Source
Automatically imported from: http://commons.somewhere.com:80/rre/1997/Chronic.Fatigue.Syndrome.html
Content
This web service brought to you by Somewhere.Com, LLC.
Chronic Fatigue Syndrome Newsletter
``` ---
This message was forwarded through the Red Rock Eater News Service (RRE). Send any replies to the original author, listed in the From: field below. You are welcome to send the message along to others but please do not use the "redirect" command. For information on RRE, including instructions for (un)subscribing, send an empty message to rre-help@weber.ucsd.edu
---
Date: Thu, 20 Feb 1997 22:31:18 -0500
From: CFS-NEWS Electronic Newsletter
HHHHHH HHHHHH HHHHHH H H HHHHHH H H HHHHHH H H H HH H H H H H H HHHHH HHHHHH HHHH H H H HHHH H H H HHHHHH H H H H HHH H H H H H HHHHHH H HHHHHH H HH HHHHHH HHHHH HHHHHH
Chronic Fatigue Syndrome Electronic Newsletter
-------------------------------------------------------------------- No. 64 February 20, 1997 Washington DC --------------------------------------------------------------------
CHANGE THE NAME SURVEY / COMMENTS ON BRITISH ROYAL COLLEGES REPORT
CONTENTS
>>>1. Change the Name Survey >>>2. Controversies about the Royal Colleges report >>>3. Network news
-------------------------------------------------------------------
>>>1. Change the Name Survey
[Those who have access to the web may prefer to read this material at http://www.cais.net/cfs-news/name.htm . Please be sure to read the article immediately below before filling out the survey which follows it.]
A. Article and Plan for Action on the Changing the Name, by Roger Burns
[Roger Burns is the publisher of the CFS-NEWS Electronic Newsletter, and is on medical retirement from the U.S. Bureau of Labor Statistics where he was an economist responsible for confidential survey data.]
Many patients feel that one of the greatest burdens of having chronic fatigue syndrome is the name of the illness. The word "fatigue" (which many patients refer to as the "F" word) indicates everyday tiredness. It reinforces negative perceptions that remain with the public and most medical doctors, despite a decade of steady, gradual research advances.
Testimony at San Francisco
I held a forum on changing the name on October 15 at the San Francisco CFS conference. Many patient leaders and medical professionals met there to discuss this issue. From those gathered, it was quickly clear that most favored a name change. Well known advocates including Tom Hennessy, Kim Kenney, Bonnie Gorman, RN, Gail Dahlen, RN, Katrina Berne, PhD, Gail Kansky, Sara Bass, Lea Rhodes, Jon Sterling and Gretchen Mason provided numerous accounts of the biasing impact the name has had on patients.
How Can We Change the Name?
The name chronic fatigue syndrome was officially chosen by scientists in 1988; at that time many of us had a sense that a research breakthrough -- and a better name -- was just around the corner. Nine years later the name is still with us. Most scientists oppose changing the name until the disease process is better understood or the cause is found. However, I believe there are ways to make a change now.
The CFS community could promote one of the less controversial alternative names already in use, such as a variant of "M.E." Another possibility is to promote an eponym (i.e., naming the illness after a well-known person) to be used along with the scientific name in medical literature. There are more than 100 diseases which have both a scientific name and an eponym. For example, amyotrophic lateral sclerosis (ALS) is also widely known as Lou Gehrig's disease and paralysis agitans is better known as Parkinson's disease.
Either an already-accepted name or an eponym could meet the urgent needs of the patient community about this issue, and should not prompt major objections from scientists which could impede any patient-led campaign to change the name. We should also urge scientists to consider officially adopting an eponym themselves or to pick a new scientific name which more appropriately describes the symptoms than CFS does. Either of these options would be a real change for the patients, yet would avoid prematurely identifying a pathology which scientists would clearly object to.
To this end, I am issuing a survey (see below) to solicit views on alternate scientific names and eponyms. Survey results will be published in a future CFS-NEWS and will be presented to Secretary for Health Dr. Donna Shalala, whose office is looking into the issue of changing the name.
If a pattern indicating consensus for a particular name emerges from the survey results, then various CFIDS organizations might join together to promote it as the new name to be used by the public and the media. If two or more names have strong support then a second survey may be needed. Lack of consensus will give us important information as well.
Government Action?
Secretary for Health Shalala must report to Congress before March 30 regarding the name change to comply with language included with the 1997 Appropriations Bill. Secretary Shalala oversees the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH), both of which will have influence over any name change promoted by Secretary Shalala. The new CFS Coordinating Committee, under Secretary Shalala's jurisdiction, is expected to take up the name issue as one of its first orders of business.
A Plan of Action for Changing the Name * First, read this article and respond to the survey. Then write to Secretary Shalala and urge her to commit to changing the name. Make a strong case about how the name of this illness affects your life and that of others, and how it holds back medical research. Send your letter to: Hon. Donna Shalala Secretary of Health and Human Services 200 Independence Ave. SW Washington, DC 20201 E-mail: HHSMAIL@OS.DHHS.GOV (Please send your survey responses and specific suggestions for alternative names only to the address at the bottom of the survey.) Similarly, please write to the American Association for Chronic Fatigue Syndrome (AACFS), a professional organization of doctors and researchers which sponsors bi-annual CFS medical conferences. Their support in changing the name would be influential. Write to them at: Dr. Dedra Buchwald, President AACFS 7 Van Buren Street Albany NY 12206 E-mail: LBAACFS@AOL.COM *
Alternative Names
At forums like the one held last October, there is strong consensus about the need to change the name, but just as often there is disagreement over what to change it to. Without greater unity in the promotion of an alternative name, we cannot launch an effective campaign to get the name changed and widely accepted. We would then have to continue to live with "chronic fatigue syndrome."
The survey on below allows respondents to indicate varying levels of agreement for each name listed, as well as the option to include other alternatives. The survey was developed from suggestions that were solicited from readers of CFS-NEWS and other publications. The names listed all have strengths and weaknesses, some of which I've outlined below.- Myalgic encephalomyelitis. Used in scientific literature, although not as broadly as CFS, it has been widely accepted in most of the world outside of the U.S. This term is listed in the World Health Organization's classification of diseases. Many scientists consider this name inaccurate and discourage its broader use, since the "-itis" portion refers to inflammation of the brain, which is not sufficiently supported by medical evidence. The recent British Royal Colleges' Report recommends against using this name and recommends using CFS instead, however that report has been criticized by the journal Lancet as being biased towards psychiatric views. (See a review of this report in article number 2 below.)- Myalgic encephalopathy. This new alternative has been discussed by several scientists recently. It allows use of the familiar term "M.E." yet omits "-itis" to which many scientists object (see above). This name has not been in use by scientists or patients. In addition, while "encephalopathy" means "brain disease" to American doctors, it has a much more serious connotation to British physicians, and there could be objections based on lack of scientific evidence for this term as well.- CFIDS, i.e., Chronic Fatigue and Immune Dysfunction Syndrome. This name appears increasingly in U.S. government documents, and is becoming more well known with the increasing influence of The CFIDS Association of America. As a longer variant of CFS, it tends to dilute the "F" word (fatigue). However, many patients feel that one of the main purposes of a change-the-name campaign is to eliminate the "F" word altogether. Also, many scientists claim that there is insufficient evidence to prove that immune dysfunction is a prominent characteristics of this disease. In addition, the name CFIDS is not used at all outside of the U.S., and it is only rarely used in the medical literature.- Ramsay's Syndrome, or Disease. (The question of whether to refer to these eponym choices as a disease or as a syndrome is discussed in the survey itself.) The late Dr. Melvin Ramsay of Britain was the first scientist to formally define and name myalgic encephalomyelitis in an article that he published in the journal Lancet in 1956. Many assert that Dr. Ramsay is clearly associated with the study of this specific disease, while others say that is unclear that the outbreaks Ramsay studied were CFS. While we might expect that naming the illness after a British scientist might not be well received by American patients unfamiliar with him, many American patients who have read about his work view him quite favorably. Another note: a disease called Ramsay-Hunt refers to a herpesvirus infection of the facial nerve, but there are researchers whose names are associated with more than one disease.- Osler's. Sir William Osler was a prominent turn-of-the-century physician who helped structure the methods of modern medicine. He advocated that physicians listen intently to the patient when taking a medical history (a recommendation appreciated by many current-day CFIDS patients). William Osler's name has great stature in the history of modern medicine. In addition, it was used in the title of Hillary Johnson's book Osler's Web, a critical chronology of American medical research of CFS published in 1996. Many patients used this book as a rallying point for deep concerns about the perceived misdeeds of government scientists responsible for investigating CFIDS, while many researchers consider Osler's Web to be an unwarranted assault upon their colleagues. For these reasons there may be opposition to choosing a name for the disease that is associated with more controversy. Further notes: Osler himself was not associated with any research on CFS/M.E. Two other illnesses bear Osler's name, specifically Rendu-Osler-Weber Disease (hereditary hemorrhagic telangiectasia) and Osler-Vaquez Disease (erythremia). Both have sometimes been known by the name Osler's Disease.- Peterson-Cheney, or Cheney-Peterson. Drs. Dan Peterson and Paul Cheney treated patients during the 1984 CFS outbreak at Incline Village, Nevada and have since conducted and promoted much research into the illness. They are considered controversial by some of their scientific colleagues, and may not be well known outside of the U.S. When asked their opinions on this alternative, Dr. Cheney cautioned that an eponym based on a living person would not gain broad acceptance, but did not oppose having his name in the survey. He recommended using CFIDS or myalgic encephalopathy. Dr. Peterson has made no comment. (Dr. David Bell's name was also suggested by many, but he asked that it not be considered.)- Nightingale's. (A general note: no historical figure has been definitively diagnosed with CFS/M.E. Purists may object to choosing any person in history, who may not have actually had the disease, as the basis for an eponym.) Florence Nightingale is a widely respected and world-renowned figure who founded the International Red Cross and the first formal school for nursing. For decades she had an undiagnosed, severely debilitating illness, whose symptoms were similar to CFS. Despite Nightingale's considerable talents and her personal character, many doubted that she had a physical illness. Her illness was quite controversial. A 1996 paper by D.A.B. Young which appeared in the British Medical Journal indicates that Nightingale's illness was likely to have been chronic brucellosis (a disease with symptoms similar but not identical to CFS). Patient groups have promoted Nightingale's birthday, May 12, as International CFIDS/M.E. Awareness Day, and Nightingale is a familiar symbol to those who know this disease. However, some argue that women's diseases often have difficulty in getting recognized and accepted. Choosing Nightingale's name as an eponym might add to, rather than offer relief from, current name-associated problems.- Darwin's. Charles Darwin, founder of the theory of biological evolution, is another world-renowned figure who had an undiagnosed, debilitating illness. However, less is known about Darwin's disease than Nightingale's, so there may be stronger objections due to the lack of certainty about the identity of his illness. Also, many patient organizations have already invested much effort in promoting May 12 as Awareness Day, which is associated with Florence Nightingale, and so switching to a different symbolic patient might cause confusion.
Comments from Panelists at the Change the Name Forum o Bonnie Gorman, RN, Massachusetts CFIDS Association: Multiple sclerosis was not addressed by medical clinicians or researchers, until its name was changed from "hysterical paralysis." Her organization's attempts at raising funds for CFIDS medical research are bearing out the same horrendous pattern. "The medical profession is very resistant to taking this illness seriously because of the name. They can't get past the name ... I'm absolutely convinced that if we cannot change the name, we will never be able to move forward." o Gail Dahlen, RN, Medical Professionals with CFIDS: "The name of this illness is an atrocity. It degrades us as patients. It degrades us as human beings ... Everything revolves around this name: research money, credibility, support from family, friends, neighbors, co-workers. It all revolves around this name. And every single word in this name -- chronic, fatigue and syndrome -- has to go." o Gail Kansky, Massachusetts CFIDS Association: (Comments were read on her behalf.) Changing the name might bring some confusion, as some claim, but we have been through several name changes before: the illness had no name until Chronic Epstein-Barr Virus was chosen in 1985 and it was changed to CFS/CFIDS in1988. In each case, it has taken only a year or so to absorb the change. "There is no other illness whose name makes fun of the patient." She strongly recommended choosing the name "myalgic encephalopathy." o Katrina Berne, PhD, psychologist and author: "Patients, and our advocates, have spearheaded a lot of what's happened with this illness. And we will spearhead the movement to have a new name. We will rely on input from clinicians and researchers to identify the new name accurately. Ideally, we would wait until a marker or cause is identified. But the research won't be there, the funding won't be there, the research to find the evidence to change the name won't be there, unless we change the name." o Sara Bass, Connecticut CFIDS Association: The medical profession will only accept a new name if they have chosen it themselves. But their failure to educate the public about this illness has brought us all to the point where the patients must take up this issue. o Tom Hennessy, RESCIND: Anger about the name is as high as it's ever been during the eight years he has been fighting for a name change. He reminded everyone that many disability insurers have excluded CFS from standard coverage. "We are a major liability, and we've now become their target. We need to show government and big business that they are losing very productive people, and big tax revenues."
In Conclusion
Patient groups have successfully pressed to change names of other illnesses. Victims of gay-related immunodeficiency, or GRID, demanded a change for the name of their disease. It's now called AIDS. We can succeed in changing chronic fatigue syndrome, too.
Thanks are owed to many who have helped explore the issue of changing the name, particularly to: Tom Hennessy, Kim Kenney and the staff of The CFIDS Association of America, Mavis Moore and the staff of the UK M.E. Association, Dr. Phil Lee, Dr. Charles Shepherd, Dr. Nancy Klimas, Ellen Goudsmit, PhD, Sharon Kautto, Helen Tucker, Leslie Boyer and the participants of Internet CFS discussion group.
B. CHANGE THE NAME SURVEY
Please carefully read and consider the article about the name change before answering these questions. Submit one set of survey responses per individual. Doctors and scientists may take a particular interest in questions 7, 8, 9 and 10 below. Encourage friends and family members to submit their own responses.
Personal information (Note: All personal data will be kept confidential.)
1) Name: __________________________________________
Address: __________________________________________
__________________________________________
City: ______________________________________________
State/Zip code: _____________________________________
Country: __________________________________________
Telephone: _________________________________________
2) Are you a medical doctor? Yes or No: _______________
Are you a medical scientist? Yes or No: _______________
If either, then please provide the following:
Institution or clinic: _________________________________
Office telephone number: ____________________________
3) Have you carefully read the article above about changing the name? (It is very important to do so before filling out this survey.)
Yes or No: _______
Alternative Name
4) Please respond to the following alternatives for names which the patient community might promote for common usage (that is, for all uses outside of the scientific literature). Choices were drawn from alternatives that were solicited in The CFIDS Chronicle and elsewhere.
Place a number next to each choice below to indicate your preference. That is, place a "1" next to your preferred choice, a "2" next to your second choice, etc.
The choices:
______ Chronic fatigue syndrome ______ Myalgic encephalomyelitis ______ Myalgic encephalopathy ______ CFIDS ______ Ramsay's ______ Osler's ______ Peterson-Cheney ______ Cheney-Peterson ______ Nightingale's ______ Darwin's ______ other: _______________________________________
5) If you support the use of an eponym, would it be wiser to promote it with "syndrome" or "disease" as part of the name? Considerations: Many patients wish to avoid further problems which result from the 'fuzzy' term "syndrome." However, scientists object to the term "disease" because CFS fails to meet standard criteria for a disease.
I prefer: Syndrome ______ Disease ______
Scientific Name
6) When scientists consider changing the name as it appears in the scientific literature, what characteristics should they avoid in the new name? ("yes" or "no")
______ avoid the word "fatigue" ______ avoid the word "chronic" ______ avoid the word "syndrome" ______ avoid the word "somatic" ______ avoid the word "benign" ______ avoid the term "neurasthenia" ______ avoid any term that tends to psychiatrize or psychologize the disease ______ other words to avoid (fill in) __________________
Questions for Doctors and Scientists
If you are a doctor or a scientist, please answer the following four questions.
7) What characteristics for an alternative to the name CFS should patient groups avoid when they choose another name to promote for public usage?
__________________________________________________
8) Should scientists pick a new pathology-based name for CFS at this time?
Yes or No: ___
9) Should scientists pick a new descriptive name for CFS at this time (i.e., descriptive of the impact of the illness)?
Yes or No: ___
10) Should scientists choose an eponym for CFS at this time (regardless of whether, or when, the scientific name might be changed)?
Yes or No: ___
Questions for All
11) What new scientific names would you recommend be considered by scientists? (Suggestions made by doctors will be reported separately from those made by others.)
__________________________________________________
12) Please add any additional comments that you may wish to include about any of the issues covered in this survey.
____________________________________________
13) Would you permit your name and your responses to be quoted in public? Those who give such permission might have their comments appear in public reports which describe the results of this survey.
Yes or No: ___
-------------------------------------------------------
Current updates on the results of the survey can be found on the Internet at web address:
http://www.cais.net/cfs-news/name.htm
An on-line copy of the survey questionnaire, and other information on this topic, can also be found at that web address. The same information can be found by creating an e-mail message which says GET CFS NAME and sending to address LISTSERV@MAELSTROM.STJOHNS.EDU .
Please send your survey responses by e-mail to CFS-NEWS@LIST.NIH.GOV or by postal mail to
CHANGE-THE-NAME SURVEY c/o Roger Burns 2800 Quebec St. NW, Suite 1242 Washington, DC 20008-1240 USA
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
>>>2. Controversies about the Royal Colleges report
Since CFS-NEWS first covered the British Royal Colleges' report on CFS (October, 1996), criticism has been published by the staff of the medical journal Lancet and by a new report being released this week by the CFIDS Association of America.
Britain's ME/CFS Charities Alliance had previously challenged the Royal Colleges report "bias towards psychiatric models of causation and treatment for all patients".
The report was strongly supported, however, by the British Medical Journal in a guest editorial written by Dr. Stephen Straus of NIH. Straus praised the report as being "arguably, the finest contemporary position statement in the field". He describes the report's finding of insufficient evidence for viral causes or documented immunologic abnormalities, although this jury is still out reagrding possible neuroendocrine abnormalities. Straus cautions that the report's recommendation for a bio-psycho-social approach to treatment will be difficult to implement since most primary care settings are not equipped with the multi-disciplinary staff needed for such a program. Straus supported the report's endorsement of the name "chronic fatigue syndrome" rather than "myalgic encephalomyelitis" or "CFIDS".
The Lancet
In its editorial of Oct. 12, 1996, the Lancet notes that the Royal Colleges report cites prevalence figures that are far above those published by the Persistent Virus Disease Research Foundation and by the ME/CFS Charities Alliance, and that Britain's Department of Health (which originally commissioned the Royal Colleges' report) has failed to endorse those high figures. Also, the Royal Colleges' report finds no evidence of brain abnormalities in CFS patients despite a clear finding to the contrary, according to the Lancet.
The Royal Colleges' report says the illness should not be referred to as "myalgic encephalomyelitis" but rather as "chronic fatigue syndrome". Lancet editorial points out that the British Department of Health has not adopted the report's recommendation. It also describes the ME/CFS Charities Alliance claim that the report committee was top-heavy with psychiatric experts, and it quotes Dr. Charles Shepherd as saying "the committee was rigged, with dissenting voices excluded."
The Lancet concludes that the Royal Colleges report was "haphazardly set-up, biased and inconclusive, and is of little help to patients or their physicians."
CFIDS Chronicle
The CFIDS Chronicle has this week published a six page critique of the Royal Colleges report. The critical analysis was written by Dr. Terry Hedrick, PhD., a psychologist who has chaired many program evaluation projects in academia and in government and who has co-authored the textbook "Applied Research Design: A Practical Guide".
Hedrick discusses in detail three kinds of biases that she sees in the report: - it provides an incomplete and selective literature review - it often speculates beyond the available data and in favor of psychological factors* - it dismisses those studies which conclude that there may be an organic basis for CFS, and it does so by holding such studies to a different standard than others which highlight psychological factors.Hedrick states that:
The report's pervasive psychiatric bias will likely fan ongoing controversies, continue misunderstandings about the illness and cause harm to CFS sufferers. General practitioners will need to look elsewhere to obtain a balanced view of the CFS literature. ... Psychologists and psychiatrists definitely have valid therapeutic and research roles in the treatment and study of CFS. The challenge is to base these roles on sound research, not speculation.
Hedrick concludes by noting that many improved research studies are on the verge of being published, and that those who are concerned about CFS should demand that all areas of CFS research should be held to rigorous standards.
Resources and references
All of the material mentioned above can be found on the Internet at the following web page:
http://www.cais.net/cfs-news/rcp.htm
This site includes links to the full text of the Royal Colleges report, the responses by the ME/CFS Charities Alliance, the BMJ editorial by Dr. Stephen Straus, the previous report in CFS-NEWS (October, 1996), the Lancet editorial, and Terry Hedrick's article as provided by the CFIDS Association of America.
If you already subscribe to the CFIDS Chronicle, you will be receiving the Winter 1997 edition soon. Terry Hedrick's article appears on pages 8 through 13. For those who are not subscribed, sending in $35 now ($45 Canada, $60 overseas) will enable you to receive the Chronicle for the next year, and if sent in by March 21st you will receive the Winter 1997 edition which includes Hedrick's article. This edition can also be purchased separately for $16. Send a check to:
The CFIDS Association of America P.O. Box 220398 Charlotte, NC 28222-0398 USA
or phone 1-704-365-2343 Monday through Thursday from 9:30 to 5:30 (Eastern time, USA) or Fridays from 9:30 to 1:00. Hedrick's article can also be viewed at the CFIDS Association's web site at http://cfids.org/cfids/royal.html . An e-mail copy can be obtained by creating a message which says GET CFIDS971 ROYAL which should be sent by e-mail to LISTSERV@SJUVM.STJOHNS.EDU . (That address may change in the near future. If that address fails to respond, then send to the new address at LISTSERV@MAELSTROM.STJOHNS.EDU .)
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
>>>3. Network news
The publisher of CFS-NEWS, Roger Burns, has moved his primary web site for CFS / M.E. information. The new address is:
http://www.cais.net/cfs-news
The Listserv at St. John's University (New York City), which hosts many email-based CFS information resources, is moving most of its facilities to a new Internet address:
LISTSERV@MAELSTROM.STJOHNS.EDU
The CFS-WIRE mailing list has already moved there. The CFS-FILE database still resides at LISTSERV@SJUVM.STJOHNS.EDU and it may move to the new address cited above in the near future.
===================================================================
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 NIHLIST 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 at Internet CFS-NEWS@LIST.NIH.GOV
or by Fido NetMail to 1:109/432, or at telephone 1-202-966-8738, or
postal address 2800 Quebec St NW, no. 1242, Washington DC 20008 USA,
or post a message to the CFS echo or to the Internet CFS-L group or
to newsgroup alt.med.cfs. Copyright (c) 1997 by Roger Burns. Per-
mission 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.
===================================================================
INTERNET users are encouraged to visit the CFS / M.E. web page at
http://www.cais.net/cfs-news and in particular to read the CFS FAQ
document at http://www.cais.net/cfs-news/faq.htm . That document
can be retrieved via e-mail by creating a message which says GET CFS
FAQ and send to address LISTSERV@MAELSTROM.STJOHNS.EDU .
Distribution of CFS-NEWS on the Internet is sponsored by the NIH
Computing Utility. However, the content of this independent
newsletter and the accuracy of the sources which it cites are solely
the responsibility of Roger Burns. To subscribe, e-mail a message
in the form of SUB CFS-NEWS
--- ```
This web service brought to you by Somewhere.Com, LLC.