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
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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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
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
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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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!”
Since Dr. Brian Rothbart first wrote his book, Forever Free From Chronic Pain, I’ve been his fan because Dr. Rothbart helps people learn how to be free of pain. Now, I know that’s quite a statement, so let me explain a bit more.
Dr. Rothbart currently lives in Spain, treating local people and people from all over the world. Because of his ability to really help people, they seek him out.
Foot Structure can be the root of the Problem!
He uses a proprietary method of analyzing a person’s foot structure to figure out the cause of a person’s health problem, i.e. chronic pain, and then provides a method to correct the damage of that foot problem. What’s interesting is the concept in his book and medical practice -and- the success that he has with so many people.
If you are one of the people in this world who endures almost constant chronic pain, this could be for you because maybe… you might find a way to be forever free of pain, too!
You can get a copy of this book by clicking on the hypertext link in blue above or checking the Amazon.com store link in this website in “Cinda Recommends.”
Either way, this book could be a very valuable asset to you. Consider purchasing it, then read about the methodology of the healing concept. You can even sign up for Dr. Rothbart’s newsletter on his website.
Happy health. It is my fervent wish that you begin living without daily chronic pain!
Thanks, Cinda Crawford
Host of the Health Matters Show
“I don’t recommend that any of us eat a lot of sugar and fat, but sometimes in life, we just need holdiay goodies like The Easy Good Stuff.”
This time of year I’m seeking out the recipes of a few goodies and maybe even trying to make some as edible gifts and treats for my friends, guests and my family. However, I believe in making it easy on ME.
Here is a recipe for “The Easy Good Stuff” that I made last night for my husband’s office staff and they are raving about it this morning. It took all of ten minutes and I had plenty to keep for our family’s holiday needs. Now that’s the type of dish I like to slave over in the kitchen, pun intended.
I sent the requested recipe to his office staff via email this morning. Feel free to use it, change it or whatever suits your fancy. I hope you enjoy making and eating holiday goodies, too. Note: lots of different ingredients will work. You can substitute what you like to eat or what you have handy in your kitchen, but the “bark” is what binds everything together and makes this so fast and easy.
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When children and young people show signs of Myalgic Encephalomyelitis (a.k.a. Post Viral Fatigue Syndrome, Chronic Fatigue Syndrome or ME/CFS), that is often just the beginning of a long, tough physical illness. At the same time, they exhibit emotional and psychological symptoms that cause everything in their lives to suddenly be more complicated.
I feel really sad when I see children and young people suffering with a severe chronic illness like ME/CFS , but I also know of the many possibilities for them to begin feeling better. This is a challenge worth your time and effort to pursue.
Trouble doesn’t often begin at birth with an illness like ME/CFS, but more often this particular health challenge occurs years later. Whether genetic components, internal imbalances, infections or some other trauma is the cause has not been determined. The illness may manifest because of a combination of factors. Science is studying this. It’s not the purpose of this blog post to include the reams of material on that subject here now.
Today the objective of the Health Matters Show is to provide you, your child or your young person with the means of learning how to cope with these high degrees of illness in a way that makes life more meaningful and manageable.
See 2 “How to Cope” links below and discover:
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If you’re suffering with Fibromyalgia or Chronic Fatigue Syndrome, pollen and inflammation may bother you in a seemingly weird way… as if your entire system is revved up with allergy symptoms, it’s idling in a fast overdrive gear all the while it’s sitting still in the driveway! You may feel lethargic, but inside you’re quite the opposite. Your body is producing an abundant supply of inflammation and that is not what you want. Instead, you need to find ways to reduce all sources of inflammation. That’s what today’s post is all about.
Allergenic-type reactions in the body include inflammation and often an over-production of mucus. The nose, sinus cavities and, possibly, bronchial linings can swell, feel boggy, and be tough to breathe through. This may cause pain (more swelling and tightness) because your body is producing too much mucus and it’s inflamed.
From Medicine.net: “Mucus” without an “o” is the Latin noun for “a slimy semifluid discharge from the nose.” “Mucous” with an “o” is the corresponding adjective.
…as they say in fencing…
IMMUNE SYSTEM ON GUARD!
With your immune system functioning in a frenzied state of over-production because of allergies, your body increases mucous secretions or inflammation. That increases your histamine response and causes more bio-chemical reactions, many of which also cause symptoms. This occurs in an effort to protect you from whatever enemy your body perceives is a threat, nevermind how miserable you feel during the ordeal.
These allergy symptoms are your body’s reaction to what it perceives and, in most cases, they are nothing to fear. Too bad that the whole process can make you feel so miserable. If you’re not aware and prepared ahead of time for what is to come, a state of panic can set in. Remember… DON’T FEAR. Don’t supply any additional energy or add to your body’s response to being sick in any negative way. Instead… BE CALM. Remain in control.
If you suffer with Fibromyalgia, Chronic Fatigue Syndrome or any autoimmune illness, your body doesn’t necessarily interpret these specific signals even as mildly as I’ve described here. Instead you may feel worse… as if you’re suffering from either a beginning sinus infection, a bronchial infection or an increase of widespread body pain and fatigue. At other times, it may be the opposite: when your body is fighting something else, your Fibro or CFS symptoms abate almost entirely and you’re aware only of the misery quotient concerning your allery/ sinus related illness.
(Note: Whether you have a simple allergy or cold or it’s turning into something worse, it’s up to you and your doctor to decide. Don’t neglect going to see your physician if your symptoms do not abate after a reasonable period of time, if you have trouble breathing or if your fever spikes and neither Tylenol, Advil nor aspirin lower it and keep it in a moderate range.)
Here are 6 more incredibly important suggestions.
They might help:
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Right now people suffering with allergies are experiencing rapid temperature and weather changes: hot, cold, dry, wet, warm, chilly. Rinse and repeat, until you’re holding your head and running to hide in the corner for some privacy to blow your nose for the 25th time today.
You’re probably being bombarded by the dust from the falling leaves and the last of the fall allergen boogie men, ragweed. If you live somewhere that has already had two good frosts, the damage ragweed is causing you may be over with until next spring. However, if fall winds kick up the ragweed pollen into the air, pollen may continue to aggravate your respiratory system and cause your body to produce more allergy symptoms. (And then there’s the dust from the leaves themselves. Dust particles alone cause a lot of allergies…. .)
Regardless of which elements are present, you may still be suffering with allergies now that fall is ending and the winter season is approaching. Your misery could be significant.
Each of us is different. The dust left over from the year before’s holiday ornaments used to bother my mother when she got them out of storage to decorate the tree. It was pretty much a given… Mom would be sick at Christmas time.
So whether your problems stem from dust, pollen allergies, changing temperatures or any of the bacterial or viral infections going around, you, dear one, can be in for lots of sniffling, sneezing, coughing and general achiness if this is even a normal fall and winter season.
So what does that mean to you if you’re already suffering with a chronic health problem like Fibromyalgia or Chronic Fatigue Syndrome?
(15 min 20 seconds. Listen by clicking the right-facing arrow or download now!)
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Many people are eagerly anticipating a definitive test to diagnose Chronic Fatigue Syndrome (CFS). It may finally be here in the form of a diagnostic test that will identify the XMRV retrovirus!
“When we learned that XMRV might have such a high association with Chronic Fatigue Syndrome, we immediately became interested in developing a test. Now, my two friends and everyone else who has suffered from the condition can take testing for XMRV into their own hands” says Brent C. Satterfield, Ph.D., President and CEO of Cooperative Diagnostics, LLC.
To the joy and apprehension of millions, Monday, October 26, 2009, Cooperative Diagnostic announced such a bold step. Cooperative Diagnostics Launches New Diagnostic Test for Chronic Fatigue Syndrome Associated Virus
I say joy because this event has been anticipated as a pure testing breakthrough for so long. Would you believe we’ve been waiting for a CFS test for over 20 years? (And for the test to confirm an infection with a novel retrovirus is truly amazing!)
I say apprehension because now that we will be able to identify anything about CFS conclusively, with it regarded as such a multi-faceted and complicated illness, we’re likely to bring up tens of hundreds more questions. And, yes, probably more questions than answers at first. We’ll have to wait for the outcome to see how this shakes out and exactly what it will mean to the one million Chronic Fatigue Syndrome sufferers, their friends, families and physicians.
The test costs $399.00 and I suspect that you may have a tough time getting your health insurance to pay for it at the very beginning. If anyone acquires such information and experience, please email me and let me know. I want to keep abreast of this important issue and I know that I won’t personally order or pay for this test since I’m now well.
Thanks and best of luck!
Cinda Crawford, host of the Health Matters Show
*Be sure to pass this information on your friends!
I know that many people want to keep up to date with what is happening about the issue of research, etc., concerning XMRV, a newly implicated retrovirus and Chronic Fatigue Syndrome.
Check out this new resource/event for Chronic Fatigue Syndrome that you can put on your calendar for this Thursday. For many reasons, it should be a great information about XMRV. Dr. Dan Peterson will be providing an hour-long testimony in Washington at the CFSAC meeting on October 29th.
The meeting starts at 9am Eastern and Dr Peterson is on at 10 am, which is 9am CST.
Dr. Dan Peterson is the Medical Director of the Whittemore Peterson Institute, the origin/ source of this latest discovery for Chronic Fatigue Syndrome. During more than 25 years of medical practice, Dr. Peterson has become a sought-after internist for diagnosing difficult and complex medical cases. When several patients in Incline Village became ill with symptoms that resembled persistent mononucleosis, Daniel Peterson was one of the first physicians to recognize an outbreak of what is known as ME/Chronic Fatigue Syndrome (ME/CFS). He became a pioneering physician and researcher in understanding the biological characteristics and methods for diagnosing, managing and treating ME/CFS.
I hope that you will take note of this link today and plan your Thursday morning schedule accordingly. I know I want to hear the newest information and do not want to miss anything that Dr. Peterson has to say. This is not only exiciting, but another of the very important developments in establishing the legitimacy and future of Chronic Fatigue Syndrome as a recognizable and treatable illness.
Thank you, Cinda Crawford
Host of the Health Matters Show
An op ed piece by Hillary Johnson published in the NY Times on Tuesday, October 20, 2009, A Case of Chronic Denial, provides up-to-date information about how the XMRV retrovirus may be an integral piece of the puzzle called Chronic Fatigue Syndrome. The piece also recounts some good history of how all of the people who suffer with the illness got to this point in time. It’s quite a harrowing tale.
You may recall that Hillary Johnson authored the powerful book, Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.
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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.
