Group Behind Retracted XMRV Paper Holds On to Grant Money
NEWSBRIEF: The Whittemore Peterson Institute (WPI) in Reno, NV, has managed to keep a 5-year, $1.5-million U.S. government grant in spite of firing the principal researcher named on the grant.
WPI fired Judy Mikovits in late 2011 after the institute's high-profile paper linked XMRV to chronic fatigue syndrome was retracted by the journal Science. WPI has said the firing was not related to the retraction.
According to ScienceInsider, Representatives of the National Institute of Allergy and Infectious Diseases, which is a division of NIH, visited WPI and determined that Vincent Lombardi had the expertise to replace Mikovitz as the principal investigator. Lombardi was the co-author of the XMRV study.
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Hair Problems in Fibromyalgia
Fibromyalgia affects everything, from your hair to your toenails. And if you're thinking, "Hey, I wonder if my hair problems are related to fibromyalgia," there's a good chance they are.
The biggie is that we're prone to hair loss - which, fortunately, is temporary. For most of us, the hair falls out more when we're going through flares or periods of high stress. It does grow back, which is good, but often leaves us with wispy baby hairs that make it look messy when we pull it back. You might also lose enough that it's noticeably thinner.
But I started thinking about other types of hair problems when I came across this recent comment from a reader:
"I keep my long hair braided or in a soft bun, because my hair moving around causes pain. Can't pull it in a pony tail, for the same reason." -Robbie
I'm sure this issue isn't hers alone. I know fibromyalgia has been a big influence on my hairstyle at times.
The picture of me on this page (which is badly in need of updating) shows what I call my "too sick to do my hair" hairstyle. As my functionality improved, I changed it to something that takes a little work, but not much. And still, I have a wide selection of hats for days when I'm just not up to styling it. I have a huge problem in the summer, because my forehead sweats excessively when I'm warm (another fibromyalgia symptom) and undoes my do in a hurry.
I've read dozens of comments from people who say they can't hold their arms up long enough to style their hair, which is a common complaint in chronic fatigue syndrome, as well.
Barrettes, head bands, clips, etc. often just look too painful to even consider putting on my head. And then there's the styling products - a horror for anyone with fragrance or chemical sensitivities!
It may seem like a hairstyle is inconsequential when you've got a few dozen symptoms to contend with, and really, it's way down on the list of my concerns. However, not being able to style your hair like you want can have a big impact on your self-esteem. It can also be a reminder of all that you've lost to illness.
What has fibromyalgia meant for your hair style? Has pain, energy or hair loss been the bigger factor? What emotional impact has it had on you? Leave your comments below!
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Pain & Cognitive Function in Fibromyalgia
You're going to like this.
A few days ago, a German researcher told the 6th World Congress of the World Institute of Pain that, according to his latest study, the cognitive dysfunction (fibro fog) of fibromyalgia is primarily related to one single factor.
That factor is not depression. It is not anxiety. It is not even unrefreshing sleep.
That factor is: Pain.
And get this - his research team hypothesized that the fibromyalgia participants who were on opiates (narcotics) would demonstrate more cognitive impairment than those who weren't. It's only logical, right?
Apparently not. The fibromites on opiates actually had better cognitive function. Why? Because they had less pain.
That's pretty darned significant to me! When you take a drug that makes most people all kinds of loopy and causes obvious impairment, then scientifically demonstrate that our pain is actually harder for the brain to deal with, it says volumes.
And it's not that depression, anxiety and sleep disorders don't cause cognitive problems. It's well established that they do. But this researcher, Stefan Duschek, PhD, says that in us, pain is the only thing that determines how significant fibro fog is. I really like this guy.
I hope the doctors who want to chalk up fibro fog (and other symptoms) to "just depression" will take note of what Duschek is saying: lower our pain, increase our cognitive function.
As to why our particular form of pain is so hard on the brain, Duschek told Medscape Medical News:
"Pain is an attention-demanding condition; one may suppose that *central nociceptive activity detracts from cognition by requiring enhanced neural processing resources."
It's like the brain is a computer and our unique pain is a program that takes an overwhelming amount of processing power, so everything else slows down and things start to glitch.
This is a massive affirmation of what fibromites have known for decades and what far too many doctors have continued to deny. To borrow a phrase, it's the pain, stupid.
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- 7 Types of Fibromyalgia Pain
- Understanding Fibro Fog
- *Definitions: Central Sensitization & Nociceptors
- Treating Fibromyalgia
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Smoking, Oxidative Stress, Fibromyalgia & Chronic Fatigue Syndrome
We all know smoking is bad for us. But did you know smoking may exacerbate symptoms of fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS)?
We have a handful of recent studies showing smoking makes FMS symptoms more severe:
- One from the Mayo Clinic showed higher pain intensity, fewer good days, and more missed work;
- A Turkish study linked cigarettes to more severe FMS symptoms as well as more anxiety and depression;
- And Korean researchers found more tender points and depression.
An older Scandinavian study showed significantly more pain and numbness, more severe symptoms overall, and more functional problems in smokers with FMS. (However, this study did not show a difference in tender-point count.)
In ME/CFS, the effect of smoking hasn't been scientifically measured. In both conditions, though, the role of oxidative stress is getting more and more of researchers' attention and evidence is mounting that it plays a key role, and possibly a causative one. (For a look at the latest research and what oxidative stress is, see: Oxidative Stress in Chronic Fatigue Syndrome.)
In a nutshell, oxidative stress is caused by an excess of free radicals, which damage your health. Smoking is known to introduce a huge amount of free radicals to your system (as is second-hand smoke.) It also depletes antioxidants, which neutralize free radicals. That means cigarette smoke puts you at high risk for oxidative stress. If oxidative stress is a partial cause of FMS and ME/CFS, it's not a stretch to say that smoking could be a major contributor to the development and severity of them.
So the bottom line is that you have more reason to stop smoking - or avoid second-hand smoke - than you thought. Does that make it any easier to quit? Hopefully it'll up your motivation, but even then, it's still an incredibly difficult thing to break that addiction. Here are resources that can help, from About.com's Smoking Cessation Guide Terry Martin:
For information on fighting oxidative stress, see: Antioxidants for Fibromyalgia & Chronic Fatigue Syndrome.
Do you smoke? Have you quit smoking? What impact did it have on your symptoms? How did you do it? Leave your comments below!
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Antioxidants for Fibromyalgia & Chronic Fatigue Syndrome
One theory of fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) is that oxidative stress plays a key role and possibly a causative one as well. Evidence in support of this theory is growing - I recently reported on the latest study of oxidative stress in ME/CFS. (You can read that, along with an explanation of what oxidative stress is and how antioxidants help, here: Oxidative Stress in ME/CFS.)
You've probably heard a lot of hype about antioxidants and how they're essential for staving off myriad diseases. While some of the information in the popular media is over blown, there is solid evidence behind the benefits of antioxidants at countering oxidative stress, which can trigger illness - possibly including heart disease and cancer.
So how do you get more antioxidants? Food and supplements are the main ways.
Antioxidant-Rich Foods
According to a USDA study, several of the best common-place antioxidant-rich foods are beans and berries. My About.com colleague Cathy Wong, Guide to Alternative Medicine, has a list of the USDA's 20 top foods: Best Food Sources of Antioxidants.
Several of the foods profiled in my Food of the Week series contain antioxidants, including:
A lot of products in the grocery store are labeled as containing antioxidants, but the best sources are generally the natural ones - which are often less expensive and better for you over all.
Antioxidant Supplements
You have a lot of choices when it comes to antioxidant supplements, including:
- CoQ10
- Rhodiola Rosea
- Theanine
- Vitamin C
- Vitamin E
- Beta Carotene
- Selenium
Along with increasing antioxidant intake, you can combat oxidative stress by avoiding things that cause free radicals in your body. For more, see: Smoking, Oxidative Stress, FMS & ME/CFS.
Have your symptoms improved due to antioxidants? Which kind(s) did you use? What was the effect? Leave your comments below!
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Oxidative Stress in Chronic Fatigue Syndrome
Research Brief
A new study supports the theory that chronic fatigue syndrome (ME/CFS) may be related to oxidative stress, and that oxidative stress may play a key causative role in the illness.
This was the third study in a series looking at several possible components of ME/CFS:
- Ventricular lactate
- Cortical glutathione
- Oxidative stress
The earlier research had uncovered significantly elevated levels of ventricular cerebrospinal-fluid lactate in ME/CFS, as compared to generalized anxiety disorder and healthy controls. In this study, researchers wanted to see if the high lactate levels could be caused by increased oxidative stress, low blood flow to the brain, and/or mitochondrial dysfunction (which involves the building blocks of cells.)
They say results showed significantly high ventricular lactate in participants with ME/CFS compared to healthy controls. They also report an insignificant difference in measures of cortical glutathione and no difference in markers of mitochondrial function.
In addition, ventricular lactate was highest and cortical glutathione was lowest in the most severe cases.
Rsearchers concluded that this study supports the pathphysiological model of ME/CFS with oxidative stress as a possible underlying cause.
What is Oxidative Stress?
The atoms in your body are supposed to have an even number of tiny particles called electrons. When an atom (or molecule) has an odd number, it's out of balance and roams around your body in search of an electron to steal in order to balance itself. In this way, they create other free radicals, damage your cells and DNA, and keep your body in an unbalanced state.
Free-radical damage may contribute to diseases including heart disease and cancer. Some researchers have theorized that it's involved with ME/CFS and related conditions such as fibromyalgia, PTSD and Gulf War illness.
Free radicals are a normal part of your body and we do need some of them, but at high levels they become destructive and put your body into a state called oxidative stress.
Things that can cause an increase in free radicals include air pollution, smoking cigarettes and a poor diet.
You've probably heard a lot about antioxidants. They've been loudly touted (and sometimes over-hyped) for several years because can counter oxidative stress by neutralizing free radicals.
For this reason, some doctors recommend antioxidants for ME/CFS and similar illnesses, and some experimental protocols involve high levels of them (most notably the Pall Protocol.)
Evidence for oxidative stress isn't strong enough yet for doctors to universally recommend antioxidants for these conditions, but the body of work is growing and continuing to point to oxidative stress as an important factor. Learn more about Antioxidants for Fibromyalgia & ME/CFS.
Also See: Smoking, Oxidating Stress, Fibromyalgia & ME/CFS.
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Measuring Your Progress With Fibromyalgia & Chronic Fatigue Syndrome
Pain and fatigue are hard to quantify, and with fibromyalgia and chronic fatigue syndrome we generally have more than our fair share of both. Even without a foggy brain, it can be hard to compare how you felt a week, or a month, or a year ago to how you feel today.
To keep a realistic view of our progress (or lack thereof), it helps to have some kind of measurement. Then we can more accurately gauge how successful our treatments and lifestyle changes are.
However, our illness aren't like, say, diabetes, where a simple blood test can give you and your doctor a snapshot of how you're doing. Some doctors use periodic tender-point exams or re-tests for infectious agents when those things apply, but even those aren't terribly good at showing how we're feeling and functioning day to day.
I've unintentionally come up with a few real-world measurements of how well I'm functioning, and they can open my eyes to changes I may not have been fully aware of.
For example, the 2 doctors I see the most are on the third story of a clinic with really high ceilings. Before I had fibromyalgia, I would always walk up the stairs. Afterward? No way. Just looking at them as I hobbled toward the elevator made me tired and achy.
I surprised myself a couple of years later. One day, I felt pretty decent (for me, anyway) and decided I walk up the first flight, then take the elevator. It didn't kill me. The next time I was there, I walked the whole way up. Since then, I've paid attention to how I feel walking up those long staircases. At times, it's gone back to being a struggle, and that's helped me realize I need to make changes, or get better about some aspect of treatment or management.
My work here has given me a good way to monitor my mental function. Most of us have a problem with short-term memory, which makes us wonder why went to a certain room or forget the time of an appointment immediately after it's made. Writing isn't always a good test of how bad my fibro fog is - writing is fickle, and on some days the words just come harder than on others.
However, some of the more rudimentary, short-term-memory-dependent things I do can be very telling. For instance, when I add a photo to something, I need to put in a few bits of information - the code for the image, the size, and the copyright holder. I used to open the file where my images are stored, copy and paste the code, go back to check the size and get that entered, then copy and paste the copyright credit.
Now, at least most of the time, I look at the size and copyright while copying the code and actually remember it all! If I find myself struggling with that task, it lets me know that I need to do something - take a nap, eat better, manage my stress, increase a supplement, etc.
Most of us eventually get to a point where we subconsciously monitor our symptoms all the time, but for me, having these little measures of where I am have become fairly valuable.
Do you have measures of function like this in your life? What are they? How have they helped you? Leave your comments below!
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Cortical Electrostimulation for Fibromyalgia
Research Brief
A study published this month in the journal Pain Medicine supports earlier findings that noninvasive cortical electrostimulation may be somewhat effective against fibromyalgia symptoms.
In noninvasive cortical electrostimulation, a practitioner attaches electrodes to the outside of the head and delivers an electric current to the cerebral cortex (outer layer of gray matter on the upper part of the brain.)
In this study, researchers say participants had modest improvements in pain, tender point count, fatigue and sleep without significant side effects. They're recommending it as a part of the fibromyalgia treatment regimen, not as a stand-alone treatment. (It's rare for any single treatment to adequately manage all fibromyalgia symptoms.)
Learn More:
Have you tried this form of electrostimulation for fibromyalgia? How did it work? Leave your comments below!
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Changing Dietary Sensitivities With Fibromyalgia & Chronic Fatigue Syndrome
This is the third out of 4 Januaries that I've been trying to figure out what food is bothering me this time. Three years ago, it was gluten. Last year, it was dairy and soy, with more to follow by the time my problem gall bladder was diagnosed and removed. Now, I'm once again having a problem with dairy or soy, or possibly both. This time, I suspect I've developed some new food sensitivities. Those are among the many joys of fibromyalgia and chronic fatigue syndrome.
This is one of the areas of our illness that we don't know a lot about, other than that it's really common for us to have food sensitivities. I think the most convincing theory I've seen comes from Ginevra Liptan, MD, and is outlined in her book Figuring Out Fibromyalgia. Here's her theory in a nutshell:
- Our autonomic nervous system has 2 modes - sympathetic, which is known as fight-or-flight; and parasympathetic, which is known as rest-and-digest.
- In us, it's stuck in fight-or-flight, meaning blood is diverted away from the digestive system.
- That causes the spaces between cells to widen, which allows tiny food particles to slip between them and escape into the blood stream, which leads to sensitivities.
Doctors can test for food sensitivities, but there's disagreement between mainstream and holistic medicine as to which tests are most accurate. You can check for food sensitivities on your own as well:
I first did the elimination diet a few months after my fibromyalgia diagnosis. It's a huge pain, but it doesn't last long and is worth doing, since food sensitivities can cause horrible digestive symptoms and exacerbate your other symptoms as well. It involves cutting back to very few foods and then reintroducing one category at a time. I was frustrated the first time because I didn't find anything, but at least I knew it wasn't a food problem.
Later, when the gluten issue was becoming apparent, I had a pretty good indication it was gluten and tried eliminating just that. It helped within just a few days, and when I tried to re-introduce gluten, I was back to square one. (Then I needed to be tested for Celiac disease, which is an autoimmune condition, and fortunately I don't have it.)
Both with my gluten problem and last year with my bad gall bladder, I waited to long to go to the doctor. Because of that, I suffered longer than I needed to and let the problem impact my life too much. This time, I'm going in sooner. If it is food sensitivities, I need to find out quickly so I can get rid of the symptoms that are disrupting my life - I don't need more fatigue, sleep problems, muscle pain and puffiness, thank you very much! If it's not, at least we'll have eliminated that so we can look for other issues.
And that reminds me - don't let your doctor blow off digestive problems as "just" fibromyalgia or chronic fatigue syndrome. Yes, we're prone to food sensitivities and also to irritable bowel syndrome, but those are problems that need to be diagnosed and treated separately. Additionally, our existing illnesses don't prevent us from developing other problems, like my gall bladder infection or other serious digestive problems. It's better to be safe than sorry.
Do you have food sensitivities? What bothers you, and what symptoms does it cause? Did you find sensitivities through testing or the elimination diet? Leave your comments below!
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- Your Diet for Managing Symptoms
- Supplements for Specific Symptoms
- READERS RESPOND: Elimination Diet Experiences
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Fibromyalgia & Falls: Why We're Prone
Research Brief
People with fibromyalgia are known to be prone to falls, and new research may provide insight into why.
The small study compared strength and other measures of muscle function in 16 women with fibromyalgia and 16 healthy women, focusing on the hips, knees and ankles.
Researchers say they found low muscle strength in the legs, low function in the knees and hips, and poor balance and agility in the fibromyalgia group.
Furthermore, they say the greater the hip problems, knee pain, overall pain and severity of fibromyalgia symptoms, the more likely the person was to have a history of falling.
Take-Aways
I think the main take-away from this study, for those of us who are living with fibromyalgia, is that we may be able to strengthen these areas and help prevent falls. If light exercise, within your personal limits, can keep you from falling and possibly hurting yourself, it'd be well worth the effort.
Some experts believe fibromyalgia puts you at risk for osteoporosis, which makes falls even more hazardous. Between our pain amplification (hyperalgesia) and generally slow healing rate, a broken bone can be a huge setback for us.
This is just a small preliminary study, but if the results are replicated on a larger scale, they could lead to recommendations of physical therapy to help with strength in our legs. I didn't used to equate balance to leg strength, but after having physical therapy for a knee injury a year ago, I really saw how they were connected.
Do you fall or stumble a lot? Do you have a lot of hip or knee pain? Have your falls lead to serious injuries? Leave your comments below!
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