Systemic Bias Continues at NIH

  See bottom of blog for updates.   The myalgic encephalomyelitis (ME) community became aware November 3, 2016 that the U.S. National Institute of Health’s (NIH) ME/CFS Interest Group had scheduled a lecture, “Chronic Fatigue Syndrome in Historical Perspective,” by Edward Shorter, Ph.D. to take place on November 9, 2016 (see here for original event).   This was discovered through Dr. Maureen Hanson’s tweet about the lecture to the community. Dr. Shorter is a professor of history and psychiatry who has been an open proponent of the misguided belief that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a somatoform condition. Shorter has written a book about psychosomatic disorders, From Paralysis to Fatigue -”a fascinating history of psychosomatic disorders shows how patients throughout the centuries have produced symptoms in tandem with the cultural shifts of the larger society. Newly popularized diseases such as "chronic fatigue syndrome" and "total allergy syndrome" are only the most recent examples of patients complaining of ailments that express the truths about the culture in which they live.”  In addition, he has written various articles and comments on articles which spew the same lies about the organic neuroimmune disease, ME. It is not surprising then, that ME patients and advocates became outraged at the fact that the NIH would choose a proponent of the psychosomatic view of the disease to lecture  NIH researchers at the NIH Clinical Center about the history of the neuro immune disease ME.  Patients and advocates immediately sent letters to the NIH ME/CFS representatives, expressing their shock and asking the NIH to cancel Shorter’s speaking engagement. The following is the reply from Dr. Koroshetz to those who wrote in to complain: Dear members of the ME/CFS community, I appreciate the concern of many in the ME/CFS community as expressed in Ms. Spotila’s blog post concerning the visit and lecture by a Professor of the History of Medicine at the NIH intramural research program. It is important to understand the NIH’s commitment to reduce the burden of illness for people suffering with any illness regardless of its cause or its manifestations. In fact the study of one condition not infrequently leads to clues to the treatment of another in totally unpredicted ways. The exchange of information and widely divergent scientific opinions followed by critical analysis is essential to moving any field forward. Investigators at NIH regularly invite individuals to conversations about their areas of interest. This inclusion in scientific conversation is not an endorsement. Rigorously collected data that enables causal inference is the foundation of science. This remains the foundation of the NIH, and as stated from the start the NIH intramural investigators will focus on post-infectious ME/CFS in order to closely examine the clinical and biological characteristics of the disorder and improve our understanding of its cause and progression. I hope that the ME/CFS community can endorse this scientific enterprise as we at NIH try to direct it to the problems faced by those who suffer with ME/CFS, both here at intramural research program and at universities and medical centers across the country. We know so little about the biological causes and nature of the disease that inclusivity of scientific thought will be critical to our success. At this point sadly we don’t know where the scientific enterprise will lead us, how long it will take, or from what area of research effective treatments will come. The Professor mentioned in your letter was initially incorrectly listed as part of the ME/CFS Special Interest Group, which was corrected. The speakers that have come to the ME/CFS investigators are listed on the website at (http://mecfs.ctss.nih.gov/sig.html) and include: June 15th, 2016: Anthony Komaroff, M.D.: An Overview of Chronic Fatigue Syndrome (ME/CFS) July 18th, 2016: Leonard Jason, Ph.D.: Diagnostic Challenges and Case Definitions for CFS and ME August 24th, 2016: Daniel Peterson, M.D.: CFS/ME: Perspectives from a Local Epidemic 1984-2016 September 21st, 2016: Staci Stevens, M.A. and Mark Van Ness, Ph.D.: Cardiopulmonary Exercise Testing in ME/CFS Sincerely yours, Walter J. Koroshetz, M.D. Director, National Institute of Neurological Disorders and Stroke On behalf of the Trans-NIH ME/CFS Working Group   So, basically, what we hear Dr. Koroshetz is saying: I hear your concern Your thoughts are not important enough to change my mind I think the belief that ME/CFS is somatoform constitutes a scientific enterprise We don't have evidence that ME/CFS is biological Science might lead us to the conclusion that it is just psychosomatic I hope you'll endorse my view NIH, subsequently removed the event announcement of Dr. Shorter’s lecture sometime during the night of Nov. 3, 2016 or morning of Nov. 4th CST. Here is link to the NIH event page as it appeared on November 4, 2016 8:02:52 PM UTC. To clarify, Koroshetz’ carefully worded his response attempted to side-step the complaint. He stated that Shorter was not part of the ME/CFS Special Interest Group and this would be corrected. The event announcement actually said that the ME/CFS Interest Group invited Shorter. It never said that he was part of the group. The event was announcing that Shorter's lecture was for NIH researchers, not that it was a meeting of Shorter and the group.Dr. Koroshetz’ reply is not surprising.  It is just more of the same dismissing the voice of the patient community and repudiation of the biological nature of the disease.  After all, this is the same NIH that hires and continues to employ investigators like Drs. Brian Walitt, Fred Gill, and Leorey Saligan.   These NIH investigators all spew the same unscientific theory about ME patients - portraying that it is just the patients’ thoughts that make them think they are sick, that they are catastrophizing and attention seekers. These investigators’ hypothesis that psychosomatic diseases have an altering effect on biological processes is suspiciously similar to Shorter’s university bio webpage quote, “Melancholia as a distinctive illness in its own right, with characteristic biological markers.” This is the same NIH that worked with the CDC to re-write the origin of the disease. Step 1) Take a name (ME) and twist it (CFS) to imply it is not a disease but a symptom of fatigue rather than an acquired disease with immune abnormalities as seen in the Lake Tahoe outbreak.  (See Osler’s Web by Hillary Johnson, and our ME science resource page). Step 2) Define the disease with overly broad and faulty criteria so the psychologists/psychiatrists can now diagnose those with depression and somatoform disorders as CFS. NIH’s Dr. Straus and CDC’s Dr. Fukuda purposefully created the currently used Fukuda criteria so that those with somatoform disorders would fit under the CFS Fukuda criteria and be diagnosed as CFS. Thus muddying the cohort even further and resulting in confusing and unreliable research under the name CFS. More alarmingly, these investigators were selected by NIH to work on the NIH ME/CFS Clinical Study.  Dr. Walitt has been given the distinguished position of lead investigator! (see MEadvocacy.org's blog -NIH Sidesteps Critical Problems with the ME/CFS Study for details).  NIH director, Dr. Francis Collins, and Dr. Walter Koroshetz  disregarded the protest by the ME patient and advocate community via petitions and letters demanding that these problematic investigators be removed from the NIH ME/CFS Clinical Study. Additionally, the demand by ME patients and advocates to have input into the NIH study from the planning stage throughout all the steps of study have fallen on deaf ears as well. (The creation of small patient focus groups on specific subjects does not qualify for ongoing patient input from start to finish.) The time has come for the ME community to face the facts of the dangers of the current NIH's leadership understanding and beliefs about ME.  This is also why as outlined in MEadvocacy's blog, it is crucial to use the international experts' criteria [ICC]* to distinguish the neuro-immune disease ME, as opposed to the "fatiguing condition" as described by the other criteria. Whereas, we do agree that NIH's invitation to Dr. Shorter to present a lecture at the NIH is inappropriate, damaging and should be canceled, it pales against the harm to ME patients from the ongoing employment of problematic investigators at the NIH and their assignment to the NIH ME/CFS Clinical Study. It is clear that without congressional intervention this malfeasance will continue unhindered. The ME community needs to testify to congress about this ongoing malfeasance and medical harm to their constituents.  A congressional hearing may be the only way our voices will get heard. WHAT YOU CAN DO: Contact your members of congress and tell them: NIH continues to ignore ME patients’ pleas for biomedical research into disease We need funding of at least $250 million per year for research into ME Consider a congressional hearing to find out why ME and other similar patient communities like Fibromyalgia, Gulf War Illness, and Chronic Lyme patients are being mistreated Sign petition at Change.org: “Calling for a Congressional investigation of the CDC, IDSA and ALDF” Volunteer for MEadvocacy by contacting us at MEadvocacyorg@gmail.com   Special thanks to independent advocate and MEadvocacy volunteer, Gabby Klein, for co-writing this blog with the advisory committee. Blog mentioned in Dr. Koroshetz's response: An Open Letter to Dr. Koroshetz by Jennie Spotila     Blog Post-Publication Additions: * In addition to the ICC criteria, expert advocates also support use of Ramsay’s ME definition due to its development based on patients in epidemic cohorts. (Added as if as of Nov. 8, 2016)Here are additional patient/advocate letters in regards to protesting Dr. Shorter’s lecture at the NIH Clinical Center:MEadvocacy.org Advisory Committee & patient advocate Gabby Klein Letter to Koroshetz: http://www.meadvocacy.org/our_response_to_dr_koroshetz_refusal_to_cancel_lecture_by_me_disease_denier  (Added as if as of Nov. 8, 2016)Deborah Waroff’s Letters: Deborah Waroff’s Letter to Koroshetz https://www.facebook.com/deborah.waroff/posts/10154421575728941 Deborah Waroff’s Letter to Nath https://www.facebook.com/groups/1471389426411574/1791756414374872/?notif_t=group_activity&notif_id=1478544573418660 (Added as if as of Nov. 8, 2016)Nancy Blake’s Letter to Koroshetz: Nancy Blake’s Letter to Koroshetz https://www.facebook.com/nancy.blake.9803/posts/10209696691087077 (Added as if as of Nov. 8, 2016)Tina Tidmore’s Letter to Koroshetz: http://mecfsfromme.blogspot.ca/2016/11/its-not-scandal-its-cover-up.html?m=1 (Added as if as of Nov. 8, 2016)

Our Response to Dr. Koroshetz' Refusal to Cancel Lecture by ME Disease Denier

  This letter is in reply to Dr. Koroshetz letter of Nov 4, 2016 to the ME/CFS community refusing to cancel the invitation by NIH of a lecture to NIH investigators titled: “Chronic fatigue Syndrome in Historical Perspective”. Dear Dr. Koroshetz, Thank you for your time in replying to the ME/CFS community regarding our objection to NIH's invitation to Dr. Edward Shorter to lecture on "a historical perspective on CFS". In your letter, you ask the community to endorse "the scientific enterprise" of Dr. Shorter's viewpoint about ME/CFS (that it is a somatoform condition).  You assert: "We know so little about the biological causes and nature of the disease that inclusivity of scientific thought will be critical to our success." Let us explain why not only will the community refuse to endorse Dr. Shorter as an educator about ME/CFS but will object to anyone at NIH who profess the same lies about a disease that has an infectious onset with evidence (over 5,000 published papers) of biological, neurological, muscle, immune, ATP, metabolomic, mitochondrial, gut and autonomic abnormalities. The role of any medical doctor is to "first do no harm".  The lazy dogma that ME/CFS is a somatoform condition has harmed millions of patients for the past thirty years. This corruption started following the Lake Tahoe outbreak - when the CDC dismissed biological evidence found there and started a spiral of steps in order to cover-up the real evidence. This whitewashing was accomplished with the machination of a trivial "fatigue" name (chronic fatigue syndrome) and government constructed overly broad and false criteria. This burial in the sand of the real facts and evidence of the biological disease myalgic encephalomyelitis still continues today at the CDC and the NIH with the following:   Refusal to adopt and exclusively use the authentic name for the disease - myalgic encephalomyelitis (ME) Rejection of the experts' criteria for the disease (CCC, ICC, Ramsay's) in favor of the government constructed faulty criteria (Oxford, Fukuda, IOM) Disdain toward any recommendation for input in the government process regarding ME/CFS by the patient and advocate community (ignoring CFSAC recommendations; refusing input from start to end in the NIH ME/CFS Clinical Study; preserving faulty information on government websites, educational materials and continuing professional education and many more requests including the current Dr. Shorter issue) Employing NIH investigators with the same false illness beliefs about ME/CFS as Dr. Shorter's (somatoform, catastrophizing) and appointing them to the current NIH ME/CFS Clinical Study while ignoring the outcry from the patient and advocate community (Drs. Walitt,  Gill and Saligan - see blog NIH Sidesteps Critical problems with the ME/CFS Study). Suppressing adequate and equitable NIH funding for the past 30 years resulting in the prolonged suffering and early deaths of millions of ME patients  ($250 million a year is the minimum amount ME/CFS should be getting - equitably, it should be $2 billion a year) It is evident that this malfeasance has been and continues to be the pattern with CDC and NIH.  It is obviously a profitable enterprise for NIH to be able to "fit" as many conditions as possible under the so-called “Conversion Disorder” (Functional Neurological Symptom Disorder) and “Somatic Symptom Disorder” (SSD) diagnostic codes. This would absolve NIH from further funding biological studies for these diseases. Your decision that Shorter could add value to NIH's understanding of ME/CFS is not only unscientific and self-serving but, an insult and dangerous to every ME patient.   There is historical evidence of many harms to humans performed in the name of "scientific advancement".  On which side will NIH stand when the day of reckoning will come regarding the harm perpetrated by the US government health agencies toward the ME patient community?  Sincerely,   MEadvocacy.org Advisory Committee: Colleen Steckel, Joni Comstock, and Tracey Smith Relatingtome.net - patient advocate and blogger: Gabby Klein  

THE INTERNATIONAL CONSENSUS CRITERIA What is it? Do I fit the criteria?

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.

Tom Jarrett, ME Patient Advocate, Passes

  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

Gone Fishin'

The MEadvocacy Advisory Committee is taking a well deserved break for the summer. See you in the fall.

Diseasemaps.org - Let's Put ME on the Map!

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

MEadvocacy Reaches Members of Congress

    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

Circulatory Impairment in Myalgic Encephalomyelitis: A Preliminary Thesis

  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

Eileen Holderman CFSAC Public Comment About NIH Study

  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 May Awareness Day - Global Protest and More

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