#75: Hormones, fatigue, children in danger, CDC scandal, name-change
CFS-NEWS Electronic Newsletter
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Chronic Fatigue Syndrome Electronic Newsletter
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No. 75 September 14, 1998 Washington DC
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STUDIES ON HORMONES, FATIGUE /
CHILDREN IN DANGER / CDC SCANDAL / CHANGE THE NAME
>>>1. Hormonal responses to stress in CFS
>>>2. Four fatigue studies
>>>3. Children with CFS forcibly removed from parents by
local authorities
>>>4. CDC scientist charges agency diverted CFS research funds
>>>5. Validity of CFS boosted in American media
>>>6. Change the Name session added to October AACFS conference
>>>7. Editorial: Comments about how we react to the CDC
discrepancies -- by John Friedlich
>>>8. Editorial: Change the Name update -- by Roger Burns
[The policy of CFS-NEWS is to lead with news stories about research
and other publications. The publisher does ask readers to take
particular notice of article number 3 in this edition which reports
on children who have CFS who are being taken from their parents by
local child care authorities.]
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>>>1. Hormonal responses to stress in CFS
A study of hormonal response to exercise in female CFS patients found
abnormal responses by some measures and normal responses by other
measures.
The study was conducted through the CFS Cooperative Research Center
in Boston, and involved eight CFS patients in each phase of the
menstrual cycle who were matched against eight luteal-phase controls
and seven follicular-phase controls. The study found no differences
between patients and controls when measuring changes in post-exercise
counts of circulating neutrophil, lactoferrin, plasma C3a des arg and
creatine kinase. However, differences were seen in relationships
between basal neutrophil counts and plasma progesterone
concentrations, and between exercise-induced neutrophilia correlated
and both urinary cortisol and plasma creatine kinase.
The researchers made the following conclusions:
Contrary to the original hypothesis of this investigation, CFS
patients did not exhibit greater systemic manifestations of an
inflammatory response than healthy women as defined by the
parameters evaluated in this study, i.e., neutrophil mobilization
and activation, complement activation, and plasma creatine kinase
activity. However, previously described endocrine relationships
with the circulating neutrophil pool were observed in the control
group but were absent in the patients.
They further concluded that the study provided "additional evidence
that CFS patients can be differentiated from healthy individuals by
objective physiological and immunological measurements." See the
following:
Cannon JG, Angel JB, Abad LW, O'Grady J, Lundgren N, Fagioli L,
Komaroff AL. Hormonal influences on stress-induced neutrophil
mobilization in health and chronic fatigue syndrome. J Clin
Immunol. 1998 Jul; 18(4): 291-298.
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>>>2. Psychology studies, and sleep disruptions in youths with CFS
[The July 1998 edition of the Journal of Psychosomatic Research was a
special edition on sleep and fatigue. Four articles within that
edition are about CFS, and are described below.]
Deale et al. reconsider a previous finding that beliefs about the
cause of one's illness, if it is CFS, are associated with the course
of the illness -- in short, that those believe that CFS has a
physical cause tend to have worse health than those who do not hold
such a belief.
In the current study, 60 patients were given cognitive behavioral
therapy (CBT) or relaxation therapy, and were tested against their
beliefs about the cause of their illness and also about the need to
avoid exercise and activity. Results showed that beliefs about a
physical cause of their illness were not associated with a poor
outcome. However, beliefs about the need to avoid activity were
associated with poor outcome.
The authors conclude: "This study suggests that physical illness
attributions are less important in perpetuating CFS than has been
previously argued.s Patients do not need to change their beliefs
about a physical basis for CFS to get better. It may be more
helpful, and lead to better outcome, if patients are encouraged to
test out beliefs of avoidance of activity through a program of
carefully graded activity."
See the published article as follows:
Deale A, Chalder T, Wessely S. Illness beliefs and treatment
outcome in chronic fatigue syndrome. J Psychosom Res 1998 Jul;45(1
Spec No):77-83
A psychological study of 98 CFS patients found "patients who
considered their illness to be a serious condition, who believed that
they had no control over their illness, who saw little possibility
for cure, and who believed their illness to have serious consequences
to cope with their illness in a passive way, report higher levels of
impairment in physical and social functioning and report greater
problems in mental health and vitality. A series of regression
analyses showed illness representations to be stronger predictors of
adaptive outcome than coping scores." See:
Heijmans MJ. Coping and adaptive outcome in chronic fatigue
syndrome: importance of illness cognitions. J Psychosom Res 1998
Jul;45(1 Spec No):39-51
Fromthe abstract: "Tertiary care patients with chronic fatigue were
followed for 2.5 years to determine if changes in physical and
psychological status were associated with improvements in chronic
fatigue, physical functioning, and return to work. Results indicated
that improvement in psychological symptoms, DSM-III-R disorders,
physical examination signs, and changes in whether the patient
continued to meet criteria for chronic fatigue syndrome (CFS) were
associated with recovery from fatigue, improved functioning, and
return to work. Patients who never met CFS criteria or only met
criteria at the initial assessment, reported improved physical
functioning. Patients whose psychiatric disorders and physical
examination signs were still present at a mean follow-up time of 2.5
years were more likely to have persistent fatigue and work
disability. Loss of physical examination signs was a significant
independent predictor of improved functioning and return to work.
These results suggest that psychiatric status, as well as physical
status, are associated with recovery from chronic fatigue."
See:
Russo J, Katon W, Clark M, Kith P, Sintay M, Buchwald D.
Longitudinal changes associated with improvement in
chronic fatigue patients. J Psychosom Res 1998 Jul;45(1 Spec
No):67-76
Fromthe abstract: "To provide objective information about sleep
physiology in young people with chronic fatigue syndrome (CFS), home
polysomnography (PSG) was performed on 18 teenagers, aged 11-17
years, in whom CFS had been diagnosed according to internationally
accepted criteria. The results were compared with those for healthy
controls matched individually for gender and age. Compared with
controls, CFS subjects showed significantly higher levels of sleep
disruption by both brief and longer awakenings. Disruption of sleep
in this way could at least contribute to the daytime symptoms of
young people with CFS. The underlying cause of the disruption needs
to be considered in each individual case. Further research is
required to clarify the relative contribution of this neurobiological
aspect of CFS in young people."
See:
Stores G, Fry A, Crawford C. Sleep abnormalities demonstrated by
home polysomnography in teenagers with chronic fatigue
syndrome. J Psychosom Res 1998 Jul;45(1 Spec No):85-91
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>>>3. Children with CFS forcibly removed from parents by
local authorities
There are at least five cases of children with CFS/M.E. who have been
forcibly removed from their parents by local authorities and placed
in psychiatric units, and dozens more children are under a current
threat of removal -- this from author and child advocate Jane Colby
and various reports from the British news media.
Colby is asking that CFS/M.E. sufferers who have found cognitive
behavioral therapy (CBT) to be harmful (reportedly the treatment of
choice for CFS/M.E. in the psychiatric hospitals) to please send her
a brief written account of their experiences so that they may be
submitted as evidence in the pending court cases. Several of these
cases are described below.
Colby tells CFS-NEWS that there are certainly many more than five
cases of children incarcerated against the will of their families.
One case, about "Child X", was broadcast on Channel 4 News (Britain)
on August 26. A court injunction has for now blocked any public
discussion that would reveal the identities of the family or the
psychiatric hospital involved in that case. The Channel 4 News
report said in part:
The court's ordered that he be treated in a locked hospital ward.
His parents had wanted to care for him at home. The police raided
their house. Child X's father was jailed until the boy was handed
over for compulsory psychiatric treatment
Channel 4 asked British psychiatrist Simon Wessely to comment on
these kinds of cases. Wessely responded that they are so rare that
discussing them distracts from the real business of explaining how to
manage and treat CFS.
Child expert Jane Colby tells CFS-NEWS that many parents whose
children have, or are threatened to be, removed are afraid of
speaking up about their cases in public or to advocacy organizations
for fear that the authorities will deal more harshly with them.
Below are three further reports on this issue. The first is a plea
from Jane Colby for testimony about CBT therapy. Second is an
article from The Big Issue weekly magazine (Britain), with a forward
from Ted Shaw. Last is a summary of an article that appeared in The
Scotsman.
[Note: Ted Shaw of Australia has a web page that focuses on these
stories at http://www.networx.com.au/mall/cfs/Psych.htm .]
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[Jane Colby is an author, lecturer, and an expert on child issues.
She wrote the book "M.E.: The New Plague" (1997) and was a
co-researcher along with Dr. Elizabeth Dowsett for "Long-term
sickness absence due to ME/CFS in UK schools: an epidemiological
study with medical and educational implications" published in the
Journal of Chronic Fatigue Syndrome 1997;3(2):29-42. Colby is an
advisor to the National Association of Educational Inspectors in
Britain. The appeal below asks for information that will be used in
many court cases, including one for which the filing date will be in
mid-September.]
Urgent Appeal from Jane Colby
Would anyone reading this who has been made worse (recently or in the
past) by treatment involving exercise and/or cognitive behaviour
therapy please contact me immediately. It appears that the potential
risks of this treatment for some people, especially for children
whose illness has not yet stabilised, are being underplayed by some
doctors. Your information will be kept strictly confidential. Thank
you so much. Just a few words is enough - don't feel you need to
write an essay.
This is urgent as I'm gathering material as proof for a court case
that parents are reasonable in refusing a treatment which evidence
suggests is risky. Any statements would be confidential and if I
needed to use any of them for the court, the people's names would be
removed. They wouldn't be read out either - they would go into a file
for the judge to read.
The aim is to stop a young boy from being taken away from his parents
and forced into a psychiatric institution known to use these
treatments. I have already made a Statement for an earlier court
session, and the judge gave permission for a judicial review at the
High Court later in the year. I now have to do an Affidavit and
include, as well as my statement, the evidence I've been able to
collect. We hope to save the boy and the family.
E-mail to Jane Colby: Ja...@jafc.demon.co.uk
Postal mail to:
Young Action Online
PO Box 4347
Stock
Ingatestone
CM4 9TE
See also the Young Action Online web page at:
http://www.jafc.demon.co.uk/yaonline/index.htm
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CFS children placed in psychiatric units
Foreword by Ted Shaw
Greetings - Denis Scadeng in the UK has been kind enough to scan this
article [below]. I've received permission from the editor of The Big
Issue to distribute this article to the net.
This problem is not confined to the UK. David Bell stated at the
Sydney CFS Conference that he knew of over 20 cases in the US where
the parents of children with CFS had been threatened with the removal
of the children from their care.
This is also a big problem in Australia. There is a very sick young
lady, 15 years old, presently in the psychiatric unit of a hospital
here who was forcibly removed from the care of her mother, who has
done everything within her power to help her much-loved daughter.
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'Inhuman' Scheme Forces Children Into Psychiatric Units
Exclusive by Max Daly
The Big Issue August 17 - 23 1998
Distraught families are calling for a change to an "inhuman"
child protection system which could lead to hundreds of children
diagnosed with ME being forced into psychiatric units against
their parents' will.
Complaints over the treatment of children plucked from their
families by social workers and judges under child protection law
include a girl whose parental visits were linked to how many
times she was sick, and a boy repeatedly told his family had made
him ill.
Symptoms of the little-understood disease ME (myalgic
encephalomyelitis), also known as chronic fatigue syndrome, range
from exhaustion to polio-like disability - forcing thousands of
teenage victims to miss school.
The medical world is divided between those who believe the
condition is a mental disorder and these who accept it as
physical. Each side has preferred treatments, although none have
been proven to work.
But parents say their children face being taken into care if they
disagree with local doctors and social workers over the method of
treatment. Families say they are often blamed for their child's
inability to recover because ME is misunderstood.
If they are seen as harming their own children by keeping them at
home, local authorities can evoke the same powers used to remove
children from violent or sexually abusive families.
According to charity Action for ME, around 450 of the 600
parents seeking advice on children with the disease each year
feel threatened by a social services investigation into the
family.
One father, who did not want to be named, told of his battle to
keep his 15-year-old son at home. He was a bright schoolboy and
he got a virus. Then he couldn't walk. It was a classic case of
ME.
"Our local doctor and social services department wanted him to go
to a psychiatric hospital. But I disagreed. So we were frog-
marched to a child protection conference in front of 14 people
including social workers, solicitors and doctors and accused of
putting our son at risk. It was horrendous, we had no opportunity
of giving our case fairly".
Dr Alan Franklin, a retired consultant paediatrician, said: "This
treatment of families is inhuman and is based on doctors
misunderstanding the disease. It is not a psychological illness
but it does have psychological effects. The physical side of this
illness is played down by some doctors".
Parents concerned about treatment given to child sufferers of ME
can write to Young Action Online, P0 Box 4347, Stock, Essex CM4
NTA.
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SCOTLAND: 12-YR-OLD WITH CFS/ME MAY BE TAKEN FROM HER MOTHER
by Linda Clement
The August 28 edition of The Scotsman reported that a twelve-year-old
girl in East Lothian, Scotland who has been diagnosed with chronic
fatigue syndrome/myalgic encephalomyelitis may be forcibly removed
from her mother's care because her mother insists that her daughter's
illness is physical rather than psychiatric and should be treated as
such.
The girl was diagnosed with CFS/ME by two physicians, including ME
specialist Dr. Nigel Speight. However, both doctors are a
considerable distance from the girl's home, and her local physician,
Dr. Dayeel Goh of Edenhall Hospital in Musselburgh, has refused to
diagnose her with ME. Dr. Goh has referred the girl's case to
government authorities on the grounds that her mother refuses to
consent to the psychiatric treatment he prescribed. Last year the
girl was sent to the pediatric psychiatric unit at Newcastle General
Hospital for three weeks; during that time her condition deteriorated
so severely that she left in a wheelchair.
Dr. Goh's diagnosis is apparently based on only two examinations of
the girl, once at the Royal Hospital for Sick Children in Edinburgh
and once at the child's home in East Lothian.
The child's mother was so upset by the prospect of her daughter's
being taken from her that she took an overdose of pills and collapsed
in February. Both physicians who diagnosed the girl with ME have
accused Dr. Goh of arrogance and insensitivity, and have stated that
her mother is a loving and supportive parent who is being placed
under inordinate strain merely because she dared to question Goh's
judgement.
Dr. Mason Brown, the honorary medical officer of the Edinburgh ME
self-help group, is assisting the girl's mother in dealing with the
Reporter to the Children's Panel, the government authority who will
decide whether or not the girl will remain in her mother's custody.
He is also preparing a dossier of complaint about the case for the
General Medical Council. Dr. Brown said, "The GMC has got to produce
guidelines, and actions should be taken against people like Dr. Goh."
[Thanks to Jane Colby, Carole Lewis, Ted Shaw, Linda Clement, Steve
Obispo, and Deborah Shearer for assistance with these reports.
The full transcript of the Channel 4 News report can be seen at
http://listserv.nodak.edu/scripts/wa.exe?A2=ind9809B&L=co-cure&P=R2
The Young Action Online web page can be seen at:
http://www.jafc.demon.co.uk/yaonline/index.htm
Ted Shaw's web page is at
http://www.networx.com.au/mall/cfs/Psych.htm
Linda Clement publishes the Cfsmail free e-mail news service for
chronic fatigue syndrome, fibromyalgia, and related disorders,
symptoms, and issues. See http://home.earthlink.net/~cfsmail .]
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>>>4. CDC scientist charges agency diverted CFS research funds
In an extraordinary turn of events, a noted CDC scientist has
publicly charged his own government agency with improperly diverting
funds away from authorized CFS research. Dr. William Reeves, the
Center for Disease Control's pointman on CFS research, has filed a
complaint with the U.S. Health and Human Services Inspector-General
to demand an investigation. CDC administrators then canceled a
scheduled study of CFS in youths. The CFIDS Association of America,
a patient advocacy organization, has called for an additional
investigation by the General Accounting Office, an agency of the U.S.
Congress.
Dr. Reeves claims in a written statement that he was told by another
CDC official that when there were fiscal shortfalls in other
programs, CDC administrator Dr. Brian Mahy "always made up such
deficits with CFS and other similar monies". In his detailed account
submitted to the Inspector-General's office, Reeves stated that in
recent years as many as half or more of the millions of dollars
specifically earmarked for CFS research had been secretly diverted to
other programs. Reeves claims that the CDC's reports to Congress
about these expenditures were in fact false statements.
The Inspector-General of the U.S. Department of Health and Human
Services has initiated an audit to look into these matters. Dr.
Reeves has furthermore filed for protection under the
"Whistlerblower's Act", a law that protects the jobs of government
employees while they report government waste, fraud or abuse.
In a newswire story about these events, patient leader John Friedlich
was quoted as saying that said the predominant attitude among CDC
scientists for years has been that CFS "is not important, is not a
real illness and they're not going to commit to try to learn more
about it." These events were also reported on the front page of the
Congressional Quarterly Daily Monitor (Sept. 9), an influential
publication read by lawmakers in Washington, DC.
The CFIDS Association of America has called on patients to write to
Congress to demand an investigation by the General Accounting Office,
an investigative agency that is independent of the CDC and answers
directly to the U.S. Congress.
More details about this story can be found at the following online
links:
Reeves' statement: http://www.cfids.org/news/wr_stmt.html
CFIDS Association's call
to write to Congress: http://www.cfids.org/news/81898.html
Additional details: http://www.cfids.org/news/
[Thanks to the CFIDS Association of America for providing most of the
information in this report. Thanks also to the U.S. HHS Inspector-
General and to the U.S. General Accounting Office.]
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>>>5. Validity of CFS boosted in American media
The validity of CFS as a serious illness was boosted in recent weeks
in the American news media. A letter in a widely read USA newspaper
column, a presentation on an influential American radio news show,
and an interview on the top-rated daytime television show all helped
to educate millions of people about this disease.
A letter from Prof. Anthony Komaroff of Harvard Medical School was
published on June 18 in the widely read "Dear Abby" advice column,
read by millions throughout the USA. Komaroff's letter reads as
follows:
CHRONIC FATIGUE NOT AN IMAGINARY PAIN
Dear Abby:
Dr. Eugene Schoenfeld recently said in your column that most
psychiatrists deny that chronic fatigue is a real disease. I
write to offer a different opinion, shared by a growing number of
physicians who have studied the scientific literature on chronic
fatigue syndrome -- which now numbers
several thousand research articles.
There is no evidence of any psychiatric disorder in a sizable
number of patients with this illness. However, in laboratory
tests, there is evidence of abnormalities in the brain and immune
system of many of these patients. The immune system abnormalities,
fortunately, do not seem to make patients vulnerable to
infections. I highlight those studies in an article published
in the Journal of the American Medical Association in October
1997.
We still do not understand the cause of chronic fatigue syndrome,
but studies around the world show it is not, as Dr. Schoenfeld
seems to believe, "all in their heads".
ANTHONY KOMAROFF, M.D.
PROFESSOR OF MEDICINE
HARVARD MEDICAL SCHOOL
In addition, CFS was featured on a prominent show on U.S. National
Public Radio on July 13. The "Diane Rehm Show" is heard by hundreds
of thousands of people in the USA and it is listened to by many
government decision-makers in Washington, DC, where the broadcast
originates. The July 13th show had several guests discussing CFS
including Dr. Stephen Straus of NIH and Dr. William Reeves of the
CDC. Although in years past these two scientists have been associated
with the "it's all in their heads" point of view, such opinions were
not heard on this broadcast. All participants focused on the
validity and seriousness of CFS. Dr. Straus said that his
understanding of the illness is now substantially different than when
he first started studying it years ago. The CFS topic for this show
was arranged and developed by Kim Kenney of the CFIDS Association of
America.
That organization also arranged for CFS to be one of the topics on
the "Oprah Winfrey" television show broadcast on July 29. CFS
patient Wilhemina Jenkins recounted how a mysterious ailment
destroyed her career as a physicist and disrupted her ability to take
care of herself. The seriousness of CFS was also endorsed by that
show's guest co-host, Dr. Nancy Snyderman M.D. of ABC News who said
that the disease might be caused by one or more viruses, but medical
research was not yet certain on that point.
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>>>6. Change the Name session added to October AACFS conference
[The following statement was released by the CFIDS Association of
America.]
Session to Discuss Change of the Name "Chronic Fatigue
Syndrome" Added to AACFS Meeting in Boston in October
A 90-minute session to discuss changing the name of "Chronic Fatigue
Syndrome" has been added to the AACFS meeting in Boston (Cambridge),
Massachusetts. The session will be held on Monday evening, October
12, from 6-7:30PM, and will be co-sponsored by the CFIDS Association.
The results of the session will then be presented to the Chronic
Fatigue Syndrome Coordinating Committee, created by U.S. Secretary of
Health and Human Services, Donna Shalala. The Committee will be
meeting the next day, at the Cambridge Hyatt Hotel where the AACFS
meeting will be held.
The session will be chaired by Dr. Anthony L. Komaroff, co-organizer
of the AACFS meeting. It will be open to anyone attending the
meeting who wishes to listen. In order to allow the greatest number
of individuals an opportunity to present their thoughts, the session
will be organized in the following way:
1. The 90-minute session will be divided into 12 presentations of 5
minutes each, with 15 minutes in the middle and 15 minutes at the end
of the session for discussion.
2. Each presentation should provide proposed SOLUTIONS (a proposed
new name, or a process for developing a new name), and not simply
point out the inadequacies of the current name.
3. Any person - PWC, clinician, researcher - can apply to speak.
People who wish to give a presentation must send a note indicating
their wish to speak, but NOT including the statement they would make.
Notes should be sent to the following address by Monday, September
21, 1998: AACFS Meeting, 222 Rock Island Road, Quincy, MA
02169-3841, Fax # 617-472-5157. Each note must contain the address
or fax # where the individual can be reached, to inform them of
whether or not they were selected.
4. On Tuesday, September 22, 1998, a lottery drawing will be held in
Boston. Each person's request to speak will have been placed inside a
sealed, blank envelope. The first 12 envelopes pulled out of a
basket will be opened to reveal the identity of the speaker. People
will be selected to speak in the order their envelope was pulled.
Five additional envelopes then will be pulled: these individuals will
be chosen as alternate speakers, if any of the first 12 individuals
are unable to come.
5. Since some people who wish to speak may not be able to attend, we
will be able to show 5-minute audio- or videotapes from those who are
chosen by lottery to present.
6. Each speaker will be required to submit a written copy of their
brief remarks on October 10, the first day of the meeting. Dr.
Komaroff will enter these comments into the record of the CFS
Coordinating Committee meeting the next day, to help the Committee
consider if it wishes to make formal recommendation.
7. In order to be sure that all speakers selected by the lottery have
their chance to speak, each speaker will be strictly limited to 5
minutes. A timing device will sound a buzzer when 5 minutes has
elapsed. If any of the selected speakers and alternate speakers
cannot make the session at the last minute, the time they would have
been given will be used for discussion.
It is hoped that this session will move forward the process of
finding a better name for CFS.
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>>>7. Editorial: Comments about how we react to the CDC
discrepancies -- by John Friedlich
I hope that all the CFIDS organizations rally behind an effort to get
not just a full investigation of the CDC's misappropriation of funds
and to fire those involved, but to also call for an expanded
investigation of how ALL branches of HHS have handled CFIDS matters
and utilized CFIDS earmarked funds. Also how the SSA has handled
CFIDS related matters since the SSA is no longer part of HHS, but was
until recently.
Further, Dr. Reeve's statement seems to imply the CDC did not just
use funds earmarked for CFIDS as "slush funds," but possible also
other funds meant to be used for other illness as his convenient
"slush funds" as well. If it comes out what those other "slush funds"
were meant for we might be able to rally other patient/advocacy
groups.
Because the CDC's questionable use of CFIDS funds appears to go back
beyond when Dr. Reeves became Chief of the Viral Exanthems and
Herpesvirus Branch, I would hope the GAO investigator will also
question Dr. Walter Gunn, Dr. Reeves predecessor.
I firmly believe if all PWCs and CFIDS groups rally together in
getting this to Congress's attention, demanding Congress's action,
and try to get coverage in the media, that there is potential for
change. What I'm talking about is not necessarily a singular unified
voice from the CFIDS community, but all our voices at the same time.
We all have and need to have our individual political styles/
approaches. Those differences that can make us stronger or weaker. If
there is a loud rallying cry from throughout the CFIDS community and
if we can spark the interest of Congress and the media, it will set
the stage for the more main stream CFIDS groups like The CFIDS
Association of America, the AACFS, and those participating in the CFS
Coordinating Committee who can possibly enter doors some of us can't
-- or at least be taken a lot more seriously.
This is an opportunity to make a difference -- we can't afford to
drop the ball. I get the impression that some are feeling a rather
defeatist attitude about these matters because so many of our efforts
over the years have brought little change. This time though the door
has been opened from the inside -- a matter that's a lot harder to
sweep under the carpet.
I also think we as PWCs, should ask that the AACFS make a public
comment on their position pertaining to the CDC financial
discrepancies and also write their position in a letter to Dr.
Shalala.
[John Friedlich founded the CFS Summit project of 1996 and has served
as vice president of the Massachusetts CFIDS Association. Again, the
CFIDS Association's appeal to write to Congress, with a sample
letter, can be seen at http://www.cfids.org/news/81898.html .]
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>>>8. Editorial: Change the Name update -- by Roger Burns
With the approach of both the AACFS medical conference and a meeting
of the U.S. government CFS Coordinating Committee comes another
opportunity to explore a change of name for this illness. Changing
the name, or adopting an eponym, would be an extremely important
component of a needed high-profile campaign to end the unwarranted
stigma of this illness which is so strongly bound up with the current
name.
The challenges remain difficult, however. Government policy remains
bogged down. It is difficult to find opportunities to engage
scientists on this issue. And the influential CFIDS Association of
America has not changed its policy of no-change-for-now.
Based on the surveys of patients needs and based on my talks with
scientists, I continue to promote the following policies:
- change the name, or adopt an eponym, right away
- patients should not pressure scientists for a premature change to
a wholly new physiologic name in disregard of scientific
principles. (Therefore until there more evidence has become
accepted, this is leaves the options of an eponym, or one of the
alternative physiologic names that are already in the scientific
literature.)
- if the patient community as a whole should try to declare its own
new name for the illness, such an action will likely be opposed in
public by scientists, and patients will thereby defeat their own
ultimate goal of increasing the legitimacy of the illness.
- the patient community should not try to choose a specific new name
for the scientists to adopt, since many scientists will feel
insulted for having the task of actually choosing a new name taken
away from them. Thus the science community as a whole may oppose
any very specific suggestion. The ideal policy to promote is ask
scientists to (1) pick a new name *now*, and (2) make a choice
with input from the patient community so as to avoids the pitfalls
of continued stigma in a new name.
U.S. Government
The nominal authority for addressing the CFS name-change issue in
government is the CFS Coordinating Committee. However, the real
position of influence lies with the U.S. Surgeon-General, Dr. David
Satcher. But that official has been isolated by his staff. And CFS
advocates -- even the most influential among us -- have been barred
from meeting with him.
In a special presentation to the Coordinating Committee last May, I
asked the Committee to consider the question of new names, of getting
the Surgeon-General to make a high-profile, dramatic statement to
legitimize the illness, and to create an ongoing panel to further
develop these projects. However, the discussion about these issues
was cut off by chairman Mahy. The one point which was taken up --
developing a high-profile public statement by the Surgeon-General --
had an uncertain outcome and is now in limbo.
The Committee's next 6-monthly meeting is being held the day after
the AACFS conference, on Tuesday, Oct. 13 at the same hotel where the
medical conference is being held.
It is heartening to see that the October AACFS medical conference
will include a session on the name-change/stigma issue. (See article
6 above for details about that session, and see CFS-NEWS #74 for
details about the conference.)
Scientists
It has been difficult to get the attention of scientists on the
name-change issue. My impression is that most of them assume that
the patient community wants nothing less than to prematurely force
the choosing of a new physiologic name. No scientist wants their
career to be jeopardized by becoming involved with such perceived
politicizing of a scientific issue, so they avoid the
patient-originated name change issue.
Is there a prospect that new research announced at the October
conference will lead to a quick adoption of a new name? Science is a
slow process, and research must be done meticulously and must also be
confirmed by several others before it may become accepted enough to
allow a new physiologic name to be chosen.
The major prospect in this regard for the past year or so has been
the research on the Suhadolnik marker which seems to identify a
damaged protein (RNase L) in the blood of CFS patients. Dr.
Suhadolnik is scheduled to speak at the October conference.
Dr. C.V. Herst, one of the researchers who is working with the
Suhadolnik marker, has mentioned in a recent interview that among the
data he has seen (and he may not have seen all of it) the test seems
to show positive for no more than 30 percent of the CFS patients. If
that figure turns out to be correct, then the Suhadolnik test will
help many people but it will not help most CFS patients. Hopefully,
Dr. Herst's brief comment does not reflect the whole picture and we
will be hearing better news.
The October Name-change session
The CFIDS Association of America is now co-sponsoring a name-change
session at the October AACFS medical conference (described in article
8 above). The session is scheduled for the evening of the last day
of the conference, the patient information day -- a time when most
scientists and doctors are likely to have already left.
But if a substantial number of scientists do attend, and if they can
be engaged in a discussion that shows that compromise options are
viable which would not compromise scientific principles, there will
be a real prospect for progress on this issue.
The one guaranteed aspect of this session that is clearly good is the
involvement of the influential Prof. Anthony Komaroff. To the extent
that his attention can be drawn further into the name-change process,
it will make for important progress.
I urge everyone who is concerned with the issue of the stigma and the
name of the illness to participate in this name-change session.
Again, the instructions for participating in this name-change session
are in article 6 above.
Role of the CFIDS Association of America
It has been difficult to make progress on the name-change issue while
the CFIDS Association of America (C.A.A.) has been, in effect,
blocking these efforts.
C.A.A. had begun on a positive note. Early last year they graciously
co-published this newsletter's major survey on this issue, which
garnered 668 responses from patients. Shortly thereafter the
Association announced a plan on how government officials, scientists
and advocates can begin addressing the issue of the name-change.
However, in the next month C.A.A. developed its own survey which
seemed to seek evidence for avoiding a change of name. Then at the
October 1997 meeting of the government Coordinating Committee, the
C.A.A.'s representative on the Committee staunchly announced that its
survey showed that patients do not want to see any eponym adopted,
even if that meant keeping the name CFS in place.
This was a major blow to the name-change effort, for several reasons:
- The government CFS Coordinating Committee is the only regular
public forum where patient advocates might engage government
officials on CFS issues. (Recall that it was the U.S.
government's CDC which chose the name "chronic fatigue syndrome"
in the first place.)
- Any statement from the C.A.A. carries substantial weight at the
Coordinating Committee meetings, because the Committee was created
in large part through the efforts of the C.A.A., working with the
U.S. Congress and other government officials.
- If the 'premiere patient organization' (C.A.A.) states that a
certain controversial topic need not be discussed because the
patients are not pressing for it (as C.A.A. claimed), it makes it
quite difficult for any scientist or government official to
proceed alone into the thick of controversy. A discouragement
from C.A.A. has an extremely dampening effect.
- The eponym option was the only politically viable alternative at
that time for a near-term name-change, so quashing that option
pretty much ended the one remaining avenue for major progress.
- Most importantly of all: the C.A.A.'s announcement was a false
statement. Their own survey did NOT show that most patients
preferred keeping the name CFS over adopting an eponym. Although
I have asked C.A.A. for a further explanation of this incident,
they have declined to comment other than to release the details of
their survey. (See a detailed discussion of this issue, and links
to the C.A.A. survey, at
http://www.cais.net/cfs-news/name-act.htm#CAA-SURVEY .)
At that same government meeting in October 1997, committee chairman
Dr. Brian Mahy said that the government's working group on the
name-change seemed to have no further work to do and he asked his
fellow committee members that it be disbanded. The C.A.A.'s
representative on the government committee was at full attention when
this question was posed, and her response was: silence. Thus the
name-change group was disbanded. (Dr. Komaroff did ask that the name
issue be reviewed at every meeting thereafter, and that seemed to
meet with the Committee's assent.)
In March of this year, C.A.A. issued a policy statement suggesting
that they might at last be endorsing the eponym option. However, at
the following month's government Coordinating Committee meeting the
C.A.A. representative's announced to all that the eponym option --
the only remaining option that might conceivably lead to a quick
change of name -- is not feasible. Therefore, their policy statement
of the previous month did not in fact signal that they were shifting
from blocking the eponym option to promoting it.
Now C.A.A. has accepted co-sponsorship of a name-change session at
the October medical conference. Something good and important may
come out of that session, despite the timing of that session which
strongly undercuts its potential. But what is guaranteed is that
C.A.A.'s participation in this event will make them look like they
are "doing something" even if they are not, on an issue where their
image sorely needs shoring up. I asked the C.A.A. as recently as
last week if there has been any change in their policy on the
name-change/stigma issue. They have told me there is none. It will
be very important for those who care about these issues to watch
C.A.A.'s actions at this session, and at the following day's meeting
of the government CFS Coordinating Committee.
One on one
In my own dealings with the CFIDS Association of America, I have
found some cooperation, but many difficulties. In March of 1996,
before I imagined myself taking a lead on the name-change/stigma
issue, I sent a private memo to the C.A.A. Board of Directors urging
them to take up this issue. I remember very well their response to
my suggestion: absolute silence. This was odd since I had regular
dealings with them at that time, so there was no missed opportunity
for communication. When I asked many weeks later if my private memo
had been received, I was told yes, but there was nonetheless no
official response.
I am stating this now in part to make clear that I did not try to
"steal" any limelight from the C.A.A. by my taking a public lead on
this important issue. The CFIDS Association could have taken this up
from the beginning and have had the honor of being the premiere
advocate of a name change, and no one would ever have known that
Roger Burns had ever played a role in this issue. I wanted C.A.A. to
take this up rather than me because I knew that they could make much
more progress with it than I could.
The following year, an article in Summer edition of the CFIDS
Chronicle characterized me as trying to force upon the scientific
community a new name that would be chosen by the patients. This was
a false statement. My public statements have always made clear that
I have been promoting the very opposite policy, in testimony before
the Coordinating Committee and in this widely-read newsletter. I
have always urged patients to avoid such a program, since clashing
with scientists would undermine our higher goal of eliminating the
stigma of the illness, which cannot be accomplished without the
support of the scientific community.
I have in the past asked C.A.A. to correct this false
characterization that was made about me in front of their colleagues
on the influential government Coordinating Committee, and in the
pages of their widely-read Chronicle magazine. I have asked that not
merely should a technical correction be made, but that it be made
clear that I have in fact consistently urged patients to respect the
need of scientists to abide by their professional principles.
Despite ongoing discussions I have had with C.A.A. on other issues,
this request for a correction has gone unanswered.
As I try to imagine what advantage there would be to C.A.A. for
having my reputation damaged among scientists, all I am able to come
up with is that such a claim by them might help them to overcome a
perceived competitor -- myself. As much as such actions might bother
me personally and impair my ability to discuss these issues with
scientists, the name-change effort would not actually be harmed by
such contentiousness if in fact C.A.A. was taking a lead and making
progress on this issue.
But it has been two and a half years and that has not happened yet.
At every meeting of the Coordinating Committee, the C.A.A.'s
representative has suggested to her colleagues that I will be urging
upon them specific names that must be adopted -- a policy that C.A.A.
knows will rankle the scientists. At the October 1997 meeting, the
C.A.A.'s representative circulated a list of alternative physiologic
names which, she alleged, I helped to compile. This list was also
published in the Jan./Feb. 1998 edition of the C.A.A.'s magazine. I
have asked that all of these misrepresentations be corrected. I have
received no response from C.A.A.
I cannot imagine any purpose in these mischaracterizations other than
to undermine a perceived competitor as he attempts to negotiate with
scientists about the name-change issue. Again, if I knew that C.A.A.
would take up the name-change issue in a sincere manner, I would
prefer to defer to them. I have made such an offer to them as
recently as last week. Again, no response.
The C.A.A. has said often in recent months that the name-change
effort is stalled solely because there is not yet any consensus by
both patient and scientists on a specific new name. I perceive such
statements to be an attempt to bait vocal patients into demanding a
specific name. I am sure that C.A.A. leaders must know that such a
reaction would turn off scientists and thus scuttle any effort to get
an effective name change that would garner vital scientific support.
Therefore, such statements by C.A.A. are disingenuous.
I have never mischaracterized C.A.A.'s policies, to my knowledge, and
I have a standing offer to all that I will publish any needed
corrections that are brought to my attention. I wish C.A.A. would
not mischaracterize those who are more active on name-change issues
than themselves.
Why things are
Why would C.A.A. block a program that they know is an important need
of the patient community? I can only offer speculations.
It may be that their initial cooperation in co-publishing the
original CFS-NEWS name-change survey was based on an assumption that
such a campaign would not go anywhere. Perhaps they were taken by
surprise that the campaign took off so immensely, and that they were
then not in a position of being the number one leader on a vital
patient issue.
Perhaps they are conducting their own background efforts to promote a
name-change, and they are not quite ready to share the results yet?
I have noticed in my discussions with C.A.A. leaders that they do not
seem to have a full grasp of current name-change issues. This
suggests to me that no background efforts by them are going on.
Another possibility is related to the fact that C.A.A. has made a
major investment, both in money and in pride, in the Suhadolnik
research on a CFS marker. In addition to the great medical benefits
to patients that may come from such research, there is a possibility
that if the marker is accepted and it identifies most current CFS
patients, it will be such a scientific landmark that it could totally
legitimize the illness, and also prompt the selection of a new
scientific name for the illness. This would make all other
name-change efforts unnecessary.
Has C.A.A. been thinking this far, and has this possibility played a
role in choosing their policy of "no change for now"? No one can
know for sure because the C.A.A. keeps strictly private the
discussions of their Board of Directors.
Nonetheless, I am concerned about the possibility that C.A.A. may
have been blocking progress on the name-change effort based on a
gamble that such a campaign might turn out to be unnecessary. It
would be much better for the progress to have continued, albeit
slightly delayed with a view to any prospective research
announcements at the October medical conference. Then the process
would have been poised to go forward if the better outcome did not
work out. As it is now, and for whatever reason, the name-change
effort has lost a full year of its progress due in very large part to
obstructions from the CFIDS Association of America.
Conclusion
One of the reasons why the name-change issue needs to be pursued as
quickly as possible is that scientists are actively considering
splitting CFS up into subgroups. Each subgroup may get a different
name, but there still may be a large catch-all category whose
patients may end up with a psychiatrized "all in the mind" kind of
name that will be not much different than "chronic fatigue syndrome".
The effort to re-name the illness as it is currently defined may be
the last chance in a long while for those patients to escape
continued decades of devastating stigma in the medical, legal and
social realms. If we have lost a year's worth of progress, and if no
other sweeping solutions appear soon, then the patient community has
been harmed.
Surveys of patients have made their views clear on all major issues
regarding the name-change -- except for one new question:
If you knew that the CFIDS Association of America was against any
change-of-name for the foreseeable future, would you prefer to
abide by their judgment, OR would you want the name changed as
soon as possible anyway?
It will be best, I believe, to take up this issue after we all see
what takes place at the October medical conference, and at the
government CFS Coordinating Committee which immediately follows it.
I will say for now that I admire the great majority of the work that
the CFIDS Association of America has accomplished on behalf of the
patient community. I want to see that work continue, as we all do.
However, the other needs that have been discussed in this editorial
need to be addressed as well.
In the next edition of CFS-NEWS I will discuss other issues relating
to these matters. That edition will hopefully be published later
this month.
=====================================================================
CFS-NEWS (ISSN 1066-8152) is an international newsletter published
and edited by Roger Burns in Washington D.C. It is distributed:
through the "CFS echo" (discussion group) on the Fidonet volunteer
network of BBSs; via the STJOHNS Listserv on Internet; and a USENET
Newsgroup bit.listserv.cfs.newsletter. Back issues are on file on
the Project ENABLE BBS in West Virginia USA at telephone 1-304-759-
0727 in file area 23, and the valuable patient resource file named
CFS-RES.TXT is available there too. Suggestions and contributions
of news may be sent to Roger Burns by Internet e-mail to
CFS-...@MAELSTROM.STJOHNS.EDU, or at telephone 1-202-966-8738, or
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or post a message to the Internet CFS-L group or to newsgroup
alt.med.cfs.
Copyright (c) 1998 by Roger Burns. Permission is granted to excerpt
this document if the source (CFS-NEWS Electronic Newsletter) is
cited. Permission is also granted to reproduce the entirety of this
document unaltered. This notice does not diminish the rights of
others whose copyrighted material as so noted may be quoted herein.
All trademarks, both marked and not marked, are the property of
their respective owners.
=====================================================================
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can be retrieved via e-mail by creating a message which says GET CFS
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