The Health Matters Show With Cinda Crawford » Chronic Fatigue Syndrome

Do You Have Fibromyalgia or CFS?

Cinda Crawford — Fri, 13 Apr 2012 14:15:03 +0000

The question, Do you have Fibromyalgia or CFS? assumes you have symptoms similar to both illnesses, but you’re not quite sure how to classify what you’re experiencing. Your doctor may even be a bit puzzled.

It’s not uncommon to get a different chronic illness and then Fibromyalgia follows, especially if the beginning illness leaves you sedentary and involves a degree of pain. And on the flipside, it’s possible to get Fibromyalgia first and then (example) CFS, so your illness sequence doesn’t give you a concrete answer. That’s exactly how my illness manifested in earnest when I became so sick.

Some of the same add-on conditions or symptoms often accompany both illnesses, such as being prone to stress, TMJ (temporomandibular joint dysfunction or syndrome), a dysfunctional thyroid (usually low thyroid) and/or HPA axis condition (hypothalamus, pituitary, adrenal axis), allergies, swelling of joints (Arthritis), pain in the limbs, hips, back, shoulders, neck, etc., sleep dysfunction, energy impairment, and immune system irregularities.

(Podcast is 17 minutes 48 seconds.)
Let’s compare the two and really see what is different…

People who suffer with Fibromyalgia tend to hurt with more intense pain and in more places of the body than Chronic Fatigue Syndrome. *If you’re someone who has CFS and you hurt like the dickens, don’t brush off this statement as being false. Instead, consider getting tested for Lyme Disease and Lupus.

Lupus Syndrome symptoms:
If you simply consider Fibro and CFS by themselves and alone, Fibromyalgia is considered more of a chronic pain problem, whereas CFS if considered more of an immune system irregularity condition.

The exception to all this may be people prone to migraine headaches, however “having migraines” is not within the definition of either illness. It is common to hear of people with Fibro and CFS complain of having frequent migraines or “suffering with a new headache pattern”.
- Fibromyalgia also differs from CFS in that for Fibro, a person must have at least 11 of the 18 designated tender/ trigger points active at any one time. Note: that’s how some people do not quite qualify for Fibromyalgia because they don’t have at least 11 of these points -or- their doctor doesn’t know how to diagnose their condition properly. (*One other scenario, their doctor doesn’t “believe” in Fibromyalgia and therefore will not give such a diagnosis to any patient.)
The same “logic” applies to Chronic Fatigue Syndrome because there are still physicians in the world who (1) do not believe it is a true illness, so how can they possibly diagnose the health problem as being CFS? -OR- (2) do not know how to diagnose it, so instead the patients gets three or more additional diagnoses, each one indicating an area of the body that could be dysfunctional.

An example of this can be seen with recurring sinus problems. If I had $10.00 for every sinus infection a doctor diagnosed me as having, I’d be a semi-wealthy woman today. Did I actually have sinus problems? Yes, I did. I took plenty of antibiotics to “prove” it. Today, at certain times of the year, I still struggle with my sinuses. When that happens, instead of running to the doctor for an antibiotic, I often work on sinuses and immune system using my Sacred Cellular Healing (SCH) technique. It helps to keep my immune system performing at peak capacity and, more times than not, I do not sicker with a sinus infection. *That means I don’t have to take multiple antibiotic prescriptions and that’s good!

In a nutshell, I use SCH to boost my immune system to stay healthy and avoid getting sick.

But some twenty years ago, was I experiencing a breakdown of the immune system as it deteriorated in capability and functionality? Yes, you better believe it. I was sick week after week with sinus infections. That one symptom pointed towards the reality of me having CFS.

If you’re sick and a bit confused as to which illness you have or if you have both, consult my Fibromyalgia and Chronic Fatigue Syndrome pages on our sister website, Get Well Health. It is fairly inclusive and includes much of the information you want to know about this topic. Do you have Fibromyalgia or CFS?

Complementary and Alternative CFS Treatment Options: weekly wrapup

Cinda Crawford — Fri, 06 Apr 2012 14:15:00 +0000

Since last Friday on the Health Matters Show, you and I have been looking at discovering many CFS Treatment Options. Today I’m wrapping up the week with a general overview, yet emphasizing the last piece of the puzzle, Complementary and Alternative choices. After the audio podcast, pick up your “FREE” gift for hanging in there with me all week, a GET WELL HEALTH JOURNAL extraordinaire! It’s “FREE” and it’s yours for the taking and using.

Okay, let’s look at this week’s topics:

Monday we did Chronic Fatigue Syndrome Diet. If you’re eating potato chips right now, be brave and read it if you missed it. I promise I won’t fuss, but I do have some great suggestions for you to think about and try.

Tuesday we did Treating CFS Using Drugs and Supplements. That is a hot topic for sure. Most people who have had CFS for awhile cannot manage unless they resort to some type of drug, OTC compound or supplementation. There were lots of ideas in this post.

Wednesday we did Lifestyle Changes for CFS. Now, to me that’s interesting information. If I can change my lifestyle (e.g. how I think, how I act, the attitudes I have, etc.), then I can gain a measure of control that I control. *Please read the whole post before you jump and down and accuse me of blaming the patient. I absolutely do not. This is simply a different way of looking at the problem.

Thursday, we examined the issue of CFS: Cognitive Behavior therapy. That may or may not be a new term to you, but it’s worth investigating. See if you agree or disagree that at least some of the aspects of Cognitive Behavior Therapy may have merit.

Friday, today as I mentioned, we’re doing a bit of wrap-up, but also looking at Complementary and Alternative CFS Treatment options. The first place I’m investigating is the NIH (National Institute of Health), Complementary and Alternative Medicine, Mind Body methods research.

Get your copy of my newly revised…
GET WELL HEALTH JOURNAL!

The sub-topics there include Aromatherapy and Essential Oils (at http://www.cancer.gov/cancertopics/pdq/cam/aromatherapy/healthprofessional). I use essential oils myself to keep me healthy. Also addressed are hypnosis, yoga at http://nccam.nih.gov/health/yoga/introduction.htm, and clinical trials for mind body methods, plus how spirituality is being used and regarded in cancer care. In an age when not so long ago, it was taboo within the medical profession to talk about such topics, at least at NIH, they are addressing and looking into spiritual and alternative medical areas that could benefit the patient. I applaud them highly for such a move. However, all of the clinical trials right now involve cancer, not CFS. We anxiously await the results.

Today I’m particularly interested in a paragraph out of the health professional page referenced at NCI, the National Cancer Institute, on spirituality. It was linked to the NIH and reads this way:

Interest in and recognition of the function of religious and spiritual coping in adjustment to serious illness, including cancer, has been growing. New ways to assess and address religious and spiritual concerns as part of overall quality of life are being developed and tested.

I take that to mean that extremely ill people, like those with severe CFS and ME, may look toward their natural spiritual and religious leanings for answers that they can’t find anywhere else. This is a personal journey of exploration and a choice that I made years ago when I developed the mind/ body, energy healing product that I call Sacred Cellular Healing. I know I could never have gotten to the place I am now without undergoing that process, but more on that story another day.

Today, if you’re tired of being sick, tired of wasting your time, tired of throwing your money away with this product and that which doesn’t work, ask yourself honestly, what does it hurt to look inside of you for a deeper meaning to why you’re so sick? By deciding to be the spirit-based child of God that you were put on this earth to be, you have a good chance at figuring out how to be healthy again. Your inner spirit knows what to do; your body only needs a few tools to get there.

Yes, Sacred Cellular Healing is one of the many Complementary and Alternative CFS Treatment Options available today.

Thank you so much for joining me this week.
Cinda Crawford, host of the Health Matters Show

CFS: Cognitive Behavior Therapy

Cinda Crawford — Thu, 05 Apr 2012 15:30:47 +0000

In researching the info today about a CFS Cognitive Behavior Therapy program, I come away with mixed feelings. In some circles, this type of work is highly regarded. In other circles, it is not. I think that’s because such a suggestion as simply “change the way you think” is too simplistic and borders on “your illness is all in your head”. What an afront!

Let’s take a look at some of the beginning points of this type of therapy program and see if it is likely to help you, such as the following list.

A typical cognitive behavior therapy program may involve the following measures:

Keep a diaryThe value of keeping a diary may not be self-evident at first, but it can really pay off. Whether you write down your thoughts on paper or keep them online, it helps to see what you’ve written. It gives you a degree of validation for your illness. It also can help with things like organizing your life, such as with the “manage impaired concentration” goal below. You can keep lists of symptoms, prescriptions and the changes in how you feel. You think you’ll remember this important stuff, but it will fade with time. If you do a particular activity or project well, you can go back and look over your notes to help you see what might have worked in hindsight. It’s always 20/20!But more than that, writing down what is important to you can help you through the difficulty of managing the illness. Two great examples of that are 1) preparing for your doctor visits and 2) preparing a disability or insurance-based case. I invite you to come back to the Health Matters Show on Friday for a revealing discussion of all this week’s topics. If you do I will make available to you a “FREE” copy of my fabulous GET WELL HEALTH JOURNAL

Adjust your schedule as needed. If you have a terribly fatiguing illness like CFS (Chronic Fatigue Syndrome), it is not only a good idea but common sense that you consider reducing your activity level. If you do slow down, rest more, work few hours, etc., this give your body a chance to recover and heal. This is something you can figure out how to do for yourself.

Confront negative or discouraging thoughts. For me, this is a big item. Negative or discouraging thoughts can carry lots of power. Few people are able to reject all negative or discouraging thoughts at will. Whenever this type of thought pattern is with you, it can seem overwhelming and pervasive. Can you will this type of thinking away? Maybe, once in awhile, you can do that. But on your worst days, don’t count on being totally successful. I find that it takes special training and help, such as what I offer my clients, to accomplish this goal in a meaningful way. Each person has been through different degrees and different type of stress and trauma. A person with CFS often needs real help in working with such involved self-based information. It simply isn’t that easy to “confront” the negative or discouraging thoughts and they will leave you alone.

Be flexible. Now that is a great suggestion. However, many people who are very sick, such as those with severe CFS or ME symptoms, become fairly inflexible. Change the temperature of the room and they’re miserable. Raise you voice and they’re off to find a quieter place. Introduce stress into a job situation and they cannot produce. Part of this may be because of damage to the brain. Scientists suspect that to be the case.

These results are consistent with an insult to the midbrain at fatigue onset that affects multiple feedback control loops to suppress cerebral motor and cognitive activity and disrupt local central nervous system homeostasis, including resetting of some elements of the autonomic nervous system.

So if there is damage present, you may not be capable of being really flexible. No matter how hard you try, your brain damage can influence your tolerance levels, your ability to cope and your ability to change on a dime. All you can do it try. Do what you can to be flexible; the next idea or suggestion could be the one that really helps you.

Set limits. This is an excellent suggestion, especially when the topic is aimed at your daily expenditure of energy. Dr. Charles Lapp calls this your “energy envelope” and I wrote about this yesterday during the sub-topic of stress in the post, Lifestyle Changes for CFS. You only have so much energy each day. Think of your daily energy as being energy dollars deposited in your energy envelope. Some days you have a fat envelope with all the dollars you need; other days, you have a skinny envelope and you better use them wisely. Once you spend your energy dollars, they’re all used up and you have no more energy! That’s why setting limits with people, events, projects and the like is always a good idea.

Prioritize. Yes, it is good to prioritize our lives. However, with the symptom of brain fog being present, prioritizing may not be something you think about. Most people suffering with intense brain fog are fairly stressed and run from putting out one fire to the other. I’m not saying that this a good pattern, just a likely one. Prioritize when you can and simply do the best that you can other times.

Manage impaired concentration. This sounds funny to me, maybe to the point of being ridiculous. Manage your ability to “not be able to” concentrate? There are few, logical answers of how you can do that short of healing and getting well. When you feel better, you can concentrate better. Granted, there are strong, stimulant drugs that can help you concentrate. Your doctor must prescribe them, but they all have side-effects. The best answer is to find your own answers for getting well.

Accept relapses.I’ve never known anyone with CFS who did not suffer at least a few relapses before they began to get well. I guess that’s because few people really realize the scope and severity of the illness they have. They don’t begin the process of reversing it quick enough.Some people experience relapses regularly. I knew one lady who suffered two weeks of every month, depending on her feminine cycle. Now, that was new to me, but I put nothing past CFS. Most people simply have relapses when they’ve pushed too hard, allowed too much stress into their lives or succumbed to a new bacterial or viral attack. I’m sure there are more reasons.The point in accepting your relapses is not to blame yourself for having them. Most of the time, you did nothing to cause a relapse. When you do, my suggestion is simply to learn from what you did and set a new boundary there for the future. When you find out what you can and cannot do without causing a relapse, you’ll have more success in averting them in the future.

Please come back to the Health Matters Show on Friday for the conclusion of this week of CFS. I hope to wrap this up in grand style and, as mentioned above, offer you a “FREE” copy of my GET WELL HEALTH JOURNAL! Thanks for joining me today in this discussion of CFS: Cognitive Behavior Therapy. Add your own ideas and ask questions.

Cinda Crawford, host of the Health Matters Show

Lifestyle Changes for CFS

Cinda Crawford — Wed, 04 Apr 2012 19:52:14 +0000

Today’s topic is Lifestyle Changes for CFS. In talking about this subject, the first thing to do is ask yourself, “What is my CFS lifestyle?” Is it sedentary because you’re too ill to be up and active that much? Do people find you in bed most of the time? Does anyone care about your quality of life and try to help you improve and feel better?

Only you, the individual can answer these questions and surely your answers are complicated. The emphasis in this post today on the CFS lifestyle is to encourage you to think, plan and carry out the lifestyle that you want to achieve and is possible to accomplish.

First, what is true and best for one person may not be the answer for the next. Being successful with CFS, Chronic Fatigue Syndrome, lifestyle changes may be a continual-effort work, your progress edging forward and then sliding back at times. You may struggle every day of every week to see any improvement.

And, very important, if you begin to feel a bit better, please don’t take your positive lifestyle changes for granted and assume they will always be with you. It’s easy to backslide into old ways and old ideas if you experience some rough days. The return of your de-conditioned body could be right around the corner.

So, what lifestyle changes for CFS can you make today that will help you feel better? And encourage your “healthy” body?

What About CFS STRESS?

Always, reducing your amount and degree of life stress is an advantageous goal. We human beings heal when we’re living with less stress and in a more comfortable, peaceful and healthy environment. However, when and if you must make a conscious decision about whether to allow more stress into your life, figure out a way of balancing the stress with stress-reducing activities and thought patterns.

EXAMPLE: You may learn and practice deep breathing or another healthy self-practice called mindfulness. Whatever you choose to do, don’t allow your “illness symptom scales” to tip towards the negative side and start heading your body towards full blown symptoms again! CFS Stress…here you come! Instead, be wary and pro-active for yourself.

What other types of lifestyle changes should you consider that are positive for controlling CFS stress? If you have the funds available, consider adding massage, yoga, meditation and light exercise into your healing and wellness routine. No, you probably can’t do any of these everyday, but try to work them into a monthly “to do” schedule, if possible. In the long run, they will help to reduce your stress level. And less CFS stress eventually leads to better health. (Note: a poor diet surely adds to to body stress, too, so think of your dietary adjustments as possible helping.I talked about the advantages of eating a good diet two days ago.)

My last suggestion is that you check out Intentional Resting with Dan Howard. He is doing phenomenal work in helping people alleviate pain and other symptoms. Plus, Dan graciously allowed me to interview him several months ago on his fabulous health and well-being technique, Intentional Resting. I’m happy to give you special access to the whole hour-long interview that we did. It’s at GetWellHealth.com and you should insert the private password, cindadan. (*To make sure you don’t ever miss any of my interviews like this, sign up in the sign up box on this page.)

CFS Graded Exercise program

You could consider taking up an exercise or CFS Graded Exercise program. They are different in purpose, intensity, scale and proposed outcome. Overall, you begin with whatever level of health, agility and stamina you have and attempt to increase your abilities through something like slow, gradual walking. You can do this with a doctor or clinic or by yourself. If a planned CFS Graded Exercise program is chosen, read up on the dos and don’ts and choose wisely..

If you find that you can’t do “exercise” well and your symptoms begin to worsen, do not blindly continue. If you stop when you first realize that this isn’t helping, maybe a month or six months later, your health may be better and you can try it again. Doctors, such as Dr. Charles Lapp, have proven that pushing yourself to exercise, when you’re not capable or not ready for the physical activity, can be detrimental and bring on relapse symptoms.

Never keep pushing ahead when you relapse. When you’re ready, start again slowly. Unfortunately, that can mean never re-starting, waiting a week or waiting years. There is no uniform time table or protocol that works for every person. That’s why a CFS graded exercise program does not meet with uniform success and why graded exercise is not well regarded around the world as a universal “must-do” rehabilitation choice.

CFS sleep pattern

Other lifestyle changes to consider may include altering your poor CFS sleep pattern. Some people feel they need prescription drugs to adequately handle their sleep problems. Even if this works moderately well, it is an artificial answer. A less aggressive way is to add foods or magnesium supplements to your nighttime regimen -or- maybe 3 mg. of Melatonin. (*Seek your doctor’s advice.)

By using Melatonin, you may be able to get to sleep easier and stay asleep longer. Health food store owners can often share information about Melatonin and other sleep products they carry. Even though my personal health is much better now, I still take Melatonin about one hour before going to bed each night to insure I get good quality and an adequate amount of sleep. Some people prefer the long-acting varieties to get the benefit of the supplement all night long. LemonBalm, B vitamins, etc. can add to the calming and peaceful sleep you desire, too.

For other people, a CFS sleep pattern problem may be more of sleeping too much or at inappropriate times of the day. I suspect that stems from a person’s massive level of exhaustion and is caused in part) by the immune system fighting so hard and being on guard 24 hours a day! Getting into as much of a daily, nightly sleep regimen as possible can help there, too. Plus, if you sleep at the normal times of day, your biorhythms and biochemicals will work together for your good health. (If you don’t, they can work against you!)

Pick up my “FREE” 3 Critical Things You Must Know About Sleep to Begin Feeling Better. The sign-up box is in the right-hand column of this page. This is an excellent resource for anyone with a CFS sleep pattern problem.

Other sleep problems common to Chronic Fatigue Syndrome are sleep apnea, restless leg syndrome and periodic limb movements. A doctor should diagnose, advise and treat these conditions, because allowing them to continue could be dangerous to your overall health.

If you have any further ideas about improving your CFS Stress (e.g. with Intentional Resting), CFS sleep pattern problems, CFS graded exercise programs or lifestyle changes for CFS, please feel free to add them below. Share what works and the world heals with you!

Blessings, Cinda Crawford
Host of the Health Matters Show

Treating CFS Using Drugs and Supplements

Cinda Crawford — Tue, 03 Apr 2012 14:15:01 +0000

Considering our topic today, Treating CFS Using Drugs and Supplements, this is a huge post, packed with vital information. Let’s begin first by saying that there are no medications currently approved or recommended by the FDA for treating/ curing Chronic Fatigue Syndrome. No, none that claim to get rid of this complicated medical problem.

*There are a few rumored to help with immune dysfunction, etc., such as Ampligen, but none of them are available to the public at this time. (*If you type the term “Ampligen” in the ‘Search this blog’ function on the front of the website, you’ll find at least five separate posts that address this experimental drug.)

Hint…hint…the best suggestions I’ve found are often supplements!

Prescription drugs are being used by doctors to treat these types of CFS symptoms:

Bacterial and viral infections
Depression or moodiness
Anxiety
Pain
Sleepiness
Inflammation
Muscular aches and pains
Blood pressure and blood volume abnormalities
Plus more, such as pure pain management therapies and experimental treatments (See Ampligen above)

*Don’t stop reading– See the guest blog tips of Robin Thomas below plus 3 of my own BEST SUGGESTIONS*

These are all “off label” uses of these drugs, meaning that they were not designed specifically to act on Chronic Fatigue Syndrome. They were designed to treat other conditions, but doctors found that, for some people, they can help to alleviate some CFS symptoms. (If you can tolerate all the side effects, they may provide you some relief.) Off-label uses of these drugs also means that your insurance policy may or may not cover the cost of them.

I’ve found that most insurance companies do cover the more traditional drug regimens, but if you want something less mainstream and/or more experimental, you should be prepared to shoulder the financial burden alone!

Next in line to consider are single suggestions or a combination of prescription or OTC (over-the-counter) drugs that ease symptoms. “Ease my symptoms?” you ask. Yes, ease them. (Cure them? Probably not, but you do need relief from the everyday pain and agony of CFS.)

These may include such easily obtained drug store products as Arthritis Strength Acetominophen. It comes in many brands. Or maybe you like the deep heat relief of pain patches found right on your drugstore counter. If you normally use a heating pad, be sure not to use it at the same time as a cream, rub or pain patch. You could get a bad burn!

And last, but not least, there are Chronic Fatigue Syndrome supplements. Such products can fill in nutritional gaps that have left the body incapable of functioning well. Such as:

MY BEST SUGGESTION: Check out the MITOSYNERGY Line. My daily regimen includes taking MitoSynergy. It is fantastic! It helps with boosting my energy, getting rid of fatigue, helping with stamina and lowering my pain levels by reducing inflammation AND…helps with promoting my mental clarity. No, I’m not kidding.

You can ask anyone if I regularly endorse products and the answer is “No.” With MitoSynergy, I’m making an exception. Wow, am I officially impressed with this product! I do really well on a regular basis, so for me to notice an improvement is saying something. Check out MitoSynergy Today.
SECOND SUGGESTION: Research Vitamin D. You’ll see what I mean when you dig into this topic. Taking an adequate daily amount of Vitamin D seems to be absolutely vital if you want a strong immune system. Whether for you that is 1,000 i.u. a day or much more, you should have your doctor test your blood and see where you are now. The test is a bit pricey, but worth determining your current figure. If you get this right, you immune system could get a nice, stabilizing boost!

But, hold on. There is one more… .

THIRD SUGGESTION: You need a good multi-vitamin. In the process of deciding what you need to do, don’t forget to take the standard good health care suggestion– a good multi-vitamin. But which one do you use? What quality? The truth is many great supplements abound, but I don’t know of any that have everything in one pill. Plus, not all of them are totally safe or include the exact ingredients listed on the label.

USA reported in Jan 2012 that the protocols for some companies analyzing and/or manufacturing nutritional products are inaccurate and not scientifically valid.

A few days ago, I read about this topic in Robin Thomas’s newsletter, “Are Your Nutritional Supplements Safe and Effective? This is good information for your research about nutritional supplements. I’ve asked Robin Thomas to share some of her best thoughts about supplements for combating fatigue and boosting the immune system:

Improve Your Immune System and Fight Fatigue

I am frequently asked about what supplements are useful for building a strong immune system and relieving general fatigue. I first want to emphasize that I am not a medical practitioner and am not licensed to give specific medical advice, but my background in biology and my personal interest leads me to keep up with the current research on nutritional supplements and their role in improving overall health.

There are many reasons for someone to experience an imbalanced immune system and/or chronic fatigue. It may be triggered by infectious agents, mental or physical stress, nutrient deficiencies, immune system abnormalities, allergies, hormonal abnormalities, heavy metal toxicity and oxidative stress. Recommendations to help relieve some symptoms include ruling out allergenic foods, avoiding food additives, removing sources of toxins (including heavy metals), candida (yeast) overgrowth, viral or bacterial infections, hypothyroidism, hypoglycemia, anemia, and impaired adrenal function. Of course, it is always best to work closely with your physician at all times.

Experts in nutritional medicine now frequently recommend adding supplements to a healthy diet to support overall health and alleviate common nutritional deficiencies. Your doctor may want to test you for certain deficiencies that may be contributing to your specific symptoms. This could help guide your supplement therapy and dosages. Laboratories such as SpectraCell provide comprehensive testing of micronutrient levels, providing you and your physician valuable information as to your specific needs.

That being said, I believe strongly that everyone should be taking a quality multivitamin/mineral supplement. However, not all supplements are both safe and effective. The FDA has been sending warning letters to supplement companies all across the nation concerning violations of current Good Manufacturing Practices (cGMPs). How will you choose a multivitamin that works? Basically, you should look for third party verifications of safety, purity, efficacy and potency of both raw ingredients and the finished product. Ask your supplement provider if they use Pharmaceutical model Good Manufacturing Practices, and ask them about third party verification of these practices.

When considering individual supplements, you and your doctor should think about what symptoms impact you most and then look for supplements that help with that symptom. When starting supplements, it’s important to only start one new one at a time, then wait a week or two before introducing another one. That will give you a chance to see what effect each supplement has on your body. The following are some excellent choices that have the potential to improve both your immune system and energy levels.

CoQ10

The energy that every cell needs to function is produced through a complex process in the mitochondria, organelles within the cell. When combined with alpha lipoid acid, CoQ10 assists in ATP (energy)production and also helps to regenerate and recycle other antioxidants, including vitamins E and C. CoQ10 is also a powerful antioxidant that helps protect against the damaging effects of free radicals.

Vitamin D

Low levels of Vitamin D has become wide-spread here in America, and is indicative of many chronic conditions. The only way to determine you are getting enough Vitamin D is with a blood test (as Cinda indicated above), now fairly commonly prescribed by physicians. The normal range of 25 hydroxy vitamin D in the blood should be 30 to 74 ng/mL. Vitamin D is important for our immune system and proper inflammatory response.

Fish Oil (Omega-3 Fatty Acids)

Studies have shown that omega-3 fatty acids, in the form of fish oil supplements, have great benefits for your overall health, including maintaining a normal, healthy inflammatory response. It is important to ask that your fish oil supplement be produced from cold-water, deep sea fish, and that it be guaranteed free of contaminants such as heavy metals, PCBs, pesticides, and organic residues.

Vitamin C/Grapeseed extract

Grape-seed bioflavonoids and vitamin C work together to provide advanced antioxidant protection that supports a healthy immune system. USANA Health Science’s unique formulation, Proflavanol® C-100, combines the highest quality grape seed extract with USANA’s proprietary Poly-C, a blend of mineral ascorbates.

Supplements for Healthy Digestion

Poor digestion leaves the body and the immune system in the same predicament that poor nutrition does – a lack of nutritional factors that support immune functioning and the function of the entire body. This is because a poor functioning digestive system has lost some of the ability to turn what’s consumed into a form the body can use. If we’re not healthy in our gut, the probability of health issues throughout our body increases.

Digestive Enzymes- enzyme supplements are especially important as we age and our natural enzymes decrease. Probiotics- probiotic dietary supplements replenish beneficial microflora, which are vital to the proper development of the immune system.

Dietary supplements generally are better tolerated and have fewer risks than prescription medications, but it is always prudent to pay careful attention to the quality of individual supplements as you would any drug. Just because a product is natural doesn’t mean it’s safe and won’t interact with other supplements or medications. You should talk to your doctor and pharmacist about what you’re taking, the dosages, and potential interactions. If you have sensitivities to any foods, you need to be aware of what inert ingredients are in the supplements you take. Again, it is best to purchase supplements that have a written guarantee of potency and purity. You and your doctor will then be able to determine the supplements that will work best for you.

Live Well! Robin Thomas

*My great guest blogger, Robin Thomas, spent 22 years in medical research at the University of North Carolina focusing the last 7 years on the inflammatory process of chronic degenerative diseases. In 2004 she left the laboratory to start her own health and wellness business. Both her experience working with participants of clinical studies and caring for a child with multiple health challenges has given Robin a passion for helping others improve their own health. Robin shares informative articles about new research discoveries in nutritional medicine and adopting lifestyle changes aligned with a healthful and passionate life at her blog, http://robinthomas.biz

Also please note: The information listed above is provided for educational purposes only. This should not be used as a substitute for professional medical advice, nor is this information meant to treat, diagnose, cure, or prevent any disease. Always seek the advice of a physician or other qualified healthcare provider before starting or discontinuing any treatment or supplement regimen.

~~~~~

Dear folks, tomorrow on our agenda, we’ll be covering Chronic Fatigue Syndrome Lifestyle Changes. Please share today’s post and plan to join us tomorrow on the Health Matters Show. This is a big week with all this information and the most appreciation you can offer me is to share it with your friends and colleagues. You have my appreciation in return.

Thank you, Cinda Crawford, your host
Health Matters Show

Chronic Fatigue Syndrome Diet

Cinda Crawford — Mon, 02 Apr 2012 16:47:05 +0000

Based on all we know today, a Chronic Fatigue Syndrome diet needs to go against the grain of what is trendy or what other people eat everyday. Considerations such as the nature of the food itself, what it contains, how it will affect your body, what dietary need is it fulfilling and does it help or hinder your symptoms.

When you are very symptomatic with CFS symptoms, consistently eating the right foods will help to give your body a chance to recover. (See below for suggestions.)

Gorge with the wrong ones and you’re setting yourself up for more challenge than your body can handle right now. What are some of the wrong food substances?

Sugar, white bread, regular pasta, potatoes and white rice

Sugar has been a culprit from day one. It causes inflammation in the body. You don’t need anything else inflamed! Plus, sugar can be a big source of empty calories. White bread, pasta, potatoes and white rice can be converted to sugar in the gut rather quickly. That means these sugary foods could be detrimental to your weight and your organs that are trying to keep you healthy, moving forward and recovering.

See Is Sugar Toxic by CBS News for more of the negative ramifications of including sugar in your diet. New research is indicating that sugar “is” one of the most dangerous substances you can consume. It even promotes cell growth in cancers!

Lots of heavy meats that are hard to digest

When I was in my sickest, weakest state and expressing lots of CFS symptoms, I had to cut back on heavy, dense meats like beef steak. Attempting to eat it would bring on overwhelming exhaustion. My jaws even got tired from the act of chewing! Think of it this way, if you need your energy to recover, eating should not divert your body’s attention away from what it needs to do any longer than necessary. Eating a lot of dense meat only exasperates your energy situation. They are hard to digest and require a lot of your body’s energy. Plus, many meats are loaded with antibiotics, steroids and ingredients for taste that can be harmful. Choose your meat protein carefully.

Suggestion: lower the amount of tough meats you eat and concentrate on consuming other sources for your protein intake, such as eggs, cheese, and a few nuts per day. (I never suggest soy because I believe it to be too controversial a food product, but some people think it does more good than harm.) If you want some beef in your diet, consider getting some good quality, grass-fed beef (without hormones or steroids) and make a hearty vegetable soup with small chunks of beef included for taste. Or use ground beef and ground turkey for a nice meatloaf or meat balls. By eating the ground up meat version, at least you won’t be chewing until next Sunday before you can swallow it!

Suggestion: Concentrate on chicken, turkey, fish (not those with high concentrations of mercury), lean meats as discussed above, plus you can add the white meat, pork, if it works alright with your body (some people can’t tolerate pork), walnuts (or some similar nut that helps in regulating cholesterol) and add some dry beans into your diet. A bean soup can be delicious, hearty and healthy.

Foods loaded with fats.

Harmful fat sources might include bacon, cream sauces and hidden fats. Remember to read your labels. Most doctors and nutritionists recommend you consume a portion of “good fats” everyday, fats such as olive oil.

Foods loaded with aspartame, MSG (monosodium glutamate), preservatives and food colorings

Stay away from aspartame. Period. It is so dangerous to a healthy body, much less yours that is struggling every single day. That means you read the label on every drink and food product before drinking or eating. MSG, preservatives and food colorings are adding insults to your immune and digestive system. They are not natural foods and they can produce negative results such as food allergies and food sensitivities. Remember, the purer sources of food (what you put in your body), the better!

Drinks/ foods containing caffeine or alcohol.

Most people who are severely sick cannot tolerate alcohol at all. Take that as a clear warning. As for caffeine drinks, especially beware of these new energy concoctions like “5 Hour Energy” and the like.

Foods containing caffeine, like iced tea, may not seem so off the wall, however too much caffeine consumption from any source can cause problems. If you drink them, you’re artificially stimulating your body while setting yourself up for the inevitable crash afterwards. And we know horrible your crashes are, right? Any energy expenditure needs to be more balanced than that. What you eat and drink can help or hinder you. Having too many up and down, violent shifts can actually damage your ability to maintain a steady energy warehouse. Think…less stress on your system. Be sure to consume beverages that support you such as drinking lots plenty of fresh, clean water each day. Also see a previous post on “the energy envelope theory” by Dr. Charles Lapp for a novel approach to your daily energy management needs.

Remember to actively keep your CFS symptoms at bay by carefully monitoring what you eat and drink!

Thank you so much. The title of tomorrow’s post is “Treating CFS Using Drugs and Supplements”. Feel free to share all of this information with others. This is a week-long series on Treating Chronic Fatigue Syndrome. It will end this Friday, April 6th with the conclusion on the Health Matters Show blog and podcast.

Cinda Crawford, your host of the Health Matters Show

PS- Below are some great resources. They both have Fibromyalgia in the title, but the suggestions apply to a Chronic Fatigue Syndrome diet, too:

-and-

Deirdre Rawlings “Foods for Fibromyalgia” website.

Treating Chronic Fatigue Syndrome

Cinda Crawford — Fri, 30 Mar 2012 14:55:46 +0000

Anyone who is sick with Chronic Fatigue Syndrome (or ME) wants to know the best methods for treating it. There is no exact science. Is there a drug that will cure CFS? Most everyone assumes the cure will come as a drug because CFS is such a horrible physical ailment. The answer surely will be biologically based, right? Not necessarily.

Is there something else that works better in helping a person heal from CFS? At this point in time, I believe the answer is that something else does work very well. (More on the specifics later.)

No “curative” drug for treating Chronic Fatigue Syndrome exists, although research is ongoing and more drugs are in the pipeline. Some current drugs help to relieve symptoms. That’s a far cry from healing the condition as a whole. Plus, you must continue taking the drug indefinitely to keep getting any relief of your symptoms!

To give every area of this huge topic its dues and a fair shake in our analysis, let’s open up the door and consider all your possible treatment options. There are quite a few. They can help some people with symptom reduction. However, again, I find little to help you really heal and get well, closer to that 100% mark. So, next week I’ll be addressing these options, one by one, concluding Friday in a big presentation for the Health Matters Show that summarizes this huge topic and let’s you in on what I believe works for a lot of people.

If you’re looking for the best answers for getting well– really well because you’re sick and tired of being sick and tired– I have information for you. That’s because I not only suffered with Chronic Fatigue Syndrome for fifteen years and struggled in getting it treated adequately, but, I got well and am now helping people heal from CFS every day!

Today I share some of that info on the Health Matters Show podcast, with a bit of the audio file where Dr. Deirdre Rawlings interviewed me about how I got well:

(Today’s Health Matters Show podcast is 9 minutes 53 seconds.)

After I got better, I began to develop my own theories about what works and what doesn’t. I’ll share many of them with you next week. Stay tuned!

SO WHAT ARE THE MORE COMMON TREATMENT OPTIONS?

Prescription drugs (and OTC preparations)
Nutritional supplements including multi-vitamins
Adjusting your Diet
Lifestyle changes- Which ones should you make? Which ones may be…dangerous?
Cognitive behavior therapy- What is it? Does it work for everyone?
Other Complementary or Alternative health and healing protocols, such as Sacred Cellular Healing

I do not have all the answers. So that this can be a gathering spot for all kinds of good info, I encourage you to leave your comments here for others to see. What you know could be of value to someone else for treating Chronic Fatigue Syndrome. Maybe even the missing part to their puzzle!

Thanks, Cinda Crawford
Your host of the Health Matters Show

CFS and Germs

Cinda Crawford — Fri, 03 Feb 2012 14:15:52 +0000

I’m been burning the candle at both ends lately (proverbially, of course) and my immune system is talking trash to me, thus the title of today’s post: CFS and Germs. Now I don’t have full-blown CFS (Chronic Fatigue Syndrome) anymore. I don’t even have symptoms unless I’m living too close to stress and gotta-get-it-done-now style of life. Even so, today I’m suffering with a runny nose, sneezing and sometimes a stopped-up nose. Go figure. I’m even betting my voice sounds scratchy on the podcast today. But I’m hoping not too much so because I’m treating myself to extra sleep, I’m doing Intentional Resting for my immune system and taking care of myself.

It’s never easy to hold yourself back when there’s so much in front of you to do. That seems to be my life right now with a book in progress and…in the coming weeks, I’m preparing two fantastic interviews for you. I know how much both men can offer us on these topics of feeling tough, not having enough energy, not being as healthy as we want to be and wanting to do something mighty about the whole situation!

*Take a look at more CFS and germs info from quite a few years ago from Andrew W. Saul. None of us can afford to sit on our hands.

Andrew W. Saul drsaul@doctoryourself.com:
FOR SOME REASON, this item caught my attention. It was sent to me by Shirley Bentley, president of the US chapter of the Common Cause Medical Research Foundation.

“Germs Patented by U.S. Government Linked to AIDS, Chronic Fatigue Syndrome/Gulf War Syndrome, MS, Cancers and Immune and Neurodegenerative Diseases.

“West Nile Fever Virus (NYC Encephalitis Outbreak) sent to Iraq FROM U.S. Center for Disease Control 5/21/85 (page 275, Congressional Record, May 25, 1994: “Dual Use Exports to Iraq and their Impact on the Health of Persian Gulf War Veterans”) The CDC West Nile Web Site is http://www.cdc.gov/ncidod/dvbid ”

I must confess I found this all a tad hard to accept, at least until I saw that there are actual U.S. Government patents for some nasty little
germs. You can check for yourself:

U.S. Patent 5,604,093: Human Herpes virus-6 (HHV-6) Isolution and Products (Chronic Fatigue Syndrome; Health and Human Services) February 18, 1997 U.S. Patent 5,189,022: underlying viral cause of CFS (Health and Human Services) U.S. Patent 5,242,820: Pathogenic Mycoplasma (Mycoplasma
fermentans in CFS; Department of Defense) September 7, 1993 U.S. Patent 5,827,750: JHK Virus in CFIDS (Grossberg retrovirus) National Institutes of Health Grant RO1-AI-32710. …

“DOCTOR YOURSELF” “DoctorYourself.com” and “Doctor Yourself Newsletter” are service marks of Andrew W. Saul. All rights reserved. Copyright c 2001 and prior years Andrew W. Saul drsaul@doctoryourself.com

Permission to reproduce single copies of this newsletter FOR NON-COMMERCIAL, PERSONAL USE ONLY is hereby granted providing no alteration of content is made and authorship credit is given. Additional single copies will be sent by postal mail to a practitioner or patient, free of charge, upon receipt of a self addressed, stamped envelope only, to Number 8 Van Buren Street, Holley, NY 14470 USA Telephone (716) 638-5357

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I urge you to stay tuned and support the Health Matters Show, if you can. I depend on you to bolster me in times like this. Your care, concern and support will be returned triple fold. Together, CFS and germs will be more than just a title, but a goal to conquer and overcome.

Thanks, Cinda Crawford
Host of the Health Matters Show

New head of ME/CFS Research at NIH

Cinda Crawford — Mon, 23 Jan 2012 17:24:13 +0000

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

Stress Response Hormone: Behind the science of Endocrinologist Wylie Vale Jr.

Cinda Crawford — Fri, 20 Jan 2012 14:15:41 +0000

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

Recovered from CFS

Cinda Crawford — Fri, 13 Jan 2012 14:15:53 +0000

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!

Here are some of Jody Smith’s words: Download audio file (Podcast01131202.mp3)

…others say that since there is no such thing as recovery from Chronic Fatigue Syndrome, that I must never have had it in the first place. I have read such things written about me, by people who don’t know me, who have never met me.

It was a shock the first time but I don’t take it personally now. And though I think it’s too bad that they wasted their time writing about someone they don’t know, on a subject they know nothing about — meaning, me — I can kind of get where they were coming from.

I am now in an interesting spot. I’m just not as sick as I was. I am able to have a life.

I still have my times of contending with CFS symptoms but they are so much less than they used to be. I’d compare it to someone with diabetes who mostly is fine, as long as they monitor themselves, and build in a few protections for themselves.

When I was very ill I couldn’t write at all. I could hardly write my own name. Having to do anything with pen and paper — or computer — would exhaust me mentally and physically in under five minutes. (skipped text)

But things have changed dramatically since I was a vegetable.

Please take time to visit her entire post at EmpowerHER and keep your own hope alive.

Before you leave the Health Matters Show, take another moment to check out my Learn How to Heal Yourself membership course. (*If you feel like you’re too sick to go through a course (and many people are), contact me directly for “healing services“. I’m happy to help you personally. Together, we can begin your healing and do it either in person or at a distance. Both methods work equally as well for most people!

Cinda Crawford, recovered from CFS for six years (after a 15 year illness)
Host of the Health Matters Show
Creator of Learn How to Heal Yourself membership course -AND-
Creator of Sacred Cellular Healing, a mind/body/spirit healing technique that helps people regain a healthy life after chronic illness.

“You can be recovered from CFS!”

ME, CFS, ME/CFS or not? Argument by Tom Hennessy

Cinda Crawford — Mon, 02 Jan 2012 23:22:52 +0000

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.

Hey Boys and Girls, Ladies and Germs,

FWIW (for what it’s worth), here goes the Ego part. For better or worse, I am one of the smartest people I have ever met. so, all of you who hate me because I am a smart ass, can sign off or hit the delete button now. Also, I have sent my old Videos from CNN’s Larry king Live (twice) and the MacNeil/Lehrer News Hour, and numerous other cable TV shows and CBS’s 48 Hours, and NBC’s Dateline, and ABC’s 20/20, and forty or fifty hours more of TV shows on VHS, has now been transferred to Digital media and sent to at least 50 people in more than 20 countries who are ready to go the Internet, in case I accidentally get Hit by train, or have my brakes fail, or some other seeming “accident” in the next few months, I will predict here and now, that it won’t be an accident.

OK, Now for the meat in this sandwich. Personality wise, she is tough to deal with, but i think Jill McLaughlin is MUCH closer to the facts than the so-called “ME/CFS” coalition. I have told her repeatedly, that i agree with her almost completely on the facts, but that she rubs soooo MANY people the wrong way (including my late father), that her message gets lost in the delivery.

After reading more than 30,000 emails, letters, faxes, FB messages and personal meetings with people from all over the world, IMNAHO (In my NOT always Humble opinion) These are NOT one disease, nor do they have ONE trigger.

I believe that these are cases of Multiple CHRONIC IMMUNOLOGICAL AND NEUROLOGICAL DISEASES aka CIND. that is where the name RESCIND, INC. comes from, some 20 years ago.

The Coalition 4 ME/CFS submitted a proposal to NCHS to reclassify Chronic Fatigue Syndrome (CFS) as neurological and code it to Myalgic Encephalomyelitis (ME) at G93.3. [Coalition 4 ME/CFS ICD-10-CM & ICD-9 revisions for Chronic Fatigue Syndrome (CFS)

http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf]

The premise that the Coalition 4 ME/CFS has used is that ME is the same as CFS and thus the ME=CFS=ME/CFS model. They are not the same. The definitions are different. ME is not a fatigue syndrome. Some symptoms may overlap, as with many illness (and considering that CFS is so broad), but they are different in nature and outcome.

The Coalition states that “there are over 4000 scientific papers on ME/CFS” [page 2, http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf]).

This is not true, with regard to ME/CFS (as the Canadian Criteria) or just the generalized use (or misuse) of the term. A medline search for ME/CFS listed 46, not 4000. Is this yet another haphazard, general unofficial substitution of the term ME/CFS?

The rationale upon which they base their request to change the ICD codes for CFS can be broken down as follows:

1. The Coalition 4 ME/CFS states that the purpose for the changes to the ICD codes is to bring the codes in line with the definition [http://coalition4mecfs.org/ICDPR.html]. This proposal does not accomplish this intention. NCHS has coded them properly. The current US ICD codes are already in line with the definitions. NCHS has coded ME and CFS accurately in the ICD-9 CM and the intent for the ICD-10-CM. CFS does not strictly define a neurological illness. Codes should accurately reflect and match the definition and classification. CFS is by definition a symptom syndrome and coding is accurate at R53.82 (under general signs symptoms).

The Coalition 4 ME/CFS states: “… the goal is to ensure alignment with the best case definition for CFS, which includes both viral and bacterial triggers.” [http://coalition4mecfs.org/ICDPR.html]

No CFS definitions include viral and bacterial triggers. The Coalition 4 ME/CFS does not designate what the “best case definition” is as there are several, which may be different. NCHS is part of the CDC. This NCHS Committee is to properly code existing illnesses. It should adhere to US/HHS policies. This would require staying within the confines of the current recognized and accepted HHS/CDC definitions. Codes do not define illnesses nor change case definitions.

If the Coalition wanted to specify a “best case definition,” they should have done so and THEN push for its acceptance and THEN code it accordingly. If this is what they were getting at, they skipped a critical step in the process.

2. The Coalition 4 ME/CFS states that the purpose of the proposal to NCHS is to code CFS as neurological. “The Coalition 4 ME/CFS on July 15, 2011, submitted a proposal to the National Center for Health Statistics (NCHS) for reclassification of chronic fatigue syndrome (CFS) as a neurological disease in the United States International Classification of Diseases-10-CM (ICD-10-CM) and International Classification of Diseases-9-CM (ICD-9-CM).” http://coalition4mecfs.org/ICDPR.html

None of the CFS definitions define what would be recognized as identifying a neurological disease. A recent survey of members of a Neurological Association demonstrated that84% do not view CFS as a neurological illness. (“Chronic Fatigue Syndrome: Labels meanings and consequences,” Journal of Psychosomatic Research, 9 April, 2011) The abstract notes that *”this is at odds with the WHO classification.” They do not view it as neurological because the definition does not support it as neurological DESPITE the WHO classification. Codes will not override the definition.

3. WHO ICD 10 and other countries have adopted the coding of CFS to ME at G93.3. There are many CFS definitions and other countries can make their own decisions and code them accordingly. Likewise the US should base it on the convention of our own policies, not based on other countries. The purpose of the Clinical Modification is to allow for such convention and changes or modifications can be determined according to each countries standards and policies.

NCHS has given the following explanation: “While it appears most appropriate to classify chronic fatigue syndrome in ICD-10-CM in the same way that it is classified in ICD-10, this placement is not without problems. The primary concern with the current WHO
placement in ICD-10 has been that the abnormalities of the brain in chronic fatigue syndrome patients most often cited in the literature are not found in all chronic fatigue syndrome patients. While chronic fatigue syndrome may be a heterogeneous group of disorders, some but not all are neurological in nature. Likewise, not all patients have experienced a viral infection prior to being diagnosed with chronic fatigue syndrome, nor are immune system anomalies universally found. Also of potential concern is the similarity between the type of neurological findings in chronic fatigue syndrome and in depression, which is a psychiatric disorder.” [A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards, [http://www.co-cure.org/ICD_code.pdf]

This statement by NCHS is accurate and this is why the US should not make the changes requested by the Coalition 4 NCHD as it is not in line with with the definitions used by the US federal health agencies.

The Coalition 4 ME/CFS claims that adopting the WHO convention of coding CFS to ME together at G93.3 would improve the diagnosis and patient care (see # 2). Actually in countries that have made these changes there has been no improvement in research, diagnosis, recognition or the general CFS worldview.

4. The Coalition 4 ME/CFS claims that research findings support their request. [http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pf page 5]

A section in the proposal is entitled neurological pathology. It states “Pain, debilitating fatigue and *especially post exertional malaise are hallmarks of CFS.” This is not true. Post exertional malaise is not a hallmark of CFS. In CFS (Fukuda), the definition most widely recognized and used in the US, post exertional malaise is minor and optional. If something is optional it is not a hallmark. Symptoms that are listed in the CFS definitions, some may be neurological but not necessarily (see # 2). In total it would not reflect a neurological illness.

Cited research shows findings in some patients (see NCHS statement, #3). Again, researchers may use different terms and definitions so findings may not be generalizable and will not be specifically identifiable in CFS. And some ME findings would be excluded from some CFS definitions. Research findings then may not be applied or will not be recognized or included within the CFS definition or treatment guidelines. If an illness excludes that which you have, then you do not have that illness.

These citations used by the Coalition 4 ME/CFS would be like citing the association of schizophrenia with infectious agents. Infectious agents have been found, but schizophrenia would not be reclassified as an infectious disease.

5. CFSAC has made recommendations to change the name to ME/CFS and code CFS to ME as neurological. “The CFSAC recommended that CFS should be classified in ICD-10-CM in Chapter 6 under “diseases of the nervous system” at G93.3, to be in line with ICD-10 and ICD-10-CA (the Canadian Clinical Modification)” (May 2011 meeting minutes) (See # 3.) We should not try to be in line with the Canadian ICD-10-CA. They have their own health system and conventions. They have a specific ME/CFS definition (Canadian Criteria CCC) that they use based on a Health Canada panel. Health Canada established the “Terms of Reference.” Any researcher may use these criteria but they are not recognized or referenced in the US or by US health agencies in any official capacity. There is no ICD code for ME/CFS so is not a recognized diagnostic entity.

Otherwise ME/CFS is another made up term with different meanings and should not be used in the US any official capacity.

CFSAC should recognized the importance of having the codes accurately reflect the definition congruent with the US federal health system. They should only recommend that which is in accordance with sound scientific and taxonomic principles, and not based on politics or PR or influenced by signs, slogans, posters or tee shirts.

6. The Coalition 4 ME/CFS mentions that NIH has used the term ME/CFS. Other agencies have not. HHS should not allow different agencies to change names or definitions or adopt or use different terminology or meanings, especially any that would run counter to that of other agencies within the department.

7. The Coalition 4 ME/CFS mentions that people use ME/CFS or use ME and CFS interchangeably. Using terms incorrectly and repeating a falsehood does not make it true. In fact, this group is most guilty of publishing and advertising all kinds of ME=CFS=ME/CFS (mis)information. One cannot cite ones own information or errors as an example or for justification. It is as if saying that they are the same makes it so. And repeat: CFS, also known as ME…. so this proves it.(?) Say-so medicine is not acceptable.

Anyone can call it or use whatever term they want (e.g. CFIDS), and researchers can research whatever they want, but federal health agencies should adhere to scientific principles which require specificity and consistency of accurately designating what they are studying and to which patient cohort it applies and what it is called, *and all must match, not used differently or to mean different things. It is this disconnect regarding definition/codes/terminology which has confounded research results and created the inconsistency and confusion, and resulting in the lack of acceptance, understanding or progress. Without agreed upon objective diagnostic criteria that is named specifically and used consistently there can be no compelling science or meaningful research results.

8. The Coalition maintains or agrees that ME is not diagnosed in the US or seen in medical records. This is not true. ME is diagnosed in the US. It is not well recognized, which is a problem, but this does not justify keeping it as a CFS (mis)diagnosis. It is of course not as common as a vague, broadly defined fatigue syndrome, but prevalence does not justify eliminating ME.

9. Myalgic Encephalomyelitis – International Consensus Criteria (ME-ICC) ["Myalgic Encephalomyelitis - International Consensus Criteria" Journal of Internal Medicine, Volume 20, Issue 4, p 327-338 [http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full]

The Coalition 4 ME/CFS claims that the ME-ICC supports their position. ME-ICC states: “The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).”

“The scope of this paper is limited to criteria of ME and their application. Clinical and research application guidelines promote optimal recognition of ME by primary physicians and other healthcare providers, improve the consistency of diagnoses in adult and paediatric patients internationally and facilitate clearer identification of patients for research studies.”

“Using ‘fatigue’ as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has ‘chronic fatigue’ attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME/CFS. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day.The International Consensus Criteria (Table 1) identify the unique and distinctive characteristic patterns of symptom clusters of ME”.

The ME-ICC conveys that ME has been erroneously called CFS and should not be. ME should be called ME, NOT CFS. It highlights the misuse of “fatigue” and the confusion it has caused. It specifically objects to and rejects having fatigue attached to the name so it would NOT support the use or creation of ME/CFS, which is the basis for all of the Coalition’s ME=CFS=ME/CFS positions.

This ME-ICC definition is clearly about the distinction between them. The ME-ICC is about the definition, scope and application of ME. The stated purpose of the ME-ICC was to “help clarify the unique signature of ME.” Not CFS. The Coalition 4 ME/CFS proposal to merge ME and CFS with the same ICD codes would be the opposite of what the ME-ICC is calling for.

10. The Coalition claims that coding ME and CFS together would offer protection from inclusion in the DSM. It is really the opposite. The WHO and the American Psychiatric Association (APA) are collaborating on the revision process for ICD-11 and DSM-V to ensure consistency and to achieve ‘harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria.’

The concern with the harmonization of the ICD and DSM is related to the overlap and mixing of these terms and definitions that allow the constant shifting. CFS definitions are so broad and vaguely worded that those with mental health issues can fit the definition, thus allowing psychiatrists to cherry pick the patients. But if they fit the definition, they “have” CFS. The mixing and connecting of ME to CFS is what would CAUSE the possibility of inclusion of ME in the DSM. What is being proposed by the Coalition 4 ME/CFS is to create a mixed cohort at G93.3, and these conditions could eventually be moved to the mental health category. If ME is recognized as a distinct neurological illness with testable pathology and not an unexplained fatigue syndrome, it would not belong in the DSM.

ESME recently released a statement. ESME recommend that: Researchers use the ICC exclusively and call the disease ME in all written documents about their research. Government agencies/foundations give research grants to scientists using the ICC. Government agencies/institutions officially adopt the ICC and post them on official websites. Doctors use the ICC to diagnose patients and write only ME G93.3 in patient journals or in all written documents about these patients. Advocates/patient associations speak with one voice by agreeing to call the disease ME.

ME should not be called CFS. CFS should not be called ME. Thus ME/CFS should be abandoned, which is what the Coalition 4 ME/CFS is using. This proposal by the Coalition 4 ME/CFS to NCHS is the antithesis of the ME-ICC and ESME statement.

To voice your objection to this proposal to code ME and CFS together, contact NCHS , Donna Pickett Deadline for comments is Nov.18. **This deadline has passed.**

Association of XMRV with CFS: New consensus opinion?

Cinda Crawford — Wed, 07 Dec 2011 18:37:25 +0000

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)

The Cheney Clinic, December 5th, 2011, published in Public Relations
Topic: Changing status of XMRV – HGRV research

There is still no consensus in either direction for the existence or non-existence of XMRV associated with CFS cases. Studies out of Europe (Belgium and Germany) and the US (Cornell) as well as elsewhere which are separate from WPI, FDA and NCI are demonstrating evidence that cannot be due to a mouse contaminant for XMRV association with CFS. The strongest supportive study to date was reported by Dr. David Strayer out of Hemispherex Inc, (Philadephia, PA) at IACFS/ME in Ottawa and showed that 7/8 CFS cases and 2/17 controls were positive for XMRV using Next Generation Sequencing (NGS) technology available at Roche Labs in Germany. NGS is not susceptible to mouse contamination and demonstrates that XMRV is in fact integrated into human DNA which means it is a human virus. The Science (Lombardi et al, 2009) study still stands as the best evidence that this virus is transmissible from cell to cell and the studies out of WPI and Belgium demonstrate an immune response (antibodies) to XMRV and a cytokine profile (WPI) that suggests it is pathologic.

I expect that Next Generation Sequencing or NGS, which does not have the flaws of PCR technology in evaluating a poorly understood human virus(es), will be the best way forward to a consensus as to the question of association of CFS with XMRV/HGRV. This preliminary report out of Germany using NGS as well as human immune response data supports the association of XMRV with CFS, despite the flaws exposed in the current primary PCR technology used to define this scientific debate which appears very messy and excessively bio-political to date.

CFS News: What’s Happening?

Cinda Crawford — Fri, 02 Dec 2011 13:40:22 +0000

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

1) Do you keep up with everything CFS? I’m betting, “No.” You’re more likely a person with CFS or you’re the caregiver of a patient (child, teenager or adult). You’re doing the best you can to figure out what’s wrong with “you” and you’re trying to get well!

2) You only have so much time and energy available to pay attention to a specific topic, such as what’s really happening in the world of CFS News. You’re glad to know that real and important issues are being discussed, but unless your life allows the activity, you may miss a few things from time to time.

That’s assuming you don’t have such severe brain fog that you can keep up at all. If you can’t, I do my best to bring you the highlights. Such services as either reading and accessing the information here on the website or signing up for my RSS feed, and you’ll still get everything and miss nothing! The information will simply come to you easier, where and when you’re ready to consume it. Find the RSS sign up box with (orange with white stripes) in the right-hand column of this page. Sign up today!

3) You want to lend support to advocacy, awareness or research issues, as best you can. But can you do everything you want to do? Some days, can you meet any of those goals at all?

4) For most people, it’s difficult to feel that we’re getting ahead, especially in the area of research. It’s there; it’s significant. It’s there; it proves nothing. The money is not there at all…because past government officials tried to pull the wool over everyone’s ideas and abscond with the research money for their own pet projects. On and on the story goes. Where or where does the money go?

I urge you to bookmark this page right now: The 2011 November CFS Advisory Committee meeting. There are quite a few videos posted on this page. If you do this, you can watch some now, some later when you have down time. Example: when you’re suffering through your husband’s ball game. Instead, you can quietly don a pair of headphones and really learn something instead! I’m not saying that every bit of this material is worth writing home about, but there is good stuff contained within these multiple video presentations. Over the Internet is a great way to see and hear it, if you didn’t attend the CFSAC Advisory Committee meeting and conference in person.

Stay tuned for more and learn what’s happening in the field of CFS News.
AND LEAVE A COMMENT!

Thanks, Cinda Crawford
Your host of the Health Matters Show

XMRV and Contamination Link

Cinda Crawford — Mon, 28 Nov 2011 18:21:09 +0000

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:

Contamination link

Contamination has been a constant theme in the research community over the past 9 months. Finding equal or more positive samples in the negative controls suggests contamination has occurred. In this study a genetic analysis of the positive samples indicated that it had occurred in the WPI. The analysis found that the XMRV the WPI picked up was almost identical to that produced by a lab cell line called 22RV1. This suggested the virus the WPI found had never entered a human body; ie was lab contaminant. (At the Ottawa conference Dr. Silverman, produced evidence of contamination in the original study, which resulted in several parts of the original Science paper being retracted, including the PCR results.)

Find all of this post on Phoenix Rising’s blog.

Thanks, Cinda Crawford
Your host of the Health Matters Show