CFS/ME Treatment
from http://www.offerutah.org/cfsmetreatment.htm
Cause and Cure Pending: Treat the "Syndrome Subsets" of Chronic
Fatigue Syndrome and Fibromyalgia
316- 263-2125 or 1-800-323-5871 Lucinda Bateman, MD
Presented October 12, 2003 at the Chicago Patient Symposium
sponsored by the CFS Society of Illinois Radisson Hotel, O'HareRosemont, Illinois.
I am writing this article as a clinician and primary care provider
(PCP), a doctor who sits face to face, month after month, with
the individuals whose lives are impacted by CFS/FM. It is from
that perspective that I coined the term "syndrome subsets" for
the purpose of describing how, in the absence of a "magic
bullet," I address the symptoms of patients who meet criteria
for CFS/FM. It routinely becomes a juggling act of interpreting
and balancing many factors: age, gender, genetics, geographic
location, underlying or associated diseases (from straightforward to atypical, subtle or overlapping), personality, mood
state, medication side effects, insurance and disability statusnot to mention the varied ways the symptoms of the CFS and
FM case definitions are manifest between individuals.
Develop a Management Approach
Although CFS and FM have published case definitions, there is
in reality a heterogeneous spectrum of patients with chronic
fatigue that presents to primary care providers. Although we
lack a "cure," there are many things one can do to improve the
symptoms of some patients. This article attempts to rank the
subsets of symptoms that I find most rewarding to identify and
treat. First, we identify familiar medical problems and
implement standard treatments. In our clinic, we complete a
lengthy interview in which we review life experiences that
might have affected mental and physical health. The patient
must also have completed all "health maintenance" testing
(pap, mammogram, colonoscopy, PSA, etc). We perform a
physical examination, review recommended screening lab tests,
build a problem list and implement good management of all
identified medical problems such as hypothyroidism, hypertension, depression or lumbar disc herniation.
But when that is done, our patient usually still has the
symptoms of CFS/FM. For the purpose of this article, I use the
term "syndrome subsets" for clusters of symptoms that occur in
some patients but not others, respond to treatment but don't
stand alone as a diagnosis in terms of total symptom resolution.
These may be underlying or overlapping conditions, symptoms
of CFS/FMS, or true subsets of CFS/FMS yet to be objectively
delineated. I address them below in order of how gratifying it is
in terms of symptom improvement, and specify which subgroup of patients we find most likely to fit the symptom subset.
1. Orthostatic Intolerance
WHO? Adolescents and young adults with distinct flu-like onset
CFS, plus some others.
The Orthostatic Intolerance (OI) spectrum includes syncope,
orthostatic dizziness, palpitations, tachy- and bradyarrhythmias, headaches and generalized weakness. It may
be typical Neurally Mediated Hypotension (NMH), Postural
Orthostatic Tachycardia Syndrome (POTS), or it may present
more subtly. Bedside testing for orthostatic hypotension does
not reliably predict who will have positive findings on Tilt Table
testing, but it does have some utility. We still do, as part of our
routine physical examination, pulse and blood pressure, supine
and standing at 1 minute and 3 minutes. It is a useful way to
teach the patient about OI and prepare them for Tilt Table
testing. We refer our patients in which we suspect OI to
experienced Tilt Table technicians who are familiar with the CFS
NMH research and use good methodology. Patients with
positive tests may require vigorous IV fluids and close monitoring until stable. One of our patients was hospitalized by the
cardiologist for observation.
- Interventions for OI. (Adapted to the patient and available
resources)
· Sodium and fluids to approximate 1-3 gms of NaCl + 1-3 Liters
H20 per day. It is a challenge to keep this up, but it is
inexpensive and readily
available. This is a conservative recommendation based on the
idea that a high sodium "American Diet" is about 6 gms a day, a
"No Added Salt" diet is about 3 gms, and a "low sodium diet"
contains about 1 gm.
· ProAmatine (midodrine) 2.5-15 mg every 3-4 hours, usually
three times per day. Slowly titrate to desired effect
· Florinef 0.1 mg once or twice a day · Avoid getting overheated
or dehydrated. Consider support hose.
2. Sleep Disorders
WHO? Almost everyone with CFS and/or FMS.
There are many subcategories of sleep disorders, but
compensating sleep is important and may depend on your
ability to identify contributors to disrupted sleep. Common
sleep disrupters include restless legs syndrome (RLS),
myoclonus and periodic limb movement (PLM); obstructive
sleep apnea (OSA); mood disorders that impact sleep
(depression, anxiety, PTSD, bipolar disorder); nocturnal
pain, snoring of a partner, children, noise and many others.
Natural sleep is best, but chronically abnormal sleep is
insidiously harmful as well. There is no perfect medication for
sleep. Almost all have some adverse effect on sleep stages.
Keep working until a satisfactory result is obtained. Nonpharmacologic Interventions for sleep can be helpful.
Prepare for sleep. Quiet the room. Develop good sleep hygiene.
Set regular cycles of sleep and awakening.
Interventions for abnormal movements
· Reduce or stop all caffeine. Definitely no caffeine after about 2
PM.
· Avoid alcohol near bedtime, or any excessive alcohol intake. ·
Reduce or stop drugs that cause abnormal movements.
· Sinemet or Mirapex 0.125-1.5 mg (start low and work up
slowly)
· Klonopin 0.25-1 mg, or other medium to long acting
benzodiazepines in low doses.
· Neurontin 100-1800 mg
· Light stretching or exercise
· Electrolytes-calcium, magnesium, potassium Interventions for
obstructive sleep apnea
· Weight loss
· Treat and prevent reflux, Treat asthma, upper airway allergies
and vasomotor rhinitis · Maximize sleep positions. · Consider
palate or nasal surgery if indicated · CPAP, BiPap, oxygen, as
indicated
Medications for Sleep" Short acting sleep "initiators" ·
Ambien 5-10 mg,
Sonata 5-10 mg,
Restoril (temazepam) or other short acting benzodiazepines
Melatonin (pulse for a few days to "reset" the circadian
rhythm)
Longer acting sleep "sustainers": · Amitriptyline or other TCA's
in low doses,
Trazodone 25-300 mg ·
Neurontin 100-1800 mg,
Gabitril 2-12 mg,
Topamax 12.5-150 mg,
Zonegran 100-200 mg ·
Seroquel 25-100 mg,
Zyprexa 2.5-10 mg ·
Benzodiazepines: Klonopin or Xanax 0.5-1 mg ·
Muscle Relaxants:
Zanaflex 2-12 mg,
Flexeril 5-10 mg,
+others
3. Insulin Resistance Syndrome (IRS or Metabolic
Syndrome X)
WHO? Overweight, sedentary, middle-aged adults with CFS or
FM and a family history of diabetes.
Risk factors for IRS are present in 48% of patients in our clinic
who meet criteria for FM. Signs of IRS include: obesity or
tendency to gain weight easily and in "apple" body shape,
family history of Type II diabetes, borderline or frank
hypertension, Type IV hyper-lipidemia (low HDL, high TG), prior
high glucose or reactive hypoglycemia, elevated fasting insulin
levels, markers for Type II Diabetes (elevated HgA1C or fasting
glucose) and fatigue, fluid retention, aches, and peripheral
neuropathy. Factors driving IRS that cannot be adjusted include
genetic predisposition and advancing age. On the other hand…
some factors driving IRS can and should be manipulated to
advantage, including: physical activity: muscle action and bulk,
body fat (fat cells are very insulin resistant), and carbohydrate
consumption-both the amount and type of carbohydrate, and
medications.
Basic IRS Dietary Recommendations · Eat just enough lean
protein each meal to feel satisfied until the next meal. · Keep fat
consumption relatively low. · Choose leafy, fibrous, colorful
(dark green, red, yellow) vegetables while minimizing
vegetables high in starch or sugar (potatoes, peas, corn) ·
Consume fiber because it helps slow the absorption of
carbohydrates. · Eat fruit fresh and whole, not juiced or
combined with sugar.
Any moderate well balanced diet that achieves the goal is fine.
Pick a diet most compatible with a permanent eating style. If
IRS is borderline for Type II DM, consider Glucophage
(metformin), which may help with weight loss and isn't as likely
to cause edema as other oral agents.
IRS Exercise Goals · Weight train to gradually increase muscle
tone, bulk and strength. · "Cardio" or aerobic exercise utilizes
the muscles so they will burn more glucose and burn it more
efficiently. Exercise below anaerobic threshold. · Both types of
exercise can be done supine, supported, or in water to minimize
fatigue and orthostatic intolerance.
4. Subtle Presentations of Mood Disorders, Primary
or Secondary
WHO? Those with family history of mood disorder, childhood
emotional trauma, serious lifetime personal stressors.
Nearly everyone with CFS or FM develops some degree and
form of anxiety or depression secondary to the devastating
losses of their chronic illness. Counseling, structured support
groups or study can help them recognize the loss, work through
stages of grief and recovery, and try to improve any abusive,
unsupportive or stressful circumstances.
We encourage them to treat the mood disorder regardless of
the cause. Treatment can include: insight, change, reduced
stress, stress management, counseling, medications, etc.
Obvious, subtle or "mixed" primary mood disorders may exist as
well, and may actually be a risk factor for developing FM or CFS.
Mood stabilizing agents are often helpful for more than just
"mood;" they may also moderate pain, fatigue, migraine and
sleep.
Generalized anxiety and obsessive compulsive disorder traits
respond to SSRIs, benzodiazepines, anti-convulsants, beta
blockers, and many others. Bipolar disorder manifest as
irritability, insomnia and cycling energy levels may be present
and amenable to specific pharmacologic management. Severe
depression unresponsive to front-line agents deserves special
and continued attention. ECT for severe depression may help
unrelenting pain as well as the mood.
7. Hormone Replacement
Some useful allergy treatments
· Nasal steroids or anticholinergics improve nasal congestion
and obstruction
· Non-sedating antihistamines prevent and resolve symptoms: ·
Claritin, Clarinex, Allegra, Zyrtec (reserve the "D" [signifying
decongestant] for exacerbations when you can sacrifice sleep
and feeling "wired")
· Advair inhaler (steroid + bronchodilator). Mild subclinical
airway reactivity is very common in both CFS and FM. · Avoid
the offending agents.
· Allergy desensitization shots.
· Move to a new location. It may take a year or two to develop
allergies in a new place.
· Consider reflux as a potential cause or aggravating factor.
WHO? Middle aged women and men with FMS.
Hormones exert a multisystem effect on the body, and thus can
help moderate an array of symptoms. At the same time,
hormone replacement may only temporarily alleviate a
symptom until compensatory feedback mechanisms begin to
operate. For example, extra thyroid hormone may improve
overall well being initially, but eventually the hormone excess
will suppress production of TSH and thyroid gland atrophy may
occur, thus reducing intrinsic thyroid hormone production.
Since there is much we have to learn about these complex
systems, we tend to follow conservative, time-tested
approaches to hormone replacement.
Potentially Helpful Hormones (if appropriate!)
· Thyroid replacement-T4, T3 and combos, synthetic versus
animal-goal: low normal TSH.
· Estrogen, testosterone, progesterone-weigh the risks and
benefits in each patient.
HRT can potentially be helpful in moderating almost every
symptom of FM, but it varies with the affected individual.
· DHEA-maybe helpful in some patients. There are pros and
cons and it has not been systematically studied.
· Human Growth Hormone-may be helpful if levels are low. Our
experience, however, has been disappointing.
· Corticosteroids (hydrocortisone, prednisone)-supplementation
will contribute to adrenal suppression and may lack sustained
efficacy. We reserve use for standard interventions such as
allergies, asthma, or focal musculoskeletal inflammation.
· Florinef for OI-Adrenal suppression and hypokalemia may
occur, so this should be weighed against efficacy and
symptom severity.
6. Physical deconditioning and decline
8. Fatigue
WHO? Middle aged women, and anyone who has been
chronically ill for more than 6 months.
Once the symptoms above are in good control, we begin to
address physical conditioning. Care is taken to adapt to the
individual patient and resources available to them.
Physical Improvement Areas
· Flexibility. Stretching is well tolerated and helps improve
stiffness and some pain. Do gently daily or several times a day
and adapt to pain areas. Physical therapists, trainers,massage
therapist can teach proper technique.
· Muscle tone, bulk and strength: Strengthening is moderately
to well tolerated depending on myofascial pain component.
In general it is better to do less weight and more reps.
Strengthen symmetrically and globally.
· "Cardio" or aerobic capability: Variable tolerance exists
among patients. High or intense levels are usually poorly
tolerated by all, but mild to moderate intensity may be OK
for many with FMS. Those with classic CFS are sometimes quite
intolerant. If you treat OI or adapt exercise to OI, it may be
better tolerated.
WHO? CFS or FMS with severe fatigue.
FMS subgroups tolerate stimulants much better than patients
with immune and infection symptoms only (CFS. We treat
fatigue directly, only after addressing sleep, mood, pain, OI,
polypharmacy, deconditioning and other issues. Then we
proceed with care and follow-up, because in some patients,
agents that mitigate fatigue may create more problems than
they solve. Sometimes they make a big difference.
Here are the most common agents used to directly treat
fatigue:
· Wellbutrin SR 100-150 mg or Wellbutrin XL up to 300 mg each
AM.
· Provigil (modafinil) 50-400 mg. Long acting. May disrupt sleep
patterns if sleep is untreated.
· Adderal (mixed salts of Dexedrine) 5-30 mg twice a day.
Schedule II.
·Ritalin (methylphenidate) 5-20 mg 2-3 times a day. Schedule II.
· Effexor XR 150-300 mg each AM
5. Subclinical Allergies and Asthma
WHO? CFS and FMS. Young, middle aged and older, women and
men.
If any signs or symptoms are present, we treat empirically and
use symptom improvement to guide therapy. These symptoms
might include nasal congestion or rhinorrhea, sore throats,
cough or exercise induced cough, frequent secondary infections
of the upper or lower airways, shortness of breath, exercise
intolerance, respiratory sleep disturbances, etc.
9. Focal pain
WHO? Middle age and older, men and women. Younger people
with prior injury.
Sometimes when faced by widespread chronic pain, we forget
to identify and treat common focal pain areas: osteoarthritis or
degenerative joints, tendonitis and bursitis, lumbar or cervical
disc herniation, Trigger Points, Tender Points.
Selected focal pain modalities
· Cox II and NSAIDS (Vioxx, Celebrex, Bextra, ibuprofen,
naproxen, etc) for pain related to swelling or inflammation.
· Physical therapy, massage, chiropractic techniques.
· Local Injections of steroid, anesthetic, or Botox
· Lidoderm Patches---superficial nerve pain or tender points. ·
Capsaicin cream or other topicals
--Surgical interventions.
10. Migraine headaches
WHO? Mostly those with FMS and mood symptoms, but all
groups to a lesser degree.
One thing to remember is that the general treatment of sleep,
mood, allergies, and pain (FMS) often reduces migraines. For
the remainder, design a good acute regimen to have on hand at
home for a severe migraine. When migraines are frequent,
work to establish a preventive regimen.
Acute migraine medications
· Phenergan or compazine suppositories
· Midrin, Fioricet, or Fiorinal, or others.
· Tryptans: Imitrex, Zomig, Axert, Relpax, etc…
· Strong, short-acting oral opiates if necessary.
Migraine prevention regimens
· Neurontin (weight neutral), Zonegran or Topamax (weight
stable or loss)
· Depakote (weight gain)
· propranolol XL or metoprolol XL (may cause fatigue, asthma,
depression)
· amitriptyline, nortriptyline, doxepin (some may worsen
orthostatic hypotension, cause tachycardia, contribute to
weight gain)
11. Possible underlying or intermittent infections
WHO? Most with CFS and some patients with FM, especially
those with allergies, asthma or diabetes.
While subject to debate, the idea of secondary infections or
viral reactivation in the setting of CFS/FM remains important to
many providers, perhaps because empiric treatments sometimes seem to help. As long as antibiotics are used chronically
for acne and long term prophylaxis for herpes is acceptable, it is
probably within the bounds of reasonable medicine for an
individual physician to empirically prescribe an antimicrobial for
their patient with CFS or FM.
If such a decision is made, it should be done with caution,
monitoring both for positive effects and for potential adverse
effects. Potential situations include the use of antivirals or
atypical antibiotics when a specific organism is suspected
such as mycoplasma, Chlamydia, Lyme, herpes viruses, etc.
12. Irritable Bowel Syndrome
WHO? All ages who have anxiety or depression, and almost all
FMS patients.
Abdominal or pelvic pain is a common symptom of these disorders, and may be difficult to sort out in terms of contribution
from ovarian or endometriosis pain, bladder spasm and discomfort, gall bladder dysfunction, etc.
One approach to IBS
· Complete a reasonable, cost effective workup and then
provide support and reassurance.
· Develop a high fiber diet with plenty of oral fluids. Encourage
regular exercise as tolerated.
· Provide anti-spasmotics or benzodiazepines (hyoscyamine,
Librax, etc) for PRN use.
· Utilize antidepressants that alter bowel motility and improve
"nerve" pain (TCA, SSRI). Assess and treat anxiety if present.
· Consider overlap with endometriosis, interstitial cystitis and
gall bladder disease.
· At some point, consider colonoscopy to rule out inflamematory bowel disease, infections, sprue, and malignancy.
· Zelnorm 6 mg bid for constipation predominant IBS.

Dr. Bateman attended the Johns Hopkins School of Medicine,
returned to the University of Utah for internal medicine
residency, and became certified in Internal Medicine in 1991.
She is the co-founder and current Executive Director of a Utah
based non-profit, Organization for Fatigue and Fibromyalgia
Education and Research (OFFER). Throughout her career, her
interest has gradually become more focused on the diagnosis
and management of "chronic fatigue," inspired in part by the
silent suffering of her sister with chronic fatigue, Shauna
Bateman Horne.
In 2000 Dr. Bateman opened her fatigue consultation clinic and
has since evaluated more than 800 patients with unexplained
chronic fatigue, CFS and FMS.