Treatment

Treating Chronic Fatigue Syndrome (ME/CFS) on a Budget by Cort Johnson

Treating chronic fatigue syndrome (ME/CFS) can be very expensive.  Forget the doctors visits and tests, the cost for the supplements used in treating this multi-symptomatic disease can easily run into the hundreds of dollars a month.  Many people with chronic fatigue syndrome (ME/CFS) simply lack the money to a) retain an often very expensive specialist or b) fully engage in a treatment plan once one is engaged.  What is a financially strapped ME/CFS patient to do in this high-priced medical world?  Is he or she doomed to linger on simply because they have fallen through society’s safety net?

To some extent the answer is no. Treating CFS is difficult and really requires the services of skilled and experienced professional.  Even then, as we all know, success is not at all assured. For those unable to visit a physician, however, basic treatment protocols by chronic fatigue syndrome (ME/CFS) doctors available on the web and in books can give one a start. 

But what if one cannot afford what turns out to be a rather extensive regime of informed but still self-prescribed nutriceuticals?  Is there no way to make real progress with this disease? I believe there are things that even those of us on very tightened budgets can do to make a difference in our health.  Most of the things below have worked very well for me or others - that certainly doesn't mean they will work for others - but they are worth a try.  (Please add to this page by sending me your own suggestions for managing CFS on the cheap by e-mailing me at phoenixcfs@yahoo.com)

$100 a Month Treatment Plan - For the financially challenged (but still viable) CFS patient check out Ken Lassesen's suggestions for treating CFS on a $100 a month. 

Some 'Bare Bones' Treatment Suggestions

DIET– There are some very simple prescriptions: reduce sugar intake dramatically (candida, hypoglycemia, weight gain), eat little or no processed or refined foods (candida, hypoglycemia, weight gain, etc.), avoid preservatives and artificial ingredients (detoxification), eat whole foods, cut out fried foods, eat as many vegetables, raw or cooked, as you can.  Don't overdo on fruits. Avoid  fruit juices, sodas, etc.  Have a suitable amount of protein but avoid large amounts of difficult to digest proteins such as red meat.  Avoid low protein diets. Most of these are just commonsense. A recommendation one often sees that is to increase ones intake of salt.  

Nothing is simple, however in CFS, not even diet. Too much red meat puts me to sleep and interferes with my digestion.  I know someone, however, who thrives on red meat – it gives her an immediate energy boost.  Similarly, while many people with CFS appear to do better on high salt diets Lauren Hillenbrandt, the author of Seabiscuit, can only tolerate a low sodium diet.  Many people advocate avoiding dairy products because of allergy problems. I did for twenty years and then tried them one day and responded very positively to them!  The search for the proper diet, just like the search for a treatment protocol is an individual one.  In this section several different types of diets are reviewed that may help to broaden that search. 

Avoiding sweet things and fried foods can be difficult - they are, after all, comfort foods and when you're ill you can use all the comfort you can get. Most chronic fatigue syndrome (ME/CFS) patient probably know of that the link between sugar and yeast (candida) infections suggests sweet foods should be avoided.

There's more to the sugar question than yeast, though. Some studies suggest that many ME/CFS patients may have a metabolic disorder; they tend to be overweight, if not obese and have abnormally high waist-hip ratio's (lots of fat around the waist), have high levels of oxidative stress and poor lipid profiles (e.g. cholesterol). Fat around the waist is a particularly nasty substance - it pumps out pro-inflammatory cytokines and increases the risk of heart attack. Nobody with CFS needs any more problems that they already have - cutting down the sweets and fats, particularly fried foods, is important.

Some foods, on  the other hand, may be beneficial.  Cruciferous vegetables (broccoli, cauliflower, brussel sprouts, turnips, rutabagas, cabbage, etc.) and vegetables from the lily family (onions, garlic) appear to be particularly healthful. There is some question whether people with mercury problems should ingest many of these vegetables. I have mercury problems and the cruciferous vegetables are nothing but helpful for me but some caution should be noted. Dr. Cheney, in fact, has had success with onions and garlic in patients who cannot tolerate other means of mercury detoxification. One simply needs to monitor ones reaction to these ordinarily very healthy vegetables.

There are some food supplements that are relatively cheap and are just packed full of nutrients. I can eat barley grass tablets like candy. They're not particularly tasty but they work for me. The nutritionist Dr. Bernard Jensen has long advocated getting more and more greens into our diet. Other concentrated green tablets that include such things as wheat grass, spirulina, etc.

Someone recently pointed out an even cheaper to get really high levels of these important 'foods' into our diet - growing wheatgrass. Wheatgrass is very expensive to buy but cheap and easy to grow. Some ME/CFS patients have had success juicing vegetables.

 Dr. Cheney now believes raw vegetables are particularly beneficial (See The Cheney Files). Of course all vegetables are high in nutrients and some fruits, in particular berries, are high in antioxidants. 

Food Combining - While you consider what diet works best for you consider enhancing your digestion by combining foods so as not to tax your digestive system.   People with CFS don't need to expend extra energy digesting their food. Proper food combining may stop the need to sack out for an hour after a meal.  Find out about proper food combining by clicking here. 

Allergy Free Diet– Allergy may be an under-recognized factor in CFS.  Food allergy can cause every symptom found in CFS; it can put you to sleep, give you headaches, cause you terrible fatigue, cause problems thinking, make you irritable, make your joints hurt, give you backaches, etc., etc.  The first specialist I saw for this disease was an allergist.  She had successfully treated lots of CFS-like cases.  My strange reaction to energy enhancing treatments was beyond her ability to treat but I was convinced of the efficacy of allergy treatments. 

Dr. Cheney has stated that about 30% of his patients receive significant benefits from avoiding food allergens and about 10% achieve a real breakthrough.  The first step is to start removing common allergens (wheat, milk, peanuts, eggs, soy, chocolate, corn) from your diet and see if you have more energy, or if you sleep better or think clearer or have better bowel movements, etc. An obsession with a certain type of food (just gotta have that glass of milk!) that gets worse when you stop eating it is often a sign of food allergy. One way to check a food is to stay off it for a week or so and then introduce it in a big way all of sudden.   There are several ways to check food allergies.  Here are two sites that spell them out. 

Rotation Diets:  Rotation diets allow you to avoid allergens and to keep foods from becoming allergens.  Dr. Leiberman has an excellent site that spells out how to construct a rotation diet.

No-Grain Diet – the idea of a no-grain diet is almost foreign to our ears.  Aren’t grains the staff of life?  Don’t they occupy the base of the food pyramid? Can you avoid grains and still find enough to eat?  (No, yes and yes!) Celiac disease – an intolerance of gluten - can mimic many symptoms of CFS.  The human race survived on meat, nuts, starches and fruits and vegetables long before grains were ever discovered.  The Eat Right For Your Type Diet is predicated on the fact that ones blood type suggests whether one is more suited to a hunter-gatherer type of diet or a grain-based farmer type of diet.  Its worth checking out.  See Dr. Mercola – an advocate of no-grain diets and the author of a book on them – for more information.

Macrobiotic Diet – Macrobiotic diet was the first thing that ever worked for me.  A grain and bean based diet with no meat or other potentially ‘toxic’ ingredients, the macrobiotic diet is a good cleansing diet for those who can tolerate grains.  I felt great at first but was unable to continue after a time as I was losing too much weight.  I believe that this very clean and easily digested diet can be very helpful for some people with CFS.

Eat Right for Your Type -  It seems clear that the allergies, digestive problems, etc. often found in CFS patients make finding the right diet an individualistic one.  The author of this book believes that everyone's body is suited to a specific type of diet and our ignorance of that fact can lead not only to reduced performance but ultimately to disease. The secret lies in our blood type.  The author notes that the different blood types (A, B, O) evolved during times when our diets were changing.  He suggests that people with the blood types that evolved during the agricultural revolution are better adapted to eating grains, dairy, etc.  The 'neanderthals' (hunter-gatherers) that were less able to adapt to these new food sources have a different blood type.   I met an nutritionist who thought this book was a major breakthrough.  Click here to enter an extensive website put together by the author.  

Breath Right - Some CFS patients have gotten excellent benefits from employing different breathing techniques to more fully oxygenate the body.  Dr. Cheney's theory regarding poor microcirculation in CFS could explain some of the benefits seen.  I have found one breathing exercise Dr. Cheney uses to increase oxygen levels particularly effective. It involves breathing in through the nose to the count of four, holding ones breath to the count of seven and then releasing ones breath through pursed lips to the count of eight. Do this four or five times twice a day - it works! The Butyeko method has proven beneficial for some. To check it out click here. Dr Gupta, a published author, uses a variety of breathing and meditation techniques to treat his patients.

Meditation –  'Mind : body exercises have played a prevalent role in many CFS books from the beginning.  If CFS encompasses a disorder of the stress response system as it seems to, then techniques for managing stress can be very valuable. Much evidence gathered over the past 20 years ties immune responses to neuroendocrine functioning. Since the two systems talk to each other all the time a dysfunction in one can perturb the other. Thus certain types of immune dysfunctions can impair cognitive functioning, disrupt mood, leave one fatigued and effect sleep.  Some of the cytokines believed to cause these symptoms (IL-1, IL-6, TNF-a) are believed to be upregulated in CFS.  Just as the immune system can effect the brain, however, the brain can effect the immune system.  This is where 'mind : body' exercises come into play. Techniques aimed at managing the central nervous system can help to counteract the negative signals given it by the immune system and enhance immune functioning.

These techniques are generally meditative in nature.  They include meditation on ones breath, on mantras, on visualizations.  A new website, MCS- International has opened that has an excellent meditation the author has used to ameliorate his CFS and MCS.  I am not an expert in this area but the best book I have come across is John Kabat-Zinn's Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face the Stress and Pain of Illness.  A behavioral scientist who is also a zen practitioner, Kabat-Zinn is introducing meditation as a therapeutic tool into mainstream medical practice.  An excellent writer he skillfully guides the reader into the benefits of different types of meditation. 

In my experience these therapies can have powerful effects.  Sitting meditation left me with greatly increased energy and as side bonus, increased libido - probably from deeper breather and greater oxygenation of the pelvic area.  The repetition of positive statements can also be quite powerful. These so-called 'affirmations' are a popular tool in some recent spiritual movements but they date back to beginnings of Buddhist philosophy. The sayings counteract the mostly negative messages given to us by the mind ('I hate this disease', 'Why can't I do the things I want to do?', 'This is hopeless', etc.) that stimulate the stress response and cause negative chemicals to flood ones body.  These techniques give one  a well needed time out from the stress of dealing with a chronic disease. During these meditative techniques the breath slows, the mind and body relax, the sometimes constant worries drop away - one is renewed.  Prayer probably has the same effect. 

Stretching - Stretching has been a major source of energy for me. If you’ve read my story then you know that I have to discard many treatments because I have a bad reaction to the energy they produce. Stretching is the only treatment I have always included, if only in low amounts, in my treatment program. 

I first started stretching when it appeared that the processes of gravity and aging as well as fifteen years of frustration in dealing with CFS began, had begun to take their on my posture.  As my neck slowly disappeared into my hunched shoulders and my chest shrank I felt my breath was becoming shorter and I had frequent neck and shoulder pains.  My body seemed frozen into a defensive posture - almost as if I was trying to push a rock up a hill.  (Analogies to Sisyphus are certainly appropriate in this disease.)  I looked ahead twenty years and didn’t like what I saw and started to stretch. 

The beginning was strangely disorienting.  Some stretches left me feeling extremely uncomfortable - discombobulated is a good word for it  I had stretched fairly regularly before CFS and had never experienced this before. It simply took some time to get over this reaction.  A new approach to stretching – in the Wharton’s Book of Stretching – was helpful as well.  (I highly recommend this book.)  As I got over my strange reaction it was clear that I had bottled up a great deal of energy in my seemingly frozen musculature.  After stretching I had more energy, I stood straighter, my breathing was slower and deeper, my aches lessened, I felt more alert, I even looked better!

It is clear to me that years of battling anything and shoving negative emotions down and suppressing them only pushes them into our body.  Stretching is a way to release the knots and tangles of the frustrations that build up over the years.  It is not a panacea, it will not make you well but I do believe that it can improve the quality of your life.  

Enemas - Like most people I was not at first excited about shoving a tube into any orifice in my body.  It seemed a decidedly unnatural thing to do. Over time, however, I have received as much help from enemas as anything else. Dr. Cheney says the gut is the most toxic organ of the body.  People with CFS have gut issues ranging from diarrhea to cramping, to malabsorption, to parasites, to irregular and/or poor bowel movements, etc.  I am not saying that enemas are a cure or a treatment for any of those.  I do believe that enemas are an easy way of cleaning some of the sludge that collects in underactive bowels and in the process of doing that can be accompanied by an immediate increase of energy and yes, a feeling of lightness. 

Coffee enemas are my favorite; they are believed to stimulate bile flow and thus remove exponentially more toxins. I am extremely sensitive to coffee - a few swallows of it usually sends me flying and leaves me, a few hours later, with gut cramping.  Ingestion of decidedly more coffee from the other end, on the other hand,  usually leaves me feeling calm, focused and energized.  Its a strange world.  For more information on enemas, coffee and otherwise, click here.   

Detoxing Mercury With Foods - Many CFS patients including me, have concerns about mercury.  Several of the IV chelations are not only expensive but can have harmful side effects. There are safer and cheaper alternatives. A word of caution - moving even small amounts of mercury around in the body can have quite negative effects on very sensitive individuals. The key words here are patience and caution.  I have heard of four cheap chelating agents; chlorella, cilantro and onions/garlic. I had a TERRIBLE time with chlorella - couldn't take a quarter of tablet without getting ill - but that's my idiosyncrasy.  Some CFS patients have used special cilantro tablets or just cilantro in small doses and Dr. Cheney recommends onions and garlic for his more sensitive patients. 

Vegetable Garden – for the higher functioning CFS patient a garden – while a lot of work – provides not only a excellent and healing diversion, but an abundance of high quality foods. One has to build a garden and enjoy its fruits in order to understand what an incredible difference there is between organically grown and freshly harvested food and the stuff that passes for food in the supermarkets. 

One wonders if we  should be surprised that so many of us are ill if given we've been forced to survive on this pale imitation of good food our entire lives? The body is truly an amazing instrument to survive such crap.  Who knows what vital micronutrients we are missing? What phyto-nutrients we commonly go without? Only after creating a garden did I realize that something was badly amiss here.  After my first tomato I knew I had to expand the garden. My first bite of chard (so delicious – who would have figured?) made me redouble my efforts.  If you can create a garden I encourage you to do so.  Yes they are tough in the beginning - preparing the beds wipes me out for a few weeks - but they are worth it.

Exercise - if you've read my story then you know I can 'exercise' (that is I can walk).  You may also know that I love to exercise.  It is not a chore for me - it is something I have always looked forward to - even in the abbreviated amounts now available to me.  Regular, if rather shortened, periods of exercise are very important for me. 

Chronic fatigue syndrome (ME/CFS) doctors  now recognize that careful 'exercise, i.e. activity kept below the levels that exacerbate one's symptoms is very important in this disease to avoid the perils of deconditioning and to increase one's strength and  well-being over time. Please check out the ME/CFS exercise program on the website.   

Nutritional Basics (thanks to Ellie Burns)

Iron For Women- One ME group leader states that her clinic reports serum ferritin tests (but not red blood cell counts) suggest about 70% of women with chronic fatigue syndrome (ME/CFS) verge on anemia. Anemia can cause many symptoms found in ME/CFS and iron supplementation is cheap.

Magnesium Supplementation - Magnesium supplementation is almost universally supported by ME/CFS physicians. Magnesium is a relaxant, an important property for disease that appears to effect the stress response.

Vitamin B-12 Spray - B-12 injections are also very commonly prescribed in ME/CFS. One group leader reports that a B-12 lipoceutical nasal spray by Natures Way is relatively cheap and quite effective.

Melatonin for Sleep - Chronic fatigue syndrome (ME/CFS) physicians again and again touch on how essential it is that patients a good night's sleep. Melatonin is a cheap and easy supplement that has helped many ME/CFS patients. I recommend the sublingual brand from Prohealth. For more on melatonin in ME/CFS click here.

Salt to Increase Blood Volume  - Blood volume appears to be low in chronic fatigue syndrome (ME/CFS). Some ME/CFS patients have improved simply by increasing their salt intake a bit. Tomato juice is a high sodium drink.

More Pricey - But Good Investments

Colema Boards  - Colema boards are not inexpensive; they run about $200.  They are included in this section because they pack a great bang for the buck.  If enemas agree with you and you can afford it you might consider getting a colema board.  Anyone who's tried colonics knows how effective and, unfortunately, how expensive they are (@$60 a session).  If you buy a colema board you can do a poor mans colonic for only a fraction of the cost. Yes, you don't have a machine pumping gallons of warm water straight up your colon  but you do have a board, a tube and, if necessary, a bucket - and what else do you really need?   If you buy one all you need is a little time to yourself and some pure water.  Several sites sell them; here is one. 

Sauna– If you can afford a gym membership you can try sauna.  As saunas are often by bleach ridden pools in gyms they are not a great choice for the chemically sensitive but they can a very helpful means of detoxing.  Saunas are not for everyone; they are a rather difficult and sometime painful mode of treatment. Take them slowly, drink a lot of water and take niacin before you go in in order to flush the toxins out. Take vit. C, E, taurine,  and a tablespoon of fiber and cold pressed oil to bind them up on the way out.  Saunas have left me feeling beaten up and bedraggled.  They have also left me feeling clean and energetic. Never has the world seem so bright and sparkling as after I have stepped out of a good sauna. Several times I have  also knocked out a long lingering cold in the heat of a sauna. 

Whey Protein - Good whey protein used to be really expensive but its not anymore. A can of Whey protein that will last for months costs about $45. Check out the glutathione section for all the stuff whey protein and other supplements can do. I recommend Renewpro - it worked well for me.  You can't get the good stuff at health food stores - you have to go online.

Other suggestions?  Contact me at Phoenixcfs@gmail.com

(This and all sections of the Phoenix Rising website are compiled by a layman. They are not a substitute for a physician and are for informational uses only. Please discuss any treatments in these pages with your physician.)