Chronic fatigue syndrome (CFS) — also known as myalgic encephalomyelitis or ME/CFS –– is a somewhat vague disorder that causes extreme fatigue and is more common than many people might think. The fatigue is not the kind of tired feeling that goes away after you rest; rather, the tiredness can last many months or years, limiting one’s ability to do ordinary daily activities. The main symptom of CFS can sometimes include: [a] feeling unwell for more than 24 hours after physical activity; [b] chronic muscle pain; [c] memory problems; [d] frequent headaches; [e] pain in multiple joints; [f] sleep problems; [g] sore throat; and [h] tender lymph nodes.
There are no tests for diagnosing or confirming ME/CFS, and other illnesses can mimic these symptoms. Therefore, physicians must first rule out other diseases before making a diagnosis of ME/CFS. No one knows what causes CFS; the etiology remains unknown. It is most common in women in their 40s and 50s, but it is possible to happen to anyone in any age group. Consequently, there is no unequivocal cure for ME/CFS –– thus, the goal of treatment has been simply to improve symptoms. It also comes as no surprise that many regard ME/CFS as a psychological or hysterical mindset in the afflicted patient. From 1994 until 2oo6 we published a Center for Environmental Genetics (CEG) NewsLetter, Interface (written in semi-lay language) that had a circulation of several hundred recipients. One of the most popular segments of Interface was called “Question & Answer” in which Readers were invited to inquire about anything involving health and the environment; the overwhelming topic (80-90% of questions) being asked about involved ME/CFS and related symptoms.
The attached article summarizes the latest news in the ME/CFS field. Patients having CFS have finally caught the attention of mainstream science, and dozens of exploratory studies are now under way. Scientists entering the field are beginning to use the powerful tools of modern molecular biology to search for any genes, proteins, cells and/or possible infectious agents involved. The goal of course is to develop a laboratory test to diagnose ME/CFS, and they want to identify molecular pathways to target with drugs. The US National Institutes of Health (NIH) in Bethesda, Maryland, bolstered the field last year by more than doubling spending for research into this condition. Included in this effort are funds for four ME/CFS research hubs in the United States that between them will receive $36 million over the next 5 years.
Nature 4 Jan 2o18; 553: 14–17
At the bottom of this email is my Jan 16th article shared among all of GEITP. Below is a response –– by a practicing physician who commonly sees these types of problems in the clinic, and who wishes to remain anonymous. The first five attached articles pertain to this response; the last article is the one originally shared by all of GEITP.
Sent: Tuesday, January 16, 2018 11:03 AM
Syndromic medicine is a real challenge. This two-sided problem in the clinic is currently manifested by: [a] an overabundance of “syndromes”, and [b] an equally overabundant number of practitioners quite happy to proceed with any form of intervention (usually invasive, and involving polypharmacy and multiple but unproven diagnostics). In the case of ME/CFS, the situation is obtunded by a very simple yet often overlooked fact: there is no true positive to address this as a scientifically valid or testable condition. It should be emphasized that no pathophysiology is known and no diagnostic tests exist.
This is not to say or imply that there is nothing wrong with these people; to the contrary, there clearly is some factor affecting them. However, referring to this in syndromic terms remains problematic and condescending. Commonly encountered overlapping conditions include fibromyalgia, complex regional pain syndrome (CRPS), cervical (or low back or shoulder, etc) syndrome, restless legs syndrome, etc. The list is endless.
It must be recalled that the term “syndrome” refers to a “collection of subjective complaints often seen together” (Stedman’s Medical dictionary). In practice, this definition is usually ignored, and all established scientific or medical boundaries are evanescent. These terms assume a clinical meaning roughly resembling the shape of water. From a practical perspective –– the term CE/CFS, when it appears in the literature, is so loosely defined as to have no meaning.
Sadly, the end result is that the poor patient is saddled with a syndromic assessment that is meaningless to anyone other than its author (who is the “treating doctor” trained in whatever background. Our medical profession is now seriously diluted by “para-professionals” who use such terms with no knowledge or understanding of the science which may, or may not, support those terms as meaningful.
The first of the above attached Articles (#1) describes N=41 patients and focuses on these unfortunate cornerstones of ignorance. Article #2 examines N=100 randomly-selected patients and finds no cause-and-effect between serum vitamin D levels and autoimmune disease or chronic syndromes. Article #3 describes a randomized double-blind study (N=50), concluding that high-dose oral vitamin D3 did not improve markers of vascular health or fatigue in patients having ME/CFS. Article #4 represents a literature search, finding 56 articles that met authors’ criteria; yet, their conclusions (that “classification of patients according to severity and symptom patterns, aiming to predict prognosis or effectiveness of therapy, seems useful”) seems as vague as the ME/CFS disorder itself. Finally (Article #5), summarizes N=92 patients and N=94 matched controls, concluding that low serum vitamin D status did not appear to be a contributing factor to the level of fatigue in ME/CFS patients.
There exist many other studies in the medical literature. Many studies describe patients having subjective complaints of fatigue, others sound vaguely like some patients such from a severe psychiatric disturbance. No clinical data are provided to permit any form of scientific assessment. All physicians must learn to adhere to our Hippocratic Oath, “Primum non nocere” (“First, do no harm”). However, like Sherlock Holmes, we must investigate the patient and provide appropriate intervention, while we continue to question and logically pursue the cause of the problem.