The main goal of The National CFIDS Foundation, Inc., since it's founding in 1997, has been research that leads to a cause and, hopefully, treatment.  We have always felt that nothing else would benefit a patient quite as much as validation that the trivial sounding name of "chronic fatigue syndrome"  is not only real but is very serious and, we hope, that something can be done about this.  We've come a long way in less than eight years, especially for a group of patients who are all volunteers.  Jill McLaughlin does not, quite obviously, share this vision.  She chose the title of "executive director" (she was never a board member) and, when her own nomination to the CFSAC (Chronic Fatigue Syndrome Advisory Committee) was turned down with the bogus excuse of her having a "conflict of interests" since she was the "CEO" (this group doesn't even have a CEO unlike another national group!), the Foundation was invited to attend and to participate in the CFSAC meetings as an invited guest, she quickly volunteered.  What, then, prompted her to quit and then deny she had quit?  She posted the following to the internet following the board's acceptance of her resignation:

 

     "Have seen lots of distortions and change the subject spin, but wanted to
answer in a straightforward manner why I am no longer with the NCF. I did
not resign. Tried to work things out but got lots of rhetoric and
contradictions and demeaning lectures which overall made little sense but
supposedly it was the board that voted me out.
     "But the board is unaccessible, other than to Gail, and do not know who the
members are but apparently they discuss some things - or with Gail - at
some point. But having these ... all things filtered through Gail makes it
problematic and in the advocacy arena just does not work, and there is no
way to discuss or resolve anything. [I] have tried and basically was not
allowed to contact them - and bringing it up is seen as a threat - they are
sick or want to remain anonymous. (Although the executive board is listed
and they do meet and conduct business to satisfy legal obligations required
by non-profits, that I am sure of, so need not be the next defensive
posture.)
     "I did not honestly see I was doing anything differently than I had in the
past but suddenly, after 6 years of service, I did not understand the issues
or the goals and was being blamed and accused of all sorts of things which
were completely unfounded or legitimate misunderstandings and was
uncomfortable with how things were being handled and said I would probably
quit after the conference. Since arrangements all had been made, thought we
could have maybe worked things out or at least have been adult about it in
what I had assumed would have been in a straightforward, agreed upon, up
front manner.
     "That they didn't agree with and rejected the piece I wrote is a concern to
begin with, but if they didn't want it why not share it? What I wrote using
CFS/ME instead of CFIDS or any of the information that I wrote hardly seemed
like any kind of major affront or in anyway damaging to the NCF regardless
(and if they just didn't want to use it - so what - and we have always used
CFS in the presentations to the committee so this hardly makes makes a lot
of sense). And all this over a term? In the scheme of things, that is really
worth it, isn't it. But seems where advocacy remains stuck and is how we
conduct ourselves and continues to hurt the cause overall.
     "*But this is what got me kicked out immediately by emergency board vote late
Tuesday night - then Gail posted it to the [ResAct] list Wed AM and called
Dr. Fields office and Pat Fero and said I could not represent the NCF. This
is what really happened.
     "Regardless of what happened previously, it is shocking how poorly this was
handled, whoever made the decision. I was concerned about representation on
the committee and was told that someone offered to take my place (so sense
perhaps that may have been it and [they] wanted me out - or for some other
reason).
     "But no one else is able to go to Monday's meeting, and this last minute Jill
got canned no-show act does not look good even for the NCF and reflects
poorly on the patient community when we are trying to be taken seriously and
gain credibility.
     "It may be a patient group but there are times when it is necessary to be
professional and acting in such a petty, ill-conceived manner for no
significant reason I can see has been anything but. Patients do care about
advocacy on this level and had been making headway and we were on the agenda
for a presentation and all arrangements had been made so should have been
some responsibility and personally find this very embarrassing (but trying
to discuss it was rudely and glibly told basically so what - your absence
will not ruin anyone's day and no one cares - but they have another to take
my place anyway).
     "I had no evil intentions toward the NCF but they all agreed I posed some
imminent threat and just couldn't 'trust' me anymore to go to this meeting.
So now Kim McCleary will be the only patient representative at the meeting.
Still hard to fathom what terrible transgressions against the NCF that they
think I could have possibly committed there (or would have wanted to) - but
they couldn't take that chance. Suddenly I am the enemy and frankly find it
is just ridiculous and disturbing and paranoid.
     "The board claims they had to take immediate action of course on my
violations or inability to understand NCF goals and rules (never disagreed
or challenged them that I could see so not sure what in reality what the
relevance was) and presented some real threat, which is, well, also rubbish
and I found it insulting. Or I simply don't understand??? Well plead guilty
as charged because I really don't. Or may have just been a straight-forward
they had somebody else who wanted to do it as they just clearly wanted me
out.
     "But will hear that the committee or the AACFS doesn't matter anyway and
won't really do anything so - so what. The thing is that things are
different and have improved but most are so jaded refuse to see it if it's
right in front of them. And if we do not try then we can't complain about it
- but can keep saying see we told you. And that is where the NCF is stuck,
which actually caused many of the problems.
     "But just the fact that patients are always clamoring for "healthies" to
help, seems that literally driving people away is a bad way to handle things
for whatever reason. Said flat out that in general this is not punishing me,
it is punishing patients.
     "This is not personal, and I just think all individuals and groups should
be held accountable. I sincerely tried, but think this was a huge blunder
and disappointing to say the least, [and] that if this is any indication, things
are being handled and run rather poorly. If this is how the board acts and
operates, perhaps they are the ones who should have been fired. From what I
have seen any credible advocacy is impossible under these circumstances.
Frankly is no wonder we do not get anywhere.
     "Just think patient's deserve to know what goes on - and am sure this won't
be in the Forum. :)
Jill McLaughlin"

So, what's the real story?  It seems that Jill decided she wanted a longer and more thorough explanation of  ME/CFIDS  to distribute at the upcoming AACFS (American Association of Chronic Fatigue Syndrome) and she entitled the paper and referred to the illness as "CFS/ME".  She then had a friend of hers review it who is not a member of the NCF.   This "friend" is listed as a high donor that other national group and also works for them in an "educational" capacity.  The NCF has never used any reviewer that is not part of our own organization.   And, of course, our organization has never been  in favor of changing the name to CFS/ME and continues to abhor the name "chronic fatigue syndrome". The paper also mentioned myalgic encephalopathy, which is not the historical and correct name the NCF favors.  We ARE in favor of our federal government recognizing myalgic encephalomyelitis (ME), adopting the designation of the World Health Organization (WHO) and listing it, as they do, under a neurological condition.  We don't expect them to anytime soon.  That's another reason why this group feels that research is so important!  If research proves that myalgic encephalomyelitis is the correct name, it would make it that much more difficult to try and refute science which is not abstract, but black and white.  In this long explanation she wrote, Jill also lauded one physician who diagnosed his patients with ME, but refers to it as myalgic encephalopathy.  That's another way to dilute the name and the NCF is NOT in favor of changing ME-itis to ME-opathy.  The "opathy" means "oh-oh, something's wrong" but the real name of ME-itis means it is an inflammation of the brain and spinal cord.

     The "board" that Jill claims is "inaccessible" is the executive board (EB).  I am not on that board, but on a larger and more general board made up of various committees.  Not all those on the committees are named because some are worried that their own disability status will be in jeopardy while others are able to work in some capacity and are professionals (some are M.D.s that are on my committee) that do not want it known that they have this illness.  The EB has remained pretty much the same from the very start. One member, Marilyn Stewart, died a year and a half ago but Gail, Bernie, Al, Marian, and Helen continue to lead us.  Jill knew who everyone who was on this board. The entire general board knows.  In fact, Jill has met each one.   She had been e-mailing and/or calling most members of this board after she was told the board would not allow her "educational facts" to be published under this group without some changes.  None of the EB were in favor of "CFS/ME."  None of those on the EB she contacted changed their minds.  How did Jill take this?  If she couldn't have her way, she told two separate members of the EB, "I quit."  But she decided she would not quit until after after she went to the CFSAC meeting and to the AACFS conference (the latter at our expense for the plane ticket although board members said she did not report to them at all).  So, at this time, she was still considered to be a representative of the NCF.

     Not satisfied that the board would let her "quit", Jill then posted her educational factsheet on the internet on an announcement list with a cryptic note that the NCF had "rejected" it and also put it on a private list for research and advocacy. Jill did not mention the reason for the NCF's "rejection".  The executive board felt that if she was still representing the Foundation at this time, she should not be putting anything out publicly that they disagreed with. It showed poor judgment as well as a lack of respect for our organization and our goals that both the EB and the committees feel are in the best interests of the patient community. If she did this, could she be trusted to represent the principles that this national group was founded upon?  The EB decided they could not and accepted her "resignation" effective immediately.  Jill was, quite obviously, not pleased.  Doesn't "I quit" mean she quit?  Or was that a threat in order to get her own way? Didn't she know, after all these years, threats to the NCF (and they've endured plenty!) don't work?  Did she change her mind too late?  If so, why would she publicly post what the group she represented did not agree to have posted?  If the information in it was so good, why wasn't she willing to work with others to change what the group objected to?  I've had suggestions turned down.  I didn't "quit" and then say I didn't quit!  When you're part of a group, you work with them.

     After several more posts bemoaning her fate put online by Jill, this was publicly posted on the internet by our president of the NCF, Gail Kansky:

      "The board made her resignation effective
earlier than she had wanted only when they felt Ms. McLaughlin could no
longer accurately represent our group. The Board of the The National CFIDS
Foundation has not changed goals since our inception. It was this last
fact that Ms. McLaughlin refused to accept that made the board make a
decision about whom was going to represent us on any level.

     Our primary goal has always been funding research that would translate into
making a difference to the patient community. The first issue of The
National Forum, put out in the summer of 1997, said that "The National
CFIDS Foundation, Inc. was created out of need and concern. The concern
was for all PWCs (people with CFIDS) who are still suffering in the same
way they did a decade or more ago. They suffer not just from the disabling
and baffling range of symptoms but from the ignorance, criticism and
disbelief regarding the illness. We are the misunderstood and the maligned
who live with an invisible and hard-to-prove illness who want to join
together to change those who would judge us, label us, scorn us and
ridicule us. We are you..."

     At no time has the National CFIDS Foundation, Inc. been in favor of
adopting the trivializing and abusive name of "chronic fatigue syndrome"
and no member of the board disagrees with this. While there were many
factors in a decision, this is merely one of our fundamental values that we
refuse to waiver from. When another refuses to adhere to any one of our
goals, it would be irresponsible to have them represent our patient
community in any setting. If it meant that we would not be represented at
one government committee meeting (actually, there was a member of our group
who did attend the CFSAC but not in an official capacity), no representation
was preferable at that one meeting to that of one representing us who no longer
shared our values.

     The National CFIDS Foundation feels that one individual should not and must
not press their own aspirations and desires on a national group with goals that must
continue to be paramount for the greater good of the patient community."

     There have been many other committees for "CFS".  The CFS Advisory Committee is not the first federal committee.  The last one, a "Coordinating Committee" was found by another federal agency (Government Accounting Office) to have never "coordinated" anything!  That committee just stopped meeting even though the charter for that federal group had not run out.  Why?  There never were any answers.  Will this federal committee accomplish anything more?  It may, but I don't expect any major things to happen. No federal committee for any disease has made a huge difference. Do you expect this one to make huge strides when the CDC is determined to study "fatiguing illnesses" and waste our tax money on that instead of on real epidemiology?  And the NIH?  They have an annual budget of $5 billion  just at the National Institute of Allergy and Infectious Disease (NIAID) and guess which illness is the lowest "syndrome" on the funding totem pole at that agency?

     Was this the only reason that the EB decided to accept the resignation of Jill McLaughlin? No. I was told that "several reasons"  were discussed but this board is not vindictive and the members saw no reason to go into all the "whys" of their decision, although it was admitted that there certainly was more than one reason. One member told me that he would never accept anything put out by this Foundation that used the name of "chronic fatigue syndrome" as it had already led to "immense abuse." They did not feel that would benefit anyone.  Most organizations experience internal problems but, when the vote is unanimous, why does Jill insist this group "should be held accountable?"  Shouldn't she have been held accountable when she was supposed to be representing this whole group?  Why does she question the decision of others when they made it clear they did not approve of  certain parts of the informational facts she wanted published under the auspices of The National CFIDS Foundation? Why wouldn't she just change it?  Why would she not listen to what the NCF wanted? Why was it her way or the highway? Where was her team effort? Had her ego gotten in the way?  Is ego all that important when we're all so sick (well, Jill is not, but I thought she should-would-could understand a bit more)?  Was being at one meeting all that important to her that she couldn't wait to try and smear the volunteers who have sacrificed so much on our behalf?  Or is it because she doesn't know enough about the science to appreciate how much this group has done and still is doing?  She says, "This is not personal."  It seems to me to be most personal.  Kinda like sour grapes. 

     Advocacy is a part of this organization as is education, etc., but our primary goal was, always has been, and continues to be research.  And this group does advocate! In fact, one member of that suppposedly "unknown" board stepped up to bat to help me with a pressing problem when no other help was around.  I wasn't even a member at the time! The help was free and my problem was, with time and the advice, resolved.   If that isn't advocacy, what is?  It sure helped me more than any government committee ever has.  Let's be honest here.  Jill did some good work with public relations but then she abused the board's trust.

     I was aware of  this before Jill wrote but when I read it online on a public announcement list, it seemed to be her way of trying to hurt all of us.  Her statement that she was "sure" it wouldn't make the Forum seemed to dare the NCF to tell the truth!  If anything, this organization is known for being bluntly honest. As Norman Vincent Peale said, "Today's armor is put on by girdling yourself with truth!" She called our board members "petty, paranoid, erratic" in a follow-up post and suggested they "be replaced."  By her? If anything, the EB seemed quite professional in not discussing all their reasons to me or to anyone else.  In a later post, she said, "The NCF was solidly committed to using CFIDS." Huh? The facts do not support this in any way but her ongoing verbiage prompted our Medical Director, Alan Cocchetto, to publicly reply on the internet:

"Dynamic organizations are always in a state of flux and changes in
personnel are inevitable. However, generally speaking, no one is
indispensable. The way I see it, the NCF was formally formed in 1997 by
one of the strongest and staunchest supporters of CFIDS patients on this
planet, Gail Kansky. Through her convictions and dedication along with
the support of her attorney husband, Bernard Kansky, the NCF has charted
a new course in advocacy for CFIDS patients. One focal point has
involved concise and well directed research aimed at providing
critically important scientific answers to challenging medical
questions. By directing and funding 'cutting-edge' research, via the
NCF's Research Grant Program, the NCF has supported patient advocacy at
its most important level! Let's face it, we all realize that patient
advocacy occurs at many levels - local, state, federal etc. in many
different ways. But also realize that to impact the true 'bottom-line'
for patients who are so dramatically and seriously ill that their degree
of dysfunction knows no bounds, we must aggressively seek true
scientific answers to this disease.

 

"I came across an old annual report that was written by Marc Iverson in
1991 and I believe it applies today just as it had thirteen years ago:
'There is only one way to drive the medical establishment to come to
grips with CFIDS: scientific research - Period. Nothing else will
validate the existence and seriousness of the disease.'

 

We must continue our focus and resolution to seek answers to this
devastating disease. Science is paving the way."

     Jill posted online reporting on an advocacy meeting, that "Patients are justifiably upset by the trivialization and ridicule brought on by the name chronic fatigue syndrome."  It appears that she understands the NCF is not alone in their hatred of the term "CFS" and may even agree with it. So why her conflicting actions? In the first post quoted above, she wrote, "Frankly is no wonder we do not get anywhere."  Hey, Jill, reread your Forums!  We have!  Read the results of research that the NCF has funded! Many of her posts indicate that she is "healthy" as if being otherwise is a detriment to volunteering.  In fact, there are other "healthy volunteers" on our EB and other committees.  In another post to a public announcement list, Jill again said she did not quit.  Her post indicated that by denying her to represent this Foundation at one meeting meant that the NCF was being "rash" and "continues to divide rather than unite."   Hey, Jill, look in the mirror.  'Nuff said.