FMS News, Hot Off the Press

Sunday, February 04, 2007

CFS gets a new name

From an ImmuneSupport.com newsletter:  “A group of noted CFS researchers and clinicians met January 12 in Florida to discuss whether ‘Chronic Fatigue Syndrome’ was an appropriate name for the disease, and to suggest an alternative name if necessary.  Committee members agreed that CFS downplays the severity of the disease and is hurtful to patients, and discussion focused on alternative names.

The majority of attention was spent discussing ‘ME’ - the name first used to describe the illness in an editorial published in The Lancet in 1956 by Sir Donald Acheson, MD. ‘ME’ has been used in many countries, including Great Britain.  ‘ME’ has historically been used to describe ‘Myalgic Encephalomyelitis’ (nervous system inflammation involving muscle pain) - a term that does not accurately describe the disease process in all patients. Committee members preferred ‘Myalgic Encephalopathy’ (nervous system pathology with associated muscle pain), which is also abbreviated ‘ME’. This satisfied the researchers that this form of the term ‘ME’ is diagnostically accurate.

The group recognized that dropping CFS completely from a new name could cause problems with disability and medical insurance claims, and recommended that ‘CFS’ should accompany any new name, at least for a period of time. The researchers expressed their belief that the term ‘ME/CFS’ is diagnostically accurate and, unlike CFS, is not pejorative to patients. It was also noted that this move is consistent with events occurring in different countries, such as Canada, where ‘CFS’ was recently changed to ‘ME/CFS’.”

I think this is definitely a step in the right direction, even if something simple like a name change seems a bit silly and trivial.  Most healthy people think they understand the “fatigue” element of “chronic fatigue syndrome”, which makes the condition so maligned and misunderstood.  A name like ‘Myalgic Encephalopathy’ commands a lot more respect.

Posted by Leigh-Ann on 02/04 at 03:10 AM
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Friday, January 26, 2007

But does HGH work for fibromyalgia?

Here’s an article about a recent study which seems to show that HGH isn’t particular effective as being a fountain of youth for healthy adults.  However, the study didn’t use HGH to treat any less-than-healthy people, so there’s still hope it may be a useful aid in treating fibromyalgia:  Growth hormone not anti-aging solution

Posted by Leigh-Ann on 01/26 at 12:29 AM
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Tuesday, January 16, 2007

The co-founder of Petsmart has CFS

I go around assuming that successful people must be healthy people, then I’m proven wrong by this article: Chronic fatigue drug in trial stage.  The article is primarily about Michael Manson, the co-founder of PetSmart, who’s suffered with CFS for almost 20 years, as has his business partner.  Who knew?!  Manson was part of the recent trial that tested Valcyte on CFS sufferers, and he feels just about cured.  The whole thing is very exciting, and I’d love to get in on a trial in my area.  I checked out the price of the Valcyte medication and six months worth would cost over $5000, so I’d be happy to exchange their meds for my voluntary guinea pig-ness.

Posted by Leigh-Ann on 01/16 at 03:54 AM
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Sunday, January 14, 2007

FMS and CFS news roundup for January

I’ve got a mailbox full of fascinating news stories about CFS and FMS treatments, and while I’d love to post them all, it would take forever!  Instead, I’ll post links to the most interesting ones here, and you can check out whatever interests you.  Happy reading!

Posted by Leigh-Ann on 01/14 at 07:10 PM
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Herpes drug may help with chronic fatigue

This story is pretty exciting.  I’ve never been diagnosed with CFS officially, but I think it’s pretty much tied in with FMS.

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STANFORD, Calif., Jan. 9 (UPI) A U.S. study suggests valganciclovir, a drug often used in treating diseases caused by human herpes viruses, may help with chronic fatigue syndrome.  The researchers said they treated 25 patients during the last three years and 21 have responded with significant improvement that was sustained even after going off the medication at the end of the treatment regimen, which usually lasts six months.  The first patient has now been off the drug for almost three years and has had no relapses, according to Dr. Jose Montoya and postdoctoral scholar Andreas Kogelnik of the Stanford University School of Medicine.

Valganciclovir is normally used against diseases caused by viruses in the herpes family, including cytomegalovirus, Epstein-Barr virus and human herpes virus-6.  The findings have been published in the Journal of Clinical Virology and will be presented at the biannual meeting of the International Association for chronic fatigue syndrome in Fort Lauderdale, Fla.

Copyright 2007 by United Press International

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This story is related to the one above, but mentions the possibility of clinical trials.  Keep an eye on places like CenterWatch.com and ClinicalTrials.com and they should list when trials start recruiting.
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Medical School researchers have identified a promising drug that may prove useful in relieving chronic fatigue syndrome.

Associate Prof. Jose Montoya and postdoctoral student Andreas Kogelnik have seen 21 of the 25 patients they have treated over the past three years with drug valganciclovir improve significantly. Even better, the improvement has been sustained after patients cycled off the drug, an antiviral often used in treating diseases like herpes.

“This study is small and preliminary, but potentially very important,” said Anthony Komaroff, a Harvard Medical School Professor. “If a randomized trial confirmed the value of this therapy for patients like the ones studied here, it would be an important landmark in the treatment of this illness.”

Roche Pharmaceutical has granted Montoya $1.3 million to continue research into the drug starting this quarter. Chronic fatigue syndrome affects one million people worldwide.

The Stanford Daily

Posted by Leigh-Ann on 01/14 at 06:48 PM
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Saturday, December 30, 2006

FMS and CFS Conference

The 8th International Association for Chronic Fatigue Syndrome Conference will be held in a couple of weeks in Florida, and it will concentrate on issues related to CFS and FMS.  There’s both a patient conference and a clinical conference—I wish I had the opportunity to attend the former.  Being in a huge group of CFS/FMS sufferers might remind me that I’m not as badly off as many others, and it would also be a good chance to network about doctors and treatments.  If you’re in the area and want information about attending, check out 8th International IACFS Conference, January 10 - 12, 2007.

Posted by Leigh-Ann on 12/30 at 02:35 AM
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Thursday, November 30, 2006

The Pain from Fibromyalgia Is Real, Researchers Say

Here’s an interesting article which was released as a press release today.  It’s a summary of a study from Current Pain and Headache Reports, Dec. 2006, pp. 403-7.  Bet you didn’t know there was such a periodical, huh?!

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Fibromyalgia often has been misdiagnosed as arthritis or even a psychological issue. Increasingly, though, the scientific knowledge about fibromyalgia is growing, and a new paper from the University of Michigan Health System says there are “overwhelming data” that the condition is real, is characterized by a lower pain threshold and is associated with genetic factors that can make some people more likely to develop fibromyalgia.

The review paper, in the December issue of the journal Current Pain and Headache Reports, cites recent studies involving pain, genetics, brain activity and more. The paper’s authors hope these findings will lead to a better understanding and acceptance of fibromyalgia and related conditions.

“It is time for us to move past the rhetoric about whether these conditions are real, and take these patients seriously as we endeavor to learn more about the causes and most effective treatments for these disorders,” says Richard E. Harris, Ph.D., research investigator in the Division of Rheumatology at the U-M Medical School’s Department of Internal Medicine and a researcher at the U-M Health System’s Chronic Pain and Fatigue Research Center.

A growing amount of research related to the neurobiology of this condition supports the notion that the pain of fibromyalgia is real. Studies at U-M and elsewhere using two neuroimaging techniques – functional magnetic resonance imaging (fMRI) and single photon emission computed tomography (SPECT) – indicate there is a difference between patients with and without fibromyalgia.

“In people without pain, these structures encode pain sensations normally. In people with fibromyalgia, the neural activity increased,” says Daniel J. Clauw, M.D., director of the U-M Chronic Pain and Fatigue Research Center and professor of rheumatology at the U-M Medical School, and an author of the new paper. “These studies indicate that fibromyalgia patients have abnormalities within their central brain structures.”

In a 2003 paper in the journal Science, a U-M team reported that a small variation in the gene that encodes the enzyme called catechol-O-methyl transferase, or COMT, made a significant difference in the pain tolerance, and pain-related emotions and feelings, of healthy volunteers. Researchers also have found that individual mutations in the COMT gene are related to the future development of temporomandibular joint disorder, also known as TMD or TMJ, a condition related to fibromyalgia.

Together, these studies about COMT and numerous studies with animals suggest that pain sensitivity is determined at least in part by a person’s genetic makeup, Clauw says.

The authors note that there are some legitimate areas of debate regarding fibromyalgia, including disagreements about how precisely it should be defined and whether people with the condition deserve compensation. But none of those disagreements should detract from the acceptance of it as a condition causing real pain, they say.

Posted by Leigh-Ann on 11/30 at 03:15 AM
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Monday, November 27, 2006

Finally, something I can send to my mother

Nov. 24 (UPI)—U.S. health officials have initiated a campaign to erase the perception people with chronic fatigue syndrome are malingerers.  The national Centers for Disease Control and Prevention in Atlanta opened its information campaign this month to help educate patients and doctors that chronic fatigue syndrome is a mysterious but serious disease sometimes triggered by a viral infection with other unknown factors.

Nancy Klimas, a University of Miami School of Medicine clinician-researcher visiting the CDC during its campaign kickoff, said chronic fatigue syndrome is poorly named, based on 20 years of research. “If it were called chronic neuroinflammatory disease, then people would get it,” Klimas said. “Up until now nobody’s been willing to change the name, but now there’s proof” that inflammation occurs in the brain.

The CDC estimates CFS affects at least 1 million people in the United States. Women are affected at about four times the rate as men, and non-white women are affected at a rate greater than white women. Symptoms include exhaustion, joint pain, sleep problems, impaired memory and inability to concentrate.

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In fairness to my mother, she’s never accused me of being lazy… I’m the one who feels I’m lazy, and I worry she might think it.  I sometimes wonder if things go unsaid.

Posted by Leigh-Ann on 11/27 at 02:45 AM
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The feds want to give you something for free

The Federal Government (via the Federal Citizen Information Center), offers a free pamphlet called “Difficult Diagnoses”, for people who have aches and pains yet don’t have something simple and ordinary, like arthritis.  This booklet discusses other possible diagnoses, including fibromyalgia and lupus, and the booklet might be a good way to open a dialogue with your doctor if you’re concerned that your aches and pains “just aren’t right”.  You can order free copies of the pamphlet here: Difficult Diagnoses.

Posted by Leigh-Ann on 11/27 at 02:34 AM
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Using Lyrica to fight FMS pain

Here’s a fairly new article from WebMD:  Lyrica May Relieve Fibromyalgia Pain.  To summarize, The seizure drug Lyrica may offer extended pain relief for people with fibromyalgia.  That’s according to new research presented at the 2006 annual meeting of the American College of Rheumatology (click the link to read the entire article if you want to know more).  Interestingly, we think Flippy has FMS, and when she was given Lyrica as treatment for her back pain (pre-surgery), she found that Lyrica made a huge improvement in her overall comfort level and sense of well-being.  Unfortunately, her insurance company refused to cover Lyrica for pain treatment, and it was so expensive, we just couldn’t afford to keep her on it for longer than about six weeks.  She also seemed to develop a tolerance to it quite quickly, so taking it would have become even more expensive over time.  Lyrica is probably most-easily compared to Neurontin, yet it’s also a lot like the SSRI/SNRI medications, so it can reduce depression but also should be tapered and not quit “cold turkey”.  In any case, it’s nice to know that someone is thinking of us at their conventions and during their studies!

Posted by Leigh-Ann on 11/27 at 02:24 AM
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