It’s happened again that some non-seeing, unknowing, and non-advised person who should know better has stated that Fibromyalgia isn’t real. I’m writing this post today because I want to say more about the person and this explosive issue than simply advising you of their existence. Folks, the “Fibromyalgia” situation becomes more untenable and infuriating by the day. I’m not the only person who feels this way.
The problem arises because of:
- People who can’t see the legitimacy that something really important is going on medically, when the Fibromyalgia patient population in the US alone is estimated at 6 to 10 million people. Simply, they must be in a state of non-seeing. At the least, they are certainly in a state of denial.
You ask, “How can they not see what is so obvious?” I suggest that it must be because of the wart on the front of their nose has become unrecognizable. They see it all the time and their brains have blocked it out of their visual image of the world. Maybe they saw the wart once, didn’t like it or know what it was about, feared it at some unconscious level and/or simply decided to ignore it. Maybe it would go away… maybe they could avoid dealing with it. In very simple terms, they do not or cannot see what’s in front of them as Fibromyalgia, even though the situation is apparent to millions of other people all around them in the world.
Note: sometimes friends or loved ones can have this attitude, too.
- Medical doctors who really don’t make an effort to know their sick and hurting patients who come in the door with symptoms of Fibromyalgia. These doctors surely must be non-advised that if any of those patients meet the criteria for Fibromyalgia, they have a duty and an obligation to give them the diagnosis. The American Rheumatology Association agrees, insurance companies agree, and even the Social Security Administration supports such a diagnosis. *Research these issues more at Get Well Health.
- Individuals who are not aware of Fibromyalgia as being a legitimate illness are simply unknowing. We can certainly understand and put up with people in this group the most. Obviously not all of us know about every illness in existence today.
For people within these three groups, send them to my page on Fibromyalgia and all of the linked and referenced websites there. Surely there’s more available than they already know about or they wouldn’t have such flippant, non-caring and non-plussed attitudes about a very serious medical condition!
As I leave you today, I suggest that we in the Fibromyalgia community begin to prepare now for Fibromyalgia Awarness Day 2010, May 12th. Certainly we can begin to build a sense of urgency about it now. Also we have a duty and an obligation to spread the word about the legitimacy of this horrible illness. Don’t tolerate the doctor I mentioned above. And don’t put up with such nonsense.
PS- I became aware of this doctor’s opinion through a Facebook group that I belong to entitled, “Sufferers against Dr Crippen’s “Fibromyalgia-Whatever That Is.” You can find it and me on Facebook (as Cinda Crawford) or you can access his article here. (Get past the tarot card reading video and he has quite a bit to say… just none of it good.)
Please leave a comment to this post below. Then, send this information on and on and on. We all need to keep spreading the word about Fibromyalgia. And if you have any great ideas about how to create more Fibromyalgia awareness for Awareness Day, share them, too. I’m planning on doing a BlogTalkRadio Show and working out the details as we speak. If that interests you and you’d like to attend, comment below and tell me that, too. I would welcome your suggestions about how we can publicize the event within your community and sphere of influence.
Thanks so much and have a great day, Cinda Crawford
Host of the Health Matters Show
Anyone walking this earth and having the slightest interest in Chronic Fatigue Syndrome (CFS), Myalgia Encephalomyelitis (ME) and CFSME has heard the rumblings and is confused about the science battle over whether XMRV exists as any kind of cause of these illnesses.
First we had the great report from the Whittemore Peterson Institute (WPI) that XMRV had been linked with CFS. That’s good. That sounds like we’re moving forward.
Now we have 4 reports from the UK saying there is no link. That’s bad… or is that good? (Hint: it may just be bad science!)
It turns out that the conclusion of the question about the involvement of XMRV will probably have to wait awhile because the UK experiments were not done in the same fashion and, therefore, they don’t yield comparable results.
Check out Mart Schweitzer’s new blog post at Slightly Alive and then read this posting sent recently to the Co-Cure folks… .
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I heard Joan Borysenko speak again recently. She is a fascinating lady and author. Her book and DVD, the Power of the Mind to Heal, will surely be required information for all those folks who want to have me work with them one-on-one in the healing process.
She talks about how the power of the mind is an incredible tool in life. Your mind has the capacity to keep you stuck in your current reality or move you forward!
I’ve decided to put this book on the “suggested” reading list for the Learn How to Healyourself membership series that’s coming up shortly. (The whole course is almost ready!)
I encourage you to go ahead and pick up your copy of Joan Borysenko’s book or DVD. The DVD is listed below. Find the book in my Amazon store in the tab above or to the right under Cinda Recommends.
As you contemplate how to heal, please don’t let fear of the unknown stop you. Instead, be brave and know that all things are possible. Like beauty, health can be in the eye of the beholder, so to speak.
Okay, now answer this question and the ones that follow: How brave are you when it comes to stepping out into the future?
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Because there’s a common belief that a human being is more of a spirit walking this earth, a spirit which is simply clothed in human flesh, we’re looking closely today at the issues of mind, body, spirit and how principles that apply to this type of thinking can help us get healthy again.
Now, believing we’re spirit is not such a far out concept, if you keep in mind that each of us is made of components of mind, body and spirit. We happen to physically live in flesh. You know how that flesh can be unforgiving when it comes to how you suffer with a chronic illness, one like Fibromyalgia or Chronic Fatigue Syndrome.
Example: The body’s skin covering eventually sags as skin cells are not as robust and collagen and hormones are less plentiful. The body can allow infection to take hold, if the blood and immune system are not as capable of fighting off invaders. In time the body has trouble regulating itself and being functional and capable. It breaks down eventually, allowing old age to creep in and physical death to occur.
This fact partly can be attributed to the opposing nature of body vs spirit… .
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For someone suffering with Chronic Fatigue Syndrome (CFS), a really, revealing reality check would not only include looking at what we know about symptoms, but also figuring out how to reverse the illness and how to get well.
The whole thing sounds like a whoppingly big task and it is, as evidenced by all of the back and forth controversy around issues like the XMRV retrovirus research. But hang in here just a minute, because there’s more to this.
Before you can even think of getting better, you must figure out what your body is lacking and what it needs to perform at its best again. (If your mind/body/spirit had everything it needed perfectly, you wouldn’t be ill.)
Most people suffering with CFS find such a comprehensive task too daunting to attempt. They exhibit signs of immune, endocrine, neurological abnormalities and more. They are too tired and too sick. But we’re not speaking of the specific things that are amiss. What we’re talking about looking at today are the big heading items: What’s Wrong With Me, What Can I Do About the Illness, etc. Luckily, it is not impossible at all to examine such issues and I’ll tell you why…
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So far it is not proving to be an easy road confirming a conclusive Chronic Fatigue and XMRV relationship in the latest research, according to the CFIDS Association of America. Most people want to believe that their is some type of viral or retroviral link between XMRV and Chronic Fatigue Syndrome to help legitimize the illness and point to a verifiable cause, but alas, another study provides no such proof.
A study published Feb. 15, 2010 in Retrovirology reports results from XMRV tests using PCR and viral neutralization assays on samples from 170 CFS patients and 395 controls.
To keep abreast of the latest results on this controversy, go to the CFIDS Association website and this page. They promise to keep you informed about the latest developments.
Plus, they are hosting a live webinar this Thursday. See the details below and sign up today. This is a great way to stay informed about what is happening.
On Thursday, Feb. 18 at 2:00 p.m. (Eastern standard time), Dr. Vernon will present a 90-minute seminar over the web (“webinar”) about the Association’s research program and the six studies we currently fund. She will put the latest findings into the context of a dynamic, multidisciplinary approach to studying CFS. Advance registration is required.
Cinda Crawford, host of the Health Matters Show
It’s important that you do a Fibromyalgia Reality Check, because… whose job is it to figure out what’s going on with you and to figure out the illness… if not yours?? Like the old game show, This Is Your Life we’re talking about This Is Your Health and your body. Both have been torn apart by pain, muscle aches, brain fog and countless other symptoms.
You need to get real about this and figure out what you can do about your symptoms not just endure them. Now that’s a real reality check.
If you sit around and wait on scientific researchers to tell you what’s going on in your body, you may never discover the right answers or, at the very least, you’re going to get the answers that “they” want you to hear. And, chances are, you will continue to be sick. So let’s begin with this newly-recognized job of yours.
To do this effectively, you need to…
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If you come down with Chronic Fatigue Syndrome, the first thing you want to know is the cause, but how do you determine the cause when the illness’s myth, fiction and reality are all so obscure, so complicated and so mixed up together?
Case in point, most of us involved in any fashion with Chronic Fatigue Syndrome (CFS) can recite the signs and symptoms of the illness by heart.
However, the issues of a cause and cure continue to be debated for more than the twenty years that most people have known about this illness. At this point in time, I refuse to believe that there is one single cause to Chronic Fatigue Syndrome. Here’s why… .
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The Health Matters Show is now on Kindle.
I’m guess we’ve finally arrived because the Health Matters Show is now on Kindle! This is fun. I invite you to check it out if you own one of these fantastic little devices, I invite you to check it out. Kindles are great.
Or- If you don’t have one yet, check out Amazon’s latest offer for buying a Kindle. They have come down in price. *I really appreciate you accessing your Amazon.com links from here, because I make some income if you make a purchase. That helps keep my enterprises going. 
Thanks, Cinda Crawford
Host of the Health Matters Show
It has taken a long time for this fruit to ripen, but thanks in large part to valiant efforts of the IACFS/ME, the International Association of CFS/ME, and influential members of their board, a major change is coming to the Center for Disease Control (CDC) where the efforts to study and make guidelines concerning Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME) are controlled.
Hallelujah! A leadership change at the CDC is coming!
Just announced today, Februrary 3, 2010,
Dr. William C. Reeves will be leaving his post as head of the CFS program at CDC as of Feb. 14th to accept assignment as Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office. Dr. Elizabeth Unger will serve as Acting Chief, Chronic Viral Diseases Branch, which includes the CFS program.
It is no secret among CFS folks and the people who support us that we have not been pleased with the leadership of Dr. William C. Reeves. Hopefully, with the introduction of Dr. Elizabeth Unger at the helm, we will witness advancements and major leaps forward. Finally, we should see an end to the two decades of virtual stonewalling at the CDC.
Thanks, Cinda Crawford
Host of the Health Matters Show
Just a few days ago, Dr. Judy Mikovitz made a lengthy presentation about XMRV, the suspected new retrovirus and possible causal agent for Chronic Fatigue Syndrome. The HHV-6 Foundation and ProHealth.com sponsored this event.
Here is the free link to the video, plus there are several other videos on Vimeo concerning this subject of XMRV research. The videos are a bit hard to hear, but they’re worth your time in viewing them. Turn up your speakers and listen -or- mark them to come back to later.
Hopefully, the major questions about the connection between XMRV and Chronic Fatigue Syndrome are not going away anytime soon because researchers will thoroughly investigate them and the long term health implications.
I’m looking forward to solid, verifiable data and I think we’re going to get it. Thank goodness for brave researchers like Dr. Judy Mikovitz and the people and organizations that support her like the HHV-6 Foundation and ProHealth.com!
Thanks, Cinda Crawford
Host of the Health Matters Show
Most of the time when a person is watching a research drama (like the connection of the XMRV retrovirus and ME/CFS or Chronic Fatigue Syndrome) unfold with opinion (s) and contradicting research on both sides, that person is quiet.
Not so with me any longer, because I’m not sure we’re comparing apples to apples. To begin this discussion, read about this week’s happenings and what we can expect next week. Then let me know what you think about this opinion piece and my “publication” concerns:
“On January 22, Dr. Judy Mikovits, PhD, director of research for the Whittemore Peterson Institute for Neuro-Immune Disease, conducted a 2½-hour XMRV seminar in Santa Barbara that was streamed live online to an audience of more than 1,100,” reports ProHealth, plus a video on this event is due out early next week.
Sponsored jointly by the HHV-6 Foundation and Prohealth, this presentation plus a question and answer session covered many areas evident in this debate.
Per information at ProHealth.com:
- a) Interesting details, clarifications, insights, and plans that patients and researchers have speculated about since October 2009 (since discovery of the XMRV retrovirus in ME/CFS patients’ blood)
- b) The latest non-confirmation effort by UK researchers, as published in PLoS, the Public Library of Science and a non-profit organization.
Now, to highlight what could be amiss in this situation, I’ve heard that…
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Even though I work in the healing business of helping people heal, I shy away from calling myself a healer. I believe that God is the ultimate healer. You and I are capable of little without His help.
Still, every once in awhile, people will tell me that what I do is nothing short of incredible. I guess that’s because SCH is so different and the process works well.
Decide for yourself with the following 3 truisms, plus something I’ve discovered… the fact that I’m not the only person who thinks this way or is saying these things:
Listen to the 10 minute 9 second audio podcast by pressing the small right-facing arrow on the bar. (Or, feel free to download it.)
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In an effort to create greater worldwide awareness to ME and CFS young people, I would like you to call your attention to an appeal that was listed in Co-Cure Listserve this week from Jane Colby, Executive Director, The Young ME Sufferers Trust (of the UK), which is affiliated with the Thymes Magazine and the Thymes Trust. In a heartfelt appeal she asks people to forward their unused Christmas cards. Her note goes as follows:
(Please keep reading. Your action can make a difference!)
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This time of year we’re all looking for ways to meet our new year’s resolutions and fitness and nutrition DVDs may be a way to help us accomplish our goals of having and using the best health information. Amazon.com is now making a special deal until January 24th. They’re featuring special ones at
50% off!
Click the Amazon.com link above. You’ll find great deals.
(Of course, they offer you more DVD choices than just nutrition or fitness health information and how-to videos. I just clicked the link and there are tons of regular movies, too!)
I confess that I like to shop places like Amazon.com because that means I don’t have to make so many trips away from home. Just like you, I have a lot of “things to do” and not having to pound the pavement in the shopping center really appeals to me! It’s one of my little secrets for conserving time and energy that allow me to get a lot of “stuff” done! Do you remember me talking about Dr. Charles Lapp’s suggestion of using the envelope method for managing you daily energy quotient? If you don’t, check it out.
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In the end, it doesn’t matter whether you must stay close to home because of health reasons or you simply choose to shop from the comfort of your home computer or Internet-ready telephone, this is an excellent way to make good use of your time and energy. We all must be smart and save our energy dollars as well as our physical dollars for what really counts… the goal of getting well!
Plus, with time and energy at a premium, I encourage you to take a look at this offer and make sure you’re not missing something that you’ll kick yourself in the pants for not having taken advantage of a month from now.
I’m wishing you a good, health and resourceful day,
Cinda Crawford, host of the Health Matters Show
“A place for great health information every day!”
It’s happened again that some non-seeing, unknowing, and non-advised person who should know better has stated that Fibromyalgia isn’t real. I’m writing this post today because I want to say more about the person and this explosive issue than simply advising you of their existence. Folks, the “Fibromyalgia” situation becomes more untenable and infuriating by the day. I’m not the only person who feels this way.
