Current
Research on EMS:
It seems that hardly any research is being conducted
on EMS in 2007. You can find plenty of research on tryptophan, 5-HTP, other supplements,
and things like that - but next to nothing seems to be happening in research on just
EMS. I think it might be included in something at NIH involving other similar
diseases from time to time, but we don't hear much about it, whatever goes on. Any
research done in the areas of scleroderma, lupus, Fibromyalgia, Chronic Fatigue Syndrome,
and some other rheumatic diseases has the potential to help those with EMS, especially
with secondary illnesses such as Fibromyalgia and CFS and with the sclerodermatous
aspects of EMS. Research in diseases or conditions such as Restless Legs Syndrome,
Irritable Bowel Syndrome, and others have the potential to help us, also,
since so many of us have many other diagnoses like these in addition to EMS. So,
I think it's good to remind Congress and others of our existence and needs, but I
am not waiting breathlessly for a lot of research into EMS at this time - we are
too few in number and too rare a disease that has been written off, it seems, sadly.
We will probably be of historical interest, however, so that is why I encourage people
to sign up for things like The National Databank of Rheumatic Diseases. (see
the link later on this page)
NIH funding for EMS
The Online Petition for EMS Research and the
Paper Petition for EMS Research drives have been a great success. The signatures
were sent to NIAMS and various members of Congress. I'll keep you posted on
developments. However, letters from you to your representative and senators are always
a great help. Please consider writing a letter about appropriations for research
for NIH into rare diseases such as EMS and autoimmune diseases. Late January through
May is a great time to write a letter to your senators and representative,
although the early fall is good, also. To read the letter I received from NIAMS in
response to the petitions sent to them last September, please go to: NIAMS
LETTER
Other (to be posted as I learn of projects)
NIH Research Information
This site
tells about the clinical research into various diseases and areas going on at NIH.
It's a full and informative site.
Other (as available)
National Databank for Rheumatic
Diseases (Added June 2006)
If you have the ability to fill out an
online questionnaire twice a year (January and July) or to fill it out at home in
paper format and mail back to the Center, this is a very worthwhile research endeavor
for those with rheumatic diseases. Arthritis Research Center Foundation, Inc.
always accepts new patients who have rheumatic diseases. Your questionnaire data
goes into a registry that is available to scientists doing research on your disease;
if you have more than one rheumatic disease, as do I, you probably will want to just
choose one as the surveys are rather long. Rare diseases like Eosinophilia-Myalgia
Syndrome do not have a separate registry as yet and so go in with Rheumatoid Arthritis
(according to my understanding), but that is because not enough persons with EMS
participate. You are allowed to indicate in notes written at the end of the survey
whatever else you wish to say, and I always stress there that EMS is my disease;
in fact, that is the one I am registered for, but because of its rarity, I am included
with the RA persons. My husband participates in the Gout registry. You can list whatever
rheumatic disease you wish: Fibromyalgia, RA, Lupus, Osteoarthritis, Gout, and so
on. As I said, this is a worthwhile project for those who have the strength to do
it. You can stop at any time if you don't wish to continue, but to do the most good,
it's hoped that most who start will continue with it. I would love to see more
persons with EMS participate.
