NEWSBRIEF: Researchers in Sweden are launching a study to examine the link between XMRV and chronic fatigue syndrome (CFS or ME/CFS). Results are expected to be out in the spring or summer of 2010.

XMRV is a retrovirus that researchers recently linked to a substantial number of ME/CFS test subjects in the U.S. Further research is needed to validate or refute this finding.

However, it may be able to draw conclusions from 2 studies done in different areas of the world, because the prevalence of infectious agents can vary drastically from one region to the next. That difference should be reflected both in the control group and in the test group.

More information on the Swedish study: Independent confirmation of the relationship between XMRV and ME/CFS in Sweden.

Also See: The XMRV Discovery Series index

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Research Brief: An international research team says it has discovered a secondary sensory system that may be involved in poorly understood pain conditions such as fibromyalgia and migraine.

The study, published in the journal Pain, looks at sensation in people who genetically lack the ability to feel pain but can sense things like temperature and texture. In their skin, researchers found none of the regular nerves that most of us have in our skin, but fully intact nerves on their blood vessels and sweat glands. Previously, experts believed these nerves only dealt with blood flow and sweating. However, this study uncovered the possibility that these nerves may transmit certain sensations, at least in some people.

The researchers now speculate that this second sensory system may play a role in conditions involving hypersensitivity to pain. More research will need to examine whether these nerves are somehow extra sensitive in fibromyalgia. People with fibromyalgia have abnormal pain reactions, including hyperalgesia and allodynia. Some people with the condition may also have low blood volume and excess sweating.

Also See: 7 Types of Fibromyalgia Pain

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A recent Dr. Oz show featured the XMRV research and possible ties to chronic fatigue syndrome (CFS or ME/CFS). It was about a 12 minute segment that had some good information, but I did find some aspects a bit troubling.

The Good Points

• Dr. Oz clearly presents himself as a believer in ME/CFS.
• The guests (Dr. Donnica Moore and a woman with ME/CFS) came across as credible and knowledgeable.
• The description of symptoms, although brief, gave an accurate depiction of what ME/CFS is like.
• Video animation of a retrovirus entering the DNA was a great way to help people understand XMRV.
• The PR value is probably incalculable. When the woman with ME/CFS described how a doctor dismissed the very suggestion of ME/CFS and sent her to a psychiatrist, audience members gasped and shook their heads. They got it.
• Internet searches for XMRV were off the charts the day of and day after the show, meaning more people are learning about the latest research.

The Bad Points

As a former TV news producer, I have a very critical eye when it comes to accuracy, and I understand how powerful a televised message can be. It was this side of me that raised the most red flags. The ME/CFS Guide part of me was concerned about how a couple of points could be taken as well.

• The show opened with scare tactics, which TV folks use a lot to get people emotionally invested in a topic. The problem is, once fear is raised, people tend to reach the worst possible conclusions and react with their hearts instead of their heads -- we don't want panic over ME/CFS and XMRV.
• At the beginning of the show, Dr. Oz asked the question, "Is a retrovirus what's making you exhausted?" Then he said we'd learn the symptoms. It sounded like he was saying we'd learn the symptoms of XMRV, and to date we know of none. I don't believe he differentiated enough between what's linked to XMRV and what's linked to ME/CFS.
• Dr. Oz was using numbers from the work done after the published XMRV study and never mentioned that this was a first step, not a definitive answer.
• The transmission question got very little time. They said that it wasn't spread though the air and that it could be spread through blood. That could make people who haven't had a blood transfusion say they couldn't psossibly have it, when we know that's not the case.
• When talking about treatments, the very last thing mentioned -- which is what people generally remember most -- was exercise. Dr. Oz gave an example of what might be appropriate exercise (walking to the mailbox everyday), but didn't make it clear that too much exercise can make you worse. I'm afraid this could perpetuate the idea that people with ME/CFS "just need more exercise."

While I think those aspects of the show could have been better, I think that overall the show was pretty successful. Dr. Oz has picked ME/CFS as a topic several times now, for his show and his magazine column, and that's obviously doing a lot to raise awareness of how very real and serious it is. The Google searches alone testify to the fact that people are more interested, and these people are approaching ME/CFS as a virus-related illness. How's that for something new?

If you'd like to see it, most of the segment (minus the 2 minutes of scare tactics at the beginning) is available on YouTube: Dr. Oz on XMRV.

What did you think of the show? Do you agree that it made a positive impact? Was there anything that concerned you about it? I'd love to hear your opinions -- leave your comments below!

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• The XMRV Discovery Series index
• Chronic Fatigue Syndrome Symptoms Checklist
• Diagnosing Chronic Fatigue Syndrome

Photo © Getty Images

NEWSBRIEF: Cymbalta (duloxetine) is now FDA approved for maintenance treatment of generalized anxiety disorder in adults. This is the 6th approved use of the drug, which is widely used for depression, peripheral neuropathy and fibromyalgia.

Anxiety and depression, as comorbid conditions, are common in people with both fibromyalgia and chronic fatigue syndrome.

Cymbalta is a serotonin-norepinephrine reuptake inhibitor (SNRI), which means that it increases levels of 2 neurotransmitters (chemical messengers) in the brain.

Also See: Anxiety & Depression in Fibromyalgia; Serotonin Information; Norephinephrine Information

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Brain fog (a.k.a. fibro fog, cognitive dysfunction) doesn't get enough respect and attention from the medical world, in my opinion. I know it's had a bigger impact on my ability to hold a traditional job and to write from home than any of my other symptoms have had. I can deal with pain -- heck, sometimes I write better when I'm really hurting because I have to focus more -- but I can't write through the fog!

This single symptom of fibromyalgia and chronic fatigue syndrome can make people unable to keep a job, drive a car, cook for themselves, maintain relationships and more. And yet our doctors don't know how to treat it, our researchers don't seem all that interested in it, and it's hard to find much information on how to live with and possibly improve it.

In this blog, we've talked here and there about cognitive training, supplements that help, and other things, but it was scattered all over in a manner that's really not helpful to someone who lacks mental clarity! To make it easier, I've put it all together in an article for you:

• Understanding Brain Fog: What Causes It & What to Do About It

There's also a Readers Respond opportunity attached to the article, so we can share our brain fog experiences.

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Nothing about fibromyalgia and chronic fatigue syndrome is easy, and that even includes getting better. While being in recovery is a heck of a lot better than dealing with the full-blown, lay-in-bed-and-suffer stage, it comes with its own challenges.

For the past 2.5 years, I've been able to make slow, steady progress. I'd spent a year varying from marginally functional to bedridden, then finally accepted that going full speed ahead and refusing to give in to illness was not going to make me better. I left my highly stressful full-time+ job so that I could actually be a mother to my children, who at the time were 1.5 and 4 years old. Since then, I've had set backs and surges forward, but I've kept trying new things and -- overall -- I've improved quite a lot.

What's been difficult for me is finding my new limits. I still vary a lot in what I can handle in a day, so pacing has remained important. Now, though, I find that different things are stopping me. It used to be that the moment I'd done too much, I'd basically collapse into a ball of unremitting pain for 2 or 3 days. Later, I'd start getting a nagging pain and, if I didn't stop, it would ramp up until it knocked me out of commission for anywhere from a few hours to a couple of days. Now, it's not the fibro that stops me -- it's either my asthma or my really weak muscles.

Some researchers believe that our bodies don't transport oxygen properly, and possibly don't use it efficiently either. I've become a believer in that theory, because I know once I start breathing hard the strength is going to run out of me like water. My muscles simply cannot keep functioning. They usually don't even hurt from over use the next day, so I know I'm not working them to capacity, but they just stop working. I really want to get in better shape and lose some weight, but unfortunately fitness is still an up hill battle for me. (But yes, I'm trying to be happy that I've at least approached the hill!)

Something I'm grateful to have gained back is the ability to plan ahead and have a social life. However, I'm struggling right now to find a balance. For example, my husband and I had a Halloween party for about 25 people. It meant cleaning and decorating the house, shopping and cooking, getting costumes together, etc. Because my husband is awesome and did a lot of work, and some great friends helped us prepare as well, it was a successful party and I was able to enjoy every minute of it. And then I slept for most of the next 3 days. Worth it? You bet! Hard to be a mom and keep a household going when all you can do is sleep? Well, you already know what that's like, or you wouldn't be here.

I've got enough commitments now that I sometimes get really scared about whether I can handle it. Now and then I feel panicky or get really insecure, certain that any day my run of good fortune will end, I'll drop all the balls I have in the air, and I'll end up right where I was a few years ago. I've learned that in some ways, things were a lot simpler when I was really, really bad: no one expected anything of me, I expected very little of myself, I had no plans, no commitments (other than to my kids), and nothing to keep track of. Now, things are getting complicated again, and I have to re-learn how to plan, live up to expectations, make commitments, and keep track of things. I'm certainly not complaining -- I know the grass is a whole lot greener where I am now -- but that doesn't mean it's easy.

To help me in my current struggles, I'm trying a few things:

1. I'm finally getting to the exercise DVDs I've been sent to review. By scheduling exercise into my work day, I know I'll make time for it. I'm hoping that it'll become a habit and also that I'll be able to build up my stamina so that I can actually begin to rebuild my strength.
2. I have lists, schedules, reminder alarms on my phone, you name it to make sure I remember what I have going on. I budget in time for anything that needs preparation, and I try to make sure each day contains only a manageable amount.
3. I'm sure to let the people who depend on me know that I am still living with chronic illness (several illnesses, in fact), so they need to cut me some slack now and then.

Are you facing challenges connected to getting better? How are you re-arranging your life as you can handle more? What has helped? What's been a problem? Leave your comments below!

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• How to Pace Yourself
• Treatment Overviews: Fibromyalgia, Chronic Fatigue Syndrome
• Exercising With Fibromyalgia & Chronic Fatigue Syndrome

Photo © Kane Skennar/Getty Images

Chronic fatigue syndrome (CFS or ME/CFS) is still without any FDA approved treatments -- Hemispherx Biopharma Inc. says the FDA has rejected its New Drug Application for Ampligen.

Ampligen is an immune-system modulator that has languished in the experimental stage for more than 30 years. Many people who've taken it for ME/CFS say it changed their lives, while others say they were disappointed in the drug. Ampligen currently is being investigated as a possible treatment for both avian and swine flus.

The FDA told Hemispherx that the 2 studies it submitted "did not provide credible evidence of efficacy of Ampligen." The company says it will consider the FDA's recommendation of at least one more study, involving at least 300 people for 6 months. Hemispherx also says it plans to work quickly to once again try to get Ampligen approved and on the market.

While no one expected this one drug to be a miracle treatment for everyone with ME/CFS, it's approval could have meant more public awareness, more credibility, and possibly more research dollars. For some, it could have meant access to a treatment that helps them regain functionality.

Are you surprised by the FDA's rejection? Do you think it was justified? Voice your opinion by leaving a comment below!

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Suggested Reading:

• Drug Treatments for Chronic Fatigue Syndrome
• Supplements for Chronic Fatigue Syndrome
• The Monster List of Chronic Fatigue Syndrome Symptoms

Fibromyalgia and chronic fatigue syndrome are not psychological illnesses, contrary to the misconceptions and even accusations of many. Because a lot of us have been told we're "just depressed" or that we're hypochondriacs, whiners, or lunatics, it's normal to bristle at the very thought of seeing a psychiatrist. In my opinion, that's something we, as individuals and a community, need to get over.

Is mental help a front-line treatment? No. Is it something we all need? No. But a lot of people do benefit from it, and a lot more could.

I recently spoke to Dr. Leslie Arnold, who's a psychiatrist specializing in the impact of chronic pain. She agreed with me that mental-health providers aren't equipped to diagnose and treat these conditions but added, "There is a very important role for mental-health providers."

Understanding, Help & Coping Skills

So if we're not crazy and our myriad symptoms have physical causes, why would we get mental help? The same reason that anyone with a chronic, debilitating illness would. How many comments have people left here about losing everything to their illness? We lose jobs, friends, spouses, homes . . . we can even lose ourselves, our independence and our self-respect. That's hard, and often we have no one around who truly understands. Even if we do have a good support system, we don't want to burden those wonderful people with constant rants about how hard life is for us.

Psychiatrists, psychologists and other mental health workers are there to listen to your problems and complaints and possibly give you more constructive ways of dealing with them. Studies show that those of us who have (or develop) good coping skills and find acceptance of our illness are more likely to find effective treatments and end up feeling better down the road. If you can't get there yourself, a professional may be able to help.

Managing Comorbidities & Medications

We're prone to anxiety, and depression is a risk for anyone with a chronic illness. Primary care providers aren't really trained to deal with these problems, while mental-health providers are. They may be able to help with both the physical and emotional aspects of depression.

"Not everybody would necessarily need that, but there is a subset that has a lot of [psychological] stressers," Dr. Arnold said.

Many of us take anti-anxiety drugs and anti-depressants (even if we're not depressed); psychiatrists have more experience with these drugs that most other doctors, so they may be better equipped to help you manage them, change your dosage, recognize side effects, wean off, etc. They may also be able to suggest medication changes that you can then discuss with your regular doctor.

More Time

One complaint I frequently hear about doctors is that they don't take enough time to listen to what's going on. I've had a lot of people tell me they also wish they could find a doctor with more compassion. Sadly, the reality of our health-care system is that most doctors have precious few minutes to spend with us. Mental-health workers generally have a lot more time and are willing to listen to the full breadth of your symptoms. A psychiatrist is also a medical doctor, and they just might understand your neurological and cognitive problems a lot better than a primary care provider.

Certainly, psychological help isn't going to "cure" us, or alleviate our symptoms. However, it could help us deal better with having an illness and with making beneficial changes. Consider these questions:

• Do you have problems with anxiety or depression?
• Do you feel alone and have no one to talk to?
• Do you wish your doctor took more time and showed more compassion?
• Could you use help managing your medications?
• Is stress making your illness worse?
• Could your coping skills be better?

If you find yourself saying "yes" to a lot of those, it might be something to consider. If you said "no" to all or most of them, it's probably not something that you need.

Have you seen a mental-health provider for problems related to fibromyalgia or chronic fatigue syndrome? Did it help? How important has it been to you? What's made the biggest difference? Leave your comments below!

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• Find a Support Group
• Grieving for Your Old Life
• Finding the Right Therapist

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Holiday Blog Classic: The Horrors of Shopping

For those of us with fibromyalgia and chronic fatigue syndrome, buying gifts for everyone on our lists can be a nightmare scenario.

• Crowded, noisy places can send us into anxiety attacks.
• All the chaos is likely to make brain fog kick in to overdrive.
• Having to walk through several stores then stand in long lines to pay is probably more physical exertion than most of us can handle.

Holiday shopping is a little frightening and overwhelming to me. I only survive it by making lists, planning carefully, dragging my husband along most of the time, and using a cane or wheelchair when I need to (in spite of how strange it may feel).

As you think about those dreaded shopping trips this year, it can help to have ways to take the dread out of the deed! Read this:

• 10 Ways to Surivive Holiday Shopping With Fibromyalgia & Chronic Fatigue Syndrome

What helps you get through holiday shopping, or the season itself, without crashing? Do you have a strategy or do you just wing it and hope for the best? Have you had any shopping nightmares, or any funny foggy moments? Leave your comments below!

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Suggested Reading:

• How to Pace Yourself
• The Holiday Survival Guide
• 10 Important Lifestyle Changes for Fibromyalgia & Chronic Fatigue Syndrome

Photo © Getty Images

Are you looking for a holiday gift for someone with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS)? I posted the following list last year and got a great response, so I decided to offer it up again.

Here are some ideas for a thoughtful present:

• Warming products: Most of us are cold a lot of the time and have trouble warming up. A lot of new products that heat up are on the market, including scarves, slippers and blankets.
• Time fillers: Because we can be stuck in bed or on the couch a lot, we need ways to spend our time. DVDs, video games, hand-held games, puzzle books, magazine subscriptions and the like can add variety to how we fill those hours. It's an added bonus that brain-training games may, according to research, help us keep or regain cognitive abilities. Also consider items related to any hobbies they may have. Whether books are a good idea depends on the degree of the person's cognitive dysfunction.
• Relaxation aids: Things like relaxing music, aromatherapy products, and gentle massage tools can help with stress, and less stress means fewer symptoms! Do be cautious about scented or personal-care products (i.e. lotion, body wash) - a lot of us have sensitivities to those kinds of things, so only buy them if you know there's no sensitivity issue.
• Illness-related books: If the person is newly diagnosed or really struggling with symptoms, a book about their illness could really help. Look for ones that offer real-life help and easy-to-understand information, and avoid those that promise cures.
• New Addition -- Bath products: I saw an awesome bathtub tray recently, and with how often we take hot baths to warm up and relax our bodies, I thought something like that would be great! Also consider things like bath pillows or really soft body scrubbers.
• New Addition -- Reviewed products: I've reviewed a couple of products that really help me get through life. Check out the Mediflow Waterbase Pillow and the Homedics Shaitsu Back & Soulders Massaging Cushion.

It can also help to know what not to give! Here are gifts that may not be appropriate:

• Exercise-related gifts: People with FMS and ME/CFS get tired of well-meaning suggestions that they exercise more, so unless you know an exercise-related item is something the person wants, don't go there!
• Plants: While plants can help create a healthy and pleasant environment, anything that needs care is a bad idea for someone dealing with these illnesses.
• Gift cards: If the person you're buying for has trouble driving or walking, gift cards are likely to go unused. If the person is comfortable shopping on the Internet, however, consider a gift card that can be used online.
• Event tickets: Planning ahead is hard when you have an unpredictable illness. Tickets to a date-specific event may be hard for the person to use. Same goes for gift certificates with an expiration date.
• Personal care products or anything scented: Because so many of us have sensitivities, unless you know the person well and know what they can tolerate, these are best avoided.

One of the greatest gifts you can give to someone with a chronic illness is your time. Perhaps you can offer to take your friend holiday shopping, help put up decorations, or do something else to help them prepare for the holidays!

Any other suggestions for gifts that are either thoughtful or inappropriate? Have you gotten a gift that left you angry, offended or shaking your head? Have you gotten something that you absolutely love? Leave your comment below!

Suggested Reading:

• The Holiday Survival Guide
• 10 Ways to Surivive Holiday Shopping
• A Simple Explanation of Fibromyalgia
• A Simple Explanation of ME/CFS

Photo © Lauren Nicole/Getty Images