My first encounters with medical entrenchment as it pertained to ME/
CFS came long well before I became involved in advocacy.
Having worked in an allied health field and growing up in a medical
family I'd seen lots of cases of how entrenchment had impeded medical
progress. But when I suddenly came down with ME/CFS I observed the
depth of such entrenchment up close and far too personally. It had
sunk its talons deep into my family and my day to day life. It changed
my world as much as the illness itself did.
Not to blow a horn of behalf of my father, but in his day he was
amongst the who's who of cardiology. At Johns Hopkins Hospital he had
established the first pediatric cardiology department in the country.
He later went on to see President Eisenhower when he had his heart
attack, founded the International Cardiology Federation, was President
of the American Heart Association, sat on the board of the Mass
General Hospital, was very influential in Harvard Medical School...
One of my father's medical protégés, someone he probably treated more
like a son than he did me, has had pretty good credentials also, but
more on that later.
My point is that at the time my father was considered amongst the
great medical minds. He was also in a position to be able to do a lot
He was the one that had insisted I be taken to the emergency
department at the start of my onset -- everyone was convinced I had
had either a stroke or a brain tumor given the symptoms I was having.
Two weeks later, and after 8 days of hospitalization during which
every diagnostic test under the sun was done on me the verdict was in
-- CFS, though I'd have to wait 6 months for it to be official.
It wasn't as if the diagnosis was coming from some renegade crazy
doctor; the doctor was the head of Internal Medicine at Brigham and
Women's Hospital and in charge of coordinating all research being
conducted at that hospital and the Massachusetts General Hospital when
the two merged, in other words an influential doctor himself. The
doctor's name is Anthony Komaroff.
Right off the bat my father's attitude was CFS was a BS diagnosis,
despite his seeing the symptoms I was having, all the test results
obtained which revealed lots of irregularities and his talking it all
over with Anthony.
Enter Stephen Straus from the National Institutes of Health, a distant
relative by marriage. What Stephen did was add polluted thinking to my
father's polluted thinking about CFS and my specific case of it.
Where my father went so went my family. Despite seeing how cognitively
and physically crippled I was, and seeing all the abnormal lab
results, the family thinking was "CFS is not a real illness" and I
wasn't really so ill.
There was one more effort to get to the bottom of it. My father had me
seen by his good friend Mort Swartz, Chief of the Infectious Disease
at the MGH, Professor of Medicine at Harvard Medical School, member of
the Institute of Medicine of the National Academy of Science,
Associate Editor of the New England Journal of Medicine, Chairman of
the Board of Scientific Counselors of the National Institute of Child
Health and Development, and on the Board of Governors of the American
Board of Internal Medicine. Enough of the credentials, but he was
known as one of the greatest minds in the field of diagnostic
Credentials do not necessarily imply absolute enlightenment in one's
field, but he was at least more objective than my father was being.
After reviewing my entire medical record, conducting more tests on me
and probably talking to Anthony he came up with his verdict. He
couldn't bring himself to say I had ME or CFS, but at least he said,
"seems to be having a viral illness of unknown etiology."
That too wasn't good enough to convince my family how ill I was --
apparently people with a viral illness get better so I could not be
continuing to be as ill as I was saying I was. The invisible symptoms,
cognitive deficits, flu-like symptoms, continual exhaustion... must
have been 'all in my head.'
As hard as it was to face my family's betrayal that was not what
really got to me. What filled me with resentment and embarrassment was
that my father and in turn many of his close friends and colleagues
were in positions in which they could have propelled ME/CFS forward
into main stream medicine and greater acceptance. The way he treated
of me was merely an act upon one person -- his denial that ME/CFS was
real and his refusal to help get understanding of the illness and
increased ME/CFS research into main stream medicine was an act of
medical irresponsibility inflicted upon all people who have ME/CFS.
That is what I could never forgive him for.
Oh, and that protege of my father's, Greg Curfman, has long been the
Executive Editor of the New England Journal of Medicine (NEJM),
purportedly the most prestigious medical journal in the country if not
the world. The NEJM is by many in medicine to be as much of a gold
standard as the Department of Health and Human Services, and yet it
has continually and unyieldingly refused to publish anything about ME/
So much for the credentials of medical prestige -- we have almost the
entire field of medicine lined up against our illness and us. It's
entrenched negative bias about ME/CFS is our Goliath. And the only
sling shot we have to knock down that entrenchment is absolutely
undeniable solid medical research.
But David has no stones. Unless the entire patient sector, their
families and friends put their money where their mouths are to fund
the kinds and amounts of research we need, Goliath is going to
continue causing havoc within our ranks.
I beg people to give till it hurts, for ME/CFS hurts a lot more.