Summary of elements necessary to obtain a proper and accurate diagnosis of  ME/CFS

  • The patient should learn as much as possible about how a proper and accurate diagnosis of ME/CFS is made: what medical Diagnostic Criteria are most accurate and in current use. (We recommend the 2003 Canadian definition.) The patient, his/her family and significant others must be in a position to evaluate if the physician is properly diagnosing the illnesses, or if a misdiagnosis is occurring. A patient cannot be his or her own doctor—not only is this impossible, it is hazardous—but an educated patient can assist the physician and be, as much as possible, a partner with him or her. This is difficult when the patient is very sick, so perhaps a family member or friend can help with this. Unfortunately, with so much misinformation about these illnesses, even among many fine doctors, the patient must be able to evaluate what is going on. Moreover, by being informed, the patient can provide the physician, when appropriate, with copies of the Diagnostic Criteria and other information on the illnesses. Many doctors who are not fully informed about the illnesses will appreciate receiving scientific and medical information that will assist them in diagnosing and treating their patients.
  • The patient must be able to describe his/her illness as carefully and accurately as possible to the physician—the symptoms of the illness, how severe they are, do they come and go; how did the illness begin, how does it occur from day-to-day and week-to-week. The physician needs to be able to spend the necessary time evaluating the illness and eliciting from the patient the information needed to make a careful diagnosis. It is crucial that the patient is as succinct and well-organized as possible during the visit.  This requires homework before the appointment, perhaps with the assistance of a family member or friend.  Without that preparation on the part of the patient, the physician can't do his/her job.
  • The patient needs to have a doctor who is capable of making an accurate and proper diagnosis. The physician should be sufficiently informed as to the actual nature of the illness and how the proper diagnostic criteria are correctly applied.

The patient and doctors may find it helpful to use the Activity Log in Appendix D p. 39 and the Functional Capacity Scale in Appendix C p. 38 of ME/CFS: A Primer for Clinical Practitioners.