Fibro blog Chronic Fatigue blog How to heal Fibromyalgia and Chronic Fatigue Syndrome blog and podcast

Throughout the ages man has asked himself, “What does it mean to be healthy?” And then, “How do I get health-ier?” Various answers and opinions have been offered, but, when it comes down to it, the clear answer is that you must decide for yourself.

When I looked up the word healthy according to Wikipedia, I was promptly given the definition of the word health. Part of that explanation goes as follows: In 1986, the WHO, in the Ottawa Charter for Health Promotion, said that health is “a resource for everyday life, not the objective of living. Health is a positive concept emphasizing social and personal resources, as well as physical capacities.”

So in determining what is healthy for you and what is not, I offer you this bit of wisdom… that being healthy does not have to be pie in the sky or an un-reachable, unattainable goal. Rather, acquiring and enjoying good health is an achievable goal for many people… even people who suffer with Fibromyalgia and Chronic Fatigue Syndrome! I am a living example of that truth because I once was horribly sick, and of course, sick is the opposite state of being healthy. Thus, the title of today’s post.

(The Health Matters Show audio podcast today is 5 min 14 seconds.)
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It’s not absolutely clear yet whether infection for CFS (Chronic Fatigue Syndrome or ME/CFS) will be proven to come from XMRV or MLV (s) (Murine Leukemia viruses; also called MULV), from both or a combination of some sort. The recent research work (e.g. the Alter/Lo study) that was published in the PNAS report and other reports go a long way toward proving a definite link between these viruses/ retroviruses in test subjects, however the findings only answer some questions, while posing other more puzzling and curious ones.

Here is a description of one of the lead researchers in the PNAS study, courtesy of the Phoenix Rising newsletter, plus more information and opinions:

Who is Dr. Harvey Alter? Possibly the most influential researcher ever to publish on ME/CFS. Dr. Harvey Alter is currently the chief of the infectious disease division of the Department of Transfusion Medicine at the NIH.

More detailed research work is needed. Folks, we’re getting into the big questions and we don’t have all the answers yet, but at least we’re asking the right questions. Surely the answers will come!

Per Cort Johnson, the publisher of the Phoenix Rising Newsletter:

The Alter study provided a strong boost to the WPI’s finding of retroviral infection in ME/CFS. Many questions remain to be resolved including what types of MLV’s are present in ME/CFS and in what types of patients and all the researchers agreed that the Alter/Lo study indicated the need for much more extensive research. All looked to the DHHS Blood Working Group to resolve the essential questions about the virus and we await Dr. Vernon’s and Dr. Racaniello’s take on this fascinating study. More positive studies are reportedly on the way.

Today’s dilemma (per Cort):
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In an effort to provide you with the most up-to-date CFS info, opinions and research, check out CFS Central that yesterday reported the notable findings of the PNAS (Proceedings of the National Academy of Sciences) paper on CFS (Chronic Fatigue Syndrome) and XMRV (Xenotropic Murine Leukemia Virus Related Virus).

It also shed light on a new term that we can begin to learn about, MLV (Murine Leukemia Virus).

But let’s talk about this issue before you leave the Health Matters Show blog. What do you really think? Do you believe there is or might be a connection between CFS and MLV? Let’s explore the waters of NIH’s principle researcher, Dr. Harvey Alter and his work.

There are only 3 retroviruses known to man at this time: HIV, Hepatitis C and now XMRV. The PNAS study published Monday aimed at determining any relationship between CFS and XMRV, however, it did not find it in the patient or control population. Instead the researchers discovered kissing cousins of Murine Leukemia Virus in 86.5 percent of 37 patients and nearly 7 percent of 44 controls.

For now these MLVs are being referred to as CFS Type 1, CFS Type 2, CFS Type 3 and a fourth one that was only found in one control subject. Time and more research will determine the importance of this work and whether we can ascertain a cause and effect relationship between MLV and CFS. There will probably be controversy and confusion for awhile. We need to understand the implications of these findings for the 1 million US-affiliated CFS population and the 17 million afflicted people worldwide.

…doesn’t mean that this retrovirus doesn’t cause CFS… Since the host’s DNA becomes inextricably intertwined with a retrovirus, infection lasts for life. Besides, as noted in both the Science study and the PNAS study, finding this retrovirus in the blood is difficult. In fact, Emory University scientists who injected XMRV into macaques this past spring reported that even when the virus was undetectable in the blood, it thrived in the reproductive organs as well as the spleen, gut, bladder, lung, liver and lymph nodes.

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If you didn’t take the time to do it yesterday, I encourage you to check out all of this great CFS info and the full article at CFS Central by Mindy Kitei. (*The address is hyperlinked above- just click on it.) It is an accurate, well-written reporting. See the latter part of the article detailing some of the history of CFS beginning in 1984, including some of the response from the former head of CFS research at the CDC for twenty years, Dr. William Reeves. (He retired in February 2010 from that position.)

Whether MLV turns out to be a “cause” of CFS or not, XMRV and MLV are important areas of investigation. Thank goodness and finally, research is moving forward to answer the big questions about this horrid and prevalent illness!

Thank you. I encourage you to leave your comments below. Take a moment to answer the questions I posed earlier plus these queries, too: Do you think there are many representations of CFS, Chronic Fatigue Syndrome? Are you affected differently than other people whom you meet?

Cinda Crawford, host of the Health Matters Show
“Getting you the CFS Info and discussing your important health matters.”

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Per ProHealth’s newsletter today… we have validation of XMRV at last!

At 3:00 pm Eastern time on Monday, August 23, the National Institutes of Health held a special telebriefing for the world’s press to announce publication of the long-awaited article by NIH, FDA, and Harvard Medical School researchers Harvey Alter, et al. It reports evidence of murine leukemia virus-related viruses (MLV) in the blood of 32 of 37 CFS patients tested. (XMRV is one of several variants of the MLV family of retroviruses, and the findings clearly support the WPI team’s Oct 2009 paper in Science, the researchers stated.)

For more of XMRV’s backsstory and more XMRV info, see Mindy Kitei’s report at CFSCentral.com – The FDA/NIH/Harvard ‘XMRV’ study: The same thing, only different.

The Alter, et al. article (Detection of MLV-related virus gene sequences in blood of patients with Chronic Fatigue Syndrome and healthy controls – PDF), which had been under strict embargo, was posted online August 23 by the Proceedings of the National Academy of Sciences (PNAS).

Okay. It’s time to get a bit excited! Let’s congratulate everyone who has had a hand in this science so far.

THANK YOU!
Cinda Crawford, host of the Health Matters Show

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Dr. Charles Lapp of the Hunter Hopkins Center is conducting a Phase II Drug Study on Droxidopa (Northera). I encourage you to read through this if you are interested in checking out the work of Dr. Charles Lapp -or- if you have an interest in the symptoms called orthostatic hypotension, orthostatic intolerance or you have erratic low blood pressure problems.

In a goal of full disclosure, Dr. Lapp was one of my physicians some years ago. He’s a great doctor and researcher for CFS (Chronic Fatigue Sydrome) and FMS (Fibromyalgia). He is located on the south side of Charlotte, NC, at the Hunter Hopkins Center. He has done a lot of work with these types of blood pressure problems.

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Here is the full news alert regarding Chelsea Therapeutics per GlobeNewswire:
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People who suffer with Fibromyalgia or Chronic Fatigue Syndrome often say that they have brain fog. That term may need more clarification if you’re not familiar with it. I define brain fog as “your brain trying to think through mud.”

Sometimes, with great effort, you can do it, although you may not feel confident about the results and the effort may exhaust you. Other times you’re not sure about your reality or your effort. Alas, the world feels confusing, challenging and effectively unmanageable.

Even with all those characteristics, brain fog is a common characteristic of both illnesses.

(Podcast audio is 6 minutes 13 seconds)
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As you try to find a way to heal from Fibromyalgia (a.k.a. healing Fibro) and/or Chronic Fatigue Syndrome (a.k.a. healing CFS), don’t be afraid to look at your emotions, your sacred spirit and recognize the connection that your mind has to your body, especially in terms of mindfulness. Each of these things can be incredibly important once they’re considered to be parts of the same puzzle. (See video below.) *Mindfulness can help you manage your symptoms until you get well.

As you study how to get well from Fibromyalgia and Chronic Fatigue Syndrome, don’t just think that it’s important to address the physical process only. Yes, suffering feels very physical, but it is also mental, emotional and often spiritual combined.

1) Think of how often you become irritated when people make no attempt to try to understand what you’re going through.

2) Think of how much better everything would be if you didn’t get emotional or upset. Think of how that would help to keep your body, mind and spirit more stable.

3) Think of how mentally difficult it can be to drive the car or navigate traffic.

4) Think of how spiritually challenging it can be to stay above the fray of petty, back-biting people who don’t necessarily have your best interests at heart. Emotional situations often go hand in hand with spiritual challenges. And it seems like they show up when you don’t feel like dealing with them at all!

The doctor in the video below talks about studying mindfulness in an effort to control pain and chronic illness. He’s right. No matter your shape, health or time situations, it is possible for you to learn mindfulness and be able to handle all aspects of your illness that much better. If you practice mindfulness, healing CFS and healing Fibro will be that much easier because you’ll be handling every part of the process that much more skillfully! (Isn’t that part of the definition of success?)

Check out the following video by Steven D. Hickman, Psy.D, who talks about the success that a lady with Fibromyalgia had after learning mindfulness.
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When it comes to the issue of Fibromyalgia and toxins -or- CFS and toxins, we (mankind) do not know what we’re doing, but there is clear indication that toxins do play major roles in whether you get sick with this type of illness or not. Toxins may be a silent contributor to your getting sick.

For other people, toxin exposure is an outright known problem because they are forced to deal with full blown cases of environmental illness in addition to all of the other symptoms of Fibromyalgia and CFS (Chronic Fatigue Syndrome).

Take a quick look at the video below which features Susan Shaw, an internationally recognized marine toxicologist, author and explorer. She is specifically talking about toxins in the water from the Gulf Oil spill. This is a frightening reality that we will be dealing with for years to come! Then continue on to the last part of this blog post for the further discussion of Fibromyalgia and CFS, plus another shocking video, which carries an eerie warning.

Susan Shaw, an internationally recognized marine toxicologist, author and explorer, shows evidence the toxic Gulf of Mexico oil slick is being kept off of beaches only at devastating cost to the health of the deep sea.

Let me give you an example of a case of Fibromyalgia and toxins and how the toxins can hurt you…
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Sunday Sharing has been a Sunday segment of the blog in which I could share my heart and what I was observing in life as I was helping people feel better. That often included special music, photographs, videos, writings, musings or whatever fancy flitted pass my observance. Butterflies, anyone?

I’m happy to continue to post Sunday Sharing once in awhile, but I won’t be doing it every week from now on. I have quite a few projects in the works… projects meant to fulfill my dreams of helping people feel better and enjoy their lives that much more. If those projects and dreams are to come to fruition, I feel the urgency of concentrating my efforts towards those goals.

I encourage you to do the same, but in your own way. Concentrate your life and efforts toward healing. Aim for the projects what will do you the most good. Read about healing. Join in endeavors that will help you heal. Concentrate on what it’s going to take to feel the best that you can in life.

You will benefit. Your family, your job, your life… every aspect of you will continue to move forward if you work to accomplish your goals.

Best wishes. I remain your friend and health coach who is helping people feel better everyday!

Happy Sunday Sharing! Cinda Crawford

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When I was so sick, all I thought about was how to get well from CFS, in other words, healing CFS. The very thought of not getting better from Chronic Fatigue Syndrome was unfathomable, even during my darkest days. Today, I find it sad to hear many people ‘not talk’ about healing CFS.

Instead, it’s more common to hear people say things like “People don’t get well from CFS,” or “I’m doomed to be sick for the rest of my life.” Whether that is a conscious attempt at garnering self-pity or not, maintaining that type of thinking can be unwise and downright dangerous! So stop talking like that to yourself, if you really want to get well.

Doctors who know better will tell you that people do get well from CFS. Some people must maintain a few restrictions or limitations, but consider themselves otherwise pretty healthy. Others are able to resume active lives. A lucky few are able to live to the max, virtually full throttle, Katie bar the doors.

The Health Matters Show today wants to encourage you to believe that healing CFS is just as much a possibility for you as it is for anyone else. (No matter how long you’ve been sick. I was very ill for fifteen years before I got better.)

Stick around and listen to the Health Matters Show audio podcast today. I explain more of what I mean by healing CFS and I’ll even tell you how to heal and get well from CFS…

(Audio podcast is 10 minutes 52 seconds.)

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Whether you’re talking about the CDC (Center for Disease Control) (Did I say coverup?), the NIH (National Institutess of Health or the FDA (Food and Drug Administration), which are all involved in the exercise of validating or disproving the link between the XMRV retrovirus to CFS, you have a full plate of (so far) a “stinky” mess. As far as we the public knows, there is no conclusion. We’re at a standstill and continue to wait for word of an outcome.

I am reminded of the ole’ CDC coverup and switcha-roonie that they pulled a few years ago with millions of research dollars mis-spent and diverted from the cause of understanding and researching Chronic Fatigue Syndrome. It’s hard to forgive them… .

And because of that history, I urge you take a few moments to watch the following video about the past documented CDC Coverup. It’s important and it comes up in the second half of this post.
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Whether we’re young people, middle-aged or old, we’ve all felt guilty because of personal actions that we’re not so proud that we did. Today let’s consider for a moment what role guilt and shame may have had in causing your chronic illness. More than you may realize, it could be a really valid concern particularly if you’re a teenager and a victim of peer pressure or you instigated peer pressure on someone else.

(Hint: Being teased and being the victim of peer pressure is a ’soul wound’ that many people cannot ever recover from without getting specific help.)

Today’s young people case in point, Skye Dailor

If you’ve been around Chronic Fatigue Syndrome long enough, you remember that it’s been twenty years since 14 year old Skye Dailor took her life because of how she dealt with peer pressure and being teased about the illness. (Please read the rest of my thoughts.)

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In this Sunday Sharing segment of the Health Matters Show, I hope you take a few minutes to watch and listen to the Shadow of Your Smile knowing that God truly is smiling right now. This presentation features guitarist and artist Michael Marc Zanabili. With his nimble fingers playing this magnificent song, he easily shows us his skill, his passion and his artistry. Like Michael, I encourage you to live your life in such a way as to be as happy and healthy as possible. Show the world your contributions and your great love. Know that God is smiling at you, with you and on YOU!

May you find renewed health, happiness and eternal blessings, Cinda

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When we think about those people who exhibit survival skills, super people come to mind. No average, everyday person is automatically good at being a survivor. (Hint: It can be an acquired skill.)

Case in point, the stars of the Survivor tv show almost always seem to be a bit super-human both physically and mentally (at least manipulatively). Those qualities enchance their chances of becoming the season’s winner. I encourage you to think differently about yourself when it comes to your own survival skills. To survive and conquer Fibromyalgia (Fibro or FMS) and Chronic Fatigue Syndrome (CFS), you don’t need to be super-human. Only resilient, smart about your decisions and brave.

On the Health Matters Show podcast today I’ll tell you:

1) Why you are still sick,
2) Why this approach that I’ve mentioned works well, and
3) How you can be successful in acquiring your own survival skills.

And you won’t have to get on the survivor tv show to learn these things either! Just click on the audio button below and listen. Afterwards, I encourage you to leave a comment to this post if you’re succeeding at the goal of getting well. Tell us how you’re doing it. Tell us how you’re virtually starring as the lead in your own reality survivor tv show. YIPPEE!

Or tell us, too, if you’re having a tough time succeeding at your personal wellness goals. Those stories are valid, too, and need to be told.

So truth time… when you get down to the things that really matter, what kind of a survivor are you?

(Audio podcast 9 min 7 seconds)
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