs on Blogger about
ME/CFS.
1996, Tammy - New Mexico
- A single mother and nurse, Tammy's CFS
came on not long after breaking her back in a hang glider crash. For the next
five years she endured a truly bizarre suite of symptoms and eventually had to
give up care of her daughter. She too, however, has slowly over improved over time
(3/04/05)
1996, Samantha - United KingdomSamantha, now 16, has had CFS since she was
about 7 years old. Her story, written by her mother, is a difficult one;
among other problems she has suffered from severe jaw and head pain for years
and is now largely housebound and confined to a wheelchair.
1997, Joan - Chester, United Kingdom
- Joan, now 32, was an avid exerciser before she came down with CFS while
working abroad. Her illness waxed and waned over time and she was able to
keep working until 2004. A psychiatrist informed her she had CFS (!) and
referred her to a CFS specialist who diagnosed her with, among other things,
Lyme disease. Several rounds of antibiotics have allowed her to recover her
strength somewhat; she is now working one day a week (5/05).
1997, Lauren - United Kingdom* -
Now 20, Lauren came down with CFS when
she was twelve. Lauren was able to complete school with the aid of tutors but
her health has declined over time. She is almost completely housebound
at present.
1997, Suzy - United Kingdom* -
Now 20, Suzy came down with CFS at 14.
Formerly an excellent student and athlete Suzy has had an extremely
severe case of CFS. Completely bed bound and in a semi-comatose state for
several years Suzy has slowly improved over the past two years.
2000, Lisa - Northern California - Lisa
endures one of the most difficult disease combo's around - severe ME/CFS and
MCS. With health problems for many years but with a full onset of ME/CFS
after a mold exposure in 2000 she and her boyfriend, Jeremy, have been relegated
for the last 8 years to living in a tent in a Northern California forest; pretty
enough summer - frozen in winter. There's is a harsh existence common to many
people with MCS.
2000, Marlene
- Sacramento, California
- We hear a lot of bad
stories but there are success stories as well. Marlene had a classic onset to
her CFS - an infection that progressed until she became debilitated, unable to
work, lost her health insurance and her savings - the whole story. About a year
and a half into her illness, however, some some supplements helped her regain
her health and she has worked full time for the past four years (7/06).
2004, Meg - Bermuda
Now in her fifties, Meg was the only member of her family to get hit by infections
again and again while growing up. A graphic designer and artist Meg has had full
blown CFS for a couple of years now. She has recovered enough - just enough - to
make it through a part-time day of work. (10/15/06).
2005, Lynn - California
- A success story.
Lynn was ill enough that doctors thought she might have congestive heart
failure. Recently she had a huge breakthrough doing the Amygdala Retraining
process and appears to be on her way to health (7/19/08)
2006, Mike -
Columbus, Ohio - Mike' has as a very severe
a case of ME/CFS as can be found. Patients like Mike need to be shielded from almost any kind of input and their degree
of debility is overwhelming.
First we hear from Mike's father and then from Mike himself.
Two Tragic Deaths
- Two CFS patients that didn't make it and their stories.
Barbara -
Barbara tells her story with FM/CFS through her poems
*these stories are from the INVESTINME website.