History of May 12 International Awareness Day This year marks the 25th anniversary since the late patient and staunch advocate, Thomas (Tom) Hennessy Jr, designated May 12th as the international awareness day for myalgic encephalomyelitis (ME) and other complex immunological & neurological diseases (CIND) - such as fibromyalgia (FM), Gulf War illness (GWI), multiple chemical sensitivity (MCS), and chronic Lyme disease (CLD). Tom chose May 12th to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale contracted a paralyzing CIND-like illness and became chronically ill. She spent the last 50 years of her life virtually bedridden, and despite being severely debilitated, started the world’s first school of nursing. The Need to Raise Awareness for Diseases Advocates for diseases have the challenge of raising awareness about the plight of their patients in order to educate the public and to raise much-needed funds for research and aid. Advocates for misunderstood and neglected diseases, such as the CIND diseases, have an added urgency to educate because of all the obfuscation and government health agency malfeasance impeding proper diagnoses, treatment, and a possible cure. FIBROMYALGIA (FM) Fibromyalgia is characterized by chronic widespread pain and a heightened pain response to pressure. Due to the pharmaceutical companies’ advertising drugs for fibromyalgia, this illness has gained wide recognition. Unfortunately, due to lack of proper medical education about these diseases many patients who have ME or Lyme have been misdiagnosed with fibromyalgia leading to inappropriate and harmful treatment recommendations - such as drugs with adverse reactions and exercise which is contraindicated in patients who have ME. GULF WAR ILLNESS (GWI) Symptoms are similar to myalgic encephalomyelitis and chronic Lyme disease, leaving many veterans too ill to work. GWI patients have too often been ignored by the VA despite evidence of the serious biological nature of this illness. CHRONIC LYME DISEASE (CLD) Lyme disease or neuroborreliosis has left millions of people to suffer in isolation with an AIDS-like illness similar to post-sepsis. Victims are frequently misdiagnosed or denied any diagnosis at all. The only CDC-sanctioned Lyme disease testing is ANTIBODY based. People whose immune systems are destroyed (immunosuppression) don't produce the required antibodies to get a positive test. The “Dearborn” case definition was put in place in 1994, when the now-failed Lyme vaccine, LYMErix was in the trial stage and it became known that the antigen used (a highly acylated lipoprotein, TLR2/1 agonist; triacylated, that's also shed by the organisms that cause Lyme disease) was causing adverse events that looked exactly like what we know as "chronic Lyme disease" or "post-treatment Lyme disease syndrome”. The one priority needed in order to open up the floodgates so all Lyme victims may receive proper recognition, their disability payments, and correct treatment: TruthCures is demanding a prosecution. MULTIPLE CHEMICAL SENSITIVITY (MCS) Many patients with these complex immunological & neurological diseases also suffer from MCS which is a debilitating disease leaving people unable to participate in society due to severe reactions to environmental toxins. The Specific Challenge of Raising Awareness for ME There are an estimated one million men, women, and children in the U.S. suffering from the complex neuroimmune disease ME. The majority of patients are so adversely affected as to render them disabled from any work with 25% totally bedbound! The hallmark symptom for ME is Post-Exertional Neuroimmune Exhaustion (PENE) often called Post-Exertional Malaise (PEM). Because of this symptom, activity exacerbates the illness.The reason why ME patients have been suffering without any FDA approved treatments for decades - some dying young, others bedbound or disabled from work - is due to the negligence and malfeasance perpetrated by the US government health agencies. Facts that have caused the sad state of affairs of ME: CDC’s refusing the input of ME stakeholders to officially adopt the proper, historical name, myalgic encephalomyelitis and the repeated attempts to rename the disease with marginalizing names such as chronic fatigue syndrome (CFS), systemic exertion intolerance disease (SEID), and the confusing combination of ME/CFS. CDC’s refusing the voice of ME stakeholders to officially adopt criteria created by ME experts such as the International Consensus Criteria (ICC) or Canadian Consensus Criteria (CCC) while persistently attempting to force overly inclusive criteria created by the government such as the Fukuda Criteria and the IOM criteria. (The IOM criteria have been shown to be as overly inclusive and vague as the Fukuda - read the paper by Dr. Leonard Jason and the paper by Frank Twisk!) CDC’s continued misinformation and miseducation about the disease on their website as well as in their continuing medical education. The CDC has stubbornly refused to heed advocates recommendations to make all the proper changes including to remove CBT/GET and despite efforts by many advocates CBT/GET are still recommended by the CDC today - disregarding all the scientifically proven harm it causes ME patients. HHS’ refusal to properly fund ME. Although its prevalence is higher than many other diseases, NIH funding for the disease is at the bottom of the list (247th out of 274). Additionally, studies looking at the quality of life of ME patients have shown to be lower when compared to other debilitating diseases like RA, cancers, and diabetes. There are currently over 6,000 medical papers on ME with important findings, yet investigators lack adequate NIH funding for the much needed large-scale replications. The challenge in raising awareness for ME is the need to make the public aware of this government malfeasance. It is not enough to just educate about how horrible and disabling the disease is. We need to reveal the ongoing government malfeasance and shame HHS into an apology and positive action! How to Raise Awareness We need to raise public awareness about the malfeasance of HHS with regard to their negligence, purposeful distortion of the facts, and gross underfunding of ME and all complex immunological & neurological diseases. This can be accomplished by: Calling or writing to your U.S. congressional representatives explaining this malfeasance that has been going on for decades and asking them to speak out for you and demand that CDC adopt the name myalgic encephalomyelitis and adopt the ICC or CCC criteria as well as that NIH fund the disease at $250 million a year. Writing or sharing blogs about these facts (the government does pay attention to blogs!). Tweeting links to this and other blogs to Francis Collins - @NIHdirector, Walter Koroshetz - @NINDSdirector, CDC - @CDCgov, Secretary of HHS, Tom Price - @SecPriceMD MEadvocacy is a project of May12.org, whose mission is to “raise global awareness and education for Complex Immunological and Neurological Diseases (CIND).” MEadvocacy continues our mission to get the name, myalgic encephalomyelitis, recognized in the U.S. as it has appeared and been coded for decades at the World Health Organization (WHO). Things You can do for May 12: Use a Profile Overlay: Change your social media profile page with a May awareness overlay for ME, FM, GWI, CLD, or MCS. See the easy instructions here. Ask local and state officials to make a proclamation. See this FB page for samples https://www.facebook.com/groups/184652382049781/?ref=br_rs Educate by sharing these easy to understand pages from resource page at www.MEadvocacy.org - Simple Facts About ME and Brief History of ME Join the Thunderclap:https://www.thunderclap.it/projects/54427-it-s-may12th-awareness-day?locale=en Light up the night by asking local venues to light up buildings and get light bulbs in the color for the disease you want to raise awareness for and display them for the month of May -https://www.facebook.com/events/1091121300980705/ May12.org recommends supporting the lobbying efforts and protest at the USDOJ by TruthCures at https://www.truthcures.org/activism - June 5-9, 2017 in Washington, D.C. See list of all events for May 12th International Awareness Day document here and Facebook page here
By Frederick Dekkers (mechanical reproduction of 2D image) [Public domain], via Wikimedia Commons Letter Confronting CDC's Continued Deaf Ear to the ME Community Since the inception of MEadvocacy.org, we have fought against the systemic bias of demeaning patients and fraudulently misrepresenting myalgic encephalomyelitis (ME) at Health and Human Services (HHS), National Institute of Health (NIH) and Center for Disease Control (CDC). The day before Thanksgiving, we were approached by an individual advocate, asking us to sign onto a completed letter which other advocacy organizations and advocates had already signed. The letter was in condemnation of CDC’s continued use of scientifically indefensible recommendations for cognitive behavioral therapy (CBT) and graded exercise therapy (GET) on their website and educational materials. Additionally, the letter addressed the website containing unfounded statements about the nature of CFS being psychogenic as well as requesting removal of these references from the website. Although, we had some reservations about sections of the letter such as the mention of the NAM (previously known as the IOM) report “Beyond ME/CFS: Redefining an Illness”, we have chosen to sign onto this letter because we agree with its core message of holding CDC accountable for the accuracy of all the information that appears on their website and on all their educational materials. We do not support using NAM definition in place of the experts ICC primer. We are confident that the removal of the offending materials on the CDC website concerning CBT and GET treatments and psychogenic etiology, will have an immediate positive impact on the lives of all ME patients - from mild to severe , since it will aid in relieving suffering, improving conditions for patients, and reversing the continued disbelief in the medical community of the biomedical nature of this disease. These achievements fit into MEadvocacy’s mission. Important Notes Not All Criteria are the Same Sometimes ME, as described by the ICC or Ramsay definitions, is inaccurately referenced as an alternate name to CFS (Fukuda criteria) and is found on the CDC website under CFS. The disease, myalgic encephalomyelitis, is not included on CDC’s list of diseases and using that term in the search engine box at the CDC website reroutes to CFS materials. Using the ICC Primer We would like to highlight that the letter asks that the ICC primer is also included in the educational materials/website. If you aren’t familiar with the International Consensus Criteria (ICC) please see our blog: THE INTERNATIONAL CONSENSUS CRITERIA What is it? Do I fit the criteria? Past Requests to Address CBT and GET CDC Ignores CFSAC Since 2012, the Chronic Fatigue Syndrome Advisory Committee (CFSAC), through the efforts of their CDC working group, has recommended many specific changes to the CDC website and their educational materials including the removal of psychogenic references, CBT, and GET. The CDC has ignored the very committee that Dr. Unger herself is a member of.CDC Ignores Advocates A year ago, November 19, 2015, MEadvocacy published the blog Tell HHS to Remove Flawed PACE Recommendations from Clinical Guidelines about our signing a letter along with other advocacy organizations calling for investigation into the flawed PACE trial and asked that the CDC remove all recommendations and risk and prognosis statements based on PACE and other Oxford studies from its current and planned medical education material. The reaction from the CDC was to ignore the request and continue with more of the same neglect of the ME patient population. The Agency for Healthcare Research and Quality (AHRQ) just downgraded recommendations for CBT and GET in the AHRQ Addendum once Oxford studies were excluded. More History with CDC In January 2016, the CDC approached MEadvocacy to join a working group to provide stakeholder input on CDC’s educational and informational materials which includes the CDC website. After receiving confirmation from Dr. Unger that the CDC work group’s scope was to advise on incorporating only NAM diagnostic criteria and that the CDC would not revise treatments, MEadvocacy opted out of the working group because we do not condone the use of overly broad criteria from the NAM report. Read these blogs to learn more: MEadvocacy Opts Out of CDC’s Technical Development Workgroup and Further Correspondence with Dr. Unger at CDC from February 03, 2016. Any bets on if CDC removes CBT and GET in their next website update expected sometime in 2017? By Podknox, User:AlanM1 (Cropped from ) [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons How you can help counter the spread of the unscientific psychogenic illness model of ME: Join MEadvocacy in supporting the UK ME community’s project Opposing MEGA (OMEGA) to counter efforts of researchers that promote the psychogenic bio-psycho-social model of ME.: “A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'. The BPS illness model of ME/CFS assumes that biological abnormalities and physical symptoms are caused or maintained by psychological or social problems and may be treated by changing the patient's thoughts and behaviours.” -- excerpt from petition Join Opposing MEGA’s FB page. Sign OMEGA petition
MEadvocacy.org has published two blogs regarding NIH’s invitation to Edward Shorter to speak at their NIH Clinical Center on November 9, 2016. Researchers, advocates and patients were opposed and fought this presentation because it would be used as propaganda to validate the unscientific psychosomatic view of myalgic encephalomyelitis (ME). See our blogs for more information: Systemic Bias Continues at NIH and Our Response to Dr. Koroshetz' Refusal to Cancel Lecture by ME Disease Denier. Here is what Dr. Janet Dafoe, a clinical psychologist, shared on her FB post about her spouse Dr. Ron Davis, a world-renowned geneticist and ME/CFS researcher: Despite the many letters to NINDS Director Walter Koroshetz demanding the cancellation of this presentation, it took place as scheduled with an audience that included personnel heavily involved in the ME clinical study. Shorter was actually introduced by the lead investigator of the clinical study, Dr. Brian Walitt.Dr. Dafoe also shared on Twitter that Dr. Davis was advocating for a congressional investigation if Shorter’s lecture was not canceled. It is a weak advocacy method to keep insisting on a “seat at the table” with the government when this “coveted seat” only serves to advance the government’s agenda. At times like this, when our demands are met by a brick wall, our advocacy methods need to take a new and different course. We can then use our efforts to fight from the “outside” and seek collaborations with outside forces such as our congressional representatives. Falling for a false sense of inclusion is a dangerous course to take and will retain the status quo of NIH bias. When the US government puts up another brick wall, we need to get out our wrecking ball and pickaxes and tear it down. For deeper insight into the NIH bias, please read Gabby Klein’s blog at Relating to ME: Promises, Promises: Thirty Years of NIH Broken Promises
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¬if_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)
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
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