Important notice: Please note that the information on Treatment provided here has been compiled by patients for patients, and represents a summary of what patients may have experienced in working with their individual health care providers. The information in this website is not a substitute for professional medical advice. Please consult with your physician or other healthcare provider in matters pertaining to your medical care. See our full Medical Disclaimer.
Health Care Providers: Please see the information in ME/CFS: A Primer for Clinical Practitioners.
The following articles present either comprehensive views of the illness or focus in on major elements of ME/CFS. Many discoveries that were made years ago remain important today as ME/CFS research of the past often continues to be the leading research in many areas of the illness.
Treatment of ME/CFS remains a treatment of symptoms. The only treatment for ME/CFS as such is Ampligen, which has been undergoing a more than 25 year approval process with the FDA. While it finally has been approved in the European Union, it doesn't look as if it will be approved in the USA any time soon. It is also vastly expensive.
Meanwhile, the symptomatic treatment has remained essentially the same for over 30 years. So the suggestions our physician lecturers made to us almost 20 years ago are as relevant today as those made in the 2014 ME/CFS: A Primer for Clinical Practitioners. Some of the authors of the Primer are the same as those doctors whose lectures to Mass CFIDS we include here. However, the Primer was written by a committee, with compromises. We've included here lectures and articles by individual doctors, all of whom have decades of seeing ME/CFS patients, so you can see their personal advice concerning treatment.
25 year follow-up in Chronic Fatigue Syndrome–Rising incapacity. Very detailed report of a lecture by Dr. David S. Bell to the Massachusetts CFIDS/ME and FM Association. Gives the results of his 25-year follow-up of his original pediatric ME/CFS patients and has a discussion of various treatments.
Complementary and Mainstream Treatment Approaches—Very detailed report of a lecture by Dr. Jeanne Hubbuch to Mass CFIDS.
Conceptual Breakthrough —Very detailed report of a lecture to Mass CFIDS by Dr. David Bell on possible causes, tests, and treatments for ME/CFS symptoms. He presents his research on orthostatic hypotension and low blood volume in ME/CFS.
Research Advances in Chronic Fatigue Syndrome: Impact on Treatment by Dr. Nancy Klimas. A very detailed report of Dr. Nancy Klimas's 2006 presentation to Mass CFIDS on specific research findings, both here and abroad, which she personally found very promising as well as leading to more illness-specific treatments.
Update on Chronic Fatigue Syndrome and Fibromyalgia—From Research to Management—A detailed summary of Dr. Klimas's 2009 presentation to the Connecticut CFIDS & FM Association highlighting new research developments, new discoveries, and better ways to manage ME/CFS and FM.
What a primary care physician can do for ME/CFS patients by Dr. James Oleske
N.B. All lectures given to Mass CFIDS by physicians had Q & A sessions concerning treatment and these are reported in detail in our lecture reports. We have not listed all such lectures here. When we did not have a video of the lecture, we obtained slides from the lecturers and frequently had audio tapes. So these reports, although not verbatim, are accurate and very detailed.
25 year follow-up in Chronic Fatigue Syndrome–Rising incapacity—video of a lecture by Dr. David S. Bell to the Massachusetts CFIDS/ME and FM Association. Gives the results of his 25-year follow-up of his original pediatric ME/CFS patients and has a discussion of various treatments.
Dr. Peterson Says ‘Hold On, There's Hope' (Pro-Health) A video interview (approximately 11 minutes long) of leading ME/CFS clinician Daniel Peterson, MD by ME/CFS Alert (episode 26) co-host Llewellyn King.
Chronic Fatigue Syndrome: A Treatment Guide 2nd ed. by Erica F. Verrillo, 2012, E-book format
Overview of treatment on pp. 18-19 of ME/CFS: A Primer for Clinical Practitioners
The Science of Sleep This article is a detailed written summary of the lecture by Dr. Jo Solet, Harvard Medical School researcher and sleep expert, presented to the Massachusetts CFIDS/ME & FM Association on April 6, 2013.
Video: Dr. Jo M. Solet, the above lecture on Sleep.
Tips for Sleep and Fatigue Management in CFIDS/ME & FM by Dr. Jo M. Solet
Chronic Pain Control by Dr. Bell
Coanalgesics for Chronic Pain Therapy: a Narrative Review by Blair and Sanderson. Coanalgesics are medications that were not developed primarily for the treatment of pain, but have later been found to be effective for various types of intractable pain relief, either alone or in combination with other pharmaceuticals. This peer-reviewed paper gives a detailed survey of types of conanalgesics that exist, studies that show their effectiveness and suggested dosages. Unfortunately, seeing the complete paper costs $52. Viewing the Abstract is free.
Overview of treatment of pain on pp. 19-20 of ME/CFS: A Primer for Clinical Practitioners
Overview on pp. 20-22 of ME/CFS: A Primer for Clinical Practitioners
Description of cognitive problems and treatment is on pp. 22-23 of ME/CFS: A Primer for Clinical Practitioners
Overview is on p.23 of ME/CFS: A Primer for Clinical Practitioners
The Issue of Illness "Reversal" and the PACE trial by Fred Friedberg
“Mental Health in ME/CFS” and “Managing Depression” on p.23 of ME/CFS: A Primer for Clinical Practitioners
Compressing the Vascular System—Dr. Nancy Klimas
Low blood volume—Dr. David Bell
Managing Orthostatic Intolerance —video. 2010 webinar by Dr. Peter Rowe
Overview on p.24 of ME/CFS: A Primer for Clinical Practitioners
Abnormal gut by Dr. Jeanne Hubbuch
"Gastrointestinal Problems" and "Urinary Symptoms" on p. 24 of ME/CFS: A Primer for Clinical Practitioners
Approaches to treating infections by Dr. Jeanne Hubbuch
Enterovirus and ME by Dr. Byron Hyde
"Infections and Immunological Factors" on pp. 24-25 of ME/CFS: A Primer for Clinical Practitioners
"Allergies" on p. 24 of ME/CFS: A Primer for Clinical Practitioners
Treating Allergies by Dr. Jeanne Hubbuch
"Multiple Chemical Sensitivity" on p. 24 of ME/CFS: A Primer for Clinical Practitioners
"Immunizations" on p. 30 of ME/CFS: A Primer for Clinical Practitioners
Remarks on Immunizations by Dr. Byron Hyde
"Recommendations prior to surgery" on p. 30 and p. 41 of ME/CFS: A Primer for Clinical Practitioners
"Blood and tissue donation" on p. 30 of ME/CFS: A Primer for Clinical Practitioners
It is important to take extra steps to avoid medication interactions or errors, like being sure that the risks and benefits, side effects and proper use of medications are reviewed and understood by the patient before leaving the visit. All doctors and healthcare providers should be told which medications and supplements are being used, in order to prevent interactions.
One serious and potentially life-threatening interaction is called, Serotonin Syndrome, which can happen if too many products are combined that increase serotonin levels.
Some foods and beverages can affect how some medications work, so medications should usually be taken with water (unless otherwise instructed). And when picking up prescriptions from the pharmacy, it is a good idea to double-check them while at the counter to see if they are the right medication and in the right amount.
Some drugs may cause FM by Dr. Byron Hyde