John Herd
johnherd@johnherd.com
My first encounters with medical entrenchment as it pertained to ME/=20
CFS came long well before I became involved in advocacy.
Having worked in an allied health field and growing up in a medical =20
family I'd seen lots of cases of how entrenchment had impeded medical =20=
progress. But when I suddenly came down with ME/CFS I observed the =20
depth of such entrenchment up close and far too personally. It had =20
sunk its talons deep into my family and my day to day life. It changed =20=
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 =20
amongst the who's who of cardiology. At Johns Hopkins Hospital he had =20=
established the first pediatric cardiology department in the country. =20=
He later went on to see President Eisenhower when he had his heart =20
attack, founded the International Cardiology Federation, was President =20=
of the American Heart Association, sat on the board of the Mass =20
General Hospital, was very influential in Harvard Medical School...
One of my father's medical prot=E9g=E9s, someone he probably treated =
more =20
like a son than he did me, has had pretty good credentials also, but =20
more on that later.
My point is that at the time my father was considered amongst the =20
great medical minds. He was also in a position to be able to do a lot =20=
for ME/CFS.
He was the one that had insisted I be taken to the emergency =20
department at the start of my onset -- everyone was convinced I had =20
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 =20
every diagnostic test under the sun was done on me the verdict was in =20=
-- 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 =20
doctor; the doctor was the head of Internal Medicine at Brigham and =20
Women's Hospital and in charge of coordinating all research being =20
conducted at that hospital and the Massachusetts General Hospital when =20=
the two merged, in other words an influential doctor himself. The =20
doctor's name is Anthony Komaroff.
Right off the bat my father's attitude was CFS was a BS diagnosis, =20
despite his seeing the symptoms I was having, all the test results =20
obtained which revealed lots of irregularities and his talking it all =20=
over with Anthony.
Enter Stephen Straus from the National Institutes of Health, a distant =20=
relative by marriage. What Stephen did was add polluted thinking to my =20=
father's polluted thinking about CFS and my specific case of it.
Where my father went so went my family. Despite seeing how cognitively =20=
and physically crippled I was, and seeing all the abnormal lab =20
results, the family thinking was "CFS is not a real illness" and I =20
wasn't really so ill.
There was one more effort to get to the bottom of it. My father had me =20=
seen by his good friend Mort Swartz, Chief of the Infectious Disease =20
at the MGH, Professor of Medicine at Harvard Medical School, member of =20=
the Institute of Medicine of the National Academy of Science, =20
Associate Editor of the New England Journal of Medicine, Chairman of =20
the Board of Scientific Counselors of the National Institute of Child =20=
Health and Development, and on the Board of Governors of the American =20=
Board of Internal Medicine. Enough of the credentials, but he was =20
known as one of the greatest minds in the field of diagnostic =20
infectious disease.
Credentials do not necessarily imply absolute enlightenment in one's =20
field, but he was at least more objective than my father was being. =20
After reviewing my entire medical record, conducting more tests on me =20=
and probably talking to Anthony he came up with his verdict. He =20
couldn't bring himself to say I had ME or CFS, but at least he said, =20
"seems to be having a viral illness of unknown etiology."
That too wasn't good enough to convince my family how ill I was -- =20
apparently people with a viral illness get better so I could not be =20
continuing to be as ill as I was saying I was. The invisible symptoms, =20=
cognitive deficits, flu-like symptoms, continual exhaustion... must =20
have been 'all in my head.'
As hard as it was to face my family's betrayal that was not what =20
really got to me. What filled me with resentment and embarrassment was =20=
that my father and in turn many of his close friends and colleagues =20
were in positions in which they could have propelled ME/CFS forward =20
into main stream medicine and greater acceptance. The way he treated =20
of me was merely an act upon one person -- his denial that ME/CFS was =20=
real and his refusal to help get understanding of the illness and =20
increased ME/CFS research into main stream medicine was an act of =20
medical irresponsibility inflicted upon all people who have ME/CFS. =20
That is what I could never forgive him for.
Oh, and that protege of my father's, Greg Curfman, has long been the =20
Executive Editor of the New England Journal of Medicine (NEJM), =20
purportedly the most prestigious medical journal in the country if not =20=
the world. The NEJM is by many in medicine to be as much of a gold =20
standard as the Department of Health and Human Services, and yet it =20
has continually and unyieldingly refused to publish anything about ME/=20=
CFS.
So much for the credentials of medical prestige -- we have almost the =20=
entire field of medicine lined up against our illness and us. It's =20
entrenched negative bias about ME/CFS is our Goliath. And the only =20
sling shot we have to knock down that entrenchment is absolutely =20
undeniable solid medical research.
But David has no stones. Unless the entire patient sector, their =20
families and friends put their money where their mouths are to fund =20
the kinds and amounts of research we need, Goliath is going to =20
continue causing havoc within our ranks.
I beg people to give till it hurts, for ME/CFS hurts a lot more.=
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