Request to Sign Petition #PwME4ICC & Other News

Below is our latest email. If you didn't receive this information, please consider joining or updating your email information.   PETITION TO SIGN FOR ADOPTING ICC  A new change.org petition has just been posted demanding US government adopt the International Consensus Criteria (ICC) for diagnosing, research and treatment of ME patients. Hashtag for this petition is #PwME4ICC (People with ME for ICC). Continue reading

The 26th ME Awareness Day: Still Fighting Unscientific Claims

  “The highest mode of corruption is the abuse of power.” ― Auliq Ice MAY 12 AWARENESS DAY The late patient and staunch advocate, Thomas (Tom) Hennessy Jr, realized the need to have a dedicated day to raise awareness for the diseases he championed 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).  Continue reading

MEadvocacy's Comment To NINDS/CDC CDEs Draft & See What You Can Do

The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Common Data Elements (CDE) Working Group and the National Institute of Neurological Disorders and Stroke [NINDS]/Centers for Disease Control and Prevention (CDC) CDE Team released their draft version of the ME/CFS CDEs for public review on 12/15/2017.  Continue reading

Advocacy Lessons Learned from Martin Luther King, Jr. as We Honor Him

File:USMC-09611.jpg. (2017, September 15). Wikimedia Commons, the free media repository.   Guest editorial by Jerry Seidel, President May12.org*   Martin Luther King Jr. (MLK), Baptist minister and civil rights activist, never organized sit down talks with grand wizards of the Ku Klux Klan (KKK).  Continue reading

Testifying at CFSAC Dec 2017 and Looking for Changes in 2018

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) held meetings on Dec. 13 & 14, 2017. Videos and transcripts of the meeting can be found here. CFSAC provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Continue reading

CDC's Website Revision is No Reason for Celebration

   This blog was written in collaboration with Gabby Klein The Centers for Disease Control and Prevention (CDC) updated their website for ‘ME/CFS’ on July 3, 2017.  The revision was based on information provided by a stakeholders' working group and was decided upon by a steering committee of government people. The changes were based on the 2015 IOM Report which was sponsored and guided by the Health and Human Services (HHS). Continue reading

TruthCures Lobbies Washington, DC to Meet with Senate Judiciary Members

TruthCures.org Lobbying on June 5, 2017 FOR IMMEDIATE RELEASEWashington, D.C., June 5, 2017Representatives of TruthCures are lobbying June 5-9th and meeting with Senate Judiciary Committee Members to turn over evidence and demand a hearing. Continue reading

May 12, 2017 International Awareness Day- 25th Anniversary!

  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

CDC, You Need a Bigger Ear Horn

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 [1]) [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

Knocking Down NIH Bias

  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