I put a variation of this together to give to some folks. I may go back and convert the links to proper scholarly citations, but for now I'm releasing it since today is May 12th - ME/CFS & FM Awareness Day. I figure it might help others. If you repost, please be sure to include the links! _____________ 10 THINGS ABOUT ME/CFS by A. Ishikawa Chronic Fatigue Syndrome (CFS) is a complex disease, classified by the World Health Organization as a nervous system disorder. CFS has also been called Chronic Fatigue Immune Deficiency Syndrome (CFIDS) or Postviral Fatigue Syndrome (PVFS). In some parts of the world, CFS is interchangeable or paired with Myalgic Encephalomyelitis (ME). Myalgia means "muscle pain" and encephalomyelitis roughly means "inflammation of the brain and/or spinal cord." Below are some things about ME/CFS: 1. If regular fatigue is a match, then CFS is a nuclear bomb [paraphrase of statement by Laura Hillenbrad, author of Seabiscuit and Unbroken, a CFS patient]. ME/CFS is not feeling a little tired or sleepiness. It is not the "good fatigue" a person feels after intense exercising, shopping, or a hard day's work. It is not cured by sleep/rest. Under the Fukuda criteria, CFS requires at least 4 of 8 symptoms besides chronic fatigue, such as intense headaches, swollen lymph nodes, and post-exertional malaise (PEM). A "mild" diagnosis from the ICC requires a 50% reduction in normal activity levels. ME/CFS is a diagnosis of exclusion. Medical staff must run a battery of tests to rule out other possible fatiguing conditions. Anything which can adequately explain symptoms - such as cancer, depression, or allergies only - rules out a diagnosis of CFS. ME/CFS is not psychological. Researchers have found a host of clinical abnormalities, including reduced natural killer cell function, increased inflammatory cytokine markers, and more. Dr. Rich Van Konynenberg explained patients' bodies are shown to be continuously fighting with the "civilians" of the immune system but not "winning the war." 2. Quality of life in ME/CFS is reported to be less than in other chronic illnesses.† Dr. Sarah Myhill saw brain scans of CFS patients, but without knowing a diagnosis would have assumed she was looking at scans of stroke patients due to the impaired blood flow. Dr. Nancy Klimas, who worked with both AIDS and ME/CFS patients, said that out of the two diseases she would rather have AIDS, if given the choice in 2009. Many ME/CFS patients may be unable to complete school, maintain a job, or raise a family. About 19% of CFS patients were reported to work full-time, 64% had work limitations, and 51% were on disability. An estimated 10-25% of patients are housebound or bedbound in the UK. As Laura Hillenbrad stated, many patients were driven, hard-working individuals prior to onset. Although CFS is diagnosed more in women - as is found in autoimmune disorders such as lupus - it can affect persons regardless their socioeconomic status, gender, or ethnicity. Some patients have died as a result of ME/CFS complications. One patient, Sophia Mirza, was revealed on autopsy to have dorsal root ganglionitis (inflammation of the spinal cord) which is believed to have caused her debilitating symptoms. 3. CFS patients have a lower VO2max and reach anaerobic threshold earlier.† ME/CFS is not the result of deconditioning or a sedentary lifestyle. On a 2-day CPET (cardiopulmonary exercise test), CFS patients were unable to reproduce their results from Day 1 on Day 2, indicating the effects of post-exertional malaise (PEM). Sedentary controls, however, were able to reproduce their exercise results. CFS patients were shown to give full effort, as measured by clinical instruments. Anaerobic threshold is reached by athletes performing strenuous activities, such as a mile race. However, CFS patients may reach anaerobic threshold by performing basic tasks, standing, or even sitting. Performing at or above the anaerobic threshold results in PEM and also muscle pain from lactic acid build-up. According to Staci Stevens of the Workwell Foundation, CFS patients should only exercise for a maximum of 30 seconds (they recommend analeptic exercise) and must rest thereafter. Programs such as Graded Exercise Therapy (GET) can push a patient beyond their energy envelope, which can lead to damage, sometimes long-term. 4. ME/CFS is different from depression and/or anxiety. In contrast with depressed or anxious patients, CFS patients might have high levels of serotonin and low-normal levels of cortisol (including UFC). SPECT scans revealed CFS patients have a markedly lower midcerebral uptake index when compared to patients with unipolar depression. An EEG was successfully used to identify CFS vs. depressed patients. Anti-depressants may help patients with pain and sleep, but may overstimulate the sympathetic nervous system - which is already typically dominant in CFS - and cause unbearable side effects. Programs such as Cognitive Behavorial Therapy (CBT) and support group therapy are not curative for ME/CFS, but may help with coping or co-morbid psychological conditions. 5. CFS patients were found to experience mitochondrial dysfunction.† Mitochondria are the "energy power plants" of the body, so mitochondrial issues mean lower energy. One ME/CFS patient described his situation as having a lower-capacity battery that takes longer to charge, and the energy is used up more quickly. Dr. Myhill et al. found healthy controls had a mitochondrial function score of 1.00-2.83. In contrast, CFS patients scored an average of 0.42. Generally, the lower the patient's mito score, the lower their ability (see graphs). Mitochondrial impairment can result in prolonged angina or chest pain. Patients sometimes may not have the energy to lift silverware, speak, or think - or they can only speak short phrases or single words. Patients may be unable to regulate body temperature, and may experience heat or cold sensitivity and light and sound sensitivity. Very severe patients may be confined to bed in a dark and quiet room with IV/tube feeding. If you see a patient out and about, that may be the only day of the week they feel well enough to be in public. 6. CFS patients typically have more lactate in ventricular cerebrospinal fluid (CSF).†† One study found the mean lactate measured in CFS patients was 348% of healthy controls. Another study found CFS patients experienced mental fatigue above 2 standard deviations vs. the mean score of healthy subjects, when completing the same task. 7. CFS patients typically have abnormal brain scans. Using new imaging technology, Stanford found CFS patients have reduced white matter and an abnormality on one side of the brain vs. healthy controls. SPECT scans show reduced blood flow and thus oxygen to the brain. An MRI may show lesions. One study found patients have inflammation in one or more areas of the brain, which correlated with symptom severity. Brain inflammation (termed "encephalitis") may be fatal when acute, but CFS patients can experience lower levels of chronic inflammation, which can cause pain and cognitive dysfunction. Brain issues can cause cognitive deficits. Cognitive functions include memory, decision-making, planning/organizing, conversation, spatial relationships, and reading. This means a patient's ability to read a book, phone a friend, or keep up with other sensory information can be negatively impacted. Sometimes, a patient can "word salad" - unconsciously mixing up words when speaking. 8. Many ME/CFS patients have orthostatic intolerance (OI). Researcher believe that OI may be caused by autoimmunity or a viral infection which has affected the autonomic nervous system, impacting blood pressure and heart rate. For example, Neurally Mediated Hypotension (NMH) can cause a person to faint while standing. Postural Orthostatic Tachycardia Syndrome (POTS) is associated with a reduction in diastolic and systolic cerebral blood flow by 60% and 44%, respectively, during testing. This can make simple tasks such as grocery shopping, stovetop cooking, or tooth-brushing challenging to impossible. OI can be diagnosed via a tilt-table test. OI may be helped by compression stockings, salt and water to increase blood volume, and/or medication such as a beta blocker and/or vasopressor. [CFS patients typically have lower blood volume, perhaps short by as much as 1 liter, vs. healthy controls, so vasoconstrictive medication may be beneficial to those with lower blood pressure.] 9. About 10% of CFS patients reached sustained remission after 3 years.† There is no known single cause or cure for ME/CFS. Of the few patients who reach a remission, some report relapsing, precipitated by childbirth or infection, and can experience a reduced level of functioning even below their prior level of illness. Some patients may report improvement, even if small. Beyond that, patients must deal with symptom management. Palliative care may include a methylation protocol to raise glutathione by using L-methylfolate and a specific type of Vitamin B12, with sufficient potassium and co-factors [Patients are suggested to use caution, as methylation protocols can lead to hypokalemia, which can be fatal]. Other potentially helpful care may include acetyl-l-carnitine or L-carnitine fumarate, fish oil, CoQ10 or reduced CoQ10, sodium bicarbonate, D-ribose to help with ATP, caffeine for cyclic AMP, and more. Note that D-ribose was found to cause glycation in mice. Not all supplements work for everyone and results may depend on genetic mutations, etc. [According to Dr. Konynenburg, most patients have been found to have a reduced level of glutathione, which helps with detoxification and protects the vitamin B12 around mitochondria in the body. Glutathione depletion is also linked with Multiple Chemical Sensitivity (MCS).] 10. Recent research shows some ME/CFS subsets might be an autoimmune disorder. The Institute of Medicine report in February 2015 mentioned studies which accounted for three separate autoimmune disorders affecting 20% or more of patients in each study. In one study, 24% of CFS patients tested had antibodies to heat shock protein 60 (HSP60). HSP60 is found in viruses, bacteria, and mold, but also human mitochondria - suggesting some CFS patients might have a pathogen-induced autoimmune disorder. A recent study found that CFS patients may also have autoimmunity to serotonin. Some patients have successfully managed their condition with an immune drug such as Rituximab or Ampligen or have found help via Low-dose naltroxene (LDN). In a Norwegian Rituximab trial, 67% patients experienced at least a moderate reduction in fatigue, with 10% being symptom-free on follow-up. LDN is about $30 USD/mth; Ampligen and Rituximab cost thousands per month. However, patients may also have one or more ongoing infections. Thus, it is important to test for and treat any initial, reactivated, or opportunistic pathogens, including reactivated EBV (mono), CMV, HHV-6, Lyme and Lyme co-infections, etc. According to current research, CFS is not shown to be contagious. However, CFS may have a genetic component, as those diagnosed with CFS have a higher incidence of having a relative diagnosed with the illness. For more information, please see the IACFS/ME Primer for Clinical Practitioners. Note: I recognized the Fukuda criteria, Canadian Consensus Criteria, and International Consensus Criteria while compiling this piece.