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Safety of Hydrocortisone for CFS Patients Researchers at the U.S. NIH have announced that low-dose hydrocortisone treatment has shown promise but is probably not viable in a clinical setting due to the significant adrenal suppression it causes. Check the links below for more information.
Journal of the American Medical Association (Link no longer active)
National Institutes of Health - CFS FAQ
Research Summary -- (Link no longer active)
More Information - SAFETY OF HYDROCORTISONE AS CFS TREATMENT QUESTIONED
Midodrine Can Help Patients With Orthostatic
Hypotension
News Bulletin from the Co-Cure List
ROCHESTER, MN -- Sept. 16, 1998 -- Mayo Clinic researchers have determined that the drug midodrine can safely raise the blood pressure of patients suffering from neurogenic orthostatic hypotension and can help them to lead a more normal life.
The press release can be read at: http://www.mayo.edu/comm/mcr/news/news_396.html (Link no longer active)
More information available at: http://www.pslgroup.com/dg/b1076.htm
The Writers Connection The Writers Connection is devoted to helping Writers to get Published on the Web, and to assist Publishers in locating the kind of Writers, and Articles, which they need to add content to their e-zines or to their websites. Visit their website:
Also visit Fog Clutter, a zine for writers with CFIDS/FMS!
We are $35.00 into the red ink
As of August 18, 1998, due to copying, postage, supplies, and phone
charges, we are $35.00 in the hole. Please contribute as you are able.
We now have a membership of 250 - about 70 new members since January, 1998.
It takes anywhere from $1.70 to $3.00 to mail our group's info pak, newsletter,
and various article related to the particular symptoms and concerns of
each new member.
CDC cancels study of CFIDS in children and adolescents
On August 7, 1998 the CDC ordered all work stopped on a study of CFIDS
in youth due to a lack of funds. This is outrageous. Congress first urged
the CDC to investigate CFIDS in youth in 1996. Without immediate action
the study will languish until the year 2000.
Dr. Cheney's Treatment Protocol Available
Carol Sieverling is a patient of Dr. Cheney, who is recognized as one
of the country's top CFIDS specialists and has seen over 3000 patients
from 48 states and 15 countries. She is often asked what she is taking
or doing. She says, "I have always shared such information with some reservations,
not knowing what was part of a general treatment program for anyone diagnosed
with CFIDS and what was specific to my particular symptoms."
During her last visit with Dr. Cheney, in April 1998, she asked hi what he considered to be a basic treatment approach for anyone with CFIDS. She has taken his answers, along with some of his writings, and came up with a four page protocol that includes recommendations concerning diet, exercise, prescription drugs and supplements, along with explanations for each topic or item. Included are two research abstracts that you can share with your doctor if you want to get a prescription for the high dose B-12 injections. Come to a meeting to get a copy or contact Carol by phone (817) 283-1115 or email and she you send the information to you.
We Changed Our Name!
At the suggestion of several members, and after checking with an informal
advisory committee (previous leaders Dave Lovelace with Bob and Jennifer
Fix), if was decided that a name change was appropriate. Why? "DFW" reflects
where our members come from and who is welcome.
We currently have 226 members from 34 different cities within the metroplex and 12 cities outside the metroplex. The inclusion of FM reflects the overlapping nature of the two syndromes, the fact that a great many members have both, and lets those with FM know that they are welcome and included. We have placed the illnesses first so that those looking for us in the alphabetical listings of large newspapers can more readily find and recognize us.
Oprah does a show that includes CFIDS
On July 29, 1998 Oprah did a show on difficult to diagnose illnesses,
including CFIDS. A mother and daughter from Atlanta with CFIDS were featured.
CFS patient Wilhemina Jenkins recounted how a mysterious ailment destroyed
her career as a physicist and disrupted her ability to take care of herself.
The seriousness of CFS was also endorsed by that show's guest co-host,
Dr. Nancy Snyderman of ABC News . A transcript can be obtained by calling
1-800-700-8398. It was a good presentation of CFIDS, although we felt the
list of symptoms displayed left something to be desired.
QEEG Brainmapping may be available in Dallas soon
In December of 1993 Dr. Myra Preston received a federal patent on her
QEEG (Quantified ElectroEncephaloGraph) test, a procedure that diagnoses
CFS and documents specific cognitive deficits in patient's brains. Dr.
Cheney sends his patients who desire objective cognitive tests, especially
for disability applications, to her office in Charlotte. Information
on the test can be found in the Winter 1996 and Spring 1994 issues of the
CFIDS
Chronicle.
Dr. Preston's office is in a serious conversation with a Dallas doctor who is interested in hosting a satellite site for Dr. Preston's diagnostic test and neurotherapy treatment program. Look more for information soon.
NPR's "The Diane Rehm Show" features CFIDS
On July 13, 1998 Diane Rehm did a show on CFIDS. The "Diane Rehm Show,
" featured on U.S. National Public Radio, is heard by hundreds of thousands
of people in the USA and it is listened to by many government decision-makers
in Washington, DC, where the broadcast originates. Her guests included
Dr. Stephen Strauss of the NIH, Dr. William Reeves of the CDC, Dr. Paul
Levine of George Washington University, Dr. Marsha Wallade and two patients.
A cassette tape of the show can also be ordered by calling 202-885-1200,
pressing "0", and requesting the July 13th show on CFIDS.
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