The Annual meeting of the American Association for Chronic Fatigue
   Syndrome in Cambridge, Massachusetts October 10-12, 1998.


October 15,1998 - REPORT FROM THE FRONT

Hi Folks, I'm back. There's a lot of new people, and even some lawyers
added to this list.  I have a lot to tell you and recieved some
interesting posts while I was gone that I want to share.  Just don't try
to read them all at once.

This is my report from the Annual American Association of Chronic
Fatigue Syndrome Conference and the meeting of the US Coordinating
Committee on CFS at the Hyatt Regency Hotel, Cambridge, MA, October
10-13, 1998

Although I thought I was going to a meeting of a group advocating for
research, recognition and scientific study regarding CFS, there were
many times that I got the distinct feeling I had wandered behind enemy
lines.  The enemy in this case being the "it's all in your head" people,
the insurance companies, and the government (who for whatever their
reasons feel the need to do EVERYTHING in secrecy, whitewash or "redact"
all information, yet issue long winded pronouncements to make us THINK
they are doing something.)

First I want to say, that like a loud clear voice crying out in the
darkness, Dr. Nancy Klimas of the University of Miami, reported,
researched and advocated for us honestly, forthrightly, and tirelessly.
She even, on her own, arranged a meeting where doctor attendees (those
doctors in practice treating CFS patients) could have a discussion group
where they could actually converse WITH EACH OTHER as opposed to sitting
in darkened rooms for hours on end listening to anyone who paid AACFS
enough to get a slot to talk and then having subsequent question and
answer periods either outright cancelled or extremely truncated and cut
off.)  So the only time we had left to meet was one hour at 7:15 am 
Monday Morning.  The doctor attendees even remarked that there seemed to
be some kind of effort on the part of the conference organizers NOT to
have this type of session since every moment of the three days was taken
up with lectures.

The other high points, in my mind, were the report by DV Ablashi and KK
Knox that showed something like 60% of CFS patients having high levels
of HHV-6 (Human Herpes Virus - 6) in their blood as opposed to very few
of the normal controls. This study seemed well done.

I'm not going to comment on the other medical findings since you will no
doubt be reading about them elsewhere (RNase-L Deficiency, etc.).  I
also missed all of Dr. Kamaroff's talks so I can not comment.

Now on to the Alice in Bizarroland part where I was wondering:  1)why
these people are allowed to present their biased poorly conducted
research and conclusions and 2) why the members of the audience (many of
whom were both doctors AND patients) didn't boo them off the stage? 
There was a very uneven proportion of psychological studies presented at
this Conference.  I want to know if the American Cancer Society and the
American Heart Association or even the Multiple Sclerosis groups devote
approximately 20 to 25% of their annual conferences to discussing their
patients personalities, motivations and psyches, much of it based on
highly flawed, highly speculative and highly prejudicial studies,
information and just plain innuendoes.

PETER MANU was given a prime spot during the Saturday morning segment
(remember this part of the conference was directed at doctors treating
CFS patients who had flown in from all of the country to find out the
latest and best methods of diagnosis and treatment).  He talked about
his latest study, reported in "Disability and CFS: Perspectives" where
he analyzed 112 charts sent him by several insurance companies to tell
if adequate work-ups were done on patients who were approved for DI
benefits.  The title of his talk "Overdiagnosis of CFS."  Dr. Manu's
sponsor - Metlife.  Dr. Manu's summary slide claimed something like 38%
of patients collecting DI benefits (in his study) had NOT met all the
diagnostic criteria and some were misdiagnosed and actually had other
diseases.

After his talk there was NO question period.  Fortunately at the end of
the morning session they did have a question period for all the
presenters and I got to ask one.  I asked Dr. Manu why he had not
pointed out that the charts he was studying were NOT a RANDOM sample of
CFS patients collecting DI benefits but, as pointed out in the book,
were CHOSEN BY THE INSURANCE COMPANIES.  In other words they wanted to
prove CFS was overdiagnosed so they picked the most questionable cases
they could find to submit to him for review.

Dr. Manu's answer was shocking.  He stated "I don't know how the charts
were chosen."  I had to incredulously ask "YOU DON'T KNOW HOW YOUR STUDY
POPULATION WAS CHOSEN???"  Despite the subdued audience, I think I even
heard a few audible gasps.

Next on my agenda was RICHARD MARLIN.  Some Canadians had come up to me
and told me this fellow ran a rehab clinic in Canada that advertised to
insurers that they could get patients off DI benefits.  Their strategies
were that you go in for a month or so and end up with one of three
diagnoses.  If you quit the program early due to worsening of your
condition, you are labeled "noncompliant" and benefits are terminated. 
If you complete the program but insist on lots of pain meds, you are
deemed a "drug addict" and benefits are terminated.  If you somehow
complete the program with minimal medicines, you are deemed "cured" no
matter what happens to you when you leave, and benefits are terminated.

So it didn't surprise me that this fellow was promoting the use of the
MMPI-II personality test. He even put a copy of it on the screen (with
the scales missing).  It's not the test, per se, that I object to, as
the categories it puts people in.  Its SCALES are labeled "hypochondria,
conversion hysteria, depression, paranoia," and a few other highly
prejudicial terms THAT WILL BE MISUSED by insurance doctors.  During the
question and answer period for this test, I pointed out that reputable
chronic disease experts state this test is NOT appropriate for patients
suffering from Chronic pain diseases.  By this time the doctor who gave
this lecture had mysteriously disappeared.  I suggested a better test be
devised.  Someone else on the panel responded to me by simply saying "It
would be IMPOSSIBLE to develop another test."  WHAT??  Did I hear
correctly?

What he was saying, I think, is that this test does exactly what they
want it to do. It labels people with mental illnesses who are suffering
from physical illnesses.

Interestingly in the conference book handout with synopses of each talk
Dr. Marlin's synopsis clearly states the groups of CFS, FM and Chronic
pain patients "none of the 3 groups showed evidence of the presence of
marked psychopathology that could not be accounted for based upon their
overall illness ....these data suggest that a psychiatric characterization
of these syndromes....HAS VERY LITTLE SUPPORT and is therefore not likely
to represent a useful conceptualization of these disorders."  But
somehow despite that he jumps to the conclusion that " the 'final common
pathway' to understand CFS and FM is at a behavioral and psychological
level."

Fortunately there was a bulletin board in the lobby that doctors and
conference participants could wander by and you could post things on. 
Manu, of course, had an ad up for his new book on Somatization.  I put
up two posts - one the message about Steve Peteet and the upcoming
lawsuit, and then I wrote up a FORMAL COMPLAINT to the conference
organizers and posted a copy on the board.  (It would disappear several
times a day and I would have to replace it).  I dissected the motives of
the above two lecturers AND asked the organizers why they were giving
equal time to people with poorly done, biased research?  If we are
interested in being "BALANCED" and allowing anyone who has ANYTHING to
say, no matter how ridiculous, will we be hearing from Elaine Showalter
at next year's convention?

Sunday:

I didn't get a chance to put too many people on the hot seat Sunday,
because I spend many hours sleeping.  This was NICE.  The Hyatt set up a
room very near the conference room with four beds (and the staff seemed
to change the sheets frequently) where you could go and lie down in the
dark.  People cooperated by being very quiet and keeping the lights off
and there was usually a bed available when you needed one.

Jack positioned himself in the lobby wearing his UNUM T-shirt:
Unethical, Nasty, Underhanded, Mean, and spoke to lots and lots of
attendees and in between did some of the reading we will be needing for
this lawsuit.  We received much encouragement for our efforts in
fighting the insurance industry and their illegal tactics.

Monday:

I went to the Doctor to Doctor session (organized by Nancy Klimas) and
got a round of applause when I introduced myself as UNUM's number one
enemy.  Dr. Klimas let me have a few moments at the end to caution
doctors about talking to insurance companies by telephone or any other
way that there is no permanent record of what was said.  The doctors had
a lively session discussing what's worked for certain symptoms and as I
said earlier they expressed disappointment that there wasn't more of
this type of session.

Dr. Klimas had an idea for a discussion group on the Internet that was
tried last year for doctors who treat CFS.  I don't know the exact name
but it was something like CFSDOCS Newsgroup.  If anyone can find this
newsgroup, please let me know and I'll post it so you can tell your own
doctors about it.

After the Doc to Doc, I changed into the Judydoc outfit.  Monday was the
patient day and the talks were less scientific and more geared towards
patient issues.  Unfortunately I missed a lot because I was in that room
sleeping again.  But I made sure to catch MICHAEL SHARPE's talk.  He's
the English guru of Cognitive Behaviorial Therapy (CBT), whose poorly
designed studies are misinterpreted and used by UNUM to deny our
benefits.

Interestingly Dr. Sharpe approached the subject very defensively,
stating that he didn't understand why anything with the word
psychological is so vehemently opposed. Then he read from an essay by
GAIL KANSKY in the latest edition of the NATIONAL CFS FOUNDATION
newsletter stating that the AACFS was so desperate for psychobabble that
they had to import them from other countries.  Dr. Sharpe said he
presumed they were referring to him.  I stood up at that point and said
I'd be more than happy to point out the flaws in his studies.  So Dr.
Sharpe continued to give the results of his old studies, the same ones
where any patient suffering from "depression" or a "sleep disorder" was
eliminated from the "CFS" study group (thereby eliminating a lot of
patients with true CFS).  Also despite the fact that his results were
less than overwhelming his summary slides did not point out that his
"improvements" were for the most part partial and not that much more
(but still statistically significant) than placebo.  All the summary
slide said was that CBT can "improve" CFS or something nebulous like
that.

During the question period I asked Dr. Sharpe why he had not responded
to my letter last year about how UNUM was misusing his data and why he
had done nothing to correct their misuse of his research.  His response,
something to the effect that there was nothing he could do.

Anyway, after this I was in the lobby talking to Gail Dahlen (Medical
Professionals with CFS) and Michael Sharpe actually came up to me.  He
started telling me that we have to remember that insurance companies
have to worry about that F-word - FRAUD.  Then he told me he was
actually invited to speak to them the following week.  I told him if he
really cared about patients, he'd sit down with me for 20 minutes.  He
told me he could give me 5 minutes because he had a "plane to catch."

So I did my best in five minutes, plus encouraging him to go to the
website, to educate him that insurance fraud is a crime.  Insurance
companies can prosecute for fraud.  If they DON'T prosecute, then they
are OBLIGATED TO PAY THE CLAIM because ambiguities MUST be found in
favor of the policyholder.

It was interesting to note that apparently the insurance contracts with
the 2 year limits for mental illness have not reached England yet, so
Dr. Sharpe did not realize how critical it is to emphasize the PHYSICAL
nature of the disability in the US.  He did acknowledge, in his lecture,
that CFS IS A LONG STANDING CHRONIC DISABLING PHYSICAL ILLNESS THAT IS
NOT CURED IN 2 YEARS.  He also agreed with me that even his "improved"
patients were not able to return to their former occupations but had to
pursue alternate work.

I wonder if Dr. Sharpe, during our 5 minute conversation, formed a
medical opinion on me that he will share with UNUM.

NAME CHANGE SESSION

This was torture.  I heard names proposed that are unpronounceable,
unspellable, illogical, and make CFS sound wonderful.  If we are going
to argue about how to pronounce encephalopathy (en-se-phalothy vs.
en-ke-phalopathy) or have names that require 5 minute explanations, we
might as well stick with CFS. Depression became a serious illness, not
by a name change, but by a MASSIVE ADVERTISING CAMPAIGN on the part of
the drug companies.  In fact I can't think of ANY disease that actually
has an appropriate name --Multiple Sclerosis? That doesn't tell you
anything. Lupus?  That means WOLF in latin.  Lou Gehrig's disease? - Lay
name that came into common usage BY ACCIDENT because no one could
pronounce Amyotrophic Lateral Sclerosis, much less have any idea what it
meant.

So even though I thought we needed a name change, I now side with the
one person who suggested we stop wasting time bickering among ourselves
and concentrate on getting RECOGNITION, RESPECT and RESEARCH.

Tuesday

Tuesday the US Department of Health and Human Services CFS Coordinating
Committee was meeting.  Dr. Reeves (the CDC whistleblower) gave a long
speech about what kinds of research we can look forward to.  When asked
to comment on the misappropriation of funds, he refused to say
ANYTHING.  He wouldn't even give us a synopsis of what had already been
reported in the media.  But he assured us there would be no whitewash.
Yeah, right.

Next thing that happened was during the break I went up to talk to Aba
Heiman.  Mr. Heiman is a lawyer whose name I'd heard a lot when I was
getting started on this project as someone with experience against
UNUM.  One of those claimants' lawyers who is on a "first name basis"
with UNUM's lawyers.   I called him once about 6 months ago.  At that
time, he was not interested in becoming part of the E-mail network or
sharing information with other lawyers because, he told me, he wasn't
currently representing any UNUM claimants.  So here he is, a
representative ON the government coordinating committee.  I'm not sure
who he's representing.  I asked him who the representative of the
insurance industry was because the committee is supposed to have someone
"with expertise in health care services, disability  issues, or a
representative of private health care services insurers."  He said he
didn't know.  I reminded him of our phone call and gave him a copy of
the handout about Steve Peteet and the upcoming lawsuit.  (Remember I
was dressed in the Judydoc get-up at this time).  Aba Heiman actually
said to me "You know there's a group of people out there trying to TRASH
UNUM." Jaw Drop!

Now it might just be more paranoia but I've heard rumors that UNUM
sometimes PAYS lawyers who are successful against them more money NOT to
take any new UNUM claimants.  Are you following my train of thought??

Well I'd had enough torture and Jack and I had things to do so we left.

Wednesday

I had arranged an appointment at 2:30pm to go to the headquarters of the
Massachusetts Insurance Commission in Boston to meet with Jerry Condon,
the records keeper,  and look at the file of complaints against UNUM. 
Now in our last phone conversation when we arranged this meeting, Mr.
Condon was trying to tell me that I was going to have to pay $100 TO
LOOK AT THE FILES, because I was required to pay for them to be REDACTED
(have the names, addresses and policy numbers blacked out).  I was
getting very suspicious that there is no such law or policy that I have
to pay to LOOK at government files, only to COPY them.  So I had told
him he better have the policy manual to show me.

Fortunately I called at 10:00 AM.  Mr. Condon's voice mail was FULL.  I
got a message directing me to someone else who told me he was "out sick"
but would definitely be back tomorrow. (A mysterious one day illness),
and that there was NO ONE ELSE in the office that could help me look at
the files.  So I would have driven into downtown Boston, paid too much
to park, probably had to walk a long way, only to be told this man was
OUT SICK???  I checked to see if they had possibly left a message on my
answering machine telling me not to come. NO MESSAGE.  The woman I spoke
with told me it wasn't the JOB of the insurance commission to call
people who had appointments when someone was out sick.  Does anybody SEE
THE PATTERN HERE?

So that was my week.  I would just like to say the high points were:
1) Mary Schweitzer - no matter what differences we have in our personal
styles, that woman was THERE, exhausted, frustrated, and in tears, but
speaking up FOR YOU.

2) Gail Kansky - founder of the National CFIDS Foundation and wife of
Bernie Kansky who also says it like it is, in her newsletter.

3) A fellow who's active in the AIDS movement who said to me "What is
the matter with all these people?" when the patients weren't speaking
up, booing the psychoanalytic chalatans, etc.  He told me his lab needed
some company to pay for some drugs for their AIDS patients that the
companies didn't want to pay for.  He said he made 4 phone calls,
threatened a few "ACT-UP" demonstrations, and voila, the payments were
approved, the drugs appeared.

There were many many other high points and a few more low ones, but I'll
not get into them all here.

Unfortunately upon arriving home, in the Journal of the American Board
of Family Practice (an organization that I had written to and asked to
write an educational article on CFS) was an article entitled
"Understanding and Caring for the Distressed Patient with Multiple
Medically Unexplained Symptoms."

Imagine the most nauseating, objectionable, biased, prejudicial article
you can, with all the catch phrases - somatization, perpetuating
factors, difficult, frustrating, thoughts and feelings, and you will
have this article.  As usual though, other than insulting your patients,
this article provides no real treatments or cures.  And Michael Sharpe's
name is very prominent in the bibliography.  And of course  it is
written by a psychiatrist - Edward A. Walker of the University of
Washington Medical School, Seattle, WA.

I'd like to end on an upbeat note but I can't think of one.  The rest of
my life is just fine.
Judydoc