Friday, May 6, 2011

“Grey” Information about ME/CFS Part 2

Attention: Doctors who think it's all in our heads

In his presentation entitled "The Diagnosis of Chronic Fatigue Syndrome: An Assertive Approach" that was co-authored by Dr Charles Lapp, Dr Paul Cheney stressed the need for the case for diagnosis by objective criteria.  He said: "The central problem is case selection.  Many patients with CFS are excluded from studies because they seem 'too sick' to have CFS….CFS cases are mixed in with non-cases.  Inappropriate controls are sometimes used. Some investigators, aware or unaware of a bias, attract or include in their studies the patients who best fit their view of CFS.  This so-called selection bias can markedly affect the observations of a study….The medical evidence cited for CFS asserts that the following are present more or less in every patient during the course of his or her disease: T-cell activation, discrete immune defects, viral activation or re-activation, exercise-related dysfunction, and evidence of brain dysfunction or injury.  While none of these tests can stand alone to 'diagnose' the illness, an array of these tests can be used to support this diagnosis" (it is worth recalling that in the UK, NICE has effectively proscribed these tests). There are a number of criticisms given for using (these) tests in the diagnosis of CFS.  They include the following: (1) We lack a gold standard for determining this disorder:  if a test abnormality has been shown in the medical literature to be associated with a certain disease, such as a positive ANA in lupus, then it is a valid test to be used in supporting a clinical diagnosis…. (2) Even if there are test abnormalities which can be associated with CFS there is no need to make a more definite diagnosis because there is no treatment for the disease: if this were a valid argument, then it would also apply to multiple sclerosis, many cancers, and even AIDS.  Documentation of an illness by objective criteria is important not only to confirm the diagnosis, but also to reassure the patient…Though there may be no scientifically validated treatment options for CFS…there are many therapeutic rationales based on test abnormalities which can defend empiric therapy….In the everyday practice of medicine, empiric therapy is often warranted in severe or functionally devastating illness….(Furthermore), the ability to successfully argue for disability is an extremely important aspect of therapy for this disorder….(3) CFS is a 'self-limited illness': this misperception of CFS is pervasive among many clinicians and the lay public.  A debilitating illness lasting years or longer is in fact not self-limited, and it deserves considerable medical attention….Good documentation of this disorder lays the groundwork for future empiric intervention".


Cheney then listed 22 physical findings in ME/CFS, stating that "Contrary to suggestions by some investigators, abnormalities on physical examination, although sometimes subtle, are usually present"; he listed 10 routine laboratory tests that are often present in ME/CFS patients; he listed his proposed set of tests for ME/CFS which include 4 tests of immunity and 5 tests of discrete immune defects; 5 tests of viral activation or re-activation; 5 tests of exercise-related dysfunction, and tests of brain dysfunction (structural scans, functional scans and neuropsychometric tests, including the Halstead Reitan battery). Cheney continued: "CFS clinical and bench researchers are developing an array of tests which are increasingly sensitive and specific for CFS – particularly when used in combination.  When patients present with symptoms that suggest CFS, we believe it is in their best interests to …employ these tests to confirm the diagnosis and to document the nature and extent of each case.  This information…enables the patient to make appropriate lifestyle adjustments (including defence of disability claims when necessary)".


Cheney's article was followed by a comprehensive overview as an aid to the diagnosis of ME/CFS by Dr Jay Goldstein, who addressed skin disorders in ME/CFS; headaches; eye problems; ear, nose and throat problems; pulmonary complications ("Dyspnoea, either at rest or on exertion, is the most frequent [pulmonary] complaint, but is probably centrally mediated"); cardiac abnormalities ("coronary artery spasm and microvascular angina should be considered"); gastrointestinal problems ("Gastrointestinal complaints are very common, and symptoms of irritable bowel form an integral part of the CFS spectrum of symptoms" – this should be compared with Professor Peter White's assertion in 2006 that "bowel symptoms are not part of CFS/ME"; St Bartholomew's Hospital Chronic Fatigue Services, Stakeholder comments on Chapter 6 of the draft NICE Guideline on "CFS/ME", page 316); pelvic disorders ("Perhaps the most common pelvic disorder in CFS is endometriosis….Adnexal masses and polycystic ovarian syndrome occur with greater frequency in CFS….A much higher percentage of my patients in a CFS practice have developed ovarian carcinoma that I experienced while practising family medicine"); genitourinary complaints ("Dysmenorrhea is also more common in CFS patients, even if endometriosis is not present….The primary genitourinary complaint in the male with CFS involves prostatic discomfort, frequency, and nocturia"); musculoskeletal abnormalities; neurologic abnormalities ("fasciculations are fairly common, as are tremors….A Hallpike test is sometimes abnormal in vertiginous patients, as is the Romberg test.  Muscle weakness is common….Patients should be followed for the development of multiple sclerosis or, more commonly in my experience, immune polyneuropathy"); associated carpal tunnel syndrome (CFS) and thoracic outlet syndrome (TOS) ("carpal tunnel syndrome and thoracic outlet syndrome are fairly common in CFS"); haematological abnormalities ("CFS patients often complain of easy bruisability or spontaneous ecchymoses….Platelet function studies are sometime abnormal").  Goldstein noted that: "The sed rate is often very low. Immune complexes and positive anti-nuclear antibodies are encountered very frequently….Elevated levels of various cytokines and their receptors are often seen"); he discussed at  length the cytokine abnormalities found in ME/CFS and other distinct laboratory abnormalities, as well as SPECT scan abnormalities, evoked responses testing, PET scan abnormalities, lesions detectable by MRI scans, abnormalities on neuropsychological testing, and functional capacity evaluation (ie. an assessment of the patient's ability to perform work demands and activities of daily living). Goldstein concluded by stating that he knew of no other mechanism than a limbic encephalopathy that could produce the diagnostic constellation seen in ME/CFS, but he pointed out that "Secondary adrenal insufficiency due to a central mechanism relating to CRH deficiency could be responsible for many CFS symptoms" (in which he specifically included vertigo, intermittent blurred vision and alopaecia). 

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