Myalgic Encephalomyelitis ~ Say What?!

AKA Chronic Fatigue Syndrome

AKA Chronic Fatigue Immune Dysfunction Syndrome

 

Hi Folks!

 

So, the last post on neuroinflammation inspired a bunch of questions about Chronic Fatigue Syndrome.  YEP, you are all correct.  Neuroinflamamtion is definitely a dominant reason for the discomfort that people with CFS experience.

 

And, YES, nutritional recommendations based on functional blood chemistry can be life changing for folks that have been diagnosed with CFS.  Managing CFS is a pretty complex process that involves modulating the immune response, identifying thresholds, and bathing the cells in a constant supply of the nutrients they need to perform properly … which can be really challenging because of the functional changes that occur with this disorder.

 

Once you have acquired CFS, your life becomes centered on MANAGING CFS.  CFS is not something that you cure or mend, like strep throat or a broken leg.  Once CFS has been triggered, changes occur in your body … and to be symptom free, you must learn to live in such a way as to always modulate the immune response in this ‘new’ and ‘different’ body.  

 

Take Heart, it can be done! I have many CFS clients who have gone from being bed/couch ridden for YEARS to being able to go back to work on a DAILY basis.  This may not sound like a big deal, unless you have or know someone who has CFS.  For someone with CFS being able to return to normal, or even semi-normal, day to day activity can be nothing short of MIRACULOUS.

 

(By The Way, if you are one of my clients and you have not yet tooted your own horn on the GRATITUDES page and shared the story of your miracle of healing, please, Please, PLEASE, do so … it can be really inspiring and helpful to other people to read about your success).

 

So, let’s get back to some background on CFS … it’s technical name is Myalgic Encephalomyelitis, which is such a mouthful, it is much easier to stick with the acronym CFS.

 

About the only thing that specialists will agree on is that CFS is a poorly understood condition for which there is no clear consensus about its diagnosis and treatment.  And that physical activity and physical or emotional stress makes CFS worse.

 

“We don't know exactly what causes ME/CFS, but it appears to be triggered by many different factors. Viral infections, genetic predisposition, environmental toxins, and immune reactions are all considered possible causes of the disorder. It's likely that not one single factor is responsible, but rather a combination of factors.”

 

Well, of course!  When you consider that the neuro-endocrine-immune system is ONE system, and not THREE separate systems, then making sense of conditions like CFS, fibromyalgia, transverse myelitis, Alzheimer’s, ALS, Celiac’s, Chron’s, Graves, Hashimoto’s and all the other multitudes of neurodegenerative and autoimmune conditions becomes a lot easier.

 

Treating any of these conditions from only one aspect simply does not work.  If you want to alleviate symptoms and prevent deterioration, then the approach must address the nervous system, the endocrine system, the immune system, detoxification and the digestive system.

 

If you do not already know, CFS is characterized by extreme, unrelenting, irreparable fatigue that lasts a minimum of 6 months. People are constantly exhausted and feel that their stamina is nonexistent. Other symptoms are related to neurological damage, immune system dysfunction, gastrointestinal dysfunction, and problems with energy production including:

   mild fever

   sore throat

   tender neck with swollen lymph nodes

   migrating body pains

   sensitivity to light and/or noise

   decreased ability to concentrate

   muscle weakness and joint pain

   headaches, sometimes very intense

   inability to focus vision

   memory and concentration problems

   difficulty sleeping

   completely disrupted circadian rhythm 

   dizziness or lightheadedness

   difficulty breathing

   difficulty regulating body temperature

   flu-like symptoms

   nausea

   food sensitivities

 

That all sounds awful doesn’t it?  It is!  That is why I get so excited when someone with CFS comes to me for assistance.  Because there is so much that can be done to help them alleviate and manage so many of those symptoms.

Much of the healing process has to do with education.  As I mentioned before, management of CFS needs to address the nervous system, the endocrine system, the immune system, detoxification and the digestive system.  And each person can require a slightly different approach, depending on what the main trigger originally causing the CFS was.

For instance, the diet part can be pretty tricky.  A thorough anti-inflammatory diet is always the basis, and then it may actually need to be further modified to reduce foods that encourage candida or FODMAP foods

(FODMAP foods are foods that contain Fermantable Oligo-saccharides Di-saccharides Mono-saccharides and Polyols carbohydrates that can cause abdominal pain, bloating, flatulence, diarrhea, constipation and irritated gut-associated lymphoid tissue (the immune system in our guts).)

You also have to completely change your mindset about food.  There is no room for the idea that you can treat yourself to a piece of chocolate, cheesecake, a beer, or a dinner roll once in a while. You have to completely throw out the idea that it is OK to ‘cheat.’  There is no way, and no how, that your body will adjust, adapt or acclimatize to dietary lapses.  Once you have CFS, just accept that your digestive system is not the same as it used to be.  You have a brand new system and it only works one way.  Learn how it works. Learn how there is no separation between gut health and immune function.  Make an appointment with a knowledgeable nutritional therapist who can teach you these things. Regard your digestive system with respect if you want it to work properly and if you do not want to CRASH.

And of course, proper, adequate supplementation is always required.

Many of the folks that come to me with CFS say that supplementation doesn’t work.  Well, that is because there is a HUGE difference in quality of supplements and in whether you are taking the correct nutrients that your body needs and in whether the nutrients are actually in a form your body can assimilate AND if you are taking those nutrients in adequate dosages.  Whew!

To reverse symptoms and prevent deterioration, the cells literally need to be BATHED in nutrients and have access to these nutrients at all times.  You can’t take a mega dose one morning and then not take anything else until a day or two later.  That’s not going to cut it.  One of the most useless prescriptions I have seen is the very popular 50,000 IU of vitamin D2 once a week.  Switching to an easily assimilated sublingual vitamin D3 at 4,000-6,000 IU two times a day has profound effects when it comes to modulating the immune response.

To learn more about quality supplements please read the Supplements page on the Nutrition part of my website.

The other aspect of managing CFS that allopathic physicians do not address is “frame of mind.”  Healing is a state of mind.  Wellness is a state of mind.  Learning how to access that state of mind when you are in searing pain requires tools and skills that are not taught in school and that many of us have not even been exposed to.  Tools like meditation, brain wave entrainment, and hypnotherapy.  Tools that at first sound ‘new agey’ or ‘alternative’ and under further investigation are being found to have serious scientific basis.

Overall, managing CFS and becoming symptom free requires dedication and active participation on the patient’s part.  You have to make lifestyle changes, you have to change your diet, you have to take supplemental nutrients daily and you have to learn to access deep layers of the mind. If you are willing to do that, you can change your life.

Be sure to check out the rest of the website to learn more about the nutritional coaching process and contact me with any questions.

 

As always, 

Many Blessings and Cheers!

Vanessa Hendley


 

I’d love to hear about your biggest “aha!” moment from today’s blog, and how you’re going to implement its wisdom into your life.  Just drop a comment via email.


Comments On this Post:

Bethany Wilson Bravo! One of the most intelligent, well-informed descriptions I've seen outside ME/CFS groups I've been associated for 20 years. You sound like you know your stuff, Vanessa! Unlike 99.9% of allopathic physicians. There is another aspect I wanted to mention, which has nothing directly to do with the kind of improvement you described in your article - but has everything to do with the reason why there are no "answers" in the medical community yet. M.E. is a disease which has been known and described in the WHO's ICD for several decades, whereas the term CFS was made up by the CDC in the 1980s when they went to Lake Tahoe, CA to investigate an epidemic that was puzzling local docs. The CDC docs took a few blood samples, went skiing and returned home to report virtually nothing - and to name what they found "chronic fatigue syndrome." The patients involved in that 1984 epidemic are currently still sick, some have died, and an unusually large proportion now have a rare form of cancer. Meanwhile the CDC was brought up before Congress for diverting funds allocated to them for CFS research to other studies of other diseases. So far they have come up with nothing, and they and the NIH are now joining with HHS to try and get what little clinical research results that have been found discredited and the disease relisted in the WHO catalogue as psychological. So you can imagine how angry that makes ME patients around the world. And since you have successfully treated ME/CFS patients and they have improved by changing their diets and taking supplements (as many other patients have around the country - and around the world - under the care of a few interested physicians and many more naturopaths/alternative practitioners, you know that it is NOT a psychological condition. Over the years, I have met (online and in person) hundreds of ME/CFS patients and many of them have found relief for their symptoms and been able to return to work. Sadly, many of them have tried dozens of doctors, naturopaths and alternative therapies and have NOT been able to improve, perhaps because of accompanying diseases which confuse the picture. I'm delighted to hear you are having success treating this complex disease and I wish you and your patients all the best

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