TREATING CFS AND FIBROMYALGIA (CFS/FM/ME) can be
very satisfying, because with proper treatment even these
severely ill people usually improve, and sometimes completely
recover, given the proper treatment. They are also remarkably
complex, however, and it is easy for you and your practitioners
to burn out if you don’t use the proper tools to simplify care.
We have discussed how to effectively treat these illnesses
in previous articles, and more detail can be found in my books
From Fatigued to Fantastic (for practitioners) and The Fatigue
and Fibromyalgia Solution (an easy read for people with the
To summarize, these illnesses represent an energy
crisis where the person essentially blows a fuse (called the
hypothalamus). This circuit breaker can be turned back on
and function restored by optimizing energy production with
the SHINE Protocol (Sleep, Hormones, Infections, Nutrition,
Exercise as able). In our published randomized placebo-controlled
study, 91 percent of people with CFS/FMS improved
with an average 90 percent increase in quality of life (p<.0001
versus placebo). So we already know these are real and very
Here are 10 more tools to simplify patient care, and to
add new powerful treatments for those who do not improve or
recover with SHINE:
TOOLS TO SIMPLIFY CARE:
1. The free Energy Analysis Program at www.EndFatigue.com can analyze a person’s symptoms and (optional) even
their key lab tests to determine what is causing their energy
drain and tailor a protocol to their case to optimize energy.
The person can do it themselves, or with a family member’s
or friend’s help, in just 10 minutes. All of the work needed to
determine what is causing YOUR energy drain, and how to fix it,
is then done online for free with the click of a button.
2. Treating the pain
Although the pain most often begins with muscle shortening
caused by inadequate energy, the chronic muscle pain then
triggers “brain pain” or central sensitization. Think of pain as
being like the oil light on your body’s dashboard telling you
that something needs attention. If you put oil in the car, the
oil light goes out. If you give the body what it needs, the pain
goes away. What it needs varies by the type of pain. When the
body’s need is not addressed, the brain amplifies the pain, and
the pain can become self-sustaining. This occurs because of
increased microglial cell activity in the brain.
The pharmaceutical industry has focused on three modestly
helpful medications that are very expensive and have significant
toxicity. Three other medications, however, can also decrease
microglial cell activity, which causes central sensitization and
can result in significant improvement. These are:
Treat the central sensitization (brain pain).
A. Low dose naltrexone. This medication has been shown to
help rebalance immunity and decrease central sensitization
and microglial cell activity. Give 3–4.5 mg at bedtime, and
give it at least two months to work. It may initially disrupt
sleep, in which case starting with a lower dose and giving
it in the morning instead can help the body to adapt. It is
available from compounding pharmacies at about a dollar a
day. If it was still patentable, I’m certain the drug companies
would be charging $20,000–$120,000 per year and every
physician would know about it. Have the patient read the
book The LDN Solution by Linda Elsgood. I would use this
treatment for most autoimmune and severe chronic pain
conditions. Unfortunately, it cannot be used in patients also
taking narcotics, in which case the two treatments below
B. Minocycline 100 mg 2 x day. This antibiotic medication
also helps to rebalance microglial activity, even in the
absence of infections. Be sure to also treat to prevent
C. ACE inhibitors (e.g.,—Enlapril or vasotec) 10–20 mg a day.
3. Other tips for treating pain
A. For those of you requiring narcotics, be aware these will
routinely cause both B vitamin and testosterone deficiency,
amplifying the pain. Be sure you take a high potency B
complex (e.g.,—the Energy Revitalization System vitamin
powder by Enzymatic Therapy) and have your doctor optimize
your testosterone to keep it at least midrange normal.
B. hCG, research by the pain specialist Dr. Forest Tennant
in patients requiring very high-dose narcotics showed that
giving 25 to 500 units of hCG sublingually daily decreased
the narcotic dose needed by 30 to 40 percent after several
C. Natural remedies can be more effective than medications
for pain, and can be added to pain medications as well. The
most effective? Curamin (by EuroPharma) has been a pain
relief miracle. I also will add topical comfrey (Traumaplant).
Although this works very quickly, give it six weeks to see the full
effect. In head-on studies with Celebrex for arthritis, Curamin
was shown to be more effective. Except for the LDN (which
cannot be used with narcotics or Ultram), all of the above can
be taken with any pain medications.
4. The free iPhone and android app “Cures A-Z” will
give a brief overview of the best way to treat each kind of pain
(as well as over 100 other conditions often seen in FMS, such
as pelvic pain syndromes, sinusitis, dry eyes and mouth, and
many more). It is kind of like having my brain in your pocket,
but much less messy.
5. Treat mold neurotoxins
This can be an important part of the process in a selected
subset of people. This is work developed by Dr. Ritchie
Shoemaker, who is brilliant, but is so smart that he can be
unintelligible. I once tried to get him to “dumb down” the
information by getting him drunk, but this was only slightly
effective. Dr. Neil Nathan succeeded where I failed in this, and
has just come out with a brilliant and very simple ‘how to’ book
for treating neurotoxins, called Mold & Mycotoxins: Current
Evaluation and Treatment 2016. This is available on Amazon
(Kindle), can be read in under an hour, and will give you all
the information you need to immediately begin effectively
treating these conditions. Dr. Nathan has jokingly nicknamed
it Shoemaker/neurotoxins for Dummies. I highly recommend
it for both you and your physician if you suspect that mold
neurotoxins may be playing a role.
6. IV Gamma Globulin (and help with insurance and disability paperwork)
In about 10 percent of my sickest patients who have severe
refractory CFS/FMS, often leaving them bedridden, I will check
antibody levels of IgG 1–4 (available from Quest or LabCorp—
order “Immunoglobulin G, subclasses 1–4, serum” and
“Immunoglobulin, quantitative, IgA, IgE, IgG, IgM, serum”). Work by Dr. Mark Sivieri has shown that people with CFS/FMS
often have IgG 3 or IgG1 subset deficiency, and this has been
my experience as well. In these cases, IV gamma globulin
(– 1/2 gm/kg each 3 weeks) often results in dramatic
improvement after four months of use. It is very expensive,
however, so they will have to get insurance coverage—
which can be difficult. I use the services of Denise Haire (office"at"endfatigue.com), who can work with people to help
them get insurance coverage. She also is excellent at helping
people with CFS/FMS in applying for their disability insurance,
and can review the medical records to help people put together
the letters needed for their insurance company or Medicare, so that people that are disabled can get disability. This can be
very helpful for you, while also making your doctor’s life much
7. Avoid getting raped by prescription prices
If people don’t have insurance to cover the medications,
they often get charged 10 to 40 times what the insurance
company is paying. A simple tool? Download the free app
“GoodRx” or you can go to www.goodRx.com. Put in the
name and dose of the medication, and print out a coupon
that will often lower the price by 90+ percent (I’m not
exaggerating—this is more the rule than the exception).
Patients will be pleasantly shocked. For example, Ambien
is eight cents a pill instead of $4.
Another helpful tip, as even men can get raped by
pharmaceutical pricing. For erectile dysfunction, the
medications can cost $70 a pill. Viagra (Sildenafil) should
be available in generic, but pulled a legal ploy to avoid
this. But there was a loophole that you will love. Order
Sildenafil 20 mg tablets (available in generic for pulmonary
hypertension). Using the GoodRx app, these are available
for 50 cents a pill (one percent of the cost of Viagra). Some
women also find it helpful for libido, and a small percent
find it also helps their CFS!
For other medications such as fluconazole,
compounding pharmacies can often make the medication
at a small fraction of the regular pharmacy cost.
8. Treat the orthostatic intolerance (NMH, POTS)
Basically, when we stand up, gravity makes our blood
rush down to our legs. If not for our autonomic nervous
system telling our legs to send the blood back up to our
brain and muscles, we would pass out. In most people,
the autonomic system works well. This is not the case
in CFS/FMS. A new medication just came out at a cost
of $120,000 per year. An absurdity, and I will not even
mention the medication’s name. My impression is that it
is far more effective to simply have the person increase
their salt intake dramatically (I like to use a tasty good
quality sea salt like Celtic Sea Salts) and increase water
intake. In addition, be sure to get medium pressure (20–
30 mm) thigh high compression stockings and wear them
when you are walking around. People with CFS/FMS find
these dramatically improve stamina. And for only $60/pair
versus $120,000! Feel free to email me at EndFatigue@aol.
com to ask for an excellent information sheet on treating
orthostatic intolerance as well as a simple quiz that will
tell you in one minute whether orthostatic intolerance
is present (validated in the Mayo Clinic Journal—I find it
much better than spending $1000 for a tilt table test).
9. For anxiety
A. Two new herbals called Anxiocalm and Maximum Stress
Relief (both in the Terry Naturally line by EuroPharma) are excellent.
B. Severe anxiety is a clue that mycotoxins may be an issue (see #5 above).
C. check out the Buteyko Breathing Method.
10. Going gluten free
When people don’t respond to other treatments, I have them
do a gluten and dairy free diet for three weeks to see if it helps
(stay on it if it does). This is difficult to sustain long-term, so I
do not begin treatment with it, as most people get well without
having to avoid milk and gluten. It is not enough to simply
avoid gluten and dairy, or you will become malnourished.
Instead, do a consultation with a nutritionist. My favorite? The
wife of Brad West ND, Chef Lauren Hoover-West has appeared
and cooked on ABC Live in Chicago and Sacramento. She has
cooked for four United States Presidents and is the author of
No Wheat No Dairy No Problem cookbook and the blog site
www.NoWheatNoDairyNoProblem.com. She can guide people
via phone consultation.
Here is one bonus tip. People don’t like being part of the
“handful club,” taking handfuls of pills each day. They also
won’t stick with it.
I make this easy for everyone, and people are very happy
because they see a quick response, I simply have them take a
morning energy drink called the Energy Revitalization System
(by Enzymatic Therapy) which replaces over 35 supplement
pills with one low-cost easy drink (replacing their multivitamin
and sometimes dozens of other pills). I have them add one
5 gm scoop of ribose (SHINE), which in two studies we
published increased energy an average of 61 percent after
three weeks. I add one Vectomega tablet, which replaces eight
fish oil capsules. This is what I take each morning, and you
will find that it turbocharges you and most people with healthy
energy as well.
It’s a lot of fun helping people with this illness get well,
and we do three hour in person or phone consultations with
people worldwide. For info on making an appointment, contact Sarah at Appointments"at"endfatigue.com.