20 Years Ago Today Survey
It was 20 years ago today that the first CFS International Awareness day was created by Tom Hennessey. May 12th is now also FM, GWS and MCS International Awareness day as well. We honor the 20th anniversary of Tom's creation with this wide-ranging and sometimes quirky survey that looks back and forward to get a sense of where we are now...Your privacy is protected; all answers are anonymous....Enjoy the survey!
1. Your Health! How was your health 20 years ago? Rate your health on a scale of 1-10 with 10 being exuberant health
I was not around 20 years ago :)
Relationships - Twenty years ago I was
in a committed relationship
divorced or separated
too young to be thinking about relationships
2. What were you doing 20 years ago?
I was working or a student full time
I was working or a student part time
I was a full-time homemaker
I was a part-time homemarker
I was too young to do any of those
I was too sick to do either of these full or part time
3. How is your health now on a scale of 1-10 with 10 representing exuberant health.
Relationships - Now I am
in a committed relationship
divorced or separated
too young to be thinking about this stuff
4. What are you doing now?
I'm a full time worker or student
I'm a part time worker or student
I'm a full time homemaker
I'm a part time homemaker
I'm too ill to do any of these things part or full time
How do you think your health will fare over the next couple of years?
Get much better
Get somewhat better
Stay about the same
Get somewhat worse
Get much worse
What do you think your chances of becoming fully healthy again are?
I'm optimistic that will happen at some point
I'm hopeful, I think there's a fairly good chance that will happen
I'm don't know but I'm doubtful that will ever happen
I feel pretty sure that's not going to happen
I really don't have a clue
What types of new treatments do you expect to try over the next year or so?
New Types of Supplements
New Pharmaceutical drugs
New Mind/body Treatments
New Pacing or Activity Management protocols including exercise
If you had an all expense paid chance to see one doctor who would it be?
Dr. De Meirleir
If you were offered the chance to take Rituximab at no cost, would you?
If you had access to medical marijuana would you try it?
If you had free access to mind/body techniques such as the Amygdala Retraining, Lightning Process, Neural limbic retraining - would you try them?
If you were offered a high risk/high benefit drug that could either propel you to health or possibly seriously disable you further - would you be inclined to try it?
Do you think a doctor somewhere out there has the answer that would return you to health?
Yes, I do
I think there's a good chance one does
I think its possible but not likely
I think its unlikely at this time
What is the most money you've spent in a year on ME/CFS treatments?
What is the strangest thing you've done to try and get well?
If you could with a wave of your hand completely eliminate one symptom what would it be?
Multiple chemical sensitivity
Where have you gotten the most valuable information for treating ME/CFS?
CFS has been full of ups and downs. For you, what have been the most negative events over the years? Please pick your top three...
1988 - CDC convened panel names this disorder 'Chronic Fatigue Syndrome'
1992- The first retroviral finding (HTLV-1) by Dr. Elaine DeFreitas goes down in flames
1999 - CDC is found to have directed almost $13 million in CFS allocated funds to other disorders
2000 - the NIH's CFS program is moved out of NAID into Office of Women's Health, the 4 NIH CFS Research groups are disbanded, research funding begins long decline
2002 - citing impossibility of such a thing happening, CFS professionals on the federal advisory committee on CFS (CFSCC), squash further movement on a name change
2005 - CDC publishes 'Empirical definition' which downplays fatigue and greatly increases prevalence levels
2005 - 32 year old Sophia Mirza dies after six years of being bedridden. An autopsy reveals abnormalities in her dorsal root ganglia.
2009 - FDA rejects Hemispherx's application for Ampligen and requests more expensive tests
2011 - Citing contamination and BWG study, the editors of Science fully retract the XMRV findings
2011 - Dr. Mikovits fired from WPI, is later accused of theft from the Institute
What have been the most positive events over the years? Please pick your top five.
1959 - the term myalgic encephalomyelitis is coined by Dr. Acheson in a long paper called "A Clinical Entity" in Lancet
1987 - Marc Iverson and Alan Goldberg form what later becomes the CFIDS Association of America
1996- Osler’s Web, a book focusing on the poor response of the government to CFS, written by Hillary Johnson, is published
1999 - Lenny Jason publishes a prevalence study showing CFS is much more common than the CDC's estimates a year before and helps obliterate the 'yuppie flu' myth
2001 - Lauren Hillenbrandt writes the bestseller 'Seabiscuit' and goes on talk publicly about CFS, garnering it much attention
2003 - For the first time in a CFS definition, the Canadian Consensus Definition highlights post-exertional malaise and calls the disease ME/CFS
2007 - CFIDS Association hires Dr. Suzanne Vernon and begins turnaround that results in a Biobank, Patient Registry and improved research program
2008 - the first ME/CFS research/treatment the Whittemore Peterson Institute, is formed in Nevada
2009 - the Lombardi paper published in Science suggesting a retrovirus is present in CFS draws an enormous amount of attention
2010 - in a surprise move, Dr. Reeves is removed from the CDC's CFS program. Dr. Unger takes over.
2010 - Dr. Montoya opens the 'Chronic Infectious Illness Center' on the august Stanford campus
2011- the biggest CBT/GET trial ever, the PACE trial , ends up having mediocre results
2011- The Hutchings Family Foundation pumps over 10 million dollars into a new effort to understand ME/CFS; the Chronic Fatigue Initiative
2011- Dr. Klimas moves out of the University of Miami to form the Neuro-Immune Institute at Nova Southeastern
2011 - The Simmaron Foundation with Dr. Peterson is formed
2011 - a successful double-blinded, placebo controlled Rituximab study suggests ME/CFS could be an autoimmune disorder
2011 - the Mt Sinai ME/CFS center featuring Dr. Enlander and Dr. Schadt is formed with a $1,000,000 endowment
2011 -the International Consensus Criteria proclaims ME is a distinct neurological disorder characterized by post-exertional exhaustion (PENNE)
Favorite Treatment Book; pick your top two...
Adrenal Fatigue: The 21st Century Stress Syndrome by James L. Wilson
Chronic Fatigue Syndrome, Fibromyalgia and other Invisible Ilnesses: The Comprehensive Guide by Katrina Berne and Daniel L. Peterson
Defeat Chronic Fatigue Syndrome Now! - Martha Kilcoyne
Doctor's Guide to Chronic Fatigue Syndrome - David Bell
From Fatigued to Fantastic - Dr Teitelbaum
Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia - Alison Bested
Treating and Beating Chronic Fatigue Syndrome and Fibromyalgia by Dr. Murphee
Your Symptoms are Real by Dr. Natelson
Favorite Non-fiction/Essays Books: Pick your top three
Betrayal by the Brain - Goldstein
Chronic Fatigue Syndrome - A Novel by Caroline Anderson
Encounters with the Invisible - Dorothy Wall
Explaining Unexplained Illnesses - Martin Pall
Handbook of Chronic Fatigue Syndrome - Leonard Jason
How to be Sick - Toni Bernhard
Night Side: Chronic Fatigue Syndrome and Illness Experience - Floyd Skloot
Osler's Web - Hilary Johnson
Patient 002 - Floyd Skloot
Recovery From CFS - 50 Personal Stories - Alex Barton
Name a subject or issue you wish the ME/CFS community would talk about less
Name a subject or issue you wish the ME/CFS Community would talk about more
If you won $100 million in the lottery and you had to give it to an organization to fight ME/CFS who would you give it to? Pick your top two
Alison Hunter Memorial Foundation
CFIDS Association (Research1st)
Chronic Fatigue Initiative
Chronic Infection Illness Center - Dr. Montoya
Evermed Foundation (Dr. Chia)
Martin A Lerner Foundation
Mt Sinai ME/CFS Researcher Center (Dr. Enlander)
National CFIDS Foundation
Open Medicine Institute - Dr. Kogelnic
Simmaron Foundation - Dr. Peterson
Whittemore Peterson Institute
In five years do you think chronic fatigue syndrome will be better known and accepted or worse?
I'm sure it will be better known and accepted
I'm pretty sure it will be better known and accepted
I'm pretty sure it won't be better known and accepted
I'm sure it will not be better known and accepted
If I knew what I know now I would not have.....
If I knew what I know now I would have.......
What advice would you give someone who has just come down with ME/CFS?
Thanks for taking the survey :). Suggestions, ideas? Interested in talking about it? Check out this thread on the Phoenix Rising Forums: http://forums.phoenixrising.me/index.php?threads/take-the-twenty-years-ago-today-survey.17352/#post-265256
Since you became ill has there ever been a significant period of time (at least several months) in which you felt well or nearly well (@80% of normal health)?
If you answered yes,
how long was your 'recovery'
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