Re: the real issue in the Jones case

pmerv@xxxxxxxxxxxx wrote:
> This makes sense and I agree with you.

Thank you!

> I never intended to create or
> encourage a media circus AROUND DR JONES and I would discourage and
> have discouraged activities that have not been cleared by Jones legal
> team.

Well the problem is that this is a community filled with very angry
people--and I fully understand their anger--but being angry doesn't
equal being effective.

They're used to a response which is RALLY PROTEST SCREAM AND YELL and
it has NEVER been at all effective. In fact, it is very reactionary and
often very counterproductive.

And there is a great deal of running around like chickens without
heads--angry--mad as hell and intent on not taking it anymore--but what

We get it even worse.

There is very little real thought about how to be effective, what is a
GOOD idea and what is a bad one. There is a tendency to ACT for the
sake of acting rather than thinking things through. And very little
learning from mistakes. And a lot of self congratulations even in the
face of disaster.

And too much about whose feelings are getting hurt rather than focusing
on what are good ideas or bad ones.

>We are in communication with the legal team.

Yes I understand that. However, the introduction sent out under the
CALDA name as written by Lorraine Johnson is still problematic. I hope
that you consider sending out a correction, and not embellish upon what
the legal team has asked for--which is nothing further.

The problem with what Lorraine wrote is that it still attempts to frame
the issue and promote an agenda that the legal team has SPECIFICALLY
not decided to pursue. And, from what I know, it also misstates the
charges--there is no accusation about the long term treatment being
improper per se--it is NOT about diagnosis or treatment of Lyme per se,
it is about diagnosing and treating ANY DISEASE without having seen the
patient--and not for a short period of time, but for five months!

God bless Dr Jones and I fully understand why he might have done that
(if he did and he doesn't seem to deny it). But I'm willing to predict
that the defense is not going to be that it was really okay to do
that--instead it will be that no harm was done, there was a reasonable
basis for the diagnosis, the treatment was reasonably warranted and
properly monitored, and he wouldn't do the same thing again, and there
is no record of his having committed violations in the past, no intent
to do it in the future, no harm done, an impeccable and impressive
record of fifty plus years as a dedicated, caring physician and that no
draconian penalties are warranted--in fact, perhaps he made a mistake
but really there is no need for discipline at all--he won't do it
again, and no harm was done or intended and he took reasonable steps to
prevent any harm from being done.

As a matter of fact, I understand that the letter that Dr Jones first
sent out was done BEFORE he hired a lawyer. And I bet the lawyer was
horrified at the letter Dr Jones did send out.

It just isn't the right tack to take here.

I know how Dr Jones feels, but he needs to avoid communicating to the
Board that he thinks this is okay and he'd do it again. He needs to
show that it was a one time error, a mistake in judgment, and that he
wouldn't do it again. Honestly, a much better approach which is much
more likely to achieve the desired result--the practical result--that
he keeps his license and is able to continue practicing and treating
children with Lyme.

IF the legal team decides on a different strategy, one that involves PR
or (much less likely) influence, or anything like that, well, that will
be on the basis of the particular facts.

I understand that the complaint was NOT filed by some group of doctors
or organization with an anti Lyme anti llmd agenda. I do NOT believe
there is any history of the CT board scapegoating llmds or ever
targeting Dr Jones or any other llmd in CT (and there are only a
couple) before. It is NOT NY or NJ--where, arguably, there is a much
clearer agenda from the medical boards that IS anti llmd--and in those
circumstances a different approach MIGHT be appropriate--depending on
the facts of the individual case.

>But I think we, the
> Lyme community, could benefit from such an approach if it were done in
> another context, much like the AIDS community did and for that matter,
> how we ended the Vietnam war.

There's a big difference. AIDS patients were well organized to begin
with because they largely already fell into groups that had suffered
discrimination. AND the bigger difference is that there was NOT a
medical controversy about the disease--there was a political one--that
involved discrimination against homosexuals by the Reagan
administration and the far right. But there's another difference--their
doctors were on their side and willing to stand up and be counted. And
other differences--they were well before they were too sick to do
anything. And the lethality rate was incredibly high in the beginning.

But Lyme patients are NOT well organized to begin with. There are no
preexisting organizations. And our doctors are NOT willing to stand up
for us and be counted--they don't want their names used on the
internet! And they are a tiny distinct minority with not a lot to back
them up medically and scientifically.

No, I think the situations are very very different and call for much
different strategies. The ACT UP approach won't work with Lyme--it
hasn't and it won't. It just makes us look like the nuts they say we

>NOT in relation to this particular case,
> but as a new approach. I happen to know that govt agencies, NIH and HHS
> for example, have in the past been very concerned when Lyme patients
> converged on Washington in any number (even 10 or 20) that they were
> going to do something outrageous.

Yes because we are perceived as NUTS. So they called security--however
they were not "concerned" in any broader sense. We have no impact, no
clout, no power. And the other thing is that we REALLY do NOT have the
numbers necessary to have any impact, clout or power.

AIDS rallies involved tens of thousands, even millions. So did anti war
rallies in the Viet Nam era.

What is the largest number we have EVER had? A few hundred at a rally
in NY. And often it is ten or twenty folks, some of the dressed up in
tick outfits--and frankly that doesn't add anything to our credibility.

In fact, it hurts--it shows us to be nutty and that is how they dismiss
us and further marginalize us.

All this serves is to vent anger and ire--and it is not effective for
us in our situation, hasn't been and won't be. How many more years do
we have to do the same thing and have the same dismal results?

If a LYme rally occurred in the woods and no one was there to

> Don't you ever get tired of people being so damn "nice?"

Well, yes but probably not in the sense that you mean. I am tired of
the catering to the most delicate sensibilities and when someone
offends someone else they are shunned--and offending someone has often
been just because one disagrees and says things like a rally is
pointless and not going to be effective.

I do NOT think that being angry and ranting at govt officials or
doctors is going to change their minds. We face a MUCh different
problem--changing attitudes in medicine. And you do NOT do it by
yelling and screaming and calling doctors names.

Medicine as a cultue is often conservative and ideas are very difficult
to change--to change the "conventional wisdom" takes time and effort to

You CANNOT legislate it or demand it.

It is a slow painstaking effort that may take years and years but it
involves convincing and persuading by producing our own studies and
evidence and slowly changing people's minds.

Barry Marshall did it with H Pylori. He just received a Nobel prize
too! Years ago he was considered a whacko! And laughed at. He did it
not with yelling screaming cursing protesting rallies but by producing
evidence and changing minds and attitudes.

And that is what we have to do.

Will it be easy or happen overnight? NO.

But after a couple of decades of the former approach failing, we
haven't begun. If we had begun years ago, we'd be that many years
closer. The journey of a thousand steps begins with the first one...

>Oh, I forgot, you aren't nice.

You'd be surprised. I can be. But I can live with not being nice too.

>But I have been
> "nice" and look what they did to us and continue to dish out. You have
> lambasted me for my role on the advisory committee, and maybe I was too
> nice. I wasn't even that nice, but was not able to effect any change.

I acknowledge that PART of the problem was that you WERE lied to.

BUT part of the problem was that you were naive--rather than nice.
Naive in that you needed to get things IN WRITING. You needed to
understand that you DID have certain powers--there were laws about
advisory committees and you were bamboozled--but you didn't do what you
needed to do to understand your powers and to exercise them
effectively. And your options were not limited to signing off and
keeping quiet. At some point your best option was to resign and make
public WHY. And to make issues out of what was going on.

Instead, and it is archived here, people raised concerns--that were
prescient--not just hindsight but warnings aired in advance.

And, as is too typical in Lymeland, people were told to stilfe. The
dissenters were accused of some type of disloyalty. We were told this
is the best we can do and be quiet and go along with things.

It was all very naive. And, incompetent.

But, it was the first time for so many and naivetee ruled the day.
Seriously no disrespect intended.

My bigger issue with it all is that there is no apparent recognition of
the mistakes that were made and no indication that there were any
lessons learned. Because the same attitude is displayed when we've
discussed legislation for example. If we don't support it--and we point
out real problems with it--even real risks and dangers it is WE who are
lambasted and accused of disloyalty and told to stifle--again. Same

And I dare say if the NIH did another chronic Lyme study, the same
thing would happen today. The same way with many of the same people

That's the issue.

I also found it very offensive that you refused to answer questions
posed--after all, you were supposed to be a PATIENT representative.
Don't you think that includes some accountability to those you're
supposed to be representing?

> This has nothing, and everything, to do with where Jones is today, and
> I think we all should look at it and change our strategy. Don't you? Or
> are you satisfied with progress? Oh, I forgot, you also don't like
> legislation, presumably even dr. protection legislation such as was
> passed in California recently.

Were doctors being prosecuted in California? Did it change anything?
Don't be so dismissive of the comments that dritte and I have made
about legislation Phyllis. Look at the concerns we've raised--the
issues we've raised.

NO I am NOT satisified with the progress. I see zero steps forward and
many steps back.

Which means that perhaps a VERY different strategy is called for.

And not necessarily one where we are angrier and more militant. Or rant
and rave MORE rather than less.

>So what DO you suggest. How about
> pouring blood in files? Lying in the streets? Tying ourselves to trees?
> Or lie there and get kicked again, and again, and again?
> ps your use of the term "YOUR AGENDA" in capitals gives my suggestion
> much more weight than I would give it. It is only an idea thrown into
> the ring to be discussed, not AN AGENDA.

I suggest that we need to raise money ourselves, provide funding for
studies, build a quantuum of evidence to support our beliefs in the
proper approach to diagnosis and treatment, work WITH academics,
establish our credibility, get our doctors to STAND up--and DEMAND that
they do the right thing--not support some of the disgusting and abusive
practices that go on in SOME llmd offices. That we make rational
decisions, think before acting, and act rationally and in a way that
has some chance of being effective. First I think we need to understand
where we are, what the problem is that we're dealing with, and then
devise strategies to help ourselves.

It is not a plan designed to satisfy the desire for instant
gratification. But again, the journey of a thousand steps has to start
with the first one. And if we do the same damned thing for the next
twenty years that we've done for the past twenty years, we're going to
be twenty years later and even further behind the eight ball.

Sorry there are no simple answers.

But seriously, why don't we have marches for raising funds and
awareness, golf outings, dinners, auctions, runs, telethons etc--and
have our focus on those things to raise money for research--money that
we control and direct. And if we raise money we WILL attract credible
researchers because they need money. And seed money for research will
lead to more research, and then we can get NIH funding for OUR
research--we complain now that we don't get money--but show me the
proposals by our guys that have been submitted and rejected? In fact,
we demand more money for NIH research and CDC programs on Lyme but
right now who do we have that is going to use it in a way that we
approve of? Right now that money is going to Allen Steere et al--do we
really WANT more money for him?

The federal lyme bills are disastrously flawed and would only
accomplish things like that.

I know this probably isn't what you want to hear, and I know it will
not make any difference that I'm saying it, but let's check back in
another 20 years of doing it the way it has been done and maybe then
you'll see that if we did what I'm saying we would have been 20 years
of steps further on our long hard journey....

> Mockingbird wrote:
> > Let me explain why this "strategy" is so ill conceived.
> >
> > >From the standpoint of the CT medical board (and pretty much every
> > medical board in the country without exception), it is NOT correct to
> > say that Lyme patients do NOT have access to care.
> >
> > And, in fact, it is demonstrably wrong.
> >
> > What you REALLY mean is that they do not have access to the care that
> > YOU think is appropriate.
> >
> > However, 99.9999% of the medical community believes that the IDSA IS
> > appropriate--it IS the "standard of care."
> >
> > Even you can't argue that--you can take the position that you think it
> > sucks (and I do too). But it IS the standard of care. You even argue
> > that is a problem (and I don't disagree).
> >
> > So rather than taking on the effort of trying to prove that the
> > standard of care is wrong globally, in the context of this case, what
> > is a much better strategy would be to say that IT WAS NOT APPROPRIATE
> >
> > Argue that this is the exceptional case. Because then you're not taking
> > on the unecessary burden of proving that the IDSA is globally
> > incorrect--in fact, the IDSA and all that it is based on recognizes the
> > unusual case that does require more treatment. Rather than arguing that
> > congenital Lyme is common, just argue that it happened here. Why take
> > on more of a burden than you would have to?
> >
> > NOT FOR YOUR AGENDA--but for THIS case.
> >
> > So rather than arguing that Dr Jones does this frequently and he is
> > right to do it, which only opens up other cases he's handled to
> > scrutiny and presents the board with a pattern of activity, just focus
> > on the facts of THIS case. Let him argue that his diagnosis HERE was
> > correct, his treatment HERE was correct, that in THIS CASE no one else
> > would treat the kid.
> >
> > Do you see the difference in approach between "inserting patient
> > interests" and advancing YOUR AGENDA and defending Dr Jones IN THIS
> > CASE?
> >
> > Your way is sure to martyr him, and a dead martyr is NOT worth more
> > than a living saint except if you're starting a religion.
> >
> > And rather than starting a religion the focus here is MUCH more
> > practical: saving Dr Jones license and his ability to treat children
> > with Lyme.
> >
> > In fact, in reality, none of this probably flies because IF the kids
> > were in such dire need of diagnosis and treatment Dr Jones has no
> > excuse for not having simply made time to see the kids earlier--from
> > the standpoint of the board at least.
> >
> > So rather than making it a circus or a big pr event or an opportunity
> > to advance your Lyme crusade, the best resolution of this case is most
> > likely a defense that the children were NOT harmed, that the diagnosis
> > was most likely correct or at least had a reasonable basis, that the
> > treatment was reasonable and did no harm, that treatment was properly
> > monitored, and while it would have been better to see the kids FIRST,
> > he will do so in the future.
> >
> > And that no draconian penalties such as license surrender suspension or
> > removal should be considered--that a lesser penalty is all that would
> > be appropriate--that Dr Jones has a stellar reputation and an
> > unblemished one and an impeccable record and there are plenty of
> > patient testimonials, awards, accomplishments and he is a benefit to
> > patients and the community is much better off with a good doctor who
> > perhaps made a mistake or error in judgment than without him.
> >
> > So slap him on the wrist, make him take some additional CME courses and
> > let's all move on.
> >
> > Without PR, without fanfare, without trying to prove anything more than
> > that.
> >
> > Because making it HIGH PROFILE will force the board's hand--make them
> > make an example of him, make it impossible to achieve such a non trial
> > disposition of the matter.
> >
> > Do you hear what I'm saying Phyllis?
> >
> > The letters from patients should NOT say "Dr Jones treated my kids for
> > months without seeing them" or anything like that--it will NOT help to
> > make it a point that this is a pattern and practice and try to justify
> > it.
> >
> > See even if the standard of care SUCKS, the truth is that "negligence"
> > in medicine is defined as a deviation from the standard of care. So
> > deviating from the standard of care is NOT a defense, and taking on the
> > task of proving the standard of care is wrong is taking on more than
> > necessary and might lose the day anyway--you could lose while
> > winning--because it would still be a deviation and thus negligent.
> >
> > And honestly diagnosing and starting treatment without ever seeing a
> > patient--for MONTHS is something that is hard to defend (we understand
> > why it was done but the medical board NEVER will and NEVER will condone
> > it--NEVER).
> >
> > So all the fuss that you want to start, and your PR strategies and
> > interventions by muckety mucks can ONLY hurt.
> >
> > IF AND WHEN the legal team decides otherwise they will let you know.
> > And then tell you EXACTLY what they want done. ANd then--if you REALLY
> > want to help, you will do EXACTLY THAT and NOTHING MORE.
> >
> > No embellishment. Nothing more.
> >
> > Here it is from the lawyers:
> >
> > "We are currently in discussions about the case & are forming a
> > strategy to proceed. We will contact you as soon as we are ready to
> > recommend a specific course of action....Please do not take any action
> > until we have a recommendation as it may adversely affect the case."
> >
> >
> > They will form a strategy NOT YOU. DO NOT TAKE ANY ACTION UNTIL they
> > have a recommendation as IT MAY ADVERSELY AFFECT THE CASE."
> >
> > If there is anything about that which you don't understand, please ask.
> > Perhaps we can help clarify that for you. But basically it means DO
> >
> > Thanks!
> >