Chronic Fatigue Syndrome (ME/CFS) on a Budget

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?

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.

Low Cost Drugs

Check out Phoenix Rising’s page on ways to get deep drug discounts and a blog covering the NeedyMeds/Pandora webinar that did the same.

PACING

Pacing so that you avoid the push/crash cycle often plays an integral role in improving wellness and laying the foundations for improved health. Check out our section on the Pacing and the Energy Envelope  and CFIDS Self-Help for lots of tips and online classes on how to pace and how to manage this illness effective to feel better and become more healthy.

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 allergies 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. Clickhere to enter an extensive website put together by the author.

Mindfulness Therapies

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. Ashok Gupta, a recovered CFS patient has a $200 7-hour DVD series that provides a variety of meditative and neurolinguistic reprogramming techniques developed for people with ME/CFS.

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 storythen 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.

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 cheaply produced.  Only after creating a garden did I realize that something was badly amiss in our food production system. After my first tomato I knew I had to expand the garden. My first bite of chard (so delicious – who knew?) made me redouble my efforts. (It was better, much better than from the health food store.) 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 very 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.

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.
  • Try Rich Von Konynenburg’s Methylation protocol - its fairly inexpensive and its worked for some people.
Please offer your own suggestions via email (cort@phoenixrising.me) or in the comment box.

(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.)

5 comments

{ 5 comments… read them below or add one }

Donna Craig December 9, 2012 at 7:23 am

Hello. I believe that my 16 year old daughter has CFS. After complaining of joint pain for years to her pediatrician (who attributed it to growing)….she is full blown on the couch and barely able to move for the last 6 days (and the last 3 months she has gone down hill) Going through the CFS checklist she has about 80 percent of those symptoms so I’m pretty certain this is what is going on.
We live in Baltimore and I understand that Dr. Peter Rowe is no longer taking new patients.
Tomorrow morning I need to get started on a coordinated regime for her. Do you have any suggestions about who and or what types of people we should see first? Rheumatologist, accupuncturist, nutritionist, physical therapist?
I appreciate any input.

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cindywillis April 14, 2013 at 9:07 am

have her see Dr. Enlander in NY. He could most likely really help her.

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Lewis Barham March 19, 2014 at 11:28 am

Hi I am a 19 year old young male from Suffolk, England and have been doing lots of research into ME,; causation, biology, treatment of the illness and am currently working on my diet. I think the diet is the primary target for anyone newly diagnosed as it can clear up food intolerances and allergies in itself. I can’t afford seeing a specialist at Breakspear Hospital so am self education myself to become an expert in nutrition, immunology and CFS to hope to help people in the future.

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Jared July 23, 2014 at 2:25 pm

A lot of good information for me, I’ve had a lot of success personally with a paleo diet. I take a lot of supplements though (and run naturogenix a supplement company), which can add up.

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Rae Markus November 4, 2014 at 10:37 pm

I live in the San Fernando Valley area of Los Angeles. Looking for a doctor who can diagnose CFS. Have had many diagnostic tests and they have ruled other things out, but none of the doctors has given a diagnosis – CFS or otherwise. I know a bunch of things it isn’t, but not what it is.

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