Newspapers, Blogs and other Media
Links on ME and CFS (YouTube videos are below these articles):
2020 (Feb. 18). Kristin Claes Mathews. NIH-funded study reveals many youth living
with undiagnosed chronic fatigue syndrome.
2020 (Feb. 13). Darcel Rockett. Chicago Tribune. Chronic fatigue goes undiagnosed for Latino,
black children - Chicago Tribune
2020 (Feb. 12). Cort Johnson. Health Rising. Childhood ME/CFS takes a hike.
2020 (Feb. 5). Lara DeSanto. Health Central.
How tired is too tired. Sometimes sleep eludes us all. But a new study
found that some of us may be walking around with an undiagnosed chronic fatigue syndrome.
https://www.healthcentral.com/article/chronic-fatigue-syndrome-undiagnosed-in-children
2020 (Feb. 4). Simon McGrath.
ME/CFS Research Reviews. Leonard Jason research finds that many young people
have ME/CFS.
2020 (Feb. 3). Alayne Trinko DePaulia.
DePaul researchers unmask misunderstood chronic illness.
https://depauliaonline.com/46034/news/depaul-researchers-unmask-misunderstood-chronic-illness/
2020 (Jan. 30). Valerie
Nikolas. Chicago Health. Chronic Fatigue Syndrome Is Debilitating but Often
Dismissed
https://chicagohealthonline.com/chronic-fatigue-syndrome-is-debilitating-but-often-dismissed/
2020 (Jan. 30). Healio. Most kids,
teens with chronic fatigue syndrome are undiagnosed
2020 (Jan. 27). Kristen Dalli. Consumer Affairs. Chronic fatigue syndrome can go
undiagnosed in many young people.
2020 (Jan. 23). Science
Daily. Many Youth
Living with Undiagnosed Chronic Fatigue Syndrome
https://www.sciencedaily.com/releases/2020/01/200123152453.htm
2020 (Jan. 24). Bernie
Tafoya. WBBM News radio. Young People with chronic fatigue go undiagnosed. Researcher
https://wbbm780.radio.com/articles/young-people-with-chronic-fatigue-go-undiagnosed-researcher
2020 (Jan. 16). Chronic
Fatigue Syndrome and Mono in College Students. Press Release.
2019 (June 19). Kristen Dold and Lydia House. Women’s Health Magazine. 5 Signs Your
Exhaustion Could Be A Symptom of Chronic Fatigue Syndrome.
2019 (May 14). Academic
Minute. Leonard Jason. Chronic fatigue syndrome.
https://academicminute.org/2019/05/leonard-jason-depaul-university-chronic-fatigue-syndrome/
2019 (March 14). DePaul
Magazine. Abby Pickus. The Myth of “It’s All
in Your Head”
2019 (March 6). Lifeline
Crisis Centers. Lily Chu, Jose Montoya and Lenny Jason, How Chronic Illness Can
Influence Suicide Risk
https://medium.com/@CrisisCenters/contributed-by-dr-lily-chu-8872bfb5f633
2018 (May 7). The DePaulia. Timothy Duke. Invisible Illnesses: The challenge
of caring for students living with chronic illness
2018 (May 2). Virology Blog.
David Tuller. Trial By Error: A Q-and-A with Leonard
Jason, on Case Definition.
https://www.virology.ws/2018/05/02/trial-by-error-a-q-and-a-with-leonard-jason-on-case-definition/
2018 (Jan. 10). Nature. Emily Sohn. When sickness
interrupts science. How to balance a long-term illness and a research career.
https://www.nature.com/articles/d41586-018-00112-7
2018 (Jan. 3). Nature. Amy Maxmen. A reboot for chronic fatigue syndrome research. Research
into this debilitating disease has a rocky past. Now scientists may finally be
finding their footing.
https://www.nature.com/articles/d41586-017-08965-0?WT.feed_name=subjects_biotechnology
2017
(August 20). Oxford University Press Blog. Leonard A. Jason. Scientific
progress stumbles without a valid case definition.
https://blog.oup.com/2017/08/scientific-progress-without-valid-case-definition/
2017
(August 1). Seeker. Leah Rosenbaum. A New Clue Is Helping to Solve the Mystery
Behind Chronic Fatigue Syndrome
2017
(March 16). Leonard Jason's case definition presentation at European Network,
Barcelona
2017
(March 16). Cognitive neuroscientists use systems level approach to search for
cause of chronic fatigue syndrome: Researchers hope for new insights to
explain the debilitating illness. Jordyn Holliday
https://resources.depaul.edu/newsroom/news/press-releases/Pages/brain-CFS.aspx
2017
(Jan 15). Ethical Humanist Society of Chicago. Leonard A. Jason. Understanding
Unexplained Illness: From Knowledge to Action.
https://ethicalhumanistsociety.org/index.php/programs?id=116=Itemid=163
2016
(Dec. 23). Simmaron Research. Cort
Johnson. Is Chronic Fatigue Syndrome (ME/CFS) a Brain Disease? The 2016
IACFS/ME Conference Pt. III
2016
(Sept. 28). CBS Chicago. Lisa Fielding. Dozens rally to bring attention to
incurable disease.
2016
(Sept. 9). The Guardian. Rosie Ifould. Gluten wars: Skepticism Over
Self-diagnosis and the Illness We Can't Explain.
https://www.theguardian.com/lifeandstyle/2016/sep/08/gluten-free-diet-celiac-disease-self-diagnosis
2016
(July 25). Healthrising. Cort Johnson. Laggard: Is an Under-Active Brain the
Problem in Chronic Fatigue Syndrome (ME/CFS)
https://www.healthrising.org/blog/2016/07/25/chronic-fatigue-syndrome-brain-under-functioning/
2016 (May 17). Healthrising. Cort Johnson. The
25% Disease: Is Chronic Fatigue Syndrome (ME/CFS) Unique in How Many People are
Homebound?
2016 (May 9). MEAction. Jason Study Compares Housebound
and Non-Housebound patients
https://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/
2016 (May 9). MEAction. Jason Study Compares Housebound
and Non-Housebound patients
https://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/
2016 (March 19).MEAction. Sasha Nimmo. Study says
scientists must agree on classifying patients.
https://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/
2016 (Feb 26). Clinical
Research: Open Access. Leonard Jason, Marcie Zinn and Mark Zinn. qEEG LORETA case study.
2016
(Feb. 19). Medscape. Shannon Aymes. Chronic Fatigue Syndrome Linked to Suicide
Deaths
2016
(Feb). The ME Action Network. Case study: “Brain Fog” in CFS can be seen in qEEG/Loreta analysis.
https://www.meaction.net/2016/02/07/case-study-brain-fog-in-cfs-can-be-seen-in-qeegloreta-analysis/
2015 (Nov 13). Virology Blog.
Ronald W. Davis, Jonathan C.W. Edwards, Leonard A. Jason, Bruce Levin, Vincent
R. Racaniello, Arthur L. Reingold. An open letter to Dr. Richard Horton and The
Lancet.
https://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/
2015 (Nov 10). Mosaic. The
Science of Life. Virginia Gewin. Fighting over fatigue.
https://mosaicscience.com/chronic-fatigue-syndrome-me
2015 (Nov 10). Mosaic. The
Science of Life. Virginia Gewin. How to diagnose chronic fatigue syndrome.
https://mosaicscience.com/extra/how-diagnose-chronic-fatigue-syndrome
2015 (OCTOBER 21) Virology.
David Tuller, TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue
Syndrome Study
https://www.virology.ws/2015/10/22/trial-by-error-ii/
https://www.virology.ws/2015/10/23/trial-by-error-iii/
2015 (Oct. 10).Health Rising.
Cort Johnson. IOM Diagnostic Criteria Redeemed? Dr. Klimas Answers Critics at
CFSAC Meeting.
2015 (Oct). Invest in ME Research. Leonard A. Jason and Zachary Siegel. 10 Years of Biomedical Research - Invest in ME.
https://www.investinme.eu/IIMEC11-news-0902.shtml
2015 (Sept. 28). Oxford University Press
Blog. Leonard A. Jason. Patients Battle for Justice.
https://blog.oup.com/2015/09/patients-battle-for-justice/
2015
(Sept 22). DePaul Distinctions. Margaret Hoag. Radical
Research
https://resources.depaul.edu/distinctions/words-and-deeds/Pages/Radical-Research.aspx
2015 (Sept. 11). Medpagetoday. Shannon Firth. Chronic Fatigue: A Call for Real Answers to a Real
Disease Controversial, tough-to-treat illness starts gaining attention.
https://www.medpagetoday.com/Pathology/GeneralPathology/53502
2015 (July 19). Health Rising. Cort
Johnson. Excluding Factors: Jason Critiques the IOM Definition
for ME/CFS.
2015 (May 27). Nature. Virginia Gewin. Medical research: Subject to reflection. https://www.nature.com/naturejobs/science/articles/10.1038/nj7553-551a
2015 (March 26). Medical News Today. James McIntosh. How important is the
name of a disease? Do names influence treatment?
https://www.medicalnewstoday.com/articles/291511.php
2015 (March 15). Health
Rising. Cort Johnson. The Outsider: Jason Takes Aim at the IOM Report – Again
https://www.cortjohnson.org/blog/2015/03/15/the-outsider-jason-takes-aim-at-the-iom-report-again/
2015 (March 4). Oxford
University Press Blog. Leonard A. Jason. IOM’s Effort to Dislodge Chronic
Fatigue Syndrome
2015 (Feb. 22). WVUM
90.5FM. We Are The Voice. Natalie Maureen
Kivell,
Where are the patients? The role of community psychology in
engaging patients in their own lives.
2015 (Feb. 16). Oxford
University Press Blog. Leonard A. Jason. How Disease Names Can Stigmatize.
https://blog.oup.com/2015/02/disease-name-chronic-fatigue-syndrome-me/
2015
(Feb. 11). Nature magazine. Sarah Reardon Chronic-Fatigue Syndrome Gets
Controversial Redefinition An HHS panel recommends
changing the condition's name to "systemic exertion intolerance
disease"
https://www.scientificamerican.com/article/chronic-fatigue-syndrome-gets-controversial-redefinition/
2015
(Feb. 10). New York Times. David Tuller. Chronic Fatigue Syndrome Gets a New
Name https://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/?_r=0
2015
(Feb. 10). America.Aljazeera.com Natasha Sheriff Institute of Medicine calls for renaming
chronic fatigue syndrome
2015
(Jan. 23). Health Rising. Cort Johnson. Chronic Fatigue Syndrome Articles
Making Waves in the Medical Community:
2015
(Jan. 22). Medscape. Miriam Tucker. Addressing Fear of Exercise Cuts Chronic
Fatigue... Perhaps:
https://www.medscape.com/viewarticle/838452
2014
(Nov. 25). New York Times. David Tuller. Brains of People with Chronic Fatigue
Syndrome Offer Clues About Disorder:
2014
(Oct 17). Medscape Medical News. Miriam E. Tucker. Chronic Fatigue: NIH
Literature Review Faulted:
https://www.medscape.com/viewarticle/833428
2014 (Oct). Monitor: American Psychological Association. Beyond Tired:
Chronic Fatigue Syndrome remains misunderstood and understudied. Psychologists
are among those trying to change that:
https://www.apamonitor-digital.org/apamonitor/201410#pg70
2014.
Health Rising. Cort Johnson. Differentiating ME/CFS from depression:
2014. Health Rising. Cort. Jason’s
ME/CFS diagnostic talk at the 2014 IACFS/ME meeting in San Francisco:
2014. Oxford University
Press’ Blog. Leonard Jason. Diseases can stigmatize:
https://blog.oup.com/2014/01/diseases-can-stigmatize-chronic-fatigue-syndrome/
2014 (March 28). Buzzfeed. David Tuller. IACFS/ME
San Francisco conference:
2014. Mercury News. Bay Area
pharmaceutical company develops treatment for chronic fatigue syndrome:
2014. Kate Benson. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
It’s all in the Definition:
2013. Prohealth. Psychologist Leonard Jason
Receives NIH Grant to Study CFS in Youth:
https://www.prohealth.com/library/showarticle.cfm?libid=18637
2013. Monitor: American
Psychological Association. When Symptoms are a Mystery:
https://www.apamonitor-digital.org/apamonitor/20130708?folio=66#pg66
2013. The film Voices from the
Shadows:
https://vimeo.com/ondemand/22513/24683179
https://voicesfromtheshadowsfilm.co.uk/specialists/
2013. Yahoo.voices. Chronic Fatigue Syndrome: More than just being fatigued. Patients have to cope with misunderstanding the "silent" illness
https://www.mecfsforums.com/index.php?topic=17112.0
2012. Prevention Magazine. How tired is too tired:
https://www.prevention.com/health/sleep-energy/how-normal-fatigue-differs-chronic-fatigue-syndrome
2011 (March 4). New York Times. David Tuller’s
article: Defining an Illness Is Fodder
for debate:
https://www.nytimes.com/2011/03/08/health/research/08fatigue.html?_r=0
2011. Virology Blog. David
Tuller. Chronic Fatigue Syndrome and the
CDC: A Long, Tangled Tale:
https://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/
2011. Wall Street Journal.
Leonard Jason. An illness that is hard to live with—or define:
2011 AJCP. Leonard Jason.
Small wins:
https://www.springerlink.com/content/c726m71k010685r8/fulltext.pdf
2011 (Feb). MyHealthNewsDaily
Rachael Rettner. Chronic Fatigue
Syndrome: Therapies Raise Hopes, and Questions:
https://www.livescience.com/35495-chronic-fatigue-syndrome-therapies-effective-safe-110217.html:
2011 (Aug). New York Times. David Tuller. Study links chronic fatigue to
virus class
https://www.nytimes.com/2010/08/24/health/research/24fatigue.html
2011. Live science. Rachael Rettner. Chronic
Fatigue Syndrome proves chronically mysterious:
https://www.livescience.com/13543-chronic-fatigue-syndrome-research-biomarkers.html
2010. Everyday Health. Dennis
Thompson, Jr. Just fatigue or CFS?:
2010. CFS Central. Mindy Kitei. Q
& A with CDC’s Steve Monroe:
https://www.cfscentral.com/2010/08/sunday-monroe-5-am-final-final.html
https://blogs.wsj.com/health/2010/07/01/cdc-teams-xmrv-chronic-fatigue-syndrome-paper-is-out/
2009. The Opray Magazine. Dr.
Oz’s treatments for Fibromyalgia:
https://www.oprah.com/health/Dr-Oz-Treatments-for-Fibromyalgia
2008 (May). New York Times.
David Tuller. Learning Firsthand About
Chronic Fatigue Syndrome:
https://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html
2007 (July 17). New York
Times. David Tuller: Chronic Fatigue No
Longer Seen as 'Yuppie Flu':
https://www.nytimes.com/2007/07/17/science/17fatigue.html?_r=0
2007. Wndu.com. Chronic
fatigue syndrome is a debilitating for those affected:
https://www.wndu.com/home/headlines/5415806.html
2007 (Sept). Leonard Jason, PhD - ME/CFS Researcher and
Bridge Builder:
https://www.prohealth.com/library/showarticle.cfm?libid=12838
2007 (August). Live chat with
Q&A with ME/CFS Research &
Policy Leader Leonard A. Jason, PhD:
https://www.prohealth.com/library/showarticle.cfm?libid=13053
2007 (Feb 21). Chicago
Defender. Soo-Kyung Seo. Suffers find chronic fatigue
syndrome tiring to explain:
https://news.medill.northwestern.edu/chicago/news.aspx?id=4101
2006. Joint flexibility may
offer insight into Chronic Fatigue Syndrome:
https://news.healingwell.com/index.php?p=news1&id=534241
2005.
Psychology Today. Leonard Jason corrects mistakes in an interview:
https://www.theoneclickgroup.co.uk/news.php?id=785#newspost
https://www.smithsonianmag.com/people-places/betting-on-seabiscuit-72723414/?no-ist
2002. Chicago Tribune. Marc
Davis. Hope for the exhausted. DePaul study finding therapies to combat drain
of chronic fatigue:
https://articles.chicagotribune.com/2002-11-17/features/0211170226_1_cfs-chronic-fatigue-condition
2003. Finding the True Face of CFIDS (Chronic Fatigue Syndrome):
https://www.prohealth.com/library/showarticle.cfm?libid=9810
2001 (Dec 17). Health & Fitness.
Susan Ferraro. Mystery Malaise. New treatments show promise, but CFS continues
to stump investigators (article reprinted in newsletter):
https://www.endfatigue.com/media/In-The-Media--Mystery-Malaise--Dr-Jacob-Teitelbaum.html
2001 (Dec 7). Chicago Reader.
Cara Jepsen. On Film: When you can’t move, it’s hard to make a movie:
2001 (Jan 30). Reuters
Health. John Schieszer. Gulf War Ills May Be Clue to
Chronic Fatigue Syndrome
https://lists.topica.com/lists/Co-Cure/read/message.html?sort=t&mid=1601024824
2001. USA Today. Worn out at
the finish line:
https://www.anapsid.org/cnd/coping/hillenbrand.html
2000 (May 12). SFGate. Dorothy Wall. New Research Debunks Chronic Fatigue
Syndrome Myth:
2000 (March). Monitor: American
Psychological Association. K. Foxhall. Study finds high rates of CFS in minorities,
people with less education:
https://www.apa.org/monitor/mar00/cfs.aspx00
2000 (Jan 10). United Press
International. Chronic fatigue not likely "in head":
https://lists.topica.com/lists/Co-Cure/read/message.html?sort=d&mid=1600820226
2000 (Jan 26). Chicago Tribune. Mary Beth Sammons.
Chicago Tribune. The Reality Behind Chronic Fatigue:
1998. Chicago Tribune.
Charles Osgood. Meet Zac. He’s really sick of being tired:
1998 (Nov 15). Chicago Tribune. Janice Neumann.
Chronic Fatigue Totals Exceed Estimates:
https://articles.chicagotribune.com/1998-11-15/features/9811150503_1_fatigue-chronic-cdc-study
1997 (Aug 19). Los Angeles
Times. Shari Roan. Chronic Fatigue Syndrome: Another Mind-Body Debate
https://articles.latimes.com/1997/aug/18/news/ls-23525
1996 (Sept 17). The Hartford
Courant. Garret Condon. Losing The Teenage Years To
The Disabling Exhaustion Of Chronic Fatigue Syndrome:
1993 (Jan 28). Chicago Sun-Times. Jim Ritter. Chronic
fatigue changes life:
https://www.highbeam.com/doc/1P2-4152729.html
YouTube Videos on ME and CFS:
2018 (May 12).
Leonard Jason presenting at ME Protest meeting in Chicago.https://youtu.be/nwh8EkgdPIM
2018 (March 20).
Leonard Jason presenting on QuantiaMD about myths regarding CFS. https://youtu.be/dguHdXZnrm4
2017
(Jan 15). Ethical Humanist Society of Chicago. Leonard A. Jason. Understanding
Unexplained Illness: From Knowledge to Action.
2016, Sept. #MillionsMissing Protest in Chicago. Leonard Jason’s speech.
2016, July. New York Times.
CFS Name Change Effort. Article posted at DePaul University.
https://www.youtube.com/watch?v=ayYch4Nn2gg
2015, Oct. The National
Society for ME patients’ Fall 2015 conference "The Invisible - a
conference on severe ME and CFS and the way forward", in Stockholm.
Leonard A. Jason. Defining Essential Features of ME and CFS.
2015, August, Summit on
Fatigue and Health
2015, July, DePaul University
Chili Challenge!
2014 P2P NIH Workshop titled
“Advancing Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Leonard Jason’s Presentation on
the Case Definition
Panel Discussion at the P2P NIH
meeting on ME and CFS
Leonard A. Jason asks several
questions of panel members
2014, 8 broadcasts out of the Netherlands
regarding a patient program called: Science to Patients.
In this first webinar, I discuss some of my current
research with ME:
In the send webinar, I discuss the name and Case Definition.
The third webinar covers what might cause ME, the stigma associate with ME and the DSQ.
The fourth webinar explains
the difference between ME/CFS and Major Depressive Disorders.
https://www.youtube.com/watch?v=RKSaYlR7ZHU
The fifth webinar
involves treating and managing of ME.
The
sixth webinar involves symptoms of ME and treatments.
https://www.youtube.com/watch?v=ih2xa_EDoXM&feature=youtu.be
The
seventh webinar involves the need for services and social action.
https://www.youtube.com/watch?v=lsXze-Qw6Q8&feature=youtu.be
The
last webinar involves future directions for ME research.
https://www.youtube.com/watch?v=2C6aSDyt1Rw&feature=youtu.be
2014
(May 5) Institute of Medicine open meeting on Diagnostic Criteria for Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome
My
lecture titled: Diagnostic Criteria Issues for ME/CFS:
https://www.youtube.com/watch?v=d5WA-a8lzrQ&list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud
Questions and Answer session:
https://www.youtube.com/watch?v=JNAK1lbYCgY&list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud
2014, Jennifer Brea’s Thrive
google show on patient activism:
https://www.youtube.com/watch?v=eblZlHfXSXQ
Advertisement for May 2014
Thrive show on patient activism:
2011, the White House
Chronicle PBS program aired a program discussing ME/
CFS, and Jason was one of the
panel members. The TV show can be found at this site, but when you click on the
link, the show will begin after 30 seconds:
https://www.youtube.com/watch?v=aD9Oi3cqFOg
2011, Llewellyn King interviewed Jason for three
episodes of his ME/CFS Alert:
https://www.youtube.com/watch?v=DtIvyKkFCHw
https://www.youtube.com/watch?v=9VCQPFopbWs&feature=relmfu
https://www.youtube.com/watch?v=rpCzZ3UORo8
2011, Jason presented a
lecture on diagnostic criteria and case definitions at the NIH State of
Knowledge Workshop on ME/CFS:
https://www.youtube.com/watch?v=JWGRpUOeRiI
https://www.youtube.com/watch?v=8VbtSssQAkk
https://www.youtube.com/watch?v=TN9R_XDvdQA
https://www.youtube.com/watch?v=WPl5aVn5Vvs
2011 (Nov 8) meetings at CFS
Advisory Committee, where Jason served as the Chairperson of the Research
Subcommittee:
9-11:15 am https://www.youtube.com/watch?v=uB8xnB69KaE
11:30 am - 1 pm https://www.youtube.com/watch?v=6H8w38aJ6lk
2 pm - 4 pm https://www.youtube.com/watch?v=nBUiu3LNy-8
4 pm - 5 pm https://www.youtube.com/watch?v=Sp06mS3_n7I
2011 (November 9) CFS Advisory Committee meeting:
9 am -- 10:30 am https://www.youtube.com/watch?v=8CPZrFM-sA0
10:45 am -- 1:15 pm https://www.youtube.com/watch?v=nf2yOxf74bE
1:30 pm -- 4:30 pm https://www.youtube.com/watch?v=VclEVvfJYRg
2010 (Oct.) CFS Advisory
Committee meeting where Jason asked the CDC CFS chief Beth Unger on her course of
research:
https://www.youtube.com/watch?v=vhfGw_jZQUs
2010 (Oct.) Second day at
this meeting of the CFSAC. Jason makes a motion to change the name to ME/CFS from
hour 5, minute 57, second 17 to hour 6, minute 10, second 43. Jason asks the FDA tough questions at hour 6,
minute 18, second 28:
https://hhs.granicus.com/MediaPlayer.php?view_id=5&clip_id=105
2010 (Oct.) Clips of the
longer tape above where the FDA official is confronted regarding the lack of
progress with getting FDA approval:
https://www.youtube.com/watch?v=EoZxfJhrknI&feature=youtu.be
https://www.youtube.com/watch?v=y0EOuFd0NcU&feature=youtu.be
https://www.youtube.com/watch?v=YLbMUA1lYQE&feature=youtu.be
https://www.youtube.com/watch?v=sFnD3iq7aQY&feature=youtu.be
https://www.youtube.com/watch?v=j2Eu-vivXZc&feature=youtu.be
2010 technical webinar, which
Jason conducted on problems with the diagnostic criteria for ME/CFS for the
CFIDS Association, can be found at this site:
https://www.youtube.com/watch?v=JelwLvzW6eI
2004 lecture Jason gave at a
patient conference called OFFER in Utah on the diagnosis and epidemiology of
chronic fatigue syndrome:
https://www.youtube.com/watch?v=JZCT9eb2o8Y
_____________________________________________________________________________________________________
Other ME and CFS Media Contacts Not
Available On The Web
(You need a dropbox account to access these
links from my dropbox account)
2008
(May 5). American Chronicle. Lourdes Salvador. The economic impact of chronic
fatigue:
2004
(Feb). Southwest Airlines Spirit. Heather Millar. Why am I always tired?:
2003
(Oct). Alternative Medicine. Sally Lehrman. Spotlight
on chronic fatigue:
2002
(April 5). CQ Researcher. Published by Congressional Quarterly. Sarah Glazer.
Chronic fatigue syndrome. Is the cause physical or psychological:
2001
(Dec 11). Health and Fitness News Service. Susan J. Landers. With no definitive
diagnosis or treatment, physicians and patients look to researchers for answers
to chronic fatigue syndrome:
2001
(Nov). Ladies’ Home Journal. Paula Chin. The disease that nearly destroyed me:
2001
(Sept). Chicagoland senior news. James Gaffney. High levels of chronic fatigue
prompts new study.
2001
(Jan 19). The Lisle Sun. Susan Frick Carlman.
Unrelenting exhaustion. No longer called yuppie flu, chronic fatigue syndrome
is stricking all levels of society:
2000.
La Prensa. Gina Cortez. Depression or chronic fatigue?:
2000
(Feb/March). HealthQuest. Sick and tired:
https://www.dropbox.com/s/qrbjrk4h8mlp25i/2000.%20HealthQuest.%20Sick%20and%20tired.pdf?dl=0
2000
(Jan 13). USA Today. Kathleen Fackelmann. Real life
with a phantom disease:
2000
(winter). Minority Nurse. Pam Chwedyk. Chronic
fatigue syndrome not just a ‘whites only’ disease:
2000
(winter). Healthwatch. Renee Brehio.
No more yuppie flu:
1999
(Dec). Today’s Chicago Woman. Yuppie flu not true:
https://www.dropbox.com/s/kcz6yx7uof9x78g/1999.%20Today%E2%80%99s%20Chicago%20Woman.%20Yuppie%20flu.pdf?dl=0
1999
(Nov 15). Daily Midway Driller. Study finds CFS more common than originally
thought:
1999
(Nov 2). News Democrat. Chronic fatigue:
https://www.dropbox.com/s/4wpwllwht8181nm/1999.%20News%20Democrat.%20Chronic%20fatigue.pdf?dl=0
1999
(Oct 28). Newsclip. Latinos highly affected by
chronic fatigue syndrome:
https://www.dropbox.com/s/3zqk1ydti7vi8i6/1999.%20Newsclip.%20Latinos%20highly%20affected.pdf?dl=0
1999
(Oct 19). Culpeper Star Exponent. Study breaks myth of ‘yuppie flu’:
1999
(Oct 12). Chicago Defender. Joe Ruklick.
African-Americans suffer from CFS at higher rate, commonly overlooked than in
whites:
1999
(Sept 13). Philadelphia Daily News. Fatigue. Doc: Illness needs a name change:
https://www.dropbox.com/s/jjuby51nxj5ndlu/1999.%20Philadelphia%20Daily%20News.%20Fatigue.pdf?dl=0
1998
(March 19). Lansing State Journal. Tracey Birkenbauer.
Burnt-out blues. Chronic fatigue results from stress, but can be treated:
1996
(Nov). Monitor. American Psychological Association. Psychologist calls for a
better definition of chronic fatigue:
https://www.dropbox.com/s/7i02gmpqgmdmcky/1996.%20Monitor.%20%20Psychologist%20calls.pdf?dl=0
1995
(Nov). Women’s Health Letter. Chronic fatigue syndrome. Redefinition raises
hope:
1994
(Nov). Working Woman. Hillary Johnson. The Invisible Epidemic:
1994
(June 26). Times News. Shirley Collins. Half-million Americans suffer from
chronic fatigue:
https://www.dropbox.com/s/5j0em5z6rkl87vv/1994.%20Times%20News.%20Half%20million.pdf?dl=0
1993
(Feb 8). RT Image. Denise Leathers. Sick and tired. Imaging techniques help
unravel the mystery of chronic fatigue syndrome:
https://www.dropbox.com/s/eo5mdbqo0tj8eej/1993.%20RT%20Image.%20Sick%20and%20Tired.pdf?dl=0
1992
(Nov). Chicago Tribune. Paul Fine. DePaul professor studies effects of chronic
fatigue syndrome:
https://www.dropbox.com/s/r29d1egi87d2x61/1992.%20Tribune.%20DePaul%20professor%20studies.pdf?dl=0
1992
(Oct). Chicago Tribune. Study puts high number of chronic fatigue cases:
https://www.dropbox.com/s/ktcxbv84t94tou5/1992.%20Tribune.%20Study%20puts%20high%20number.pdf?dl=0
-------------------------------------------------------------------------------------------------------------------
Other ME
and CFS materials
Below
is a description of trying to get reporters to accurately describe their
interviews:
Have you ever experienced being misquoted
by the media, and even worse, has this ever lead to stigmatizing the very
organizations, groups, or individuals you have been working with? I experienced this very situation and my
account is below:
One morning, I opened an email and found a
message from an activist who said it was with disgust that he read an article
stating among other things: “Sleepiness can turn into chronic fatigue
syndrome.” Certainly, this phrase and others like it trivializes the very
serious illness known as chronic fatigue syndrome. Unfortunately, the reporter
in this article had been quoting me, but I had never made these types of
statements when I was interviewed.
I immediately emailed my PR contact at DePaul and sought his advice. He
responded by mentioning that if I thought the interview and the quotes attributed to me were totally distorted, I might request
a clarification. But, he added, if it was only an incidental piece of not
quite true information, I might let it slide. His sense was that it was overall
a good story and that being so prominently featured in such a major publication
was quite a coup, as circulation was about 3.5 million.
Reporters rarely are willing to allow us to read and edit their news
stories where we are quoted before they are published. I was not sure whether
they might be willing to retract part of a story or insert a correction. I next
spoke with my research team members, and they urged me to confront the
reporter. I took their advice and sent
this note to the reporter:
“Thank you for your interview, and I am
sure the piece will be widely read. As I read your recently published
article on fatigue for which I was interviewed, one of my statements was used
in an erroneous context. Sleep deprivation does not lead to CFS – they
are different entities. I believe the statement I made was meant to show the
difference between normal fatigue and CFS – it was not meant to imply
that sleepiness can turn into CFS. If it
is possible to publish a correction for the inaccurate statements, I would be
willing to help with the changes.”
The reporter immediately responded, and in
his email mentioned he was really disappointed with the changes his editor
made, and then indicated that he would be happy to make the corrections. I then thanked him and asked him to remove
the statement, “Sleepiness Can Turn Into Chronic
Fatigue Syndrome” under the term Prevention News at the top of the article, and
requested a set of other changes throughout the article. Finally, I mentioned
that I was a community psychologist, and I wondered if that could be inserted
in the article.
The next morning, the reporter thanked me
for my politeness and patience, and mentioned that the changes would be made
within the next few hours. This series of interactions
highlights the importance of a supportive team who encouraged me to take a
proactive stances, and how sometimes a quick intervention can result in a small
win when dealing with the media. It is ironic that our research group is
currently collecting data on a study involving how CFS is portrayed in the
media.
The revised article is at: https://www.prevention.com/health/sleep-energy/how-normal-fatigue-differs-chronic-fatigue-syndrome
National Alliance for ME’s
description of our DePaul team:
https://www.name-us.org/ResearchPages/ResJason.htm
________________________________________________________________________________________
Past
Media articles
Amednews.com
(the
newspaper for America's physicians)
Puzzling
malaise: Unlocking the clues
By Susan
J. Landers, AMNews staff
July 23, 2001
Christine Petty, MD, a family physician in
Rockford, Ill., treated a patient for an illness that lasted six years. During
that time, the man, then in his 40s, became so disabled he couldn't leave his
home. He took a leave of absence from his job. His wife divorced him. Although
his condition ultimately improved, his life was nearly destroyed.
Dr. Petty's patient had chronic fatigue
syndrome, an illness that is often as devastating as it is puzzling and one for
which there are more questions than answers.
Estimates of those with the illness have
reached 800,000 in this country alone, according to recent research. But
pinpointing its exact symptoms can be as perplexing as CFS itself.
Fatigue is a common complaint. But in the
case of this patient, Dr. Petty could pick up signs that his difficulties were
different. This patient's fatigue was both bone-crushing and unexplained. He
also complained for at least six months of a host of other ills: low-grade
fever, muscle aches, sore throat and sleep problems.
While there is a definition for CFS that was
developed in 1994 and used by Dr. Petty in her diagnosis, most researchers and
clinicians find it flawed. A new one is in the works. It is expected to be
ready by 2003.
There is no definitive way to identify CFS.
"It's mainly a diagnosis of exclusion," said Dr. Petty. Physicians
must first rule out viral causes and cancer. So blood work and a thorough
physical exam and good medical history are the first steps to take, she
explained.
|
The Centers for Disease Control
and Prevention recommends a series of about 15 tests physicians can use to
screen for CFS. They include a complete blood count, measures of total protein
in blood plasma as well as glucose levels.
Unusual findings in any of the tests could
point to a disorder that a physician may successfully diagnose and treat.
However, 90% of CFS patients will test at
normal levels, according to the CDC.
After ruling out all other diseases, doctors
should consider CFS. But, as with the diagnosis of the illness, there is no
definitive treatment.
For Dr. Petty, treatment included providing a
lot of support for her patient. Sometimes antidepressants are prescribed,
particularly tricyclics to help patients gain more restful sleep.
Holistic management of patients' lives can
also be a central element of care, said Dr. Petty. Eating right, getting
adequate rest, moderate exercise, controlling stress and maintaining social
ties are important considerations, she notes.
Cognitive behavioral therapy in skilled hands
may also be included in treatment, according to Anthony Komaroff, MD, professor
of medicine at Harvard Medical School.
A commonsense clinical approach is best, said
William Reeves, MD, principal investigator of CDC's chronic fatigue syndrome
program.
Dr. Petty noted that she doesn't do much
referring unless it's to a social worker or a massage therapist. "I don't
find infectious disease specialists are particularly helpful with the
diagnosis," she said.
The Dept. of Health and Human Services' newly
formed Chronic Fatigue Syndrome Coordinating Committee identified primary care
physicians as those most likely to care for patients with chronic illnesses
such as CFS.
Needless to say, diagnosing and treating a
complex case of CFS can consume an inordinate amount of a physician's time, an
item in short supply in the current managed care era. CFS also poses a quandary
in a medical climate that emphasizes a scientific basis for prevention,
diagnosis and treatment.
"While it is pretty clear there are
objective, biological things wrong with many patients," said Dr. Komaroff,
"the problem is that none has been found to be present in every patient.
So we don't yet have the two things that the average doctor and patient are
looking for -- a diagnostic test that is sufficiently accurate to be useful and
a proven treatment."
As a result, patients with the syndrome must
often endure the skepticism of family and friends and even some physicians.
Patients and their advocacy groups have become vocal defenders of the
physiological basis, even if unknown, of CFS.
Arthur Barsky, MD,
a psychiatrist at Brigham and Women's Hospital in Boston, received a rash of
angry letters after he and a colleague published a study suggesting that the
responses of physicians and others to the diagnosis of a controversial illness
such as CFS could cause patients to exaggerate and maintain their symptoms.
Most letter-writers assumed Dr. Barksy was saying the illness was more a state of mind.
But Dr. Barsky
wasn't really surprised by the responses to the study published in the June
1999 issue of the Annals of Internal Medicine . "There is a great deal of
heat around the status of all these syndromes," he said. "Obviously
there are a lot of advocacy groups, and a lot of people feel strongly about
whether they are 'real' diseases or not."
And attitudes in general also seem to be
changing, according to Dr. Komaroff. He said there is much less skepticism
among physicians now than there was a decade ago, before research evidence
began to roll in.
Nonetheless, treating patients with CFS might
not be every physician's cup of tea, noted Dr. Reeves. Patients with CFS are
often very articulate, they don't look sick and they have a lot of complaints,
he said. Common complaints and symptoms of patients are often cognitive, so a
physician may have a patient who just can't stay on track. "These are hard
patients to deal with," he said.
Physicians also need to be wary that they
don't attribute all a patient's complaints to CFS. "Women with CFS can get
breast cancer just as well as those without," Dr. Reeves said.
If a diagnosis of CFS in adults is
controversial, CFS in children is even more so, with many physicians and others
questioning whether it exists in children and teens.
David Bell, MD, a pediatrician in
Lyndonville, N.Y., is a believer. He was drawn to the issue when a cluster of
about 50 cases of CFS occurred in 1985 among children in his rural area of the
state, halfway between Buffalo and Rochester. CFS is a diagnosis that
physicians often miss in children, he said. And this is a big problem.
Dr. Bell goes about diagnosing the illness a
bit differently than do many other physicians. "I disagree that you should
rule out every other disease and then you're left with CFS," he said.
"The pattern of fatigue and activity
limitation is a little different from other illnesses that cause fatigue,"
Dr. Bell said. "Associated symptoms of cognitive problems, muscle and
joint pain and sore throat and lymph node pain and sleep disturbances make this
a unique illness."
The average age of onset was 11 to 12 among a
group of children in a study published by Dr. Bell in the May, 2001, issue of Pediatrics .
He reported that 80% of the children made a
good recovery. Most took three to four years to recover with nine years being
the longest period of recovery. But the remaining 20% of the children are still
quite affected, he said.
Many children are unable to go to school
because of the severity of their illness, he said, and one of the most
important aspects of care is to make sure their education is provided for.
Although schools are required by federal law
to accommodate these children, physicians must first make a clear diagnosis of
CFS, he said.
The pursuit of a cause and proper treatment
for CFS is heating up with a new emphasis by HHS on research. "We are
trying to reinvigorate the field now because there are so many new methods for
doing genetic analyses and studying the brain," said Eleanor Hanna, PhD, a
senior adviser at NIH's Office of Research on Women's Health, which is
coordinating the department wide CFS initiative.
A new request for research proposals is
scheduled to be released shortly, Dr. Hanna said.
Research needs were mapped out during a State
of the Science Conference on CFS held last fall in Arlington, Va. The event was
sponsored by several of the NIH institutes and offices as well as the CDC.
Participants, including a patient, a
community physician and researchers, cited the need for longitudinal studies,
studies designed for specific subgroups of patients and on the physiology of
pain and sleep disturbances, to name only a few.
Researchers are already using imaging
technology to measure brain hormones and are examining the functioning of the immune
system. "There is considerable evidence already that the immune system is
in a state of chronic activation in many patients with CFS," Dr. Komaroff
said.
The CDC will soon begin a national survey to
determine prevalence rates. "We will be particularly interested in ethnic
minorities and will be looking at adolescents," Dr. Reeves said.
Recent research findings by Leonard A. Jason,
PhD, psychology professor at DePaul University in Chicago, threw into question
a long-held belief that CFS is most common among white women. His survey of
nearly 29,000 Chicago residents found that the illness occurred across all
ethnic groups. "Latinos had rates almost twice as high as Caucasians, and
African Americans had rates similar to Caucasians," Dr. Jason said.
The search for specific infectious agents
that may trigger or perpetuate symptoms of the illness is also ongoing, Dr.
Komaroff said. "Although it is still unproven that any infectious agent is
the cause of CFS, a number of us think that is a very plausible possibility in
many if not all patients."
But when the dust finally clears around CFS,
few researchers believe a single, infectious agent will be found to explain all
the cases, Dr. Komaroff said.
And many believe that a variety of poorly
understood syndromes ranging from CFS to Gulf War syndrome to fibromyalgia and
multiple chemical sensitivity may turn out to be one and the same illness.
Another theory is that CFS will turn out to
be similar to cancer or heart disease in which a comprehensive term covers many
varieties.
"I think what we will eventually find is
that there are different pathways and different subtypes, some that have
immunological problems and some that have no immunological problems and some
with other problems," Dr. Jason said.
--------------------------------------------------------------------------------------------------------------------------------------------------
THE CFIDS ASSOCIATION OF AMERICA APPLAUDS
RESEARCH PRESENTING
CLEARER PICTURE OF
CHRONIC FATIGUE SYNDROME
October 7,
1999
Charlotte, NC—In the
1980s, chronic fatigue syndrome (CFS) was portrayed as the “yuppie flu,” a
relatively rare condition that affected mostly upper middle class white
professionals. Now researchers at DePaul University have shattered that image.
A paper to be published in the October 11 issue of Archives of Internal
Medicine reports that as many as 800,000 people nationwide may suffer from CFS,
twice the number previously estimated by the Centers for Disease Control and
Prevention.
And those at greatest risk are not who you would think. The study, which used a
random sample of individuals in an ethnically and socioeconomically diverse
inner-city community, paints a very different picture of how race, social class
and gender may impact an individual’s chances of developing CFS.
“For years, this medical condition has been marginalized and
misunderstood,” says Kim Kenney, Executive Director of The Chronic Fatigue and
Immune Dysfunction Association of America. “This crucial piece of research
presents a new ‘face’ for CFS. The high prevalence coupled with the fact that
only 10% of those identified in the study had previously been diagnosed makes
this illness a priority for redoubled research and education efforts by
government and academic institutions.”
There is no known cure for CFS, which also is called
chronic fatigue and immune dysfunction syndrome (CFIDS) and myalgic
encephalomyelitis (ME). Symptoms include debilitating fatigue that is not
improved by bed rest and may be worsened by physical or mental activity,
impairment of short-term memory or concentration, sore throat, tender lymph
nodes, muscle and joint pain and headaches. Symptoms must be present for more
than six months without any other medical explanation. Individuals with CFS function
at a substantially lower level of activity than before onset of the illness,
and many are unable to continue holding jobs, attending school or caring for
themselves or family members.
The CFIDS Association of America, Inc. is the nation’s
leading organization working to conquer chronic fatigue and immune dysfunction
syndrome (CFIDS). Since 1987, the Association has invested more than $8.5
million in education, public policy and research programs in its efforts to
bring an end to the suffering caused by the condition.
For more information about
the study or to receive a copy, call Roxanne Brown Jahi at DePaul University,
312/362-8623. Full text of the study will also be posted on the Archives of
Internal Medicine web site at www.archinternmed.com on the morning of 10/11/99.
###
Message Points for CFS Prevalence Study
CFS is a much bigger
public health problem than has previously been estimated. Dr. Jason’s research
found that as many as 800,000 people nationwide may suffer from the illness,
which is twice as many as previously estimated by the Centers for Disease
Control.
The DePaul study also
dispels the myth of CFS as the “yuppie flu,” mostly affecting upper class white
professionals. Dr. Jason found that the condition is most prevalent among
minorities and blue collar workers. Latinos are twice as likely to develop CFS
as Caucasians.
The high rate among
medically underserved ethnic groups is particularly alarming, given that they are
the least well-equipped to seek out diagnosis and treatment. Only 10% of all
individuals with CFS in the study had been diagnosed.
Dr. Jason’s research found
that women have a very high rate of CFS versus men. Compared to other illness
rates in women, CFS is 15 times as prevalent as lung cancer and more than 40
times as prevalent as AIDS. This makes it a major women’s health issue.
These findings point
toward the need to make this illness a priority for redoubled research and
education efforts by government and academic institutions.
Individuals who want more
information on CFS can call the CFIDS Association of America toll-free, 24
hours a day at 1-800-442-3437, or visit the Association’s web site at
www.cfids.org.
NEW
STUDY FINDS CFIDS/ME COMMON!
The National CFIDS Foundation
By Cheryl Tai
In an article published this October in the
Archives of Internal Medicine, a large study by Dr. Leonard A. Jason,
et al shows that: ME "is one of the more common health problems,
The numbers of people suffering are about double the estimation of the
CDC, ME occurs more in women across ethnic groups, ME is more common
among those with lower levels of education and blue collar workers, and The
CDC’s prevalence study left out huge numbers of ethnic minorities.
In a huge sampling of 128,673 adults in
Chicago, the authors have, with one strong paper, disproved the commonly held
belief that ME is found mostly in well-educated, high-income, stressed-out
women! Jason, et al buried the government’s propaganda of the illness occurring
in low numbers, finding a huge 0.4% in their random community-based sample. The
previous and erroneous estimates "have been biased by differential access
to health care treatment linked with gender, ethnic identification, and
socioeconomic status."
In A Community Based Study of Myalgic
Encephalopathy, the first paragraph dramatically states the implications of
this underestimated and mainly ignored disease. The estimated annual direct and
indirect cost to the community for each person with Myalgic Encephalopathy
(ME) has been projected to be $9,436. In addition, the quality of life for
individuals with ME has been found to be significantly lower than for other
chronic illness groups. Since the functional disability associated with ME
results in marked interruption of work and family life, the syndrome carries
important implications related to public health and policy.
The previously reported prevalence rates did
not adequately evaluate ethnicity and had lower rates by half. In addition,
British studies did not use medical examinations as part of their study.
Earlier studies done both privately and by federal agencies came up with an
under-representation because they were often looking at behavioral aspects that
prejudiced the studies. This landmark study was carried out in two
phases. The first screened 128,673 adults by telephone in a random
way (the closest birthday). In phase two, those who tested positive for ME
symptoms were given a structured psychiatric interview, comprehensive examinations,
laboratory tests, and a medical history. Two medical review boards approved
this carefully completed study. An examination for fibromyalgia was
included.
Women afflicted with ME were significantly
higher, with 522 females per 100,000 versus only 291 males per 100,000. This
study illustrates "a serious women’s health problem. For example, only 12
women per 100,000 have AIDS. Only 26 women per 100,000 have breast cancer. Only
33 women per 100,000 have lung cancer. Other findings that emerged included the
information that ME "tends to peak during middle age, was most prevalent
in those 40-49 years old, and least prevalent in 18-29 year olds and in those
over 60 years old. Patients identified were more commonly found to be
unemployed or working part time as well as on
disability. The rates for psychiatric diagnoses were in a minority
"confirming previous contentions that ME cannot
be entirely attributable to psychological factors." A majority of
59.3%, in fact, could not meet a
psychiatric criteria. The "psychiatric comorbidity" was explained by
"psychosocial stress resulting from compromised
social and financial resources and emotional distress emerging from the
experience of physical symptoms and functional impairment."
In previous studies by Dr. Leonard Jason, it
was found that Psychosocial Factors Show Little Relationship to Myalgic
Encephalopathy Recovery (J Psych & Behav Sci, 1988[12], Comacho and Jason) and that "purely psychiatric
interpretations of CFS contradict a growing body of data that point to a
pathophysiological cause and phenomenology..." (Psych Times, July 1999,
Psychiatric Aspects of Chronic Fatigue Syndrome, Taylor and Jason). Another
study found that the type of test influences a psychiatric label (Psychol & Health, 1998, Comparing
the DIS With the SCID: Chronic Fatigue Syndrome and Psychiatric Comorbidity,
Taylor and Jason.
[Ed. Note: This will probably be news for
your Congressmen since the CDC still lists the numbers from the flawed 1987
study that gave 4 to 9 per 100,000 people on their web site as well as in their
newly printed booklets from both the NIH and
CDC. Dr. David Satcher was told of this at the Spring 1999 CFSCC meeting. It has been five months and
nothing has changed, although Dr. Satcher said in
response to Tom Hennessey, "There is no excuse for the
government to put out incorrect information." Letters to your
congressmen about this new information won't hurt. It would help us if the NCF
was mentioned as your source of information.] ¯
________________________________________________________________________________________________
New Chronic Fatigue Study
Fuels Debate On Name Change; DePaul Professor Says Biological Name
Taken More Seriously
July 28, 1999
What’s in a name? Plenty,
when the subject is Chronic Fatigue Syndrome (CFS), according to DePaul
University psychology professor Leonard Jason, whose recent study suggests that
a name change would result in the much-maligned illness being taken more
seriously.
An international debate on
the issue weighs whether or not CFS’s weak moniker has hampered efforts to gain
recognition and government support. Jason was joined by Sigita Plioplys, M.D.,
a psychiatry resident affiliated with the University of Illinois at Chicago and
a research team from DePaul, which set out to determine if doctors’ perceptions
of the disease would change if the name were changed.
The team found that when groups
of medical trainees reviewed case studies of CFS patients that featured three
different names for the disease, their perceptions did change depending on the
name the illness was given. The names used in the study were: CFS, Florence
Nightingale Disease (FN), named for the public health nurse who served during
the Crimean War and was believed to have suffered from chronic fatigue; and
Myalgic Encephalopathy (ME), the medically based term used to describe the
condition.
More than 100 Chicago
medical students and residents responded to questions pertaining to prognosis,
correct diagnosis, illness cause and appropriate treatment.
When asked to assess the
likelihood that the patient would improve within two years, 42 percent of the
medical trainees assessing the Florence Nightingale name, and a similar 41
percent of trainees evaluating the CFS name responded that it was likely or
very likely that the patient would improve. However, only 16 percent of the
students and residents who thought the condition was called
Myalgic Encephalopathy
felt it was likely or very likely that the patient would improve. This finding
suggests that the doctors perceived the ME label as being indicative of a more
chronic and debilitating illness as compared to the labels CFS and FN, Jason
said.
When asked what factors were
most likely responsible for the person’s illness, a greater proportion of
medical trainees in the ME group attributed the illness to medical causes (39
percent) as compared with trainees in the FN (30 percent) and CFS (22 percent)
groups.
"If you have a more
medical-sounding name it does seem to change perceptions of the illness,"
said Jason. "This study provides a much-needed methodology for helping to
change the name, and a way to go about it in a scientific, systematic
way."
According to Jason, a more
biological-sounding name for CFS will be beneficial because people tend to
interact in a more sympathetic way when an illness has a name that communicates
medical and scientific legitimacy. Also, the perception that CFS is a trivial
illness has negatively affected government funding and support services. Jason
indicated that more research and studies are needed to erase this myth.
Jason has conducted numerous
studies on the prevalence of CFS and has written a book about the condition.
Other study team members
were Renee A. Taylor, a project director affiliated with DePaul’s psychology
department; Jennifer Shlaes, a graduate student of
psychology at DePaul, and Zuzanna Stepanek, a volunteer research assistant and
recent graduate of DePaul’s bachelor’s degree program in psychology.
The study, "Evaluating
Attributions for an Illness based upon the Name: Chronic Fatigue Syndrome,
Myalgic Encephalopathy and Florence Nightingale Disease," was reported in the
July/August 1999 issue of the "Chronic Fatigue Immune Dysfunction Syndrome
(CFIDS) Chronicle."
The findings of the study
have bolstered Jason’s confidence that CFS will have a new name in the future.
"In the next year or two, a new name will come," said Jason. "A
consensus is needed on what to change it to, and the scientific community will
have to make that decision."
CFS is a chronic condition
with symptoms that are severe, but often difficult to detect upon physical
examination. They include fatigue, headaches and insomnia. For years the
condition went un- or misdiagnosed because physicians weren’t able to
differentiate between common fatigue and CFS.
We tell you how to rest up to rev up
by Kristyn Kusek
According to a recent National Sleep
Foundation poll, one in five Americans says they're so sleepy during the day that
it interferes with their activities. Could you use more z's? Lifetime Online
spoke with the experts to find out how much sleep is enough, how to get what
you need and how to tell if that sleepiness could actually be a sign of
illness.
Sleep Sapper: Sloppy Bedtime Habits
Surprise, surprise: The number one reason most of us are
exhausted is that we're simply not sleeping enough. How to tell? "If you
wake up feeling groggy instead of refreshed, you're not getting enough
sleep," says Leonard A. Jason, Ph.D., a chronic fatigue expert at the
Center for Community Research at DePaul University in Chicago. While some
people can get by on just a few hours, it's best to shoot for at least eight
hours a night. To ensure an adequate amount of shut-eye, practice good sleep
habits: Go to bed and get up at roughly the same time each day (even on
weekends), use your bed for sleeping only (and for sex, of course) and put the kabosh on any noises or lights that could be disturbing
your slumber.
Sleep Sapper: A Stimulating Diet
There are six common dietary pitfalls that can affect your
energy level throughout the day, according to Cynthia Sass, R.D., of the
University of South Florida in Tampa and a spokesperson for the American
Dietetic Association (ADA): not drinking enough water (dehydration makes
you feel sluggish), eating too little protein (protein keeps organs
functioning and energy levels high), eating too few or too many
carbohydrates (carbs keep blood sugar levels in check so you feel wide
awake throughout the day), relying on caffeine (if you need it to be
alert, you're drinking too much — try to limit your intake to approximately one
cup of coffee or two diet sodas per day), not timing meals well (waiting
too long to refuel results in low blood sugar and energy levels) and not
eating a balanced diet (which means you're probably missing out on
important vitamins and minerals). Make just a few of these changes, says Sass,
and you'll feel more vigorous almost immediately.
Sleep Sapper: Lack of Exercise
Contrary to popular belief, exercise shouldn't make you feel
more tired; indeed, working up a sweat is actually energizing. Physical
activity conditions your body so that everyday tasks are more effortless.
According to Dr. Jason, when researchers asked regular exercisers to take a
break from their usual routine, their energy levels actually dropped. For
maximum sleep benefits, try to work out at least three times a week for at
least 20 minutes a shot. On days when you're especially weary, try some simple
stretches, to relax you and get your blood pumping.
Sleep Sapper: Illness
If you're practicing good sleep habits,
eating right and getting enough exercise but you still feel drowsy every day,
you might have a sleep disorder. In addition to general sleepiness, for instance,
chronic fatigue syndrome (CFS) is characterized by short-term memory or
concentration loss, sore throat, tender lymph nodes, muscle or joint pain,
headaches, and fatigue that lasts longer than 24 hours after exertion. Sleep
apnea, a condition that causes irregular breathing patterns during sleep, may
result in daytime memory loss and depression. PMS, the blues and mononucleosis
can also cause fatigue. The bottom line: If your energy has dipped dramatically
or if your sleep patterns are out of whack on a regular basis, see your doctor