USEFUL LINKS for cfs/me patients
Medicare Coverage - Search by State
Partnership for Prescription Assistance
Phone: (888) 477-2669
“The Partnership for Prescription Assistance has assisted nearly seven million people in the medicines they need for free or nearly free.”
Rx Assist's List of Patient Assistance Programs
“RxAssist is a nationally recognized, web based medication assistance resource center. Established in 1999 with
funding from The Robert Wood Johnson Foundation, RxAssist gives providers, advocates, consumer and caregivers comprehensive, up-to-date information in an easy to use format.”
Free Medicine Program
“Our mission at the Free Medicine Program is helping patients in obtaining prescription drugs and medications
absolutely Free of charge.”
BenefitsCheckUp is a free service of the National Council on Aging to help adults over 55 find help with prescriptions and other basic necessities. From the website: “There are over 2,000 federal, state and private benefits programs available to help adults over 55. But many people don’t know these programs exist or how they can apply.”
The Medicine Program
The Medicine Program is a patient advocate organization and is a free service. “Our goal is to assist you and your family find, apply and qualify for the right Patient Assistance Program(s). By working closely with you, your doctor and the drug manufacturers we help cut through the red tape and assist you in receiving your medicine free-of-charge.”
The mission of NeedyMeds is to make information about assistance programs available to low-income patients and their advocates at no cost. Databases such as Patient Assistance Programs, Disease-Based Assistance, Free and Low- Clinics, government programs and other types of assistance programs are the crux of the free information offered online.
Rx Hope specializes in helping small, emerging pharmaceutical companies manage their Patient Assistance
Programs. From the website: “As an integral part of the Triplefin group of companies, we are a highly professional team of caring and concerned people dedicated to making the patient assistance process as easy and comfortable as possible for the patient, the healthcare provider and the pharmaceutical company.”
Patient Advocate Foundation
The Patient Advocate Foundation (PAF) Co-Pay Relief Program (CPR) currently provides direct financial support to insured patients, including Medicare Part D beneficiaries, who are financially and medically qualified for pharmaceutical treatments and/or prescription medication co-payments, co-insurance and deductibles relative to your diagnosis.
"We are a nonprofit charity that provides critical medicine for people who can’t afford it. We offer more than 500 medications through our mail order pharmacy delivered to all 50 states, Puerto Rico and the Virgin Islands. With support of generous donors, we help more than 85,000 people each year get the medications they need to stay healthy."
News and information about warnings, lawsuits, and recent news on various drugs and medical devices.
The web resource Drugdangers.com is sponsored by Seeger Weiss LLP. The site has pulled together as a single resource everything related to defective medical devices and drugs in order to promote education and awareness for victims, their families, and the general public. Our goal is to provide accurate, relevant information that can be used for general informational purposes, and to advocate for a greater awareness of the dangers of multiple drugs and devices that are still in use today. - See more at: http://www.drugdangers.com/about-us/
Seeger and Weiss is a law firm representing clients in class action lawsuits. The site is well referenced and contains a lot of useful information.
Lawsuit alert: "Testosterone therapy is intended to help men prevent the natural decline of testosterone that comes with aging. Treatment was developed to improve sex drive, increase bone density, and build muscle mass. Though side effects and complications are more frequently noticed in patients over the age of 65, more and more cases of younger men suffering severe adverse events have surfaced."
Read more at: http://www.drugdangers.com/testosterone/lawsuit.htm
MAILORDER SUPPLIERS OF NUTRITIONAL SUPPLEMENTS
Phone: (800) 383-6008
This is a great outfit – high quality supplements at very affordable prices. Free shipping! Very fast delivery. They include a 10% discount card with each delivery.
130 Lexington Parkway
Lexington, NC 27295
Toll Free: 1-800-381-0759
U.S. Direct Dial: 1-336-956-0800
Vitacost has a huge selection of supplements. Nobody can beat their prices.
350 South 400 West #102
Lindon, Utah 84042-1931
Toll-free phone: (800) 235-320
Fax: (800) 596-4242
Reasonably priced vitamins, amino acids, herbs, personal care products, digestive aids, minerals, and antioxidants
obtained directly from the manufacturer.
17825 Indian Street
Moreno Valley, CA 9255
Phone: (951) 616-3600)
Fax: (951) 616-3601
2040 Alameda Padre Serra
Santa Barbara, CA 93103
Toll Free: (800) 366-6056
U.S.: (805) 564-3064 or
Internationally at 001.805.564.3064
Fax: (805) 965-0042 or
Internationally at 001.805.965.0042
Monday through Friday 7am to 5pm (PT)
ProHealth (formerly The CFIDS and Fibromyalgia Health Resource) offers a broad selection of supplements frequently recommended for people with CFS/ME. Their website contains a Research section that includes over 1,000
articles about CFS/ME. ProHealth also distributes three informative newsletters free of charge.
3160 Erie Boulevard East
DeWitt, NY 13214
Phone: (800) 634-1380
NEEDS (Nutritional Ecological Environmental Delivery System) is virtually an institution among mail-order resources. NEEDS maintains a huge selection of brand-name vitamins, supplements, herbs, Bach remedies, and glandular preparations at a discount.
Customer Service Department
825 Challenger Drive
Green Bay, WI 54311
High quality supplements for GI support.
TransPacific Herbal Products
8499 S. Tamiami Trail #274
Sarasota, FL 34238
Phone Orders: (800) 336-9636
Questions: (941) 966-9886
Chinese herbs for sinus infections, allergies, yeast control, blood sugar, PMS, arthritis, flu and colds, alertness, eyes, circulation, herpes, headaches, immune system, hair loss, liver function, and more.
Wellness Health & Pharmaceuticals
3401 Independence Drive, Suite 231
Birmingham, AL 35209
Toll Free: (800) 227-2627
Compounding pharmacy: glutathione, Armour thyroid, bioidentical hormones. Also OTC National brands, including
Allergy Research Group, Kal, Montana Naturals, Nature's Way, Natrol, Schiff, Twinlab, Kyolic, Cardiovascular Research Ltd., and Rainbow Light, at a discount.
100 Park Avenue
New York, NY 10017
Toll free phone: (800) 633-1106
Local phone: (212) 682-2817
Wide selection of specialty supplements, personal care products, herbs, and naturopathic remedies.
Extensive list of CFS/ME treatments of every kind. This site has everything
ImmuneSupport provides an excellent database of treatments as well as protocols.
This is the best source for patient experiences with pharmaceuticals. (Not restricted to CFS/ME)
Databases for doctors (worldwide), drugs, disability attorneys, and support groups.
NEWS AND INFORMATION
Phoenix Rising is Cort Johnson's brain-child, and it is one of the best overall information sites out there. This website has literally everything: research, advocacy, treatments, personal accounts and great boards.
Dr. Sarah Myhill
Dr. Myhill runs a great website, with all her views and treatments available for the reading. She covers every
topic thoroughly, with excellent, clear explanations of what causes symptoms and how to treat them. This site is essential reading for patients with CFS/ME as well as doctors and clinicians.
Dr. Jacob Teitelbaum
Dr.Teitelbaum's informative articles can all be found here.
Co-Cure is now a listserv. (Their website is no longer functioning.) You can search archived material by clicking on the link: https://web.archive.org/web/20140326134109/http://www.co-cure.org/
The CFS Report
The CFS Report has a lot of everything: news reports, links, research, advocacy, as well as an interesting video of Dr. Montoya speaking at Stanford University about CFS/ME.
ME-CFS Knowledge Center
This site truly is a knowledge center. It provides general information, links to organizations, lists of support groups, and a video library.
National Alliance for Myalgic Encephalomyelitis (NAME)
NAME provides access to a large body of CFS research, organized by year and by topic.
This page contains a list of every FM support group in the U.S. as well many located abroad.
FMS support groups located in the U.S.
Partnership for Research in CFS and ME
Huge, searchable database of patient experiences with ME.
This is a resource site with links to every ME/CFS organization in the world and with extensive local links in the U.K.
The Medical Insider
This informative and well-organized website covers all bases: research, treatment, analysis, and links to practitioners in the U.K.. Great explanations of the mechanisms of CFS/ME (with pictures!). If you don't understand Pall's NO/ONOO‾ hypothesis, or Cheney's theories on diastolic dysfunction, the Medical Insider will enlighten you. Also lists many European and U.K. online suppliers for supplements.
CFS/ME and Fibromyalgia Self Help
A website created by Bruce Campbell, who before becoming ill, was a consultant to self-help programs for chronic illness at the Stanford University Medical School. The site contains some good articles on coping techniques.
ME Society of America
The ME Society of America was created by Maryann Spurgin, a long-time veteran of CFS/ME. The site has not been updated since 2009, but it still contains many useful links, research articles, videos, and personal stories, all beautifully organized for easy access.
Health Rising is Cort Johnson's new website. It is focused on every aspect of treating CFS/ME - recent research, news, information on specialists, and treatments. Cort distributes an excellent free newsletter with the latest in CFS/ME news.
Shoutout About ME
Shoutout is an online magazine with breaking news about ME/CFS events, research, and advocacy. It is edited by Russell Logan, a former journalist and speechwriter with over 30 years experience. The site is beautifully laid out.
CFS Central:Beyond-the-headlines reporting on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Mindy Kitei is an established journalist with a pithy style and a nose for news that will appeal to any reader. A must-see for anyone who wants to keep up on the latest in CFS/ME events.
CFS Patient Advocate
“Consuegra" is the father of a young woman who fell ill with CFS/ME several years ago and has been housebound ever
since. This blog is an excellent source of information. Videos of the 2011 Mt. Sinai conference are posted here (archives: Dec, Nov 2011), including Dr. Kenny De Meirleir's enlightening presentation on GcMAF.
Nice Guidelines Blog
“Dr. Speedy” is a medical doctor and an ME patient. This blog is packed with Dr. Speedy's insightful and delightfully
irreverent critiques of the latest medical and research articles. You could spend all day here.
A blog that says what we are all thinking.
Life as We Know It
The newest research about living with Chronic Fatigue Syndrome (CFS)/XMRV/HGRAD/fibromyalgia, with personal
observations by a long-time CFS/ME veteran.
One Agent for Change
Marly Silverman, founder of PANDORA, started this blog “to serve as a catalyst for change that is much needed on the issues affecting millions of individuals stricken with neuroendocrineimmune disorders worldwide.”
Living With Chronic Fatigue Syndrome
This blog was created by a young Australian who contracted ME/CFS in his teens. Fortunately for us, he has kept a careful log of his symptoms as well as every treatment he has tried. This kind of information is immensely helpful for people who either have or are considering trying these treatments.
This is an interesting European blog written by Carlitos. The author has been treated by Dr. De Meirleir and has posted his experience.
Hope for FM and CFIDS Sufferers
This blog is maintained by molecular biologist, Dr. Timothy Luckett. It contains the best explanations I have read not only of XMRV, but of recent research on CFS/ME.
Mary Schweitzer, one of the first recipients of Ampligen, keeps this blog.
Hillary Johnson, author of Osler's Web, is now on twitter.
Do you want to know how other people cope with CFS/ME, how they recovered, what treatments they've tried, what doctors they've seen? Forums are where you get all that, and more.
Phoenix Rising Forums
You can't beat these forums. Lots of great information by people who know what they're talking about.
This is an Australian forum with an Aussie sense of humor and very nice section on recovery. The name of the forum
comes from the Matchbox 20 song, “I'm not crazy I'm just a little unwell.”
This is a very broad-based info center – 123,975 posts on 10,442 topics by 1550 members.
ProHealth defines itself as “commerce with compassion." Their boards are open to just about any topic.
“A discussion for Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS, CFIDS) and Fibromyalgia (FMS) patients who are undergoing experimental medical treatments or who are interested in learning about them.”
Hawkes' Health Forum
Hawkes' Health Forum has a good sub-section on CFIDS, as well as a lot of information on supplements and other related health concerns. Very welcoming.
ME/CFS Fibromyalgia – The Invisible Disease
Jayne Barnard, a long-time CFS/ME veteran, has assembled this informative: news, research, humor, information for
professionals and a forum.
Sandy Robinson has written scores of articles about CFS, FM and interstitial cystitis. They are all on this site.
Living with CFS/ME
Maija Haavisto, a Finnish journalist and medical writer with CFS/ME, has kept careful track of every treatment she has tried, and there have been many. Haavisto's knack for organization is apparent on this website, which contains not only detailed information about CFS/ME treatments, but a clear description of relevant symptoms, book reviews, articles and useful links. A free ebook containing descriptions of hundreds of CFS/ME medications, Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia(abridged version) is available on her website.
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS):Helpful Hints for Daily Living and Information on Services and Resources
This is an informative website run by Priscilla Ling, an occupational therapist with ME.
For young adults with neuroimmune illnesses.
The ME-CFS Community
This is a worldwide community for individuals who wish to learn from, and directly communicate with those who are
afflicted with ME/CFS.
CF Alliance discussion group
“All info and opinions posted are ONLY about CFS/ME/FM and their related illnesses such as Brainfog, IBS, RLS, TMJ, Lupus, Sjögren's, Candida, Raynaud's, Celiac, Sinusitis, Lyme, Arthritis, Chronic Pain, GWS and MCS. ONLY
helpful health and disability info, caring support and mutual respect are posted here.”
The SCV Arthritis & Autoimmune Disease Support Group
The SCV Arthritis & Autoimmune Disease Support Group is for individuals with any form of Arthritis, Lupus, Fibromyalgia, Chronic Fatigue Syndrome and any of the other diseases in this large group of similar & related illnesses.
This Peer Support Group will be a place to learn from each others experiences and to develop a new support system of peers that actually understand what you are going through because they are going through it as well.The primary goal of each meeting is simply to make sure everyone who attends leaves feeling better than when they arrived & knowing that they aren't alone. These diseases also affect those close to us, so family members & friends are encouraged to join us.
For more information please visit:
FREE ONLINE PUBLICATIONS
Diagnosing and Treating Chronic Fatigue Syndrome, by Dr. Sarah Myhill