About.com Fibromyalgia & Chronic Fatigue Syndrome

Has Your Marriage Been Damaged by Fibromyalgia or Chronic Fatigue Syndrome?

Sat, 07 Nov 2009 06:00:01 +0000

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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Has Your Marriage Been Damaged by Fibromyalgia or Chronic Fatigue Syndrome? originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Saturday, November 7th, 2009 at 06:00:01.

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XMRV & Updated Mechanism Theory of Chronic Fatigue Syndrome

Thu, 05 Nov 2009 04:00:26 +0000

The XMRV Discovery Series

Dr. Daniel Peterson, one of the researchers involved in the possibly groundbreaking XMRV findings, testified before the NIH's Chronic Fatigue Syndrome Advisory Committee Oct. 29. Among the many things he presented was an updated theory of how chronic fatigue syndrome (CFS or ME/CFS) develops. (Thanks to Dr. David S. Bell and his newsletter, Lyndonville News for putting this into language that was easier to understand!)

You are, somehow, infected with XMRV. The retrovirus may enter your body along with another virus (basically "piggybacking"), such as Epstein-Barr or human herpesvirus 6. It could be in the blood supply. It could happen in myriad other ways -- we just don't know yet.
XMRV infects cells involved in immunity, such as Natural Killer (NK) cells, B cells and T cells. That fits with findings of other researchers who've focused on viral/immune mechanisms for ME/CFS.
NK cells are impaired, in both number and activity. This results in immunodeficiency and leaves the body unable to control certain infectious agents, including herpes viruses. A similar mechanism is at work in HIV, the best known retroviral disease, only involving a different type of cell.
Other infectious agents in the body reactivate. With the suppression forces gone from the immune system, other viruses are effectively "let out of jail" and given free reign in your body. This leads to the well-documented features of ME/CFS, including increased cytokine production and activation of RNase L. This contributes to symptoms.

You can see a podcast of the entire presentation here: NIH Video Casting (scroll down until you see Chronic Fatigue Syndrome Advisory Committee Meeting, (CFSAC) - Day 1. There's also a Day 2.)

Does this model help you understand how XMRV might lead to ME/CFS? Do you think it holds together and provides a realistic mechanism? Share your opinions below!

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XMRV & Updated Mechanism Theory of Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Thursday, November 5th, 2009 at 04:00:26.

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XMRV Lab Tests: Should Chronic Fatigue Syndrome Patients Get Tested?

Tue, 03 Nov 2009 06:00:23 +0000

The XMRV Discovery Series

It certainly doesn't take long for things to come out of the woodwork on the heels of reported scientific breakthroughs. Already, some labs are offering very expensive tests for XMRV, the retrovirus researchers have preliminarily tied to chronic fatigue syndrome and possibly fibromyalgia. Now a lot of people are asking, "Should I get tested?"

The doctors and researchers who've spoken out about these tests say, don't waste your money. Even if you get a positive test, we don't yet know what to do about it. One commenter here recently said she wanted to be tested, because if she was negative for XMRV she'd know to keep looking other directions. That's a perfectly valid argument -- except that, for this particular retrovirus, there IS no reliable commercial test. Even the researchers behind the XMRV finding are looking for XMRV infection in 4 different ways, and getting different numbers depending on the method. A negative test result from a commercial lab, right now, is meaningless.

I know it's hard to hear that, when you've waited a long time for validation of your illness, and you want to find effective treatments now; but that's the reality of it. Do you want to spend $400-$500 dollars for a meaningless test result that doesn't guide you toward better treatments? Odds are, you can find a better use for that money.

Waiting, when your life is in shambles because of illness, is excruciating. I understand that. I'm not a patient person, and I hate having to tell you to wait around and be patient, but that's what we have to do. Quality science can't take shortcuts, so we just have to wait for it validate (or invalidate) this research, provide a reliable test, and figure out what treatments work. How much more of your life will pass while you wait? Hopefully not that much. Researchers are already working on a test and eying possible treatments.

Will you pay for an XMRV test anyway, just to see what it shows? Do you think this is just one more money-making scheme targeting desperate people? Share your opinions below!

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XMRV Lab Tests: Should Chronic Fatigue Syndrome Patients Get Tested? originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Tuesday, November 3rd, 2009 at 06:00:23.

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Chronic Fatigue Syndrome: Dr. Lerner on Ampligen, XMRV

Tue, 03 Nov 2009 02:00:05 +0000

Dr. A Martin Lerner: Thoughts on XMRV (Updated), Ampligen

In my recent conversation with Dr. A. Martin Lerner, a former chronic fatigue syndrome sufferer who says he used his specialty in infectious diseases to find treatments for himself and others, I asked him about both the XMRV discovery (which was just days old at the time) and also about Ampligen, the proposed chronic fatigue syndrome drug currently awaiting FDA approval.

XMRV

XMRV is a retrovirus that researchers recently linked to chronic fatigue syndrome (CFS or ME/CFS). Dr. Lerner says that in his patients, he's discovered that 3 viruses are found in nearly everyone with ME/CFS -- Epstein-Barr virus (EPV), human herpesvirus 6 (HHV-6) and cytomegalovirus (CMV) -- and that some patients also have Lyme disease on top of one or more of those viruses.

At the time of our conversation, Dr. Lerner hadn't yet been able to look over the XMRV data but said he was definitely interested in seeing it.� Since then, he's had the opportunity to examine the research for himself, and he has this to say:

"I am delighted with Dr. Mikovitz's findings concerning XMRV in the bloods of CFS patients.� The more we understand of the science of CFS the better our care for our patients will be.� I look forward to the confirmation of the XMRV findings from another investigator(s) in another laboratory(s).

There is unequivocal evidence that EBV, HCMV and HHV-6 are etiologic in CFS.� Illness disappears upon antiviral treatment and CFS patients remain well.� If XMRV findings are confirmed, they will coordinate our better understanding for treatment of CFS.� We look forward to the science."

On the surface, it might seem like other research -- especially the XMRV finding -- could disprove Dr. Lerner's theories about EBV, HHV-6 and CMV. However, (and these are my words, not his) that's not necessarily true. If the XMRV findings are replicated and nearly everyone with ME/CFS is infected with it, that wouldn't meant that other infectious agents didn't play a role. Could XMRV make people more susceptible to complications/long-term infection by EBV, HHV-6 or CMV? Could EBV, HHV-6 and CMV make us more vulnerable to XMRV infection? These are all areas that researchers could explore in the future.

Ampligen

Dr. Lerner treats his ME/CFS patients with one of two antiviral medications:

I asked him about Ampligen, which many hope will become the first drug ever approved for ME/CFS. "The science behind Ampligen is sound," Dr. Lerner said. He doesn't use it because it has to be given intravenously, which means patients have to come to the office more often, whereas people can take the other two at home.

Dr. Lerner and I also talked a lot about exercise in people with chronic fatigue syndrome, and he has a very interesting take on it. That's coming up soon.

More on Dr. Lerner

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Chronic Fatigue Syndrome: Dr. Lerner on Ampligen, XMRV originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Tuesday, November 3rd, 2009 at 02:00:05.

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Jaw Pain in Fibromyalgia & Chronic Fatigue Syndrome

Mon, 02 Nov 2009 06:00:19 +0000

November is TMJ Awareness Month

A lot of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) have jaw pain, and in many cases it's not a symptom but a co-morbid condition -- temporomandibular joint disorder, better known as TMJ.

TMJ can cause several symptoms that aren't typically part of FMS or ME/CFS, including:

Jaw pain
Difficulty chewing
Painful clicking in the jaw
Locking jaw

I've been dealing with TMJ issues lately, and actually got the official diagnosing after having symptoms for about 15 years that were just too mild to worry about. The difference? I've apparently started grinding my teeth at night, and it's doing bad things to my teeth and jaw. Now I'm wearing a mouth splint at night (on top of my CPAP mask for sleep apnea), but I may have to see a dentist who specializes in TMJ to really get things worked out.

Because TMJ is common in us and it can become a major problem, you should talk to your doctor and/or dentist about jaw pain. So you can spot the warning signs, you can familiarize yourself with TMJ here:

TMJ in Fibromyalgia & Chronic Fatigue Syndrome

Do you have or suspect you have TMJ? What impact has it had on your life? What treatments have you tried? Share your experience by leaving a comment below!

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Jaw Pain in Fibromyalgia & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Monday, November 2nd, 2009 at 06:00:19.

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Painful Bladder in Fibromyalgia & Chronic Fatigue Syndrome

Sat, 31 Oct 2009 00:01:35 +0000

Oct. 31 is Interstitial Cystitis Awareness Day

A lot of people with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) develop bladder pain and other bladder-related symptoms that can be severe. These symptoms, though, are NOT related to FMS and ME/CFS -- at least not directly.

A condition called interstitial cystitis (IC) is a common overlapping condition for us. It can cause abdominal or pelvic pain, and it can mimic a urinary tract infection. In fact, it's so frequently misdiagnosed that most people have IC for about 4 years before they're diagnosed correctly.

If you develop bladder pain or other urinary problems, it could be a good idea to bring up IC with your doctor. To learn more about IC, the symptoms, and how it's diagnosed and treated, read:

Interstitial Cystitis in Fibromyalgia & Chronic Fatigue Syndrome

Do you have IC? What symptoms have been worst for you? How long did it take to get a diagnosis? Leave your comments below so we can all learn from them!

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Painful Bladder in Fibromyalgia & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Saturday, October 31st, 2009 at 00:01:35.

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Chronic Fatigue Syndrome, Exercise & the Heart

Fri, 30 Oct 2009 06:00:27 +0000

Dr. A. Martin Lerner: Protecting the Heart

When it comes to chronic fatigue syndrome (CFS or ME/CFS), exercise is a contentious subject. That's because of a symptom called post-exertional malaise; exertion makes symptoms worse. Still, some doctors, researchers, and official organizations recommend graded exercise therapy (GET) as a front-line treatment for the condition -- sometimes ignoring all other treatment options other than possibly cognitive behavioral therapy (CBT). Some people say GET has worked for them, while others say they've been made worse by it.

Dr. A. Martin Lerner, an infectious disease specialist who himself recovered from ME/CFS, says anything that raises the heart rate of someone with this condition is dangerous, unless they're well on their way to recovery (at a 7 on his EIPS chart.) He says this is because, in his practice, he's seen that ME/CFS does involve the heart.

Dr. Lerner says people with ME/CFS have a rapid heart rate when they're at rest, on top of low blood volume. As the disease progresses, he says, the heart muscle becomes weaker.

Dr. Lerner has published studies about an abnormal heart function in people with ME/CFS, showing dysfunction even at normal daily levels of exertion, abnormal movement both at rest and under stress, and T-wave abnormalities distinct enough to provide a diagnosis.

To check for those heart problem in his practice, Dr. Lerner uses ECG (electrocardiogram) and a Holter monitor (a portable monitor you may wear for a couple of days.)

For those in the early stages of recovery, Dr. Lerner says, "Certainly, it is helpful to not just let the muscles atrophy, but sitting up is actually a muscular activity." He adds, "Walk, live, but no exercise until you're at a 7, because if you exercise before that you're going to go backwards."

When it comes to gentle exercise that doesn't raise the heart rate, Dr. Lerner seemed fairly neutral, and I spoke to one of his patients who says he did grudgingly OK yoga for her even though she's nowhere near a 7 on the scale. However, she's careful not to do anything that will raise her heart rate.

So should you follow some doctors' recommendations to exercise, or heed Dr. Lerner's warnings about cardiac problems? That's a tough question, especially since most doctors wouldn't know what to look for on tests even if they agreed to perform them. Dr. Lerner recommends acquainting doctors with the published, peer-reviewed work done by him and others. If you go to pubmed.gov and type in Lerner AM cardiac, you'll get a list of research abstracts to take to your doctor. You'll also find information on some of Dr. Lerner's heart-related work on his website: Treatment Center for Chronic Fatigue Syndrome.

I know -- a lot of doctors will never take the time to educate themselves on this. Here's my idea: start keeping a record of your resting heart rate. If it's high (more than 100 beats per minute), talk to your doctor about the possibility of heart problems. At least that's something that usually gets their attention! Your test results could help you make some very important decisions.

More on Dr. Lerner:

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Chronic Fatigue Syndrome, Exercise & the Heart originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Friday, October 30th, 2009 at 06:00:27.

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XMRV Researchers to Present Chronic Fatigue Syndrome Findings

Wed, 28 Oct 2009 14:13:29 +0000

The XMRV Discovery Series

Representatives from the Whittemore Peterson Institute (WPI) are presenting their retroviral findings to the U.S. Department of Health and Human Services Chronic Fatigue Syndrome advisory committee Thursday, Oct. 29.

This comes 3 weeks after the publication of a paper showing researchers had linked the retrovirus, called XMRV, to chronic fatigue syndrome. Dr. Daniel Peterson, an author of the paper and WPI medical director, and WPI founder and president Annette Whittemore both will speak.

"I am hopeful about the possibility of providing patients who are positive for XMRV a definitive diagnosis, and hopefully very soon, a range of effective treatments options," said Dr. Peterson.

Whittemore adds, "We are honored that both Dr. Peterson and I have been given the opportunity to make presentations and participate in this historic committee discussion. The discovery of XMRV is the breakthrough that this institute has been working towards and we have been contacted by patients and physicians from around the world congratulating us and expressing optimistic hope for the future."

The presentation will be at 9 a.m., and you can watch video of it anytime after 10:15 a.m. (EST) at NIH VideoCasting.

Also See: The XMRV Discovery Series

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XMRV Researchers to Present Chronic Fatigue Syndrome Findings originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Wednesday, October 28th, 2009 at 14:13:29.

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The XMRV Discovery Series Index

Wed, 28 Oct 2009 12:00:22 +0000

The XMRV Discovery Series

The discovery of a possible link between XMRV and chronic fatigue syndrome (and maybe fibromyalgia) has potentially huge ramifications and raises a lot of questions. Here's an index of my XMRV Discovery Series to help you sort it all out:

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The XMRV Discovery Series Index originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Wednesday, October 28th, 2009 at 12:00:22.

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XMRV: Talk of a 'Cure' for Chronic Fatigue Syndrome & Fibromyalgia

Wed, 28 Oct 2009 06:00:08 +0000

The XMRV Discovery Series

With XMRV being a hot topic of conversation since research tied it to chronic fatigue syndrome and possibly fibromyalgia, I've seen a lot of people talking about a cure. While I know it's tempting to think that if this retrovirus truly is a cause, a cure may be just around the corner. That would be a wonderful and amazing thing. I think it's important, however, that we stay realistic about what this discovery could mean.

Curing Disease

First, very few diseases have a true cure. Very few of the diseases that can be cured are viral. Heck, we're still powerless against the common cold! The realistic things to hope for, from this or any other research, are diagnostic tests and better treatments. I don't say that to bum you out -- just to make expectations realistic.

Treatment Options

Most diseases are treated by either:

Alleviating the symptoms,
Slowing or stopping the progress,
Or both of the above.

Right now, our treatments are generally aimed at alleviating symptoms. We take things that help raise neurotransmitters, shore up our immune systems, make us sleep better, improve cognitive function, etc. A lot of things aren't very good at alleviating our symptoms and nothing works for everyone, but until the underlying causes and mechanisms first discovered and then widely accepted by the medical community, that's all we've got.

If the XMRV link is for real, that could change. Thanks to all the HIV research that's been done in the last couple of decades, we know a lot about retroviruses and have a host of anti-retroviral drugs that can now be tested as chronic fatigue syndrome treatments. If they're safe and effective, that will be fabulous -- it'll be a treatment aimed at a major contributing factor, which may to stop or slow the underlying mechanisms of the disease.

Remember, though, that while HIV/AIDS can now be treated pretty effectively, it still can't be cured. Someone who has HIV in his or her system will have it there forever. Odds are, XMRV is the same. What we need to be hopeful for is effective treatments that allow us to live better lives, and the diagnostic tests that will show our doctors that we do in fact need those treatments.

The Problem of False Hope

So what's wrong with hoping for a cure, no matter how unlikely? You're setting yourself up to be disappointed. It's like buying a lotto ticket -- if you pin all your hopes on winning a million dollars you won't be happy winning $100. If you think, "Twenty bucks would be nice," you'll be thrilled with 100.

I'm all for hope -- I hope for a lot of things. I hope for diagnostic tests that validate our illnesses and end misdiagnoses. I hope for universal acceptance from the medical community. I hope for treatments that do address the underlying causes and give millions of us a chance to lead full lives, free from debilitating symptoms. But a cure? Well, sure it'd be the best thing ever, but it just seems like too remote a possibility. I'd rather hope for things I have a chance of getting. That way, I'll have fewer disappointments when the next major discovery doesn't lead to a cure.

Also See: The XMRV Discovery Series

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XMRV: Talk of a 'Cure' for Chronic Fatigue Syndrome & Fibromyalgia originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Wednesday, October 28th, 2009 at 06:00:08.

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