Wednesday, December 1, 2010

UK Protest at St. Bart's

Submitted by Roisin Ryan <roisinryan1@LIVE.CO.UK>:


By Mindy Kitei


From noon to 3 p.m. on Monday, ME/CFS patients in the U.K. are staging
a virtual and onsite protest to mark the 25th anniversary of London's
St. Bartholomew's Hospital ME/CFS service.  The hospital itself,
however, is 900 years old, having been founded in 1123 by a courtier in
King Henry I's court.  The hospital's future seemed precarious 400 years
later, when King Henry VIII—the king who beheaded or divorced four of
his six wives—ordered the dissolution of the monasteries, thereby
depriving the hospital of income, until King Henry VIII reendowed Barts
shortly before his death, in 1546.

Many ME/CFS patients believe that the treatment they've received at
Barts is more appropriate for medieval times than today.

Rosie O'Grady (not her real name) is one of them. The 43-year-old
disabled lawyer hails from Ireland but lives in England with a severe
case of ME/CFS. Before she became ill in 1996, she reminisces, "I rowed
on the weekends on the Thames with a rowing club in Greenwich. I loved
traveling and my friends. My life was very full."

All that changed 14 years ago when she became ill with a flu from which
she has yet to recover.  She was an outpatient at Barts several times
from 1997 to 2005. To get government benefits in the U.K., she explains,
there's "intense pressure to show you're doing 'treatment.'  If you had
a private income, you would not go there."

O'Grady says the doctors and rehab team at Barts wanted her to become as
physically active as possible. "I was told by the physio there everyone
could do 10 percent more activity every few weeks. They told me that any
time I felt unwell [I should] go for a walk and the fresh air would wake
me up.  I completely placed my trust in them," she says, but like most
patients with ME/CFS pushing herself only made her worse.
"Some days my
power to my fingers was so weak I could not pick up a coin," she
remembers. "I was desperate to get well and would have done anything
they said."

Her ME/CFS case was so severe that she moved into a YMCA where all food
and services were provided.  "I could not even change the duvet on my
bed," she says.  "I was unable to make a cup of tea and stay awake to
drink it."  Today she is bedbound or in a wheelchair, unable to work or
remain upright for more than few minutes at a time.  She believes that
her time at Bart's contributed to her ill health.  Her sojourns there
left her physically weaker and "emotionally spun out from the lies and
double speak."

Frustrated by the care at Barts, O'Grady made an appointment with a
rheumatologist at a different hospital, who prescribed
anti-inflammatories to treat the pain in her back and neck, which proved
helpful.  When she had given her Barts doctor the same list of
rheumatologic symptoms, "he looked bored, said nothing and started
cleaning his fingernails," she recalls.  "Another doctor claimed they
didn't need to run many tests on ME/CFS patients because "they would
know the results simply by looking at the patients."

For more information on the protest:

For information on how to email or fax a virtual protest:

A Facebook page devoted to the protest:!/event.php?eid=156600244382628 

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