Wednesday November 11, 2009
The XMRV Research Series
The discovery of a possible retroviral connection to chronic fatigue syndrome (CFS or ME/CFS) isn't just stirring up the ME/CFS community -- it's getting the attention of the entire scientific community.
That's quite a feat, considering how ME/CFS research has languished due to lack of funding and interest. Now, however, XMRV is changing things.
- 75 XMRV researchers are getting together in Chicago this week to share information.
- Pharmaceutical companies are asking for samples of XMRV so they can see if their existing anti-retrovirals (HIV drugs) can be adapted to treat ME/CFS.
- The Whittemore-Peterson Institute, which conducted the XMRV research, is anticipating trials of a vaccine sometime next year.
While all XMRV research is in its earliest stages, not only does it look like it could be tied to aggressive prostate cancer and ME/CFS, studies suggest it could be infecting about 4% of the public and that it's transmitted through bodily fluids. That adds a possible public health concern, and that ball is apparently already rolling.
While this is far from the first virus to be suspected as a major cause of ME/CFS, it's certainly generating a lot more scientific interest than earlier discoveries have. That interest could help speed up the processes that have been dragging on for decades, toward getting better diagnostics, better treatments, and possibly even a vaccine to prevent future cases.
There's been a lot about XMRV in the media, and here are a couple of excellent, informative articles I've come across:
Also See: The XMRV Discovery Series index
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Tuesday November 10, 2009
Fibromyalgia isn't typically what comes to mind when you talk about women's health, but about 96% of us who have it are women. On top of that, researchers are learning more about gender differences and pain in general, which point to far more pain problems in women than in men.
The group HealthyWomen, which focuses on many aspects of women's health, is now working to raise awareness of fibromyalgia and chronic pain in women, in the hopes of getting more women properly diagnosed and treated. It has launched a campaign called, "She Said, He Said: Understanding Gender and Pain."
I was able recently to speak with Dr. Leslie Arnold, a psychiatrist specializing in pain-related issues who's involved with HealthyWomen. (Please note: Dr. Arnold does not believe that fibromyalgia is psychologically based or that psychotherapy is a front-line treatment for fibromyalgia.) According to studies, Dr. Arnold says, women have more pain in general, and that difference seems to stem, at least in part, from our hormones.
"If you look at little boys and girls, the prevalence of pain is the same," she says. That prevalence, however, changes at puberty in ways doctors are still trying to understand.
In clinical studies, women show a greater sensitivity to pain than men do -- we have a lower pain threshold. Women typically believe they deal with pain better than men, and while that's not true physiologically because our bodies react more strongly, Dr. Arnold believes that women learn to cope and function better with pain, because it's a greater part of our lives.
Doctors are typically not well trained in evaluating or treating pain. Dr. Arnold says they tend to view all pain as if it were acute pain, such as that from an injury. They need to have a better understanding of chronic pain. "It's a disease, it's not a symptom," she says.
A national survey shows certain gender differences when it comes to perceptions of chronic pain:
- Three in 4 women (76%) believe women have a higher tolerance for pain, while just 1 in 3 men (32%) think women have a higher tolerance.
- Nearly half of women (46%) think men are taken more seriously when they visit health care providers about chronic pain.
- Nearly twice as many women than men (59% vs 36%) feel they are considered a "complainer" because of their chronic pain.
Those are some discouraging perceptions, but Dr. Arnold believes fibromyalgia acceptance is gaining ground. "I've been working in this area since the 1990s and I feel in the last 3 years the level of acceptance has really improved," she says.
You can learn more about HealthyWomen and the new campaign, visit the website: HealthyWomen.org.
And because I hate to leave out the men among us, here's a link to a site devoted to you: menwithfibro.com. It's got information and a forum where, for once, you won't be grossly out numbered by the women!
Do you think women cope better with pain than men? Are men taken more seriously when they see a doctor about pain? Have you been labeled a "whiner"? Share your experiences by leaving a comment below!
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Monday November 9, 2009
I think we all know a few people who've been hit with the flu this year, both the seasonal one and H1N1 (swine flu). It's kind of a no brainer that the flu would hit those of us with fibromyalgia and chronic fatigue syndrome harder than it does most people -- what doesn't?
Treating the Flu
If you suspect you have the flu, get to the doctor early on and talk to him or her about the drugs Tamiflu (oseltamivir) and Relenza (zanamivir). They're antiviral medications that can help cut the severity and length of the flu.
These drugs are fairly safe to use in combination with other drugs, so you shouldn't have to worry about interactions. However, they do come with a risk of side effects, which can include some flu-like symptoms, anxiety, breathing problems, hallucinations, and allergic reactions.
For treating flu symptoms, be sure to talk to your doctor/pharmacist about what products are safe with the medications you're on. Over-the-counter flu meds frequently contain anti-inflammatories or acetaminophen. To avoid doubling up and risking an overdose, make sure to read labels carefully. I prefer single-ingredient drugs -- it's easier to avoid taking too much of anything, and I'm less like to have a bad reaction.
On top of that, it's back to the basics -- rest, fluids, and generally taking care of yourself. Personally, I try to boost my immune system with supplements and antioxidants.
What to Expect
While you're sick with the flu, it's likely that you'll have a symptom flare. Expect to be especially tired, especially achy, especially miserable. It might be hard to tell when the flu starts to taper off, especially if you have a lot of flu-like symptoms generally.
For all of us, but even more so for those with chronic fatigue syndrome, recovering from the flu can take a long time. Do everything you possibly can to get rest and help your body fight the infection.
More Flu Resources
My About.com colleague Kristina Duda, Guide to Cold & Flu, has a ton of great information about treating and preventing the flu. Here are some of her articles that could answer a lot of your questions:
What flu experiences have you had? What has helped? What hasn't? Help us all learn by leaving a comment below!
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Saturday November 7, 2009
I recently came across a poll on the impact fibromyalgia (FMS) has on marriage, and I asked if I could share the results here (thanks, Ray!). It's not a scientific poll, but it shows some interesting trends, so I wanted to ask some of the same questions here, and also broaden it to include chronic fatigue syndrome (CFS or ME/CFS).
Of the participants, 96% were women, and the vast majority were under 40 both at the time of diagnosis and when the poll was taken. Just over 60% said they were either married or in a long-term committed relationship when their symptoms appeared. When asked if the symptoms and limitations changed their relationship, here's what they said:
- For the better: 16.7%
- Not much change: 16.7%
- Caused a strain: 38.9%
- Caused the relationship to end: 27.8%
It's certainly not surprising that a major, life-changing illness can damage a relationship, but it's especially disturbing to me that more than a quarter of respondents said it ended their relationship. Also, it caused a strain in more than double the relationships it changed for the better. It's sad that 65% of these people have had to deal with relationship problems and/or divorce on top of being sick. I have to wonder if a more widely accepted diagnosis makes a difference in how well our spouses, as a whole, would be able to accept the changes forced upon them.
What has your illness done to your relationship(s)? Did the length of time you'd been together make a difference? Share your stories below, and take the polls!
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Photo © Jeffrey Hamilton/Getty Images
