Advocacy |
Research is desperately needed for these
chronic diseases / syndromes. We can promote research through public awareness.
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How to write effectively
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How to write effective E-mail to Congress |
Write the surgeon general
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Write the surgeon general to draw awareness to this illness... |
Advocacy Resources
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Very large listing of advocacy resources |
More Advocacy Resources
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Another listing of advocacy resources |
Top 10 concerns
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The top 10 concerns of people effected by CFIDS/FMS/MCS* and related disorders (composed by: The New York Support Network) nysn@mailcity.com
PO Box 1085
Pearl River, NY 10965
United States
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Media Email Addresses
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Contact the Media about these diseases |
Sample letters
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Sample letters to government officials…. |
More sample letters
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Continued, sample letters to government officials…. |
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ANS |
Autonomic Nervous System & disorders.
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Post on Forum
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Post on MGH Forum about ANS |
Post on Forum
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another MGH Forum post |
Research Foundation
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National Dysautonomia Research Foundation |
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BOOKS |
Listing of books that are helpful
in understanding Fibromyalgia, Chronic Fatigue Syndrom, Migraines, Chronic Pain..... Some of these books have coping
techniques, others list new medical testing and procedures as well as the latest research and theories.
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The New Arthritis Breakthrough
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This book discusses Antibiotic therapy and possible cure.
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Plague Time
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"Plague Time" (282 pages. Free Press. $25).
Though genes and lifestyle are no doubt important, Ewald
says, the primary causes of today's "slow-burning plagues"
are parasites-viruses, bacteria and other infectious microbes-whose
long-term effects we have simply failed to recognize
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Beyond Chaos
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"Beyond Chaos" One Man's Journey Alongside His Chronically ill Wife
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Brain Lesions |
Some people with Chronic Fatigue
Syndrome have a finding of white matter lesions on MRI testing. Some have been reported to have brains looking
similar to swiss cheese.
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Post on Brain Lesions
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Post on the Neuro Forum - linking to Lyme, MS...additional links included. |
Post on Brain Lesions
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Post from the About.com - Chronic Fatigue Forum
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Chairi / Cervical Spinal Stenosis |
Some cases of Fibromyalgia have
been found to actually be caused by Chairi or Cervical Spinal Stenosis - a condition in which the brain is "crowded".
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Surgery Story
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Surgery Patient's story of cervical stenosis (or spinal compression) in the spring of 2000. |
Chat Transcripts (Dr. Haffez)
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Transcript of a chat with Dr. Dan Heffez (March 13, 2000) from ABC news.
Sorry, the transcripts are no longer available :( |
Surgery - bad outcome
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Neurosurgery and CFS - Many questions still remain |
One person's story
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Article from About.com about one person's struggle. |
Chart
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A chart comparing symptoms of fibromyalgia & CFIDS to Chiari malformation. |
Surgery For CFS/FM?
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The surgery is expensive about $30,000 and may be considered "experimental".
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Neurological Abnormalities
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Are Chiari I Malformation Related to Pain in FMS Patients?
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Spinal Cord Compression Link
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Dr. Rosner Leads the Way with other medical doctors to show the Relationship of Spinal Cord Compression to FMS
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Colostrum |
"First milking" colostrum,
it's necessary to build up to AT LEAST 10 capsules a day... and...
it is necessary to get "first milking" colostrum because it's more potent.
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Bovine Colostrum
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Clouds Online post with the following link: orionhealthinc.com
phone # (801) 485-5173
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Deaths |
Dr. Jack Kevorkian
has assisted in the deaths of 3 persons diagnosed with Fibromyalgia !!! Additionally, there is some research
implying death can be a consequence of this illness, based on the theory that this disease is caused by
low grade infections.
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Fibro Suicide Article
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Jan Murphy committed suicide last summer because she could no longer live with a disease that many doctors still don't believe exists.
She had fibromyalgia, a chronic pain condition that made a cool breeze on her skin feel like fire and caused every part of her body to ache. After CT scans and MRIs showed no medical reason for her pain, Murphy turned to Dr. Jack Kevorkian for a final solution.
"When you start hearing there is no hope, no treatment, and no cure, over and over, you lose your will to fight."
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Mercy Killing
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The body of a 61-year-old
woman from Roanoke, Virginia was dropped off at a hospital by
Dr. Jack Kevorkian and an associate on Thursday March 5, 1998. A
note with the body indicated that the woman suffered from rheumatoid
arthritis. Just a few hours earlier Kevorkian dropped off the body of
a 42-year-old Boston man at a different hospital. A note with the man's
body indicated he suffered from fibromyalgia. Both rheumatoid arthritis
and fibromyalgia are painful, but nonterminal disorders.
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Doctors |
Dr. Dan Heffez
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Dr. Dan Haffez is a Neurosurgeon who specializes in Spinal Compression disorders, Chairi and Cervical Spinal Stenosis.
After years of suffering with Fibromyalgia/CFS and having become nearly incapacitated, he found
that I have Cervical Spinal Stenosis. I had surgery and now I am regaining my life !!!. If you
have been diagnosed with Fibro/CFS or have similar symptoms with no diagnosis, it would
be well worth your effort to contact Dr. Haffez at the Chicago Institute
of Neurosurgery and Neuroresearch. |
Dr. Paul Cheney
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Dr. Paul Cheney, M.D. Ph.DAn advocate and most knowledgeable person on Fibro/ CFS |
Quackwatch
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Your Guide to Health Fraud, Quackery, and Intelligent Decisions |
Good Doctor List (by state)
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Drs. listed here, have been referred by FM/MPS patients who have had a good experience |
Bad Doctor (report)
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Report by the Public Citizen (a Ralph Nader group) on research into "bad" doctors... |
Interviewing
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How A CFS/FMS Patient Can Interview a Doctor |
Questions to ask
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Questions To Consider When Choosing A New MD |
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Fasting / Food |
Can fasting help ?
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Fasting for Fibromyalgia and chronic illness. |
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Growth Hormone / Hormones |
Human Growth Hormone, Injection ONLY,
has been proven by Dr.Robert Bennett in controlled studies to help those Fibromyalgics who are G.H. DEFICIENT.
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Hormones may ease pain
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Thursday, March 8, 2001
Hormone May Ease Chronic Pain from Fibromyalgia |
General Information
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Growth Hormone/Rejuvenation/Anti-Aging |
Clouds Online Post
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Clouds Online post and information about.... |
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HHV-6 |
Research 05-04-2000
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Treatment & Research, ImmuneSupport.com - Does Infection or Reactivation of HHV-6 Play a Role in the Development of Multiple Sclerosis (MS) and Chronic Fatigue Syndrome (CFS)?
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HHV-6 article 9/6/ 2000
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HHV-6 Infections: Observations Based on Published Medical Data - Major Findings and Implications
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HHV-6
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Treatment protocol for HHV-6.... |
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Humor |
Fibromyalgia Day
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Why is there NO Fibromyalgia Day ????
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Medical Tests |
Post on 20-20 Forum
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Discussion of Medical Tests that are being requested.
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Medicines |
Medicine Net
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General information |
Dr. Koop
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Dr. Koop's Drug Checker |
Botox
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Botox Effective For Relief Of Incapacitating Chronic Pain |
Alternative Medicine
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Craniosacral therapy manipulates the bones of the skull to treat a range of conditions |
SPIRIT-MIND-BODY
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SPIRIT-MIND-BODY CONNECTION Meridian Institute Virginia Beach, Virginia |
MedicinePlanet
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Health resource for international travelers before, after, and during a trip. |
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Mercury
Mercury |
Chronic Mercury Poisoning
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Stories and links to personal stories of Chronic Mercury poisoning |
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Multiple Sclerosis |
MS Drug May 9/25/2000
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Early treatment with an available interferon drug dramatically slows the onset of multiple sclerosis and in some cases appears to halt the disease,
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Research into ME/CFS 1998
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Dr Whiting Summarises Some of the Latest Research into ME/CFS |
MS Clinic
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Shepherd Center in Atlanta.....specializes in the treatment of MS |
MS...Is it better to know
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Multiple Sclerosis (bulletin board) discussion (Is it better to know or not to know) |
MS / Fibro ???
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Post on a MS board about the similarities between MS and Fibro |
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Mycoplasma / Antibiotic Treatment |
Mycoplasma is an ancient form of bacteria which has no
no cell walls. Researchers are now linking it to long term chronic illness, such as Fibro, CFS & Gulf War Syndrome. Treatment
includes the use of long term antibiotics 6 months to 1 year or longer, often beginning with about (3) weeks of IV therapy. |
Labs and Resources
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Mycoplasma (and other organisms) testing labs and resources - very good information !!!.
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Congressional Testimony.
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Testimony about Mycoplasma research needed and Nicholson's work. |
Dr. Nicholson information.
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Clouds post with info on Dr. Nicholson's Lab, costs for mycoplasma testing.
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Retro Viruses
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Gulf War (Brain stem encephalitis) & retro viruses |
Institute for Molecular Medicine
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Institute for Molecular Medicine -- antibiotic treatment... |
Thomas McPherson Brown M.D
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The life and work of Thomas McPherson Brown M.D
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Antibiotic Therapy
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Getting started on Antibiotic Therapy
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Mycoplasma / ABX
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Clouds Forum post. |
General Information page
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General information on Mycoplasma found in CFS, FMS, and GWS. |
Road Back
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Treatment protocol with Antibiotics... |
Post on Neuro Forum
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Discussion on antibiotics for treatment of Mycoplasma. |
Medical Test discussion
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Medical Test conversation on the 20/20 Board... |
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Organizations |
Chicago Institute
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Chicago
Institute of Neurosurgery and Neuroresearch (Gave me back my life !!!) |
Institute for Molecular Medicine
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Garth L. Nicolson,
Ph.D. - protocol for Mycoplasma testing - highly recommended for testing (I sent
a blood sample there for testing - mine was negative). Insurance often will
cover these tests, if not, it is approximately $250.00 for the labs.
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Immune Support
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Immune support - Chronic Fatigue Syndrome and Fibromyalgia Resource |
Co-Cure
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Co-Cure ("Cooperate and Communicate for a Cure") |
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Osteopathy |
What is Osteopathy ?
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Explanation of what Osteopathy really is and is not... |
D.O. facts:
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Explanation of Osteopathy |
Dogpile Links
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A listing of search results from Dogpile.... |
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Research |
Clinical Trials - Research
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Current information about clinical research studies, sponsored by the NIH.
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Autoimmune Disease
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Autoimmunity and Autoimmune Disease (Cornell University) |
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Salicylates |
Diet Information
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Site that will be quite useful in helping choose a diet that won't affect medication
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Foods Containing Salicylates
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foods containing salicylates
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Stealth Virus |
Research Center
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The Center for complex infectious disease |
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Support Groups & Bulletin Boards |
Clouds Online Support Group
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Online support group for people with FM or Chronic Pain. |
Neurology Web Forums
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The Neurology Webforums at Massachusetts General Hospital
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20-20 Forum
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20-20 Alumnai-Snowflakes
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E-groups
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Can be customized with all your favorite discussions (lots of groups)
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Health Boards
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Health Boards on all types of health problems
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Earth Angels
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Board for those who suffer
with chronic illness as well as a place for family and friends of
those who suffer
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Tips on coping |
Tips for coping
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Very good suggestions for help with Fibro |
Walker / with basket
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Walker / with basket and seat |
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Vaccines |
LETTER: 1/3/1997
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Dr. Bonnie S. Dunbar is trying to identify more patients with autoimmune disorders that might be related to the hepatitis B vaccine.
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