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"Patients know more about [M.E.] CFS than most doctors around the country do.  That makes it extremely important for patients to be proactive in their own care."
-Dr. David Bell-

First-hand experience from the editors and contributors to this website and anecdotal evidence from many patients has shown that an ICD-9-CM 323.9 diagnosis in the U.S., (specifying Myalgic Encephalomyelitis; or ICD-10 G93.3 outside the U.S.) may benefit patients in several ways.  (See the WHO ICD Codes page for more details.)  And if you are diagnosed with CFS, are disabled by  your symptoms and don't fit the M.E. definitions, there are steps you should take to make certain your diagnosis is correct.

● Most obviously for patients diagnosed with CFS who in truth have M.E., the M.E. diagnosis helps remove the misconception that your disease is all about merely being "tired all the time," and helps to convey the seriousness and debility of M.E. And widely known since the historic descriptions of M.E. is the fact that exercise worsens symptoms and prognosis, so it is imperative for M.E. patients to be extremely cautious with their exercise programs.  (See Ramsay's  and Dowsett's quotes on exercise, as well as the Mitochondrial/Energy Research, the Oxidative Stress Research, and the Circulatory/Cardio Research pages.)  Patients have reported more understanding and compassion from family, friends and the general public when using the label "M.E." in contrast to "CFS". (M.E. patients and M.E. specialists know full well "tired" does not begin to describe what we feel with M.E.!)

● In a perfect world, there would be no bias associated with the name chronic fatigue syndrome, but unfortunately there is.  And this includes those who are deciding on your disability case.  A diagnosis of M.E. rather than CFS has made the difference in at least few disability cases (the co-founders of this website included).

● If you have been diagnosed with CFS without thorough screening for other illnesses that may be causing your symptoms, you and your doctor could be missing an underlying, treatable illness.  And that would be a tragedy.

It's important to first make certain that you fit the definitions for M.E.  Then you must educate your family doctor about the differences between M.E. and CFS, in order to procure a 323.9 M.E. diagnosis.  (Go to the Definitions pages for documents by leading scientists and clinicians in the field describing these differences.  Also, see the Test Abnormalities page for a list of comprehensive testing that supports an M.E. diagnosis.)  If you do not fit the M.E. definitions, then request your doctor to proceed through the list of illnesses the CDC requires your doctor to rule out before diagnosing you with CFS.  If your symptoms are disabling, you have a right to have them thoroughly investigated.  There have been too many cases of missed diagnoses of serious but treatable illnesses prematurely labeled CFS, causing needless patient suffering.  (See Dr. Hyde's and Dr. Enlander's examples of CFS misdiagnoses.)

Disability

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.

Social Security Disability:

SSR 99-2p: Policy Inerpretation Ruling Titles II and XVI: Evaluating Cases Involving Chronic Fatigue Syndrome (CFS) - PURPOSE: To restate and clarify the policies of the Social Security Administration for developing and evaluating title II and title XVI claims for disability on the basis of Chronic Fatigue Syndrome (CFS), also frequently known as Chronic Fatigue and Immune Dysfunction Syndrome.

SSR 96-2p: Policy Interpretation Ruling Titles II and XVI: GIving Controlling Weight to Treating Source Medical Opinions - PURPOSE: To explain terms used in our regulations on evaluating medical opinions concerning when treating source medical opinions are entitled to controlling weight, and to clarify how the policy is applied.  [Editor's note:  If your doctor supports your disability case, this is a very important policy.  Your doctor's letter of support, including any tests and clinical observations that support his diagnosis and your degree of disability is crucial to obtaining a favorable ruling in your disability case.]

Disability Evaluation Under Social Security (Blue Book Listing of Impairments)  This listing is what SSA disability adjudicators use to determine your impairment.  It  contains neither CFS nor M.E., but it does list symptoms of ME and CFS. [Editor's note:  It has been requested by disability attorneys that ME and CFS advocates - including and especially ME and CFS medical specialists -  work toward getting these diseases listed in the Blue Book.]

Doctors

Co-Cure's Good Doctors List (International listings)

See the Doctors/Researchers list on the Links page

Education

The Chronic Illness Initiative at DePaul University's School for New Learning.
"We work with students who are chronically ill to help them complete their degrees. The program is on line (as well as on campus), so it's available to anyone across the globe who has access to a computer. Students may take as little as one class per term and may drop out for one or more terms as necessary. There are some scholarships available for our chronically ill students and we are working to obtain more. Faculty are aware and sympathetic, and the staff is well-informed regarding illnesses with waxing and waning courses. For information, write to lroyster@depaul.edu

Educational Issues for Children and Youth with ME/CFS and FMS

TEACH-ME: A Sourcebook for Teachers of Young People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Fibromyalgia Syndrome, will assist teachers and parents in understanding symptoms in young people and provide strategies for educational planning and accommodations.

Support

See the Links page, especially the General Information sites, many of which have support message boards, treatment information, help with disability claims, and a wide variety of other info to support patients through the difficulties specific to this illness.

Hints for living with M.E. - Jodi Bassett provides an excellent comprehensive list for patients and caregivers to make dealing with this chronic disease more bearable.