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"It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives."
-Dr. Judy Mikovitz-

Doctors and other health care providers in the past two decades have been led to believe there's little or nothing they can do to help ME and CFS patients.  Nothing could be further from the truth.  It is true that most ME and CFS patients are hypersensitive to most medications, that standard tests often show few or no abnormalities, and that disability insurers and Social Security claims adjudicators (and most of the general public) have an acquired bias when they hear the words 'chronic fatigue'.  But simply understanding the true nature and severity of this debilitating neuroimmune disease, and that 'fatigue' is an insult to what the patient is in reality suffering, is an immense help for the patient to cope with disabling chronic disease.  And understanding the differences between ME and CFS can mean the difference between high functionality or relapse and poor prognosis in a patient (or even in some cases, death), and nailing the differential diagnosis may mean the difference between finding an insidious underlying cause to a patient's symptoms, and/or an obviously disabled patient being awarded deserved disability payments or falling between the cracks of society and into the despair of poverty or even suicide.  Dr. Byron Hyde's  The Complexities of Diagnosis chapter in the Handbook of Chronic Fatigue Syndrome is one of the best summaries for differential diagnosis on this complex disease that we have found.

On the Test Abnormalities page, you will find that there are indeed many aids for diagnosing the patient.  This list of tests and many other diagnostic tools can be found in the most up-to-date, accurate and internationally-accepted clinical guide, Overview of the Canadian Consensus Document, the condensed  handbook of the more comprehensive Canadian Consensus Document for ME/CFS.  As veteran clinician and researcher, David S. Bell, MD, FAAP states, "The Canadian Consensus Document should be read and studied by every medical provider."

It is also helpful for the medical practitioner to view the Definitions pages of this website to gain a full understanding of what lies behind the confusion and controversy of the "F" word ("fatigue").  There are many great comprehensive texts and other resources on the Links page, and the Research pages touch upon what is a greater body of physiological evidence for the systemic dysfunction suffered by this group of patients.

One final note:  If your patient fits the more specific ME criteria, do not hesitate to diagnose myalgic encephalomyelitis ICD-10 G93.3 (ICD-9-CM 323.9 in the U.S.,  specifying ME)  According to a CDC ICD rep (July 2006), "M.E. has always been indexed to code 323.9.  That is the code number that patients should be assigned."  Doctors, patients and disability attorneys in the ME and CFS community have all had more positive experiences in the social, legal and medical  aspects of this disease by bypassing the bias of the CFS label.  (See the WHO ICD Codes page for more details.)  The proper diagnosis and code also translate to more accurate prevalence rates that aid researchers in their studies of this disease.

Indispensable for all health care workers are:

Canadian Consensus Document for ME/CFS
&
Overview of the Canadian Consensus Document

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The Nightingale Definition of Myalgic Encephalomyelitis (M.E.)
See an abridged version on Dr. Byron Hyde's definition page of this website.

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A Pediatric Case Definition for Myalgic Encephalomyelitis
and Chronic Fatigue Syndrome

"The definition proposed here is provided as a starting point for facilitating consistent research on pediatric ME/CFS." "The summary of symptoms in Table 1 could be referenced by pediatricians, school nurses, and even school teacher and staff responsible for Individual Education Plan development and implementation.  In addition, the criteria list could be useful to the young person, parents or other advocating for youth with ME or CFS in need of accommodations since it would give legitimacy to the child's symptoms.  The rapid, accurate identification of cases of ME and CFS followed by comprehensive and appropriate support and treatment might increase chances of recovery for all children and adolescents with this debilitating illness."

Legal and Scientific Considerations of the Exercise Stress Test
Ciccolla, Stevens, Snell, Van Ness, ©2007 The Haworth Press
"This article examines the legal and scientific basis on which an exercise stress test can provide medically acceptable evidence of disability for the CFS patient." Here is an invaluable tool for ME & CFS patients, their doctors and legal counsel to objectively document disability for both Social Security and private disability claims. This research group's excellent work proves the post-exertional disability that ME & CFS patients suffer, much worse on average than heart failure and COPD patients.

The INTERNATIONAL IiME ME/CFS Conference 2007
(DVD) An Update on Clinical Diagnosis, Research Trends and Educational Support.  (Available in both PAL & NTSC formats.)

CFS:  The Heart of the Matter
This outstanding seminar contains important, fascinating and unique material that will eventually be published. There is an overview of chronic fatigue syndrome, an in-depth look at the cardiovascular issues in CFS, a new model of the illness, and a full update on Dr. Cheney's latest study, including the treatment protocol.

The Heart of the Matter: CFS & Cardiac Issues
Carol Sieverling's 2005 summary of Dr. Paul Cheney's diastolic cardiomyopathy discoveries in his patients.

CFS, Heart Problems, and a Risky Procedure: A Warning from Dr. Cheney

Dr. Byron Hyde's recommendations on immunizations.

Dr. Paul Cheney shares his treatment protocols on an extensive articles list at the DFW Support site.

Dr. Paul Cheney on Mitochondrial Myopathy, MRS Brain Scans and Chronic Fatigue Syndrome  Info on MM use of MRS to detect MM in CFS patients.  Advice on using MRS to support patients' disability claims.

Dr. Derek Enlander summarizes his treatment protocols on his website.

Engaging With M.E.
(DVD and several online downloadable versions) Dr. Malcolm Hooper discusses the research and politics of ME and CFS in his 2005 seminar in Norfolk (UK).  Dr. Hooper and ME Support Norfolk have made this DVD copyright-free so it can be easily and widely distributed.

Information About Anesthesia
Anesthesia has adversely affected patients with CFIDS (also described as chronic fatigue syndrome and myalgic encephalomyelitis). The reason for this has been found. Recent research* funded by the National CFIDS Foundation, Inc. found that a substance, much like ciguatera toxin, is being produced in the body by a disease process in those with CFIDS/ME/CFS. Dubbed the "ciguatera epitope," this research explains the danger of using any anesthesia that uses the sodium channel at the cellular level. Some anesthesiologists have had success blocking the sodium channel during anesthesia for CFIDS/ME/CFS patients.

IACFS/ME (US-based)
"The mission of the IACFS/ME is to promote, stimulate and coordinate the exchange of ideas related to CFS, ME and fibromyalgia (FM) research, patient care and treatment. In addition, the IACFS/ME periodically reviews the current research and treatment literature and media reports for the benefit of scientists, clinicians and patients. The IACFS/ME also conducts and/or participates in local, national, and international scientific conferences in order to promote and evaluate new research and to encourage future research ventures and cooperative activities to advance scientific and clinical knowledge of these illnesses."

Sleep abnormalities in ME/CFS and suggested treatments. by Dr. David S. Bell

CFS is Heart Failure Secondary to Mitochondrial Malfunction by Dr. Sarah Myhill
Read Dr. Myhill's overview and treatment protocols.

Textbooks and other reading

A CDC official advised an inquiring CFS patient to refrain from donating blood or organs until the cause or mode of transmission is better understood. It has been shown that patients may harbor infectious agents in their blood and organs. Blood donation may also exacerbate symptoms due to low blood volume.  See the Contribute to Research page for making blood and organ donations to ME and CFS research.

A New and Simple Definition of Myalgic Encephalomyelitis
and a New Simple Definition of Chronic Fatigue Syndrome
&
A Brief History of Myalgic Encephalomyelitis
& An Irreverent History of Chronic Fatigue Syndrome
-Dr. Byron Hyde -

"Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.).  It is not.  Though CFS is based upon a typical M.E. epidemic, in my opinion it has always been a confused and distorted view of reality.
The invention of Chronic Fatigue Syndrome has to be one of the most curious cases of inventive American imperialism that one could imagine."

"Now I am not going to be too optimistic - I think XMRV is going to turn out to be the "cause" of ME/CFS, and I think treatments will be available from every family physician in America who accepts Medicare. The question is whether this occurs next year or twenty years from now." -Dr. David Bell-