Revised November 14, 2016 to include steps to evaluate for atypical ME as defined by ICC. MEadvocacy.org understands there is a great deal of confusion about the various criteria for myalgic encephalomyelitis, so we created an easy to follow questionnaire to help patients see if they may fit the 2011 International Consensus Criteria. _____________________________________________________________________ Do I fit the International Consensus Criteria? Questionnaire for patients over age 18 Disclaimer: This questionnaire does not replace the full International Consensus Criteria (ICC) document or the primer. It is based on the symptoms of the criteria and should not be used as a substitute for medical advice from a licensed medical professional. This document is for informational purposes. Consult a physician experienced in diagnosing ME. It is important to evaluate for other diseases before assigning a diagnosis of ME (ICD code G93.3). According to the ICC a six month waiting period is NOT required for diagnosis of ME. Removing the waiting period is very important so ME patients can be advised to get complete rest as soon as possible in order to get the best possibility of improved health. SECTION 1 Must have Post Exertional Neuroimmune Exhaustion (PENE) PENE is physical inability to produce sufficient energy on demand. The following are signs you have PENE: Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. Post-exertional symptom exacerbation: such as acute flu-like symptoms, pain and worsening of other symptoms Post-exertional exhaustion: may occur immediately after activity or be delayed by hours or days Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level. Symptom severity must result in a significant reduction of pre-illness activity level. The 2 day Cardio Pulmonary Exercise Test available at Workwell Foundation (California) and Ithaca College (New York) is a 2 day CPET specifically designed to look for inability to repeat physical activity two days in a row. If you aren’t sure if you have PENE, watching the following video may help you answer the question. Video by Mark VanNess explaining an abnormal physiological response to exertion and the 2 day test: https://www.youtube.com/watch?v=FXN6f53ba6k&app=desktop Do you have PENE: ___ Yes ___No If YES, go to next section. If NO, stop quiz. You do not fit criteria. SECTION 2 Check off the ones that apply to you. Neurocognitive Impairments ____ Difficulty processing information: slowed thought, impaired concentration such as confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia ____ Short-term memory loss: difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory Pain ____ Headaches: such as chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches ____ Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non inflammatory in nature and often migrates. In other words have generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain. Definitions: Hyperalgesia: increased sensitivity to pain Myofascial: pertaining to a muscle and its sheath of connective tissue, or fascia Sleep Disturbance ____ Disturbed sleep patterns: such as insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, waking much earlier than before illness onset, vivid dreams/nightmares ____ Unrefreshed sleep: awaken feeling exhausted regardless of duration of sleep, day-time sleepiness Neurosensory, perceptual and motor disturbances ____ Neurosensory and perception: inability to focus vision, sensitivity to light, noise, vibration, odor, taste and touch; impaired depth perception ____ Motor: muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia Definitions: Ataxia: Inability to coordinate muscle activity Did you check at least one box in at least three categories in section 2? __ Yes __ No If YES, go to next section. If NO, continue for possible atypical ME criteria. SECTION 3 Check off the areas that apply to you. ____ Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion. Such as sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender ____ Susceptibility to viral infections with prolonged recovery periods ____ Gastro-intestinal tract: such as nausea, abdominal pain, bloating, irritable bowel syndrome ____ Genitourinary: such as urinary urgency or frequency, excessive urination at night ____ Sensitivities to food, medications, odors or chemicals Did you check at least three boxes in section 3? ___ Yes ___ No If YES, go to next question. If NO, continue for possible atypical ME criteria. SECTION 4 Check off the ones that apply to you: ____ Cardiovascular - inability to tolerate an upright position - orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness ____ Respiratory - air hunger, laboured breathing, fatigue of chest wall muscles ____ Loss of thermostatic stability - subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities ____ Intolerance of extremes of temperature Did you check at least one box in section 4? ___Yes ___ No If NO, continue for possible atypical ME criteria. If you have answered YES to each section, you fit the International Consensus Criteria for Myalgic Encephalomyelitis. If you answered no in section 2, 3, or 4 you may have atypical ME. Atypical myalgic encephalomyelitis: meets criteria for PENE (section 1) but has a limit of two less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases. Myalgic encephalomyelitis International Consensus Criteria Authors: B. M. Carruthers, M. I. van de Sande, K. L. De Meirleir, N. G. Klimas, G. Broderick, T. Mitchell, D. Staines, A. C. P. Powles, N. Speight, R. Vallings, L. Bateman, B. Baumgarten-Austrheim, D. S. Bell, N. Carlo-Stella, J. Chia, A. Darragh, D. Jo, D. Lewis, A. R. Light, S. Marshall-Gradisnik, I. Mena, J. A. Mikovits, K. Miwa, M. Murovska, M. L. Pall, S. Stevens Note: pediatric symptoms vary - See source at this link for pediatric: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full Link to the International Consensus Primer for Physicians which lists tests and treatment options for those who fit the ICC: http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf ___________________________________________________________________ PRINTABLE VERSION: Here is a link to the Questionnaire if you would prefer to print it out. https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/22/attachments/original/1478717636/ICC_Questionnaire_Nov_2016.pdf?1478717636 WHAT CAN YOU DO? LEARN MORE: To better understand the various criteria used for ME. and CFS, please read our blog, Analysis of CFSAC August 2015 Recommendations for the IOM Criteria, from Dec 2015: http://www.meadvocacy.org/analysis_of_cfsac_august_2015_recommendations_for_the_iom_criteria EDUCATE OTHERS: Help us educate patients so they can become their own advocate by sharing/liking this blog on social media platforms; liking/and or sharing the MEadvocacy facebook page posts; and liking/retweeting MEadvocacy tweets.
It is with very heavy hearts that we report the passing of our friend and fellow ME advocate, Tom Jarrett. Tom came to MEadvocacy in the fall of 2014 looking for help with a protest against the Pathways to Prevention Workshop (P2P) at the National Institutes of Health (NIH). Despite being in constant pain and needing to lay in a zero gravity recliner, Tom organized on very short notice an awareness event, traveling 10+ hours to protest at the NIH, with himself, church and family members, including his wife and two young boys, in attendance. It was a very cold winter day. A cameraman from the documentary, “Canary in a Coalmine” stopped by to film. Continue reading
The MEadvocacy Advisory Committee is taking a well deserved break for the summer. See you in the fall.
As you may know, the general public, medical professionals and politicians are mostly unaware of the prevalence and severity of myalgic encephalomyelitis (ME) in the U.S. and around the world. A visual representation can have more impact than words or numbers, or as a wise person once said “A picture is worth a thousand words”. A visual map representing the thousands and thousands of ME patients in every nation, state, city and voting district can be used to show how many of a politician’s constituents are affected, and hopefully spur them to action on our behalf. Continue reading
Appropriations Submissions Each year the Senate and House appropriations committees take submissions for planning the federal budget and expenditures. This includes funding for federal disease research. This spring, MEadvocacy once again sent in submissions outlining the devastating nature of myalgic encephalomyelitis (ME) and the need for research. Continue reading
Guest blog by Maryann Spurgin, Ph.D. "An idea is always a generalization, and generalization is a property of thinking. To generalize means to think." ~ Georg Wilhelm Friedrich Hegel “As the biggest library if it is in disorder is not as useful as a small but well-arranged one, so you may accumulate a vast amount of knowledge but it will be of far less value than a much smaller amount if you have not thought it over for yourself.” ~Arthur Schopenhauer "Out-of-date theories are not in principle unscientific because they have been discarded." ~Thomas S. Kuhn, The Structure of Scientific Revolutions "We see the world in terms of our theories." ~Thomas S. Kuhn Note: I wrote this proposal in the late Fall of 2015 and in early 2016 as a work proposal (Circulatory Impairment in Myalgic Encephalomyelitis: A Work Proposal —by Maryann Spurgin, Ph.D. January 16, 2016 https://docs.google.com/document/d/1y_SoLHW8NaxBrI8bmBiY-ehBZfd3Ji7yttV50bG5qRY/mobilebasic?pli=1). In mid January I began sending it to medical schools, and in late January/early February, I sent an earlier, longer version to some privately funded research teams, including to Ron Davis. Very recently, on May 27, 2016, I sent it to the research team at NIH at the following email addresses: Continue reading
CFSAC Public Comment May 18, 2016 Eileen Holderman Good afternoon to the Advisory Committee Members and to all stakeholders listening. My name is Eileen Holderman - I'm an advocate for ME, GWI and other neuroimmune diseases. Recently, I served as consultant to MEadvocacy, an organization advocating on behalf of nearly 1 million American men, women and children suffering from Myalgic Encephalomyelitis (ME). Continue reading
Why We Need to Raise Awareness Disease sufferers have different ways they try to raise awareness of their plight. This is often done by distinct colored ribbons and assigned months when events and activities are geared toward raising awareness for that particular disease. Myalgic encephalomyelitis (ME) uses the color blue for the awareness ribbon and the month of May has been assigned as the month of awareness. All patients suffering from any illness have dire needs for attention, whether for funding for research or for proper care and treatment. ME patients, because of the history of neglect and malfeasance by the government health agencies, have the added responsibility to testify about their personal stories and about the dismal history of medical abuse. Continue reading
May Awareness May is awareness month for the related complex immunologic and neurologic diseases (CIND): ME, CFS, Lyme, GWI, FM and MCS. May 12 is the specific date chosen to raise awareness for these diseases, because it’s Florence Nightingale’s birthday. After her groundbreaking work in nursing, Nightingale became bedridden for decades from a mysterious disease similar to ME. This year, May12.org has developed an easy way to spread awareness across social media with a May awareness overlay for your Facebook, Twitter or other social media profile photo. Continue reading
Guest Blog submitted by the ME Global Chronicle staffMUPS (Medically Unexplained Physical Symptoms) This is a guest post by ME Global Chronicle, a bi-monthly international online magazine, covering news on myalgic encephalomyelitis from all over the world. They are currently featuring a petition to the Dutch Health Council calling for the replacement of panel members to a government advisory committee who have a psychogenic bias of the disease. Continue reading