Resources on Chronic Fatigue Immune Dysfunction Syndrome (also known as Myalgic Encephalmyelitis), Fibromyalgia, Multiple Chemical Sensitivities (Environmental Illness), Autonomic Nervous System Disorders (Dysautonomia), Allergies, and related conditions
Note: as "related conditions" here could have ended up being an entire website in itself, not all are listed on this page or ever will be. Many women with CFIDS or FMS also have problems such as Endometriosis. In the future we will hopefully have a page of links related to Endo, hormonal problems, and other gynecological issues on this web site.
What Do These Acronyms Mean?
CFS - Chronic Fatigue Syndrome (the old name for CFIDS)
CFIDS - Chronic Fatigue Immune Dysfunction Syndrome
ME - Myalgic Encephalomyelitis (the older, more accurate name for CFS/CFIDS)
DD - the Damn Disease (a more creative name for CFIDS, adopted by some patients)
PWC - Person with CFIDS (commonly used shortcut by PWC's over the years)
YPWC - Young Person with CFIDS
FMS - Fibromyalgia Syndrome (which often occurs with CFIDS)
MPS - Myofascial Pain Syndrome, which often occurs with Fibromyalgia
MCS - Multiple Chemical Sensitivities or Sensitivity
EI - Environmental Illness (another term for MCS)
POTS - Postural Orthostatic Tachycardia Syndrome (a form of dysautonomia)
NMH - Neurally Mediated Hypotension (another form of dysautonomia, often occurs with CFIDS or FMS and often also in conjunction with POTS)
OI or COI -Orthostatic Intolerance or Chronic Orthostatic Intolerance (sometimes used instead of NMH or POTS to name these conditions, a more general term)
MVPS - Mitral Valve Prolapse Syndrome (also a form of dysautonomia)
GWS - Gulf War Syndrome (formerly thought to be the same illness or a similar illness to CFIDS by some people, though this is now a less commonly held belief)
AIYH - All in Your Head, what many uninformed doctors have used as a replacement for a correct diagnosis for people with the above illnesses. Patients tend to be the people who use this acronym for it, and usually well-informed patients.
AIYB - All in Your Body, a proper rebuttal to the ignorance mentioned above
PT - Patient; Also an abbreviation for physical therapy.
Organizations on CFIDS/ME:
Co-Cure has a wonderful site with research on CFIDS, FMS, Myofascial Pain, GWS, MCS and more. They have a large email listserv and are home of the "Good Doctor's List" which has been a popular resource for years for people searching for a healthcare provider who has been helpful to others with these illnesses
The CFIDS Association funds research, lobbies Congress to get more research done, provides free information to the public, publishes the CFIDS Chronicle, and sells other informational products. Information line: 800-442-3437
The National CFIDS Foundation also provides information and has some articles from their newsletter online. They are two distinctly separate organizations.
The American Association for Chronic Fatigue Syndrome is a research organization which holds conferences every so often. The most recent one had a rather hefty registration fee. Some doctors who have done research into CFIDS are members of this organization and if you can actually afford to see such a physician, this might be a good place to look for one (many docs specializing in CFIDS treatment do not accept any health insurance plans or Medicare, unfortunately)
The Allison Hunter Memorial Foundation in Australia is also dedicated to research on ME/CFIDS and was formed after Allison Hunter died due to CFIDS-related complications and the lack of knowledge medical professionals had about her illness. Lauren - one of the SCATS list moderators - was a friend of Allison. Please look at this website. She deserves to be remembered, as do so many other people whose deaths related to illnesses like these do not become well known.
Action for M.E. is a group in the United Kingdom that provides information and other services for members
.
Massachussetts CFIDS Association has a great website with particularly useful information regarding the process of applying for Social Security Disability Benefits
CFS Support Group of Northern Virginia has an email newsletter which you can subscribe to regardless of where you live, that frequently contains useful information. In the are of Northern Virginia and Southern Maryland, this organization also has support groups specifically on the topics of mitral valve prolapse syndrome and orthostatic intolerance, which are very common in people with CFIDS (scroll down for links)
Information, Advocacy, and Support For CFIDS/ME and related conditions:
CFS News is an excellent source for the latest medical updates and research which was updated regularly for years but apparently stopped being updated in 2001
CFIDS-ME.org - Mary Schweitzer's site is one of the most comprehensive CFIDS sites on the web and she has done an extensive amount of advocacy work for people with CFIDS
Axford's Abode has been, over the years, another one of the best sites for information on this disease with well documented research written both in laywoman's terms and in medical terms for both patients and medical professionals to be able to use
The Rnase-L Enzyme Dysfunction Resource Center - if you have heard of Ampligen, you know it is a possible cure (or at least close to a cure) for some people with CFIDS. This site explains why. *Unfortunately some of it is now outdated as there is less hope now that Ampligen might be a cure for anyone.
Dr. Mazlen's Radio Show has transcripts of interviews with many researchers, doctors, and activists involved in searching for the cause(s) and cure(s) of this disease (or diseases)
RemedyFind - Non-commercial, non-sponsored, patient owned site that allows individuals and healthcare professionals to rate the effectiveness of the treatments they have used for specific illnesses, including CFIDS and FMS.
CFS Days has been online for years and has many useful links and a humor section of cartoons and jokes
CFIDS in Youth (CFS-Y) The CFIDS Youth Alliance (CYA): information and links to personal pages. Call 800-442-3437 Some of us met each other through a list created for people who outgrew CFS-Y. CFS-20's is no longer in existence, apparently, but through it four of the people who created SCATS, this website and the email lists first met years ago.
Listening to CFIDS has some great essays by people with CFIDS (PWCs) that you may relate to if you have CFIDS, and that may be very informative for people who do not have CFIDS. This site has been online for years and is still a great resource.
How to Kill a Sick Friend has been online for years and is a great article for friends or family members of people with CFIDS to read. Actually, this is a great article for the family or friends of a person with any chronic, disabling illness to read.
Fog Clutter is a web zine by people with CFIDS with creative writing
"I Remember Me" review by Roger Ebert of the documentary on CFIDS directed by Kim Snyder (an excellent film in the opinions of many people who have CFIDS and have seen it)
I Remember Me.Com is where you can buy a copy of the video of this film, which may be useful in explaining an illness which is often very hard to explain.
FM, CFS & Related Syndromes Site provides lots of general & research information & links on FM, CFS, NMH and other conditions related to these.
Sleep Disorders & CFIDS Explaination of the alpha-delta abnormality seen with people with FM & CFIDS. Also includes lots of links to other sites on various sleep disorders common in people with FM & CFIDS.
CFIDS and Related Illnesses - an index of abstracts of articles from the CRISP database which has a large amount of updated, international research
The HHV-6 Site: This is a virus that has been linked to CFIDS, AIDS and other diseases
Find a Pen-Pal with these Pen-Pal Networks:
When contacting pen-pal networks, please let them know your age
Reaching Across Countries: Young people with CFIDS or FMS, under the age of 25, who would like a pen pal who understands can get one somewhere in the world, through this organization. Send your name, address, and interests to:
R.A.C. , P.O. Box 9304, Bardonia, NY, 10954 or email Lisa Cohen at brainfog@att.net
CFIDS Friendship Network: P.O. Box 7202, Gainesville, FL, 32605, Send $1.00 (American) and a legal-sized, self-addressed, stamped envelope
CFS Youth Outreach: Contact Sharon Walk, 14 Shetland Rd. Forham Park, NJ 07932-1813
Teen CFIDS Pen-Pal Connection: Contact Connie Howard 1810 Cliffwood Ct., New Albany, IN, 47150
PWC Pen-Pal List: 15868-B Gale Avenue, Box #818, City of Industry, CA, 91745,
send 25 cents and a self-addressed, stamped envelope
Links which should be in the research section, bottom of page
(scroll down on this page for links to research centers on HHV 6 and stealth viruses)
Advocacy and Activism Pages:
Our Voices has the stories of people with CFIDS and FMS, put together by a woman with FMS
The Message in a Bottle Project this was the Canadian version of an idea that actually came from Jen (whose name is, um, not on these sites about it), in 1999.
US - Message in a Botttle - The idea by me (jen) and another woman in the U.S. was to send our "message" letter inside, or with a large number of, empty medication bottles, on a particular day. We did not manage to get this idea off the ground, but one person did send the letter to the place it was intended for, the American Medical Women's Association. I wrote a lot of this letter, much of which has outdated information now.
Suicide: Though CFIDS is not a terminal illness, suicide is an unfortunately frequent cause of death in people with CFIDS
Fibromyalgia and Myofascial Pain and Chronic Pain Treatment:
Dr. Starnyl's site on FMS (she is the author of that big blue book and the big purple one too, which you'll probably see if you ever look in a bookstore for a book on FMS - and now there's a big green one) They are handbooks on Fibromyalgia and Myofascial Pain, with lots of information about trigger points, a topic that is not detailed in very many books on these illnesses. They're listed on our recommended books page.
National Association of Myofascial Trigger Point Therapists: this type of treatment is helpful for many people with myofascial pain, but finding someone who knows how to do it cn be very difficult. As many of us learn from experience, massage therapy by people who do not understand your condition, can do more harm than good.
Myofascial Release - John Barnes' therapy; they have two treatment centers but may also be able to refer you to a person near you who is trained in myofascial release therapy 1-800-FASCIAL
Dysautonomia (including POTS and NMH):
Postural Orthostatic Tachycardia Syndrome (POTS) - this is an excellent site and over the past few years has been the only web site with this much information about this condition on the web that I can find (or that anybody I know could find), and has some very useful information for people with NMH or POTS. For example, most doctors have never prescribed Midodrine, yet many of us with these disorders use this medication. This website warns about the danger of taking Midodrine at bedtime (it can lead to cardiac arrest), something that a doctor may not know to tell you (this statement is based on personal experience with several doctors).
Orthostatic Intolerance (OI) also known as Orthostatic Hypotension, Chronic Orthostatic Hypotension (COI), and Neurally Mediated Hypotension (NMH)
Fainters United is a forum on Delphi for people with dysautonomia such as Neurally Mediated Hypotension (Orthostatic Intolerance), Neurally Mediated Syncope (prounce sink-o-pee, meaning you faint), POTS, and related conditions. It was not very active last time I checked.
Society for Mitral Valve Prolapse Syndrome: PO Box 431, Itasca, IL 60143-0431
Irritable Bowel Syndrome
Celiac Disease:
Environmental Illness and Multiple Chemical Sensitivities
The Earth Web Project seeks to create awareness about how illnesses such as CFIDS, FMS, and MCS are created and/or worsened by the destruction of our planet with toxic chemicals.
MCS Survivors: Resource Site for Multiple Chemical Sensitivity and Environmental Illness
MCS Web: Multiple Chemical Sensitivity and Environmental Illness
The Chemical Injury Information Network provides people with MCS referrals to doctors and attorneys, and a list of organizations and other people with MCS near where they reside. It also provides peer counseling and publishes a newsletter "Our Toxic Times"
Environmental Health Network PO Box 1155 Larkspur, CA 94977, 415-541-5075 Information, referrals, advocacy, and publishes a newsletter, The New Reactor
The Environmental Health Association 1800 S. Robertson Blvd., Ste. 380, Los Angeles, CA 90035, 301-837-2048
National Center for Environmental Health Strategies: 1100 Rural Ave., Voorhees, NJ, 08043. 609-429-5358
National Foundation of Chemical Hypersensitivities and Allergies: PO Box 222, Ophelia, VA 22530
Human Ecology Action League (HEAL): PO Box 49126, Atlanta, GA, 30359, 404-248-1898 Telephone support, national information and referral service; has chapters across the US and publishes a magazine (website, if we find it, will be added)
.(scroll down for more food-related sites on this page)
Score Card is an environmental information service provided by the Environmental Defense Fund. From their site you can find out about pollutants and ecological problems in areas across the U.S.
The Right to Know Network has a site with free access to databases that give you information about environmental problems and their effects in areas across the U.S.
A Happy Planet carries organic clothing and bedding for sensitive people
Food Issues:
The Alliance for Bio-Integrity is an advocacy group that provides information about genetically engineered foods on it's site.(also known as GMOs - genetically modified organisms)
Vegweb.com is an online vegetarian and vegan resource guide
Research Centers on Possible Causes:
University of Miami: Dr. Nancy Klimas research on low blood volume and Procrit, try calling
305-672-5009 (there's a website, we just need to add it here)
