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The US ME/CFS Clinician Coalition

Twenty US ME/CFS experts came up with the recommendations.

Created in 2018 by a group of U.S. physicians, the US ME/CFS Clinician Coalition is dedicated to advancing best medical practices to medical providers on how to best diagnose and treat ME/CFS.

Since 2018, the word has gotten out and the Coalition has grown significantly, now containing 20 ME/CFS experts* who, collectively, have hundreds of years of experience treating ME/CFS patients.

Besides its recommendations on diagnosis and treatment, the Coalition’s beautiful website provides links to many resources including surgery and anesthesia, pregnancy, MCAS, disability, orthostatic intolerance, Ehlers Danlos Syndrome, work accommodations, etc. Links for courses for physicians, videos on PEM, exercise, severe ME/CFS, orthostatic intolerance, etc. are provided.

The Coalition is also an excellent resource for doctors treating long-COVID patients, and has put out a letter urging doctors to assess long-COVID patients in light of an ME/CFS diagnosis.

Treatment Recommendations for ME/CFS

In February, the Coalition released its treatment recommendations regarding drugs and non-drug approaches – but not covering supplements. The document is extensive but brief and to the point. It does not prioritize or rank treatments, but it does provide recommended drug doses and interesting insights are sprinkled throughout it. It’s a basic guide which does not cover treatment options for some comorbidities. Some resources on the website provide recommendations for those.

It’s provided here as a validated resource from top ME/CFS doctors in the U.S., which can be used to explore the different treatment options, check dosages and as an educational resource to give to one’s doctor.

Health Rising is also highlighting it, in part, to get input from the ME/CFS community. Is it missing anything? Could treatments be added?

Note that because this document was developed by a Coalition, it’s inherently quite conservative; i.e. it provides treatments that the entire Coalition could agree on. That probably cuts some treatments out. It’s no surprise, really, that Abilify didn’t make the cut – it’s just too new to the field.

Antivirals didn’t make it either. The document states that some experts are finding antiviral treatments efficacious, but apparently there was no consensus on antiviral use. Nor do any  hormonal treatments – including thyroid – make the list. Hormone treatments form the backbone of some doctors’ practices, but they’re controversial.  I was surprised, though, that no migraine drugs were recommended given their reportedly high incidence of migraine. One wonders if Ativan – a great temporary stress reliever – will make the list some day.  The document does not, as noted above, include supplements.

Some interesting side notes are found. Once a day Lyrica causes fewer side effects, Trazodone may be the most effective sleep drug over time for sleep. Pyridostigmine (Mestinon) can particularly help with gut motility problems. The very low starting LDN doses for those who are sensitive to meds.

The entire document can be found in the attachment below or check out the recommendations in the blog below (the PDF may be easier to follow).

Please note that pictures and colors were added to the blog presentation.

Part 1.  SUMMARY OF PHARMACOLOGICAL THERAPIES FOR ME/CFS 

POTS and ME/CFSOrthostatic Intolerance Medications

Medication  Dose  Comments on Usage
Fludrocortisone  0.1-0.2 mg/day  For POTS, orthostatic intolerance, low blood  pressure. May need potassium supplementation.
Low dose beta blockers  For POTS, tachycardia, high anxiety, hyperadrenergic states. For propranolol, start very low (5mg qAM). May increase fatigue. 
Atenolol  25-50 mg qd 
Propranolol  5-20 mg bid-tid
Metoprolol ER  12.5-50 mg qd 
Alpha-adrenergic agonists
Peripherally- acting Midodrine 2.5-15 mg q 4 hours while upright  For orthostatic intolerance, low blood pressure, orthostatic hypotension, POTS. Start very low (2.5mg qAM) and adjust based on tolerance, response, and consider serial NASA Lean Testing. Check blood pressure response to medication, including supine blood pressure. 
Centrally acting  Methyldopa 125-250 mg TID  For POTS, OI. May cause hypotension; headache; constipation; drowsiness.
Clonidine  0.1-0.2 mg BID  For POTS, OI, hyperadrenergic POTS. Also useful as a mast cell stabilizer.
Guanfacine  0.5-1 mg qd-BID  For POTS, OI, hyperadrenergic POTS. Also useful as a mast cell stabilizer.
Pyridostigmine  30-60 mg q 4-8  hrs  

ER 180 mg q am

For NHM, POTS, orthostatic hypocapnia, dysautonomia especially with gut motility problems. Start with 15mg qd and titrate up. Use cautiously with midodrine, beta blockers, calcium channel blockers, ivabradine, and other cholinergic drugs such as metoclopramide and oxybutynin.
Desmopressin  0.1-0.2 BID-TID  For orthostatic intolerance, POTS, OH. Useful in those whose nocturia disturbs their sleep when taken at night. Requires close monitoring of electrolytes and free fluid intake.
Ivabradine  2.5-7.5 mg BID  For POTS. FDA indication only for CHF but works like a beta-blocker to reduce heart rate when beta blockers don’t work or are contraindicated. Expensive. Recommend consultation with cardiologist. 
IV fluids/Normal Saline  For POTS and OI, tachycardia, hypotension. May be helpful for patients during relapse. May be helpful  before and/or after surgery. 
Droxidopa  100-600 mg TID  For POTS, OI. Difficult to get insurance coverage due to extremely high cost. Blood pressure must be followed closely, including supine pressure.

Abbreviations: 

  • OI: Orthostatic intolerance 
  • POTS: postural orthostatic tachycardia syndrome 
  • NMH: neurally mediated hypotension 
  • CHF: chronic heart failure

Sleep Medicationssleep fibromyalgia

Medication  Dose  Comments on Usage
Trazodone  12.5-100 mg  Helps with disrupted sleep and can help sleep maintenance. May be the least likely to lose effectiveness for sleep. Can help with depression if that is also present. 
Low dose tricyclic  antidepressants  5-100 mg (across  TCAs) For fibromyalgia, insomnia, sleep problems, chronic pain, and allergies. Can help with depression if that is also present. Low dose (25 mg or less) for sleep.  

Higher doses (100 mg) if concomitant mood disorder. May worsen dry mouth, constipation,  orthostatic intolerance, arrhythmias, or cause daytime sedation. Doxepin can stabilize mast cells. 

Amitriptyline  10–25 mg at bedtime 
Doxepin  1-10 mg
Mirtazapine  7.5-15 mg nightly  Improves insomnia.
Anti-epileptics
Gabapentin  

(see below for use in pain)

100-1500 mg qhs  For sleep disrupted by pain, restless leg syndrome, fibromyalgia, periodic limb movement disorder, neuropathic pain. Start with 100 mg qhs and then increase the dose at night as tolerated. Once-daily formulations can have less side effects, daytime fatigue and less cognitive impairment but good pain control. 
Pregabalin  

(see below for use in pain)

50-225 mg qhs  For fibromyalgia pain and sleep. Can be very sedating for some and can cause increased  cognitive impairment and difficulty in tapering off. Once-daily formulations can have less side effects, daytime fatigue and less cognitive impairment but good pain control.
Clonazepam  0.25-1 mg qhs  For non-restorative sleep, insomnia, anxiety. Highly effective for restless leg syndrome and myoclonus. Use low dose for restless leg syndrome. Can worsen fatigue and cognition and may cause addiction. Mast cell stabilizer.
Cyclobenzaprine  5-10 mg qhs  For insomnia, muscle spasm/pain. May worsen dry  mouth, constipation, orthostatic intolerance, or  cause daytime sedation.
Zolpidem  2.5-10 mg qhs  For insomnia, sleep initiation, less effective for sustained sleep. For short-term use. Short duration of action may lead to rebound insomnia.

 

Eszopiclone  1, 2, or 3 mg qhs  For insomnia and sleep initiation. 
Tizanidine  2-8 mg q 6-8 hrs.  For muscle pain and insomnia from pain. May cause orthostatic intolerance. 
Suvorexant  10-20 mg qhs  For insomnia.
Topiramate  25 mg  For sleep disrupted by pain, pain, migraines, neuropathic pain, PTSD, nightmares, sleep-related eating disorders. Start at 12.5-25 mg and build up slowly. Rash may portend Stevens-Johnson Syndrome. Specific blood work is recommended before initiating medication. Check drug information.
Hydroxyzine  25 mg  Sedating. An H1 blocker that may also be helpful for mast cell activation syndrome. Helps anxiety, reduces nocturia.
Alpha blockers  For sleep and also may be helpful for mast cell activation syndrome and hyperadrenergic POTS.
Clonidine  0.1-0.2 mg
Guanfacine  1-2 mg
Prazosin  1-6 mg
Diphenhydramine  25 mg  Take at bedtime or 30-60 minutes before. Can have anticholinergic side effects.

Abbreviations: 

POTS: postural orthostatic tachycardia syndrome 

(1) Sleep medications with long duration of action are often better tolerated if taken 1-2 hours before bedtime.

nootropicsCognitive Impairment and Fatigue Medications 

Note: Stimulants should be used with caution in patients with ME/CFS. Patients should be cautioned not to exceed the level of activity they can generally tolerate to avoid “crashing.”

Medication  Dose  Comments on Usage
Methylphenidate  5-20 mg up to TID  For difficulty concentrating and other cognitive issues, daytime sleepiness and for some with orthostatic intolerance or orthostatic hypotension. BID dosing may avoid insomnia. Moderate to marked benefit anecdotally but tolerance develops if used daily; may be habituating. Ensure that cardiovascular risk is assessed appropriately.
Modafinil  100-200 mg qd  For somnolence, cognitive/fog, daytime fatigue. Start with a small dose and increase slowly to the most effective dose. Can disrupt sleep. Stimulants most helpful when anxiety scores are low and the Epworth Sleepiness Scale is greater than 10. 
Armodafinil  150-250 mg qd
Amantadine  100 mg once or  twice daily May help mild to moderate fatigue. May interact with  psychiatric medications.

 

Pain Medicationspain complex experience

Medication  Dose  Comments on Usage
Low dose naltrexone  0.5 – 6 mg compounded usually taken at night For widespread pain of fibromyalgia. Anecdotal reports of improvements in sleep and brain fog/cognitive dysfunction. May not improve joint pain or headache. Start at a dose that causes no side effects and titrate up slowly as tolerated. If sleep disruption is persistent when taken at night, may change to AM dosing. Recommend a 4 month trial. For those patients sensitive to many medications, start at 0.1- 0.5 mg.
Serotonin norepinephrine reuptake Inhibitor For fibromyalgia and those with widespread pain,  depression, insomnia. May increase sweating, blood  pressure or heart rate.
Duloxetine  20–60 mg 
Milnacipran  25-100 mg BID
Anti-epileptics
Gabapentin (see above for use in sleep) 100–600 mg TID  For sleep disrupted by pain, restless leg syndrome, anxiety, fibromyalgia, periodic limb movement disorder, and neuropathic pain. Can dose up to 2400-3600 mg/day in divided doses. Beyond 1800 mg, pregabalin may be more effective and less expensive. 
Pregabalin (see above for use in sleep) 50-225 mg twice  daily FDA dosage is 150 to 225 mg twice daily, but lower doses are also used. For fibromyalgia, pain and sleep. Sedation or dizziness may be limiting side effects.
Muscle Relaxants
Cyclobenzaprine  5-10 mg  For insomnia, muscle spasm/pain. May worsen dry  mouth, constipation, orthostatic intolerance, or cause daytime sedation.
Tizanidine  2-8 mg q 8 hours  For fibromyalgia, spasm, and pain relief. May cause  orthostatic hypotension and sleepiness.
Baclofen  5-10 mg TID  For muscle spasms and cramping. 
Medical marijuana  For neuropathic pain, nausea, irritable bowel syndrome, insomnia. Dosing is hard to determine and there can be problems with product variability. Check local laws.
Nonsteroidal anti inflammatory drugs
Celecoxib  100-200 mg qd  For joint or muscle pain. Can also be very helpful for brain fog and for mast cell activation syndrome.
Meloxicam  Per package insert, may exacerbate gastritis or reduce renal function. When these work, may suggest unappreciated rheumatologic disorder.
Diclofenac  (topical also) For joint pain.

 

Naproxen
Acetaminophen  500-1000 mg prn 8 hrly May not be effective. Concerns with liver toxicity.
Amitriptyline  10 to 50 mg nightly  Amitriptyline is an old standard for fibromyalgia pain. Other tricyclics may be helpful.
Tramadol  50-100 mg every 6 to 8 hours Opiates are usually to be avoided but may be necessary, in which case tramadol could be the first choice. Can be effective for more than just pain. Small risk of seizures when used with other serotonergic drugs. Note: Other short acting, low  dose opioids can be useful, used sparingly PRN, for ME/CFS symptoms.

 

Immune Dysfunctionimmune system punch out

Medication  Dose  Comments on Usage
Intravenous immunoglobulin 400 mg/kg q  

monthly

For common variable immune deficiency (CVID), low IgG, low IgA, ParvoB19 antibodies, recurrent infections. Best done in consultation with an immunologist to determine most appropriate therapy. An immunologist can help facilitate insurance coverage. Go slow and always use premeds to reduce side effects, particularly in patients with mast cell activation syndrome. Often divide dosing to q 1- 2 weeks. Insurance may require documented poor response to pneumovax. 
Subcutaneous gamma globulin 10-25 gm/month
Inosine pranobex (Isoprinosin) 500 mg, 3 tabs daily weekdays  to start  For frequent viral infections, herpes simplex outbreaks, low natural killer cell activity, sore throat, tender nodes, low grade fevers. Dose is 500mg, 3 tabs daily weekdays for 3 months, then one tab BID for maintenance. May be hard to access. Alternative is inosine, available online.
Hydroxychloroquine  200 mg BID  For autoantibodies, autoimmune issues, joint pain  and positive antinuclear antibody (ANA) test, severe  arthralgia/myalgia. Eye exam should be performed at baseline and after 6 months. It can take at least 3 months before an effect is seen. 

 

Suspected Small Intestinal Bacterialgut health Overgrowth 

Medication  Dose  Comments on Usage
Rifaximin, metronidazole, doxycycline,  According to label For proven or suspected small intestinal bacterial overgrowth. Neomycin has a risk of ototoxicity. 

 

amoxicillin-clavulonic acid, sometimes oral  vancomycin, rarely  neomycin  Address motility, gastroparesis, and leaky gut issues  if present

 

Part 2.  SUMMARY OF NON-PHARMACOLOGICAL THERAPIES FOR ME/CFS

Post-exertional Malaise (PEM) and Fatigue

Pacing of physical and cognitive activity to conserve energy and minimize post exertional malaise (1). Once the patient has achieved a stable baseline using pacing, then very carefully selected and individualized increases in activity can be  undertaken. The type of activity must be tailored for the patient’s level of severity and to ensure the activity does not trigger post-exertional malaise.
Assistive devices, such as a motorized scooter, wheelchair, walker with seat/basket, shower chair, handicap parking sticker, audio recorders and recording pens, etc. when needed to conserve energy.
Home health aides for those who are more severely ill.
Ear plugs, eye masks, and sunglasses, blue light filters, perfume free environments, etc. to decrease sensory stimulation. May need to maintain low sensory environment for most severely ill.
School or work accommodations such as flexible hours, shortened days, periodic breaks and place to lay down during breaks, lighting and other environmental modifications to avoid sensory overload and conserve energy.

Orthostatic Intolerance

Salt, fluid loading, electrolytes, IV saline. Sodium intake should be complemented with modest potassium, magnesium supplements. Camelbacks for hydration.
Compression stockings or abdominal binder.
Positional changes: Avoid prolonged sitting or standing. Knees higher than hips. Sit on legs so legs are not hanging down. 
Consistent, carefully tailored exercise, as long as the patient can do so without triggering PEM. May need to do exercise lying down, seated, or in water.
Treat comorbidities that may contribute to orthostatic intolerance.

Sleep Issues

Sleep hygiene practices are a part of treatment but may be marginally effective in most patients. Recommendations may need to be tailored for bedbound patients and those who need to be recumbent to minimize symptoms such as orthostatic  intolerance. 
Meditation and relaxation exercises.
Ear plugs and eye mask.
Light therapy. Retimer Light therapy glasses. Sunlight for 15 minutes upon waking. 
Blue light filters to filter out blue light from phones and computers.

Gastrointestinal Issues

Healthy, varied diet low in processed food. Dietary changes and elimination of certain foods that provoke symptoms. Many patients do better avoiding foods such as caffeine, alcohol, spicy foods, aspartame, sugar, possibly dairy and gluten.

 

Cognitive Dysfunction

Cognitive pacing (e.g. only focus on one task at a time, limit reading time).
Simple memory aids (e.g. calendar reminder systems, notes, etc.).
Positional changes: Perform cognitive functions lying down and stay hydrated if orthostatic intolerance is a problem.
Caffeine or short acting stimulants if well tolerated.

Pain

Pacing to avoid flare up of pain.
Hot or cold packs as needed to relieve the specific source of pain.
Physical therapy, Massage, Myofascial release, Acupuncture, Dry needling of trigger points.
Chiropractic treatments.
Meditation and relaxation.
Neurofeedback techniques may be helpful.

 

<1) Campbell, B. Pacing Tutorial.

*Coalition Members include:

Dr. Lucinda Bateman – Internal Medicine, UT

Dr. Alison Bested – Hematological Pathology, FL

Dr. Hector Bonilla – Internal Med, Infectious Disease, CA

Dr. Charles Lapp – Internal Medicine, Pediatrics, NC

Dr. Bela Chheda – Internal Med, Infectious Disease, CA

Dr. Jennifer Curtin – Internal Medicine, CA

Dr. Tania Dempsey – Internal Medicine, NY

Dr. Theresa Dowell – Family Nurse Practitioner, AZ

Dr. Donna Felsenstein – Infectious Disease, MA

Dr. David Kaufman – Internal Medicine, CA

Dr. Nancy Klimas – Immunology, FL

Dr. Anthony Komaroff – Internal Medicine, MA

Dr. Susan Levine – Infectious Disease, NY

Dr. Benjamin Natelson – Neurology, NY

Dr. Daniel Peterson – Internal Medicine, NV

Dr. Richard Podell – Internal Medicine, NJ

Dr. Irma Rey – Internal & Environmental Medicine, FL

Dr. Ilene Ruhoy – Neurology, NY

Dr. Ronald Tompkins – Surgery, MA

Dr. Maria Vera-Nunez – Internal & Integrative Med, SC

Dr. Brayden Yellman – Rheumatology, UT

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