# "I have ME/CFS"



## M&M (Jan 20, 2002)

This letter from a patient was posted to the Co-Cure Email List, and is just a good reminder about how diagnosis works with this illness:


> quote: Subject: ACT: I have ME/CFS From LK Woodruff I have a 'primary' diagnosis of ME/CFS, ICD10 G93.3, neurogenic. I meet the2003 ME/CFS Canadian Criteria, which makes it mandatory that patients havethe hallmark symptom of 'exertion intolerance', as well as the neurological,neurocognitive, neuroendocrine, dysautonomic, cardiac and immunemanifestations that also come with this illness.I met the previous formal criteria, also. But I no longer say I have CFS(or CFIDS, or CFS/ME or M.E./CFS or ME/CFIDS, or any of the othercombinations that so many, especially here in America, make up and toss outconfusingly.) Previous criteria was not as precise or tight as this newcriteria, which additionally and specifically states:-->Symptoms other than fatigue must be present for a patient to meet thecriteria.I also have some 'secondary' diagnoses of fibromyalgia, asthma and MCS. Butthey are not what primarily make me ill. They are not what landed me on'total and complete disability' (tho they may well have been contributingfactors.) They are different conditions--with different formalcriteria--which I happen to fulfill and which are some of the very few aperson with ME/CFS can also be afflicted with. Because these secondarydiagnoses are different illnesses, they need to be researched seperately.Here are some possible co-morbid entities that a person with ME/CFS can alsohave:Fibromyalgia syndrome(FMS), Myofascial Pain Syndrome (MPS),Temporomandibular Joint Syndrome (TMJ) Irritable Bowel Syndrome (IBS),Raynaud's Phenomenon, Prolapsed Mitral Valve, depression (non-clinical),migraines, allergies, Multiple Chemical Sensitivities (MCS), Hashimoto'sthyroiditis (only) and Sicca Syndrome.Some, such as IBS, may precede the development of ME/CFS for many years,then become associated with it. The same holds true for migraines anddepression (non-clinical.) Their association is thus looser than between thesymptoms within the syndrome.Many other illnesses rule out a diagnosis of ME/CFS. Remember, it is still a"diagnosis of exclusion."Having these illnesses will exclude a diagnose of ME/CFS:These will include active disease processes that explain most of the majorsymptoms of fatigue, sleep disturbance, pain and cognitive dysfunction. Itis essential to exclude certain diseases which would be tragic to miss,like: Addison's disease, Cushing's Syndrome, hypothyroidism, irondeficiency, other treatable forms of anemia, iron overload syndrome,diabetes mellitus and cancer(s).It is also essential to exclude 'treatable' sleep disorders such as upperairway resistance syndrome and obstructive or sentral sleep apnea;rheumatological disorders such as Rheumatoid Arthritis, Lupus, polymyositisand polymyalgica rheumatica; immune disorders such as AIDS; neurologicaldisorders such as Multiple Sclerosis (MS) Parkinsonism, Myasthenia Gravis,B12 deficiency, primary psychiatric disorders (e.g., clinical depression,bi-polar disorder), substance abuse, and infectious diseases, such asTuberculosis, chronic Hepatitis and Lyme disease.Idiopathic Chronic Fatigue (cf) is diagnosed if a patient has unexplainedprolonged fatigue (6 months or more) but has insufficient symptoms to meetthe criteria for ME/CFS.Exclusion of other disorders which cannot be reasonably excluded by thepatient's history and physical examination is achieved through laboratorytesting and imaging. If a potentially confounding medical condition is undercontrol (through treatment), then a diagnosis of ME/CFS can be entertainedif patients meet the criteria otherwise.Trying to educate the public about this very debilitating illness (it cannotbe labeled a 'disease' yet because the etiology is not yet fully understood)only confuses them and the issues further, when so many different terms areused, when 'old' information continues to be spread and when people who donot meet the criteria claim to have ME/CFS.If WE--the people who have this illness--don't sound like we know what we'retalking about...when several people write to one source and their lettersall mention umpteen terms and explain the symptoms &/or the illnessdifferent ways...that only confuses the reader(s). It does NOT drive anypoint(s) home, except perhaps the one that we tend to come across asconfused &/or unbalanced, and our terms and stories don't match
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