| WEBSITES YOU MIGHT USE FOR FURTHER RESEARCH |
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| Updated: 5/23/05 |
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| The World Wide Web is large, useful and contains a lot of information on CFS/CFIDS. However, finding the information you want is not easy. Much of the information on the web is basic, redundant, or downright useless. Some of the information we have found is downright insulting to our intelligence and/or totally wrong. Once you begin going through the sites, you will find almost anything from selling you sure cures, to a person own site where they give you their history, to sites built by individual doctors which state their views, and to sites which have not been updated for years. We suggest that you avoid any websites which are trying to sell you something especially a “cure”. The only exception to this is ProHealth at www.prohealth. com/index/html or their other site www.immunesupport.com (see below for more information). Please take with a grain of salt any website whose author has been cured of CFS even if they are doctors. You should be leery of sites or information or treatments “which may be proven to be helpful over a 3 to 6 month period. This illness fluctuates too much with its ups and downs. To this date, we have read nothing that would indicate a successful or long term CURE to CFS. You need to be concerned about the QUALITY of the information contained within the website. We hate to say this, but there are websites where doctors or even research groups who are citing or trying to prove their own ideas as to cause and/or cure for CFS. RESEARCH TIPS A friend of ours who has worked for Abbot Labs sent us a brief article on how to use the web to get the best information. One of the first comments was: “are you going to sit there and sift through thousands of web pages, many of which may be completely irrelevant to your interests?” Many websites are not up to date. and we have found many (I got CFS … and am now cured) For interest, I entered CFS into google search engine and came up with 3,410,000 hits. By refining it to Chronic Fatigue Syndrome, it came up with 1,660,000 hits. Even Chronic Fatigue Syndrome treatment came up with 1,380,000. The article goes on to list 3 levels of web searching. The first and most common are the consumer-oriented information and are those which are trying to sell their products or cures. The second level is more on technical information aimed toward the health professional. The third level is the medical sites which we do not usually have access to and are in technical or medical language. They suggest search engines which include health categories: www. altavista.com/, wwww.lycos.com/,and www.infoseek.com/. There are several health information site only that include www.healthatoz.com, www.healthfinder.gov/, (which is maintained by the federal government), www.mayohealth.org/ (the Mayo Clinic library section), www.intelihealth.com (maintained by Johns Hopkins University and Aetna U.S. Healthcare). Our website list is a good place for you to start because we have checked each one out and the total sites cover a wide range of options including a couple mentioned here. The websites used in this section begin with government health websites where CFS is discussed along with other medical conditions. The next section consists of organizations that have been formed solely around CFS/CFIDS/ME including support groups. These sites offer a broad range of information, but even here you have to watch out for groups or research listed are supporting their own theory of CFS. The last group of sites are reciprocal sites which we have agreed to list because they list our website. Even here, we have been very careful to list only the sites that show responsibility and possibly worthwhile information for you. Please let us know if we missed have missed a good website. SOME SUGGESTED WEBSITES GOVERNMENT WEBSITES are a requirement for any research and information on any health questions as well as CFS. Medical personnel usually check with these sites first for any questions they may need to research. The CENTER FOR DISEASE CONTROL in Atlanta, Georgia at www.cdc.gov/. This is there main home page that will lead you to all the information you want on all health issues. Instead of giving you the website for CFS (which is as long as your arm), go to the general site and use their internal search to check for Chronic Fatigue Syndrome. The NATIONAL INSTITUTE OF HEALTH is another government site at www.nih. gov/ This site also has an internal search engine for you to search for the many topics concerning CFS. The CANADIAN EXPERT CONSENSUS PANEL CRITERIA has a section on ME/CFS at www.cfids-cab.org/MESA/ccpc.html/. Remember most of the rest of the world calls this thing Myalgic Encephalomyelitis as well as CFS. The ONTARIO CANADA ME ASSOCIATION is located at www.meao-cfs.on.ca/. The M.E./CHRONIC FATIGUE SOCIETY OF VICTORIA is an Australian site located at home.vicnet.net.au/. The ME ASSOCIATION OF THE UK can be found at www.meassociation.org.uk/. Australia also has a national website for CFS that is located at www.medicineau.net. au/clinical/medicine/CFS.html/. Another group ME/CFSSOCIETY (SA) has a site at sacfs.asn.au/ Another AUSTRALIAN site fro ME/CFS is located at www.zip.com.au/. The U.K. PEOPLE SUPPORT CFS-ME is located at upscm.cp.uk/. The United Kingdom (England) also has a national website at www.dh.gov.uk/, You can search under CFS and/or ME. New Zealand can found at www.anzmes.org/. If you can speak foreign languages, this is another site www.brame.org/ that lists sites in Europe. We have contacted some of these sites for information which is not already included in our website or their suggestions. Any we receive in English will be included in this site. The WORLD HEALTH ORGANIZATION also has their own website at www.who.int/en/. The M.E. ASSOCIATION OF THE UK is located at home.vicnet.net.au/.ut/html. There are many CFS organizations in the United States and foreign countries with websites for information and research. CFIDS ASSOCIATION OF AMERICA at www.cfids.org/ is an excellent website for information on this dreaded disease. They have a quarterly magazine along with “education for your doctor”. It is for sure we need to educate most of our doctors. Most of us cannot afford to travel to some of the well known CFS clinics and doctors. THE NATIONAL CFIDS FOUNDATION at www.ncf-net.org/ is another excellent source for information. Their recent “FORUMS” say they are close to finding the cause(s) because of research done 10 years ago but not released because the doctor(s) file for a patent. In conversations with their President, they hope to have a cause(s) or close to it within a year. There is also an AMERICAN ASSOCIATION FOR CHRONIC FATIGUE SYNDROME (AACFS) at www.aacfs.org/ which contains a wealth of information. There are many sites for selling you cures or products for CFS/FM. We will only include one because they are a non-profit organization with any profits going into research. PROHEALTH is at www.prohealth.com/indewx/html/. They also have another site at www.immunesupport.com/ which is good for keeping you up to date on latest research and possible treatments. We get many of our vitamins, herbs, and supplements from them because we feel comfortable with the quality of their merchandise and pricing. In addition to their store, they have a very good message board and some chat rooms. There was a very interesting post about Chronic Borrelia infections. Go to the message board and search under "maybe you've forgotten my name by now" going back to the 2/4/04 date. The site she refers to is at www.ilads.org. SUPPORT GROUPS There are several support sites for assistance and aid. I cannot list every support sight out there. However we start with support sites which do give lists: The Chronic fatigue syndrome support group lists 100 sites at www.fati8guerelief.com CFS support lists various sites plus provides information at CFS support group OUR FM/CFS WORLD, INC. has a website listing support groups by state at www.ourfm-cfidsworld,org/ The following is a list of support groups which we feel are worthwhile. The Chronic Fatigue Syndrome Association of Arizona at www.cfsofaz.org/. The Northern Virginia CFS/FMS Support group at www.geocities.com/cfsnova/. The Portland CFIDS Association is located at www.portlandcfids.org/. The Chronic Fatigue Immune Dysfunction Syndrome/Fibromyalgia syndrome Support Group of Rockland, N. Y.. is at nysn.org/rockland/. The Seattle CFS Support Group is located at www.geocities. com/seattlecfs/ The Shasta CFIDS group is at www.shasta.com/. Considering where live, we are pleased we have an excellent website (DALLAS/FORT WORTH) at www.vitualhometown. com/dfwcfids/. CFS & ME UK Support Groups at http://m.webring.com/. The VERMONT CFIDS ASSOCIATION is loacated at www.monkeyswithwings.com/.. The M.E./CHRONIC FATIGUE SOCIETY OF VICTORIA is an Australia site located at www.zip.com.au/. GENERAL HEALTH INFORMATION SITES There are many sites with good health/medical information as well as search engines for medical information only. (We do a lot of medical searches especially in the areas or illnesses which affect us.) These are good sites to act as your family medical book or quick information in emergencies AFTER CALLING 911 OR OTHER EMERGENCY NUMBERS. A good FAMILY HEALTH SITE is health a to z. The HEALTH*CYCLOPEDIA is a health search engine that covers over 5,000 health topics found at www.healthcyclopedia.com/links. The NATIONAL LIBRARY OF MEDICINE/NATIONAL INSTITUTE OF HEALTH at www. medscape.com/ is a health care website used by medical personnel. It requires you to register, but is an extremely comprehensive site. The MERCK MANUAL has been the doctors "bible" for many years. We've had the "doctors" version of the Merck Manual for over 30 years and getting newer additions from time to time. Merck Manual has come out with a home edition which puts most things into normal language. The Merck Manual on line is located at merck.com. The HARVARD MEDICAL SCHOOLS keeps up intelihealth.com. WEBMD offers medical information at www.webmd.com/ The AMERICAN MEDICAL ASSOCIATION is at www.ama-assn.org/ The MEDICAL WORLD SEARCH is located at www.mwsearch.com/ OTHER CFS WEBSITES THAT HAVE USEFUL INFORMATION There are many other goods sites on the web with valuable information. The following are some of the sites we recommend; however, you have to watch a few sites which are not totally up to date but contain useful "historical information" and others that have specially asked us to use their main home page to receive full information of their site (you can find CFS/ME information easily within these sites). CO-CURE (CO-operate and Communicate for a Cure) is a very good site for lots of information, but it has not fully been kept up to date. However, this site is worth the visit at www. co-cure.org. CFS-NEWS at www.cfs-news.org/ has a wealth of information including news sources. Unfortunately, some of the site has not been updated. ADVANCED TECHNIQUES FOR OVERCOMING CFS, FMS, AND GWS is an interesting website that has some different ideas about CFS. It can be found at www. beatcfsandfms.org/ |
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