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
paediatric 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 for ME/CFS.
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
tumour 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 infectious disease.
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/CFS.
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.