CFS/ME Guide

Welcome to the Chronic Fatigue Syndrome/M.E. Guide. The Wellness Quest will include information here about medical, homeopathic, naturopathic and spiritual resources and breakthroughs for this unique category of disease.

What is CFS/M.E.? As Dr. Myhill adequately defines it: “Chronic Fatigue Syndrome is the symptom caused by mitochondrial failure.”

And M.E.? ME stands for myalgic encephalomyelitis. Myalgic means muscle aches or pains. Encephalomyelitis means inflammation of the brain and spinal cord. The U.K. and other nations have given CFS a more respectable label in my opinion. From what I understand, it also helps with opening doors for better care. I don’t suffer from inflammation of the brain and spinal cord from what I’ve discovered thus far. So, I stick with CFS to clarify my own situation.

CFS is often associated with fibromyalgia and the two are often experienced together but there are some who have CFS without fibromyalgia. For years, I just assumed that to feel pain along with the fatigue and other symptoms was par for the course but it’s now specified as fibromyalgia and can be experienced without the other symptoms.

[Update: October 25, 2014 – The seriousness of the condition of the heart with CFS/ME has become more of a concern in my own health story. For that reason, I’m inserting a recommendation that you weigh the fact that many CFS-savvy doctors consider CFS to be a form of cardiomyopathy with the one saving factor being the fatigue itself. It forces you down which saves your heart. Dr. Myhill and Dr. Cheney both recount the systems of the body that the body itself gradually diminishes in order to preserve blood pressure particularly with CFS (and is not uncommon in general when poor health or terminal illness is involved). For anyone having odd or troublesome arrhythmias or heart concerns who has been checked by a cardiologist with minimal to no problems detected, I recommend you research Dr. Paul Cheney’s work as well as Dr. Myhill’s recommendations and observations about the heart in CFS/ME. Given my grandmother’s own story, I take the function of my heart very seriously and consider CFS to be the equivalent of heart failure. But, hopefully, highly manageable heart failure. Of those with CFS/ME who die from heart failure, the University of Maryland research reveals the median age at 58.7. So, yes, it happens. 3 mortality risks have been identified, not that CFS sufferers are dropping like flies: 1st – heart failure; 2nd – cancer and 3rd – suicide. Is it taken seriously enough in the US? No, not even slightly.]

For a more detailed definition of CFS, I borrow from Dr. Teitelbaum’s website here:

“Chronic fatigue and immune dysfunction syndrome (CFIDS or CFS) is a group of symptoms associated with severe, almost unrelenting fatigue. The main symptom is fatigue that results in constant and substantial reduction in your activity level. Oddly, despite their constant exhaustion, people with CFS typically find that they can’t sleep.

CFS can begin gradually, usually following a period of severe physical or emotional stress. It can also begin suddenly, feeling like a “drop dead flu” that you can’t fully recover from. Other common symptoms may include:

  • Insomnia
  • Achiness
  • Forgetfulness
  • Brain fog
  • Increased thirst
  • Bowel disorders
  • Recurring infections
  • Easily exhausted
  • Weight gain
  • Low libido

CFS’s sister illness, fibromyalgia syndrome (FMS or FM), is characterized by muscle pain — sometimes all over the body, or sometimes only in specific areas. These painful areas can be transient or persistent. FM pain is caused by a shortening, or tightening of the muscles. These muscles need sleep and nutrition, among other things, in order to heal. Since CFS/FM sufferers rarely sleep well, these muscles stay knotted and painful. For most sufferers, CFS and FM are the same illness. However, some people have fatigue without pain, whereas others have pain without fatigue.”

My own experience of the fatigue of CFS at its worst can only be described as so severe and debilitating that a state of unconsciousness is preferable to the horror of feeling this level of tiredness. Fatigue. Tired. Neither word begins to describe it. However the free radicals floating in the bloodstream of CFS sufferers is, when CFS is at its worst, at the same levels of people undergoing chemotherapy. This gives a clue as to how bad it can get.

And CFS is cyclic. I have had years of convincing myself I had kicked CFS with a few minor glitches here and there to turn around and find myself in a ravine of horrible symptoms ruling over my life, with no discernible cause for the turn. It’s like the body decides it’s time to kick into illness mode. And it’s not in the head. I can only guess that accumulated years of not realizing how badly I needed magnesium and other supplements finally put CFS on the front-burner of my life, brewing up all kinds of nasty.

The following recommendations come just as clues from my own recovery process. But I do hold foremost to the truth that we are each one of us unique and therefore one approach is highly unlikely to have all the answers for everyone. In fact, it may only have 1 part of the ongoing puzzle that helps only part of your own CFS/ME story. Every little bit helps if only to shed light on your situation. And, in my own experience, some protocols help tremendously initially and then it becomes clear there’s more I need to learn in order to continue to heal and recover. Over and above all recommendations here is the assumption that you’re working with a practitioner who is knowledgeable of and has experience treating CFS/ME. I actually have a shortage of assistance so have been forced to go it alone. So, these “recommendations” are really just ideas of possible helpful actions. I do firmly believe in the vital importance of recommendations 1 – 3 & 7 – 10 as absolute musts. Recommendations 4 – 6 may not apply to your CFS/ME story as significantly as they have to my own.

#1 Recommendation: Stop eating sugary foods and simple carbohydrates. Now. No desserts. No candy. No soft drinks. Minimal starchy carbs. The Stone Age or Paleo diet is a good idea ONLY when you’re out of the worst range of symptoms. In other words, when you can do the majority of your day NOT in the reclining position or lying down, then you can gradually shift to a diet more Paleo focused. Energy is the problem. Carbs can provide energy. But there are many beautiful substitutes for pasta and potatoes. Quinoa, for one. Nuts and seeds. Yogurt (no sugar). And when you must have some sweetner, use Stevia or Coconut Secret. I bake almond flour bread and when I need a carb kick, I’ll spread sunflower seed butter on it and eat it with a cup of fat-free milk. It’s yum!

#2 Recommendation: Rest more than you work if you’re in a crash state. If you have CFS, you know what “crash state” means. Don’t push. Rest. And let your house go to hell. Let someone else do the cleaning and cooking and shopping as much as you can. I’m a single mom. It’s not easy. But teenage kids can cook and clean and. Yeah, you get the picture. It sometimes means a revolution. But you’re worth it. Do this for weeks or months if you must. Otherwise, you’ll fall back into crash state again and sooner rather than later.

#3 Recommendation: #3 recommendation incorporates a set of supplements CFS/ME sufferers should never be without no matter how well they’re doing. Start using d-ribose (NON-GMO! See supplements page for detail.) in powder form in water immediately as well as 1 to 2 grams of acetyl l-carnitine and r lipoic acid; 200 to 400 mg of CoQ10 (I use Ubiquinol) and Krill oil DAILY. I take the d-ribose in my coffee every morning and if I’m having a particularly unavoidably active day, I take up to 20 grams of it. Or more. But maintenance levels are 15 grams, sometimes less. Take the ALC, RLA, CoQ10 and Krill together for optimum absorption. I break the amounts in half and take one dose of each in the morning after my breakfast and another dose in the afternoon. You can follow Dr. Teitelbaum’s recommendations for dosage found on his website. And/or check on Dr. Myhill’s recommendations and decide for yourself what will help. I follow Myhill’s recommendations. Do this everyday for the rest of your life, cutting down to maintenance levels when the symptoms abate, revving back up when life is requiring more activity. Add vitamin B3 (niacin…will cause a flush unless you take it as niacinamide) daily as well per Dr. Myhill’s input. I do this at night since it has a calming effect.

Again, these are daily and lifetime. Why? Because while experts have ascertained that mitochondrial failure is the major cause of CFS/ME, there’s no cure for the particular predisposition to this failure. It’s a failure of ATP production and once the situation is brought well under control, CFS/ME can seem to be gone but lapses can occur when the basic malfunction is not respected and life takes a toll. Maintain minimal levels of d-ribose once you feel you’re well recovered keeping in mind the tendency towards failure of ATP is your particular cross to bear. Olympic athletes with CFS manage. We regular folks can too.

#4 Recommendation: This one is separate ‘though it’s a daily must. It’s too critical not to stand out and stand alone. MAGNESIUM. Incorporate magnesium citrate (or the form of magnesium recommended by Myhill/Teitelbaum) into your daily supplement routine being careful of any underlying health issues. I chose magnesium citrate since my research indicated some doctors (the unafraid types) recommended injections of the citrate form as superior for rescuing the heart. If a supplement has magnesium ascorbate in it, I don’t even count it. It’s a big fat zero. I took up to 7 grams a day orally but had to use other products to counter the side effect. It was well worth it. I recommend gradually increasing and especially recommend Jigsaw (see Supplements page). Update 5/11/2013 – The superior way to get magnesium is via injection. I haven’t yet found a doctor or healthcare professional who’ll work with me on this. But I’ve actually cut back on the oral dosage and use my resting moments to get magnesium oil on the skin since I believe it’s a better way to get magnesium, secondary to injections of course. I do this twice a day and try to get at least 2 ounces absorbed. Bedtime is a good time for the second topical dose. My goal is to incorporate the use of a nebuliser for magnesium absorption.

#5 Recommendation: If you feel you need the energy boost and cleansing bonus, take Olive Leaf Extract everyday to kill off parasites, microbes and other nasties. Then keep on. It’s a great energy resource and ongoing immune support.

#6 Recommendation: Take any supplements that aid the function of the mitochondria. I take Bio PQQ, Vitamin K2 and Bovine Colostrum. They all positively affect the function of the mitochondria.

#7 Recommendation: Colonize your gut with good stuff. I take a hefty probiotic along with bovine colostrum and I drink kombucha tea whenever I can. Fermented foods are good for this as well and that’s my next goal, to ferment my own foods.

#8 Recommendation: Stop allowing people – doctors, friends, whomever – to refer to CFS as a depression or psychological illness. That’s nonsense. It’s depressing to be sick but depression didn’t give you CFS and hearing that it’s all in your head will only increase your stress and make you depressed. Don’t be nice about this. Kick ass if you have to, from time to time. Find a new doctor. For years, the only doctor I could find who didn’t treat me like a depressed lazy hypochondriac was an osteopath. Consider alternative healthcare. There are many options. Drown yourself in affirming support and move forward knowing you can help yourself.

#9 Recommendation: Pace yourself. Dr. Myhill has a program she calls PACE and it’s brilliant. It’s based on a systems analysis focused on the human body. It’s pure logic. Explore her website. But basically, depending on your level of debilitation you’ll have to give your body resting periods for the various times of activity. For example, if you’re in a really bad phase, if you get your groceries bought after an hour and a half of shopping and unloaded and stocked up, you’ll need probably 2 or 3 times that much rest. And honestly, if you’re that bad off, you shouldn’t have gone shopping! At this point, I’m up to 1 to 2.5 hours of rest in the middle of my work day. And if I don’t get that rest consistently, I slump back into a less manageable reality of CFS struggle. If I have too many demands in one day, the next day has to have compensatory rest. For instance, if there are several student assemblies I must attend and shopping and meal preparing, laundry and social media support and meetings and counseling my kids in one day, forget about the next day. I have to rest for hours. And sometimes a day and a half to 2 days of rest is required. This is especially true when there’s too much disruption of normal routines in one day with extra physical and mental activity thrown in. This is true when I’m in the mid-range of maintenance whereas high level functionality means less rest is required. But if I rely on that for very long, I slip and have to take more rest. So, the bottom line is, no matter how well you’re doing, you shouldn’t let too much time go by without having a down day where you do nothing but chill out. Keep in mind, Olympic athletes manage CFS. There are levels of daily accomplishment possible once the groundwork is laid and the maintenance and discipline is mastered adequately. I’m nowhere near Olympic level health but it’s encouraging to remember this can be done!

#10 Recommendation: Protect your sleep and keep the stress down. I could easily put this into two separate categories but 10 recommendations is plenty. Stress is a physiological reality in the CFS body whether stressful situations are occurring or not. Do what you can to avoid high stress realities and high stress news. Find your spiritual support system and rest in it diligently. Meditate, pray, whatever works for you. For me, nature is part of the de-stressing routine. I have to have great heaping gobs of it.

Guard your bedtime and don’t let it slip often. Take Melatonin to help with sleep if you must. L-Theanine is a great anti-anxiety amino acid that also helps the heart and it’s something I take at bedtime along with Melatonin with great results. If I’m feeling especially wired, I’ll take my magnesium citrate along with niacinamide to calm me further. Insomnia is a typical problem with CFS sufferers and has been a personal struggle since my childhood. These methods are improving my sleep.

#1 Recommended Resource: Dr. Sarah Myhill

It’s difficult not to put Dr. Teitelbaum first here since I do follow his S.H.I.N.E. protocol as much as possible and find his website to be more easily navigated and user-friendly. Also, he has suffered from CFS. But he’s the second recommendation because I cannot stress enough how important it is to recognize the mitochondrial failure component and Dr. Myhill has nailed that focus squarely. She also has more of a natural focus. She’s based in the U.K. and has no U.S. offices at this point but her online information is tremendously helpful and there are possibilities for using her tests regardless. Check out her website for information.

Another reason Dr. Myhill is my #1 recommended resource? Read below:

“CFS – Psychological or Physical? This seemed such a stupid question that I never bothered to consider it. I estimate I must have now (2010) seen over 10,000 patients with CFS and it is clear that CFS is primarily a physical disorder. It is only when patients have been ill for several months and been told by their physicians that nothing is wrong that they get secondary psychological problems. The only place where CFS does not exist is in the brains of small-minded doctors.

The reason the “physical or psychological” debate continues is because the usual tests for pathology come up showing normal results. GPs find ill patients, do the usual screening tests which come up normal and feel this allows them to turn round to patients and conclude there is nothing physically wrong. If, however, the screening tests included SPECT scans; sensitive tests of the hypothalamic-pituitary-adrenal axis; T cell subsets; biopsies to look at mitochondrial abnormalities; mitochondrial function tests, antioxidant status and tests of xenobiotic loads; enterovirus sequences in muscle and brain; trace element levels, vitamins, essential fatty acids and amino acid profiles, then lots of abnormalities would be found. Doctors would diagnose serious metabolic and hormone problems and patients would be taken more seriously.

With any illness there is a psychological component, but with CFS this is secondary to a physical illness. I am always amazed how well adjusted are my CFS patients and depression is not a common feature. The difference is that CFS sufferers want to do things, but if they do they feel ill. With depression, patients don’t want to do anything, but if you push them to exercise, they actually feel better. In contrast to CFS, in depression one sees early morning wakening. I suspect this is why the “stimulating” antidepressive drugs seem to make CFS worse – they increase the desire without improving the performance and therefore worsen the frustration.

The recent news (end 2009) that 90% of CFS patients test positive for the XMRV virus compared to 3% of controls clearly puts CFS into the physical camp.” Dr. Sarah Myhill

Depression is not the cause of CFS. I had years of high physical output and ability with horrid bouts of depression throughout those years. Off and on, but the physical stamina and ability were high. CFS years? You have to fight becoming depressed because you so long to do and go and act and cannot. This naturally creates some depression. But even that is something the CFS sufferer can work through effectively. Dr. Myhill gives highly vital information on the function of the mitochondria. And I’ve found additional mitochondrial support beyond her recommendations.

Dr. Myhill’s book on CFS is a must.

#2 Recommended Resource: Dr. Jacob Teitelbaum

Dr. Jacob Teitelbaum keeps relatively active on his Facebook page and website with updates and insights. His website is loaded with great information and resources for improving the CFS situation. I have his book, From Fatigued to Fantastic, which is a loaded, intelligent, info-packed resource for the CFS-sufferer. It’s not a good idea to work on getting on top of CFS without this book or Teitelbaum’s guidance. He does recommend some prescriptions and I’m typically anti-prescription personally but I still find his recommendations and encouragement to be invaluable support. I recommend his videos, books and every single page of his website as absolute musts for getting to a place of thriving in spite of CFS. He’s based in the U.S. and has some practices who utilize his protocol here and there across the U.S.

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3 thoughts on “CFS/ME Guide

  1. Pingback: Cellular Magnesium | The Wellness Quest

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