Rainbow at shoreline

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Research articles

Working with your FM doctor

When a health care provider suspects a diagnosis of fibromyalgia, often s/he will refer the patient to a rheumatologist to confirm the diagnosis. This may take one or more visits. Sometimes the rheumatologist will continue to follow the patient but often the patient will be referred back to the primary care provider for continued care.

As with any condition, health care providers vary in their knowledge of fibromyalgia, and even in their attitude toward this condition. If you feel that you are not getting appropriate care from any doctor, a frank discussion at the next appointment may help. Lean more about Working with your Health Care Provider.

Leading Doctors Explain ME/CFS in videos and text

IACFS/ME 2014 Conference Summary by Dr. Rosalind Vallings. Detailed written summary.

Video of Dr. Komaroff's 2013 lecture to MassCFIDS "CFS Research: Recent Progress and Challenges." The extensive Q & A addresses treatment.

Dr. Komaroff's summary to MassCFIDS of the 2011 IACFS/ME Conference. Detailed written summary.

IACFS/ME 2011 Conference Summary by Dr. Rosalind Vallings. Detailed written summary.

Dr. David Bell's 2011 lecture to MassCFIDS "25-Year Follow-up: Rising Incapacity" on the results of his follow-up study of his patients from the Lyndonville, NY outbreak of ME/CFS. Detailed written summary and video.

Dr. Komaroff's 2010 lecture to MassCFIDS "The Latest CFS Research." Detailed written summary and video.

Dr. Komaroff's "2008 Progress Report on CFS Research." Article by Dr. Komaroff.

Dr. Nancy Klimas's 2006 lecture to MassCFIDS "Research Advances in CFS: Impact on Treatment." Detailed written summary.

Dr. David Bell's lecture to MassCFIDS described in the detailed article "A Conceptual Breakthrough? Dr. Bell Relates 'Very Exciting' Findings on Possible Causes, Tests, Treatments for ME/CFS." 

 

Conventional Medicine Treatment for ME/CFS

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.

Comprehensive Articles, Videos and Books on ME/CFS Treatments

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.

Conventional Medicine

Dr. Klimas Speaks to Mass. CFIDS on Cutting-Edge Developments

Management of 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.

Treatments recommended by Dr. Nancy Klimas

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.

Videos

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.

Books

Chronic Fatigue Syndrome: A Treatment Guide 2nd ed. by Erica F. Verrillo, 2012, E-book format


Sleep disorder

Ambien may leaver older patients at greater risk for falls

Overview of treatment on pp. 18-19 of ME/CFS: A Primer for Clinical Practitioners

Sleep Disorder

Sleep disorder and ME/CFS

Sleep physiology

Sleep therapies

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

Treatment approach to sleep problems

Treatment of sleep disorders


Pain

Approaches to pain treatment

Books about Pain and Pain Management

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

Pain Control

Pain management

Treatment of pain


Fatigue and post-exertional malaise

Approach to treating fatigue

Effects of ME/CFS on muscle

Fatigue treatments

Overview on pp. 20-22 of ME/CFS: A Primer for Clinical Practitioners

Treatment of post-exertional malaise and mitochondrial dysfunction


Cognitive function

Cognitive function treatment

Cognitive function approach suggested by Dr. Nancy Klimas

Description of cognitive problems and treatment is on pp. 22-23 of ME/CFS: A Primer for Clinical Practitioners


Cognitive Behavioral Therapy and Graded Exercise Therapy

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

Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome


Mood disturbances/depression

Approaches to treating depression/anxiety

Differential diagnosis between ME/CFS and Psychiatric Disorders

Dr. Komaroff publishes an article demonstrating that CFIDS is a physical, and not a psychiatric, illness

Mental Health issues in patients with ME/CFS and FM

“Mental Health in ME/CFS” and “Managing Depression” on p.23 of ME/CFS: A Primer for Clinical Practitioners

Mood disturbance treatment


Orthostatic Intolerance, low blood volume, cardiovascular/blood pressure irregularities

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

Treatment of cardiovascular and blood pressure irregularities

Treating POTS and hypercoagulation


Cardiac involvement

Cardiac Symptoms and Abnormalities Documented in CFS

Diastolic cardiomyopathy and intermittent tachycardia

Heart muscle involvement

New Cardiomyopathy: Pilot study of Ganciclovir in a subset of the Chronic Fatigue Syndrome patients


Digestive disturbances and urinary problems

Abnormal gut by Dr. Jeanne Hubbuch

Digestive disturbances

"Gastrointestinal Problems" and "Urinary Symptoms" on p. 24 of ME/CFS: A Primer for Clinical Practitioners

IBS Linked to Bacteria in Gut


Infections–Bacterial, Viral and Fungal

Antiviral treatment creates improvement in a subset of ME/CFS patients

Approaches to treating infections by Dr. Jeanne Hubbuch

Drs. Lerner and Zavros, “New Cardiomyopathy Pilot Study of Intravenous ganciclovir in a subset of the chronic fatigue syndrome disease in clinical practice”

Enterovirus and ME by Dr. Byron Hyde

Half of CFS patients with high HHV-6 & EBV titers improve 30% or better on Valcyte

"Infections and Immunological Factors" on pp. 24-25 of ME/CFS: A Primer for Clinical Practitioners

Treatment of infections

Will Rituximab be a Viable Treatment option for ME/CFS?


Allergies

"Allergies" on p. 24 of ME/CFS: A Primer for Clinical Practitioners

Treating Allergies by Dr. Jeanne Hubbuch


Multiple Chemical Sensitivites

CFIDS and Multiple Chemical Sensitivity

"Multiple Chemical Sensitivity" on p. 24 of ME/CFS: A Primer for Clinical Practitioners


Dry eyes, dry mouth, and dental problems

Dry mouth can be detrimental to your health 

Oral complications in Sjögren's Syndrome and chronic dry mouth


Immunizations

"Immunizations" on p. 30 of ME/CFS: A Primer for Clinical Practitioners

Remarks on Immunizations by Dr. Byron Hyde


Anesthesia recommendations

"Recommendations prior to surgery" on p. 30 and p. 41 of ME/CFS: A Primer for Clinical Practitioners

Recommended for persons with ME/CFS and FM undergoing surgery


Blood and tissue donation

"Blood and tissue donation" on p. 30 of ME/CFS: A Primer for Clinical Practitioners


Warnings about various medications

General warning on using medications

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.

Other warnings

Ambien may leave older patients at risk of nighttime falls and injuries

CFS/FM and Chiari malformation surgery

Dr. Cheney Warns Against Long-term Use of SSRIs and stimulants

Some drugs may cause FM by Dr. Byron Hyde

Tighter restrictions recommended for Vicodin and hydrocodone products

Tylenol warning related to liver failure

Treatment for ME/CFS

Articles

General

Treatment Overview

Complementary and Alternative Treatment Approaches

Conventional Medicine

Life-style Management

The Severely Ill/Lowest Functioning Patient: Special Considerations—see pages 27-28 of ME/CFS: A Primer for Clinical Practitioners

 

Exercise

A Minimal and Achievable Exercise Program

Dr. Lapp's Exercise program

Exercise

Exercise and CFIDS by Diane Gallagher, a certified fitness instructor

Exercise and ME/CFS mitochondrial dysfunction

 

Nutrition

Improve your overall state of health and well-being

Nutrition

Nutrition dietary suggestions

 

Treatment Guides 

ME/CFS: A Primer for Clinical Practitioners

Clinical Guides for ME/CFS and Fibromyalgia

 

Reviews of Books about ME/CFS Treatment

Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition by Erica F. Verrillo, 2012, E-book format

Chronic Fatigue Syndrome, Fibromyalgia and Other Illnesses—The Comprehensive Guide, by Katrina Berne, Ph.D., 2001, ISBN: 0897932803

Chronic Fatigue Syndrome and Fibromyalgia, From F.I.N.E. to Feeling Better, by Nancy Fowler and Lisa Ball, 2010, ISBN: 1882883683

Chronic Fatigue Syndrome for Dummies, by Dr. Susan R. Lisman, 2007,  ISBN: 0470117729

Pain Free 1-2-3: A Proven Program for Eliminating Chronic Pain Now, by Jacob Teitelbaum, MD, 2005, ISBN: 0071464573. 

Sciatica Solutions: Diagnosis, Treatment, and Cure of Spinal and Piriformis Problems, by Loren Fishman, MD and Carol Ardman, 2006, ISBN: 0393330419.

Trigger Point Therapy for Low Back Pain: A Self-treatment Workbook (New Harbinger Self-Help Workbook), by Sharon Sauer, CMTPT, LMT and Mary Biancalana, MS, CMTPT, LMT, 2009, ISBN: 1572245638.

 

 

 

Subcategories

Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.