Fibro blog Chronic Fatigue Syndrome blog How to heal Fibro and CFS

A new head of ME/CFS Research work has been appointed at the NIH, National Institute of Health, Susan E. Maier. She will head this massive arm of government research in charge of finding out all about Chronic Fatigue Syndrome. Read more about Susan E Maier below and send out your greeting to her, too, if you so choose. This could be a good move for research and ME/CFS!

The National Institutes of Health (NIH) Office of Research on Women’s Health (ORWH) is responsible for coordinating the research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) across the NIH institutes, centers and offices. NIH supports research on the etiology, diagnosis and treatment of ME/CFS and engages in activities that sustain focus on this research area, since there is no known cure or preventative treatment.

I am pleased to announce that the ORWH has recently appointed Dr. Susan E. Maier as the Associate Director of Special Projects. Dr. Maier will serve as the NIH contact for ME/CFS activities and will replace Dr. Charles Wells as the Chair of the Trans-NIH ME/CFS Research Working Group. Dr. Maier has experience in brain development and teratology (the study of abnormalities of development), with an emphasis on the effects of alcohol on embryonic and fetal brain development, including sex differences. Dr. Maier can be reached at Susan.Maier@nih.gov or 301-435-1573.

I would also like to thank Dr. Wells for taking on these responsibilities on behalf of the ORWH and for his dedication to coordinating activities in support of the ME/CFS research over the past several months, following the retirement of Dr. Dennis Mangan.

Please join me in welcoming Dr. Maier!

Per, Janine Austin Clayton, MD
Acting Director, Office of Research on Women’s Health,
Office of the Director, National Institutes of Health

Thanks so much for dropping by the Health Matters Show. Find your ME/CFS research news here.

Cinda Crawford, your host

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Wylie Vale Jr., a professor at the Salk Institute for Biological Studies in La Jolla, CA, led the team that discovered the brain hormone that we now call the stress response hormone. At age 70, he is now dead, but research continues surrounding this important work.

“Dr. Vale discovered CRF (corticotrophin releasing factor) in 1981 and the next year found a second hormone, called the growth hormone releasing factor, or GRF (growth hormone releasing factor), which had also eluded the older scientists,” per Nicholas Wade of the NY Times.

Kissing cousin to CRF is CRH, corticotrophin releasing hormone. “Two hormonal abnormalities—a CRH deficiency and the resultant cortisol deficiency would each contribute to the overall symptoms and course of CFS.” You may search Google for additional information and work with the term I used, “crh hormone + CFS”. Be sure to surround the term with quote marks. *Note: it’s possible to have too little circulating cortisol, too much or an imbalance of this important hormone. Any abnormality can cause unpleasant, hard-to-balance symptoms.

The research team found that on average, levels of cortisol, a hormone produced by the adrenal gland, were lower in the blood or urine of the 30 CFS patients studied than in the 72 normal volunteers tested. The body secretes cortisol in response to stress. Physicians have long known that even a subtle deficiency of cortisol can be associated with lethargy and fatigue.

(Today’s audio is 8 minutes 28 seconds.)

We’ve addressed CRH deficiency and how it may contribute to symptoms of CFS. Now let’s look at GRF (growth hormone factor). Why? Because there has been quite a bit of research done on Growth Hormone and it’s connection to Fibromyalgia. Two leading researchers from Oregon State Health and Science University, Dr. Robert Bennett and his wife, Sharon Clark, are two proponents of this important connection. I met them over ten years ago when I invited them to speak at a Fibromyalgia conference in Roanoke, Virginia. With a little digging, you can find lots of related research projects on this important connection.

Any way you slice the work of Wylie Vale, Jr., he was on to something big. We appreciate his contributions to science and to our world. When “our” hormones are out of balance for whatever reason, we (human beings) don’t feel well and our overall health can be compromised. Plus, staying chronically ill can make it tough to keep the stress response hormone equation balanced.

Cinda Crawford, host of the Health Matters Show

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As most of you know, I consider myself recovered from CFS. Thank goodness! It’s a tough, cruel illness. CFS can be one of the toughest task-masters ever. Recently I came across the words of Jody Smith HERwriter and her account and testimony of her recovery from CFS. It’s real, tough but not impossible. Find out how to get on with your life like Jody and I did.

Listen. Learn. Comment. Consider the possibility: to RECOVER FROM CFS IS POSSIBLE. If you don’t give up hope, one day you can share your testimony with the world, too!

(Today’s podcast is 7 minutes 15 seconds.)
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To start the new year off right, here are some 2012 CFS updates. I hope they inform and help you in your efforts to decide what you want to to do to move forward with your illness. As more updates become available, I’ll surely will forward them on to you. *That’s one great reason to sign up NOW to receive the Health Matters Show RSS feed. (*Do so HERE and you’ll get notices in your in-box all year long! And/or sign up with i-Tunes to receive our Friday, weekly, downloadable podcast!)

It seems like there are almost always things happening in the world of Chronic Fatigue Syndrome or CFS. Even so, most people are looking for the wham-doozie news, the we-have-a-cure front-page, barn-burner notice or at least a we-know-the-cause headline! That’s not the case yet. Even so there are people writing and talking about this illness in major ways.

Listen to the podcast and then check out the links below. Keep abreast of the latest news if you can. 2012 might turn out to be a fantastic year!

Thank you, Cinda Crawford
Host of the Health Matters Show

(This podcast is 6 minutes 50 seconds long. Enjoy!)

Link 1: Letter from Llewellyn King

Post in Open Salon, ME/CFS: Into 2012 Without Cure or Cause

Link 2: Newsletter info from Dr. Charles Lapp

December 2011 Newsletter on the topic of a) New Research Opportunities, b) Pain Meds are a problem, c) Disposing of medications, d) Hunter Hopkins Facebook page, e) Ampligen Update and more!

Link3: The wisdom in and need for separating CFS from ME.

Worcester News Letters.

We would join the Worcestershire ME Support Group in welcoming the £1.6 million from the Medical Research Council (Sufferer welcomes ME research funds, Worcester News, 30 December 2011, if it were to be spent on biomedical research and for people with M.E. (Myalgic Encephalomyelitis). Sadly, neither is accurate.

Firstly, some of the projects, said to be, are not biomedical and are led by researchers who do not believe that M.E. is of physiological origin. Secondly, it is unlikely that any conclusions drawn from these studies could be applied to people with M.E. because, contrary to common assertion and repetition, M.E. is not the same as Chronic Fatigue Syndrome (CFS) and attempting to apply recommendations for treatment from a different set of people is mostly ineffective and can be potentially harmful for M.E. sufferers.

We shall make no progress until this wasteful expenditure on invalid and unreliable experimental design is no longer tolerated. Precious funding must first be allocated to separating M.E. as a discrete illness from the indiscriminate CFS bundle, as a proper foundation for any work that can be trusted.

Yours sincerely, drjohngreensmith@mecommunitytrust. org
Dr John H Greensmith, ME Community Trust. org

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Thanks to Llewellyn King, Dr. Charles Lapp and Dr. John H. Greensmith for their input on this topic.

Please know that your comments are always very welcomed here at the Health Matters Show. Leave one today. Tell us if you like this kind of post, if you needed the info, if you’ve read it before and, especially, what you’d like to read about in the future.

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The debate rages as to whether ME is the same as CFS and vice-versa and, especially, should they be more correctly termed ME/CFS? How are we mere mortals to know?

Tom Hennessey recently digressed at length to Co-cure forum. Read his expose’ and see if you can come up with a valid opinion, then tell us “why?”. We all would like the final word on this, once and for all. The question is, “Will we get it?” and when.

Thanks Tom Hennessy.
Cinda Crawford, host of the Health Matters Show

PS- the deadline is passed for voicing your opinion to Donna Pickett at NCHS, but it’s never too late to learn about this vital topic that affects us all.
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Keeping a health diary and planning for 2012 may seem like two different objectives at first, but they are quite related if we’re talking about the importance of a health diary and how your planning now to make 2012 your healthiest ever. I always suggest that people keep a health diary. Now that’s not the kind that you necessarily write down everything. Keeping such a work of art at least needs to involve keeping a record of your health with your most important data.

*Please check out the 3 great resources below. One, today’s podcast; two and three are “free” gifts.

If you have Fibromyalgia or CFS and you keep a health diary with the intention of having it be a useful health tool, here’s the information it should include and also why it may be the best and most dynamic thing you can do for yourself “free of charge” in 2012:

• 1) Begin with your name, address and phone number. Put in a note that if anyone finds it, to please return it to you. Your life and health depend on you having access to your health diary. (Here is one online resource.)

(Note: you can keep your record on your computer and may feel safer doing so. You can print out sections of it as needed. Either way, this work can be valuable to you now and in the future, when you’re looking back at your illness path, how you walked it and measuring your successes and failures. Otherwise, the who, why, what and when questions can be fuzzy and frustrating! This health diary can be a really useful tool.)

Today’s Health Matters Show podcast is 11 minutes 33 seconds.
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During the previous two programs on Fibromyalgia, I have been encouraging you to think about and determine what is making you sick. In today’s interview we will look at why it so often happens that a major factor can be the stress of a job, family issues or virtually everything in your life! I know when I got so sick, it was all of those things combined.

If you’re suffering with physical stress, you need to take some time off and probably relax.

If you’re being bothered by mental and emotional stress and anxiety, you need to relax because your perceptions about this topic are housed in your mind, but often expressed in your body.

If you don’t relax and allow your system to re-balance itself, you will be headed towards worse illness symptoms of some sort. One person may suffer migraine headaches; the next, a backache. The next, Fibromyalgia or more. Think of the 3-legged stool we’ve talked about so often. Work to balance yourself in body, mind and spirit.

Now, I can hear you, “I don’t have time to relax. It’s two days before Christmas!” Well, I’m here to tell you that you can and should relax. As a matter of fact, time spent in rest and relaxation is a wonderfully positive way to make it through the holidays and start off your new year without feeling that you’re climbing out of the gutter!

Please join me today in welcoming and interviewing Mr. Dan Howard to the Health Matters Show about this topic of Intentional Resting.

(Today’s podcast interview is 18 minutes 2 seconds long.)
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As you and I approach the Christmas season with a goal of surviving it, one thing you may be asking yourself was hinted at last week: if Fibromyalgia Syndrome is not a terminal condition, then why am I still sick? There could be many reasons for whatever answer you come up with. It’s true that some people get over the condition and go on with their lives, while others keep right on suffering. Many people even get worse over time and watch their health decline further! Let’s change that and start now during the Christmas season holiday.

(This audio podcast is 6 minutes 21 seconds)
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Today’s Christmas season broadcast is one of three weeks of presentations when I’m highlighting Fibromyalgia Syndrome. I’m convinced that it is not a terminal condition. Even though it may seem that way when you’re in the depths of the illness, some people do get over it and go on to resume healthier lives.

Unfortunately, other people keep suffering. They can even get worse and watch their health decline further and further into an illness pit that’s hard to climb out of!!

Today, let’s talk about how to prevent staying in the Fibromyalgia rut, particularly at this time of year…the holiday, Christmas season! No one wants to feel “bad” and no one wants to be the drag on their holiday party. Fun and good times are coming!

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DISCUSSION TOPIC:
Association of XMRV with CFS. What does it mean when there is no consensus opinion about an issue like the relationship of XMRV and Chronic Fatigue Syndrome?

Either there is or there is not an association of XMRV with CFS. Read below to view the recently published opinion of Dr. Paul Cheney of The Cheney Clinic in Asheville, NC, who suggests there indeed may (still) be such an association. [Take note of his explanation of NGS (Next Generation Sequencing) testing and how it is more accurate than PCR technology.]

Thanks so much, Cinda Crawford (info below)
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If you’re like me, your life is busy, your health demands that you pay attention to your self quite a bit, but even so, you would really like to know: What’s Happening with CFS News? Today you can find many resources here. Before you do, let’s talk a minute about where you see yourself.

There are four discussion points today plus the link to the CFS Advisory Committee page with the 28 videos… .

Today’s audio podcast is 5 minutes and 20 seconds
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It turns out, there probably was a contamination link in the WPI studies documenting evidence of XMRV as a cause of Chronic Fatigue Syndrome (CFS). Subsequent evidence points in that direction. That doesn’t mean all hope is lost in XMRV playing some role in causing CFS or any other illness. Yet it’s highly likely that a true problem existed within the initial research because of contamination in the laboratory studies at WPI.

Our job is to continue to have hope that “science” does its job well. Let’s face it; none of us want erroneous results. None of us want errors to be made that conjure up false findings and anyone being able to ultimately say, “See. I told you Chronic Fatigue Syndrome isn’t real!”

I urge you to read part of the text below and then check out the entire post at Phoenix Rising. The authors have presented this vital CFS information in a straight-forward format that is not difficult to understand:

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As I sit down to think of all the things in my life that I am thankful for, I’m also narrowing it down to what may appeal to most people who suffer with Chronic Fatigue Syndrome, Fibromyalgia or other illnesses. Now, that may seem odd, but I’ll share with you why I think it is important to look at this topic. One, it’s Thanksgiving, a time when we’re stuffed full of good food and probably had a pretty good day sharing our bounty with family and friends. And two, it’s time to be grateful for what we have. We’re alive, we have time to grow and become the people we really want to be and with the growing, doing and becoming, we can look forward to a life that carries its own rewards.

Let me explain a little more. As strange as it may sound at first,

“What?” you say. “Are you nuts?”

(This is short audio today, 2 minutes 48 seconds. I hope you listen to it & read the rest of the post. Then, leave a comment for what you feel thankful for. Many blessings, Cinda Crawford)

Nutt-y maybe, but not nuts. If I had not gotten so ill with Chronic Fatigue Syndrome, I would never have acquired the ability to have the compassion that I do now for people who cancel out on a fun outing (even a Thanksgiving Day meal!) at the last minute because they’re suffering with an unexpected symptom flareup -or- for people who can’t manage a part-time job because they can’t get out of bed for days at the time.

If I had not gotten so ill with Fibromyalgia, I would never have had the compassion to deal with people who have trouble thinking of the right word to say in a sentence, or who insist on telling you about the different “spots” that hurt in their body, but their doctors can’t seem to find out what is wrong -or- treat adequately.

If I had not suffered so many years in chronic pain myself, I would think a chronic pain sufferer might instead be a chronic complainer and not a worthy person to get to know or be around as a friend. If I had not had such a dysfunctional immune system, I might think that people who regularly get sick with cold or flu-like symptoms, etc., (*I know a lady who marks her calendar… . After twenty years, she’s sick for one week of every month!) are putting on airs or possibly are hypochondriacs.

After suffering for so long and now living well on the other side of illness, I can honestly say that I’m thankful for the tough and convoluted path I took to get well. My walk through the valleys was surely challenging. I’m sure yours is, too. Surely there were times when I doubted if I could or would get better.

I can assure you that having compassion and feeling grateful are not only great skills to acquire, they’re a blessing. Taking empty, non-important moments and replacing them with an attitude of gratitude is a blessing worthy of paying such a steep price.

Now, at some time during each holiday season, I give thanks. For each family visit and the shared time together, I give thanks. For each desire in life that I am lucky enough to accomplish, I am elated. For each friend I meet and each person I help, I am humbled, yet bubbling with joy. I feel grateful and I Am Thankful For YOU!

Thank you so much,
Cinda Crawford, host of the Health Matters Show

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The following letter from a doctor was posted and sent to all on the mailing list of Co-Cure.org, a large mailing/member clearing house for information on Chronic Fatigue Syndrome (CFS), ME, Fibromyalgia (FMS or FM), Gulf War Syndrome and more.

I thought you’d find this information interesting so I’ve copied it here as it was posted. Enjoy, Cinda Crawford
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November 17, 2011

Donna Pickett RHIA, MPH
Medical Classification Administrator National Center for Health Statistics -­? CDC 3311 Toledo Road
Hyattsville, MD 20782
Via email: Donna Pickett
cc: NCHS

Re: ICD-­?10 CM & ICD-­?9 revisions for CFS (Chronic Fatigue Syndrome)
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