I found a good discussion about XMRV and what it all means here:
There's a link in it to this Research Questionnaire The Whitmore Petersen Institute is doing on there, but in case you don't want to read through it all to get there here's the direct link:
Whitmore Petersen Institute Our Research Questionnaire.
At the end they ask if you'd be willing to give a blood sample, so I think this is SUPER important. I think we've all wished the power to find a successful treatment or cure was in our hands, so maybe this is an opportunity to help!
Showing posts with label research. Show all posts
Showing posts with label research. Show all posts
Saturday, January 2, 2010
Wednesday, December 23, 2009
Phoenix Rising Researcher of the Year
http://aboutmecfs.org/Rsrch/ResearcherYear08.aspx
This was my favorite part of the article:
"Three of the six teams funded by the CFIDS Association smashed the normal boundaries seen in academia and research. The group studying inflammation and metabolism in the brain CFIDS Association Research Initiative is now collaborating with the group examining autonomic nervous system problems in the body. Then these two groups are handing off their data to a third group, which may have the most difficult job of all; analyzing both groups data together to create (hopefully) a model of inflammation/ autonomic nervous system/brain dysfunction in ME/CFS."
This was my favorite part of the article:
"Three of the six teams funded by the CFIDS Association smashed the normal boundaries seen in academia and research. The group studying inflammation and metabolism in the brain CFIDS Association Research Initiative is now collaborating with the group examining autonomic nervous system problems in the body. Then these two groups are handing off their data to a third group, which may have the most difficult job of all; analyzing both groups data together to create (hopefully) a model of inflammation/ autonomic nervous system/brain dysfunction in ME/CFS."
Sunday, January 4, 2009
Endometriosis, FM, CFS, & Other Autoimmune Illnesses
Been meaning to post it for weeks, the tab's been open in my browser so long I can't take it anymore, lol, so I hope you don't feel bombarded:
US researchers find endometriosis associated with wide range of diseases
I thought I had Endometriosis. At this point, I'm not sure because my current doctor says Enteroviruses attack the Ovaries & Testes as well, pulled up the report from the surgery I had to have some of it removed and read it to me, and it actually seemed like it they weren't positive what it was.
On the other hand, no one seems to be quite sure how Endometriosis happens or what causes it...so it seems to me it's possible it COULD be Endometriosis, and it may just turn out that Endometriosis is actually caused by an infection...
I do know for sure that it does seem to respond to hormones, becoming way better when I was taking natural progesterone, and way worse when I was taking DHEA...
US researchers find endometriosis associated with wide range of diseases
I thought I had Endometriosis. At this point, I'm not sure because my current doctor says Enteroviruses attack the Ovaries & Testes as well, pulled up the report from the surgery I had to have some of it removed and read it to me, and it actually seemed like it they weren't positive what it was.
On the other hand, no one seems to be quite sure how Endometriosis happens or what causes it...so it seems to me it's possible it COULD be Endometriosis, and it may just turn out that Endometriosis is actually caused by an infection...
I do know for sure that it does seem to respond to hormones, becoming way better when I was taking natural progesterone, and way worse when I was taking DHEA...
Tuesday, December 9, 2008
Milnacipran Shows Success in Treating FM?
Milnacipran is the name of a new drug being tested for Fibromyalgia. It is actually an anti-depressant, of the SSNRI (Selective Seretonin Norepinephrine Reuptake Inhibitor) type that has been available in Austria for a decade.
According to the study at the link below, it has shown success in treating symptoms of FM, as well as Lupus.
After reading the study however, it occurs to me that this is just another Cymbalta. This may sound a little jaded, but it seems to me, that the drug companies are just looking for medications to throw at FM,so that they can make money off the millions of people who suffer from it. This isn't a cure...it may help some,especially those suffering with depression as well as FM, but not all, just as Cymbalta did. (Note that Cymbalta was recently NOT approved for treating FM in Europe.) All it does is tinker with a couple of neurotransmitters, and although these have been found to be off in FM, they are not the cause, just two more of the myriad of symptoms.
Sure, it might help people with FM, improving quality of life by improving mood and outlook, and having a slight effect on pain, but we have plenty of drugs like that already; we don't call THOSE "FM Drugs"... It just makes me wonder if this title should be given to any drug that doesn't help everyone, or nearly everyone who suffers from this disease. (Insulin wouldn't be considered a diabetes drug if it only helped some people who had diabetes, right?) To be precise, it does say "for the Management of Fibromyalgia" but no doubt it will be touted as a drug for treating FM. I can see the commercials now...
If it helps some people, that's great, but I kind of wish they would focus more on finding the cause, or at the very least a surefire diagnostic test.
Just my two cents.
Here's a link to the study: Positive-Results-of-Phase-III-Study-of-Milnacipran-for-the-Management-of-Fibromyalgia-3573-1/
*Correction: I actually got the Lupus link from this site, under Experimental Uses:http://en.wikipedia.org/wiki/Milnacipran
According to the study at the link below, it has shown success in treating symptoms of FM, as well as Lupus.
After reading the study however, it occurs to me that this is just another Cymbalta. This may sound a little jaded, but it seems to me, that the drug companies are just looking for medications to throw at FM,so that they can make money off the millions of people who suffer from it. This isn't a cure...it may help some,especially those suffering with depression as well as FM, but not all, just as Cymbalta did. (Note that Cymbalta was recently NOT approved for treating FM in Europe.) All it does is tinker with a couple of neurotransmitters, and although these have been found to be off in FM, they are not the cause, just two more of the myriad of symptoms.
Sure, it might help people with FM, improving quality of life by improving mood and outlook, and having a slight effect on pain, but we have plenty of drugs like that already; we don't call THOSE "FM Drugs"... It just makes me wonder if this title should be given to any drug that doesn't help everyone, or nearly everyone who suffers from this disease. (Insulin wouldn't be considered a diabetes drug if it only helped some people who had diabetes, right?) To be precise, it does say "for the Management of Fibromyalgia" but no doubt it will be touted as a drug for treating FM. I can see the commercials now...
If it helps some people, that's great, but I kind of wish they would focus more on finding the cause, or at the very least a surefire diagnostic test.
Just my two cents.
Here's a link to the study: Positive-Results-of-Phase-III-Study-of-Milnacipran-for-the-Management-of-Fibromyalgia-3573-1/
*Correction: I actually got the Lupus link from this site, under Experimental Uses:http://en.wikipedia.org/wiki/Milnacipran
Saturday, December 6, 2008
New Issue of Fibromyalgia Aware Magazine out
This really is an impressive publication. I had never gotten a chance to have it until I got some cheap at a support group this year, but now that I've read it, and see how see the quality of the research and articles in it, and how well it addresses the reality of living with FM, I will definitely be saving the few buck for it. It's my understanding they sell them at CVS stores. Check it out this is some info on the latest issue:
from the FMAware.org Site:
The National Fibromyalgia Association has released the newest issue of Fibromyalgia AWARE, the first and only consumer magazine dedicated to the disorder. The issue (Winter 2008 Vol. 18) includes a special section on fibro-friendly exercises.
Featured stories in Vol. 18 include:
* Effective Skills to Relax the Body
* Guidelines for Stretching
* Gentle Body Movements
* Growth Hormones & FM
* Lyme Disease and FM
* Finding a Support Group that’s Right for You
* Research Explores Causes of FM
* Dealing with FM-Related Suicide Thoughts
* Choosing the Right Shoe
* And more
See full text here: http://www.fmaware.org/site/News2?page=NewsArticle&id=8073
from the FMAware.org Site:
The National Fibromyalgia Association has released the newest issue of Fibromyalgia AWARE, the first and only consumer magazine dedicated to the disorder. The issue (Winter 2008 Vol. 18) includes a special section on fibro-friendly exercises.
Featured stories in Vol. 18 include:
* Effective Skills to Relax the Body
* Guidelines for Stretching
* Gentle Body Movements
* Growth Hormones & FM
* Lyme Disease and FM
* Finding a Support Group that’s Right for You
* Research Explores Causes of FM
* Dealing with FM-Related Suicide Thoughts
* Choosing the Right Shoe
* And more
See full text here: http://www.fmaware.org/site/News2?page=NewsArticle&id=8073
Wednesday, December 3, 2008
ProHealth Sponsoring Chat with CFIDS Association Director
Join a Live Chat with ME/CFS Research Expert Dr. Suzanne Vernon
**News of the Research program actually broke today: Read it Here
(Personally, I was too tired to make much sense of it all, except to get that they will be looking for Biomarkers to more accurately be able to diagnose CFS. Not the cure, but at least proof for the doubters still out there, and entities like the Social Security Administration.)
Also, you can take advantage of this deal if you see a supplement or product on their site if you like:
ProHealth invites you to join a Live Q&A with Suzanne Vernon, PhD - Scientific Director of the CFIDS Association of America, "Working to Translate Science to a Cure
for CFS."
The Time and Place:
Friday, December 5th, at 3 PM Pacific Time in the ProHealth.com Community Chat Rooms.
The Subjects:
Breaking news about the exciting & unprecedented ME/CFS research program Dr. Vernon has selected for CFIDS Association funding in 2009. Plus almost anything you'd like to ask about the "state of the science" current & future, in terms of CFS causes, diagnosis, and treatment. read more
**News of the Research program actually broke today: Read it Here
(Personally, I was too tired to make much sense of it all, except to get that they will be looking for Biomarkers to more accurately be able to diagnose CFS. Not the cure, but at least proof for the doubters still out there, and entities like the Social Security Administration.)
Also, you can take advantage of this deal if you see a supplement or product on their site if you like:
New Research - alpha1-Antitrypsin and Fibromyalgia
Some of the most interesting research I've seen in awhile...
A little complicated to read, especially w/Fog, but some of the key interesting points are that they think there's a genetic disorder causing problems with this protein; that they've treated people with this protein; and that they've found a little fibrous nodules in the muscle, which I know many of us have to different degrees.
Summary:
Here is the full article, from the Fibromyalgia Aware Magazine May-July 2008 issue.
http://www.fmaware.org/site/DocServer/ALPHA1-AT.pdf?docID=1261
and a Google Books link to the research as well:
I knew I wanted to visit Spain!
A little complicated to read, especially w/Fog, but some of the key interesting points are that they think there's a genetic disorder causing problems with this protein; that they've treated people with this protein; and that they've found a little fibrous nodules in the muscle, which I know many of us have to different degrees.
Summary:
Alpha-1 Antitrypsin Deficiency
FMOnline vol. 8, no. 9
A recent study published in the Journal of Musculoskeletal Pain looked at deficiency in the protein alpha-1 antitrypsin in people with fibromyalgia in 10 countries around the world. Severe deficiency was found in all 10 countries, with very high frequencies in Denmark and Sweden. Patients from the United States showed this deficiency at intermediate frequencies: one in 11 people, or 478,681 people.
The lead author on this study is Ignacio Blanco, MD, of the Department of Internal Medicine at the Hospital Valle del Nalón in Langreo, Spain. Dr. Blanco wrote a piece on alpha-1 antitrypsin and fibromyalgia for vol. 16 of Fibromyalgia AWARE.
--------------------------------------------------------------------------------------------
This article was originally published in FMOnline. This free online newsletter is only available to registered members. Click here to register!
Here is the full article, from the Fibromyalgia Aware Magazine May-July 2008 issue.
http://www.fmaware.org/site/DocServer/ALPHA1-AT.pdf?docID=1261
and a Google Books link to the research as well:
New Research on Fibromyalgia
I knew I wanted to visit Spain!
Subscribe to:
Posts (Atom)