Sunday, August 30, 2009

Medical Entrenchment and CFS

Medical Entrenchment and ME/CFS

John Herd

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 
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 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 
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/

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.


Joanne said...

A very interesting post many parralles to my own experiences.
I suspect by now you have considered the possible link with Borrelia Lyme Disease.
Are you aware of the latest information regarding seronegativity and persistent infection as presented by Dr Steven Phillips to IDSA review panel on 30th July.

Another interesting link is

I was diagnosed with ME/CFS but a chance course of Amoxicillin improved my symptoms and led my GP to suspect Lyme Disease. This was eventually confirmed by a private specialist in UK and I was treated on long term antibiotics as per ILADS.

After 6 1/2 years of debilitating symptoms I am now nearly 100% recovered.

On Eurolyme, a chat line, 75% were previously diagnosed with ME/CFS before finding that in fact they had Lyme Disease.

If you want to read my story it is on the bottom right of my blog and useful links on top right.
Good luck in finding something that works for you.

CFS Facts said...

Thank you, Joanne.

The specialist who initially diagnosed me in 1988 recommended "improve the quality of sleep and see how much the body can heal itself".

This time, it took me several years to find a doctor willing to prescribe sleeping pills rather than useless anti-depressants. After a couple months of sleeping 8 hours a night, I developed a 101 fever. It hadn't gone away after a week, so I got hold of a friend who's a nurse, and her response was "Congratulations, you have a functioning immune system again!"

It took 6 months for the fever to go away, i.e., for my renewed immune system to beat back the virus.

I still have problems, which may never go away (the physical damage of years of medical neglect may be permanent), but I'm in a lot better shape than I was before the sleeping pills. Symptoms which had been daily problems are now down to once-a-week annoyances.

Joanne said...

Hi again

So I see you believe it was a virus but was the virus identified?

Have you been assessed by a Lyme Literate Medical Doctor to see if it could be Borrelia causing your ongoing problems.

If not then i wouls suggest you have a good read what is currently going on with lyme which is causing doctors to miss the diagnosis.

BTW with Lyme many people also develop lots of other viral and allergy problems especially after being ill some time.

CFS Facts said...

We don't know what virus it is, but we do know which ones it's not. Likely a virus for which there's no test yet.

It's highly unlikely that it would be Lyme, because I was living in the middle of the city and hadn't been out of the concrete jungle in months. Not many animals to be sharing ticks with me.