REPORT OF THE NANDS COUNCIL WORKING GROUP FOR ME/CFS RESEARCH USA Sept 2019
We will not go quietly into the night. We will not give in without a fight.
We will go on. Our voices are strong. We are people with ME for the ICC #PwME4ICC
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DIAGNOSING MYALGIC ENCEPHALOMYELITIS
While the International Consensus Primer has testing that can rule out other diseases and is a good criteria to help doctors and patients be confident in diagnosis, a definitive biomarker that any doctor can use would resolve a great deal of the issues we all have with being diagnosed and treated.
This study only had 10 participants so we need a much bigger study but a few things about this look promising.
ME is not SEID
“The US government health agencies and some organizations who purport to represent people with ME (pwME) are deceiving this community by purposefully conflating names and criteria for myalgic encephalomyelitis (ME), and the government constructs chronic fatigue syndrome (CFS) and systemic exertion intolerance disease (SEID). These organizations are complicit with carrying out the government’s nefarious actions in burying a severe neurological disease, ME, which has killed and rendered hundreds of thousands of Americans severely disabled for many decades.”
A meeting took place on September 11 and 12, 2018 by the ICD-10 Coordination and Maintenance Committee. On September 12, Donna Pickett discussed a proposal for “chronic fatigue syndrome”. Dr. Lily Chu of the IACFS/ME called in with her approval of NCHS/CDC’s proposal for revised classifications for CFS and ME and a new classification for SEID.
The proposal from the National Center for Health Statistics NCHS/CDC is in the chart below taken from CDC’s packet for the meeting.
USA - September 2018 - Once again ME-ICC has been left out of the equation
NANDS Council Working Group for ME/CFS Research, and Advisory council (taking place of CFSAC?) https://www.ninds.nih.gov/…/Advisory-C…/ME-CFS-Working-Group
Steven Roberds, Ph.D., Tuberous Sclerosis Alliance, National Advisory Neurological Disorders and Stroke Council member
Silver Spring, MD
Armin Alaedini, Ph.D. Columbia University, New York, NY
Lucinda (Cindy) Bateman, M.D., Bateman Horne Center, Salt Lake City, UT
Jennifer Brea, ME Action, Los Angeles, CA
Dane Cook, Ph.D., University of Wisconsin, Madison, WI
Carol Head, Solve ME/CFS Initiative, Los Angeles, CA
Anthony (Tony) Komaroff, M.D., Brigham & Women’s Hospital, Boston, MA
Amrit Shahzad, MBBS, MBA, University of California, San Diego, San Diego, CA
Steven Schutzer, M.D., Rutgers New Jersey Medical School, Newark, NJ
EX OFFICIO MEMBERS
Elizabeth (Beth) Unger, M.D., Ph.D., Center for Disease Control and Prevention, Atlanta, GA
Joseph Breen, Ph.D., NIH/NIAID, Bethesda, MD
Vicky Whittemore, Ph.D., NIH/NINDS, Bethesda, MD
Andrew Breeden, Ph.D., NIH/NINDS, Bethesda, MD
PETITION AGAINST CDC CONTRACT WITH EPC - BACKGROUND INFORMATION
I agree that this contract is NOT in the best interest of patients as history has shown CDC and EPC are not reliable to put together medical materials that reflect the knowledge of the ME experts who created the International Consensus Criteria.
Clarification: I don’t see this as a mistake by the CDC and I’m disappointed in advocacy that frames their behavior as an “oops”. There is a systemic bias at HHS to maintain status quo of NOT properly diagnosing or treating patients who have ME. I think each person will have to decide if the EPC petition is worth signing in order to prevent harm to patients. UNTIL HHS is willing to meet with ALL the stake holders who have ME, including with MEadvocacy.org
I do not expect there to be a change for patients on the frontlines dealing with doctors who still think this is a disease treatable by behavior modification. There is a hypocrisy for anyone who promotes the IOM and rejects this contract with EPC. The same rules apply. IOM report is as flawed as the EPC report.
CDC USA SEID Propaganda last updated June 2018
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that
affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems.
ME/CFS may get worse after people with the illness try to do as much as they want or need to do.
This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness.
According to an Institute of Medicine (IOM) report published in 2015, an estimated 836,000 to 2.5 million Americans suffer from ME/CFS, but most of them have not been diagnosed.
#PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC
We are international medical practitioners and researchers in the field of myalgic encephalomyelitis (ME), ME advocates, patients and their supporters. We are located in the US and in other countries that are affected by US health policy. We call on the US government health agencies to accurately name, define, fund and represent the distinct biomedical disease ME which has been recognized by the World Health Organization (WHO) since 1969 as a neurological disease with the ICD code G93.3 and has been well-defined by the 2011 International Consensus Criteria (ICC). Since October 2015, the US ICD-10-CM classifies ME with the same neurological code, G93.3, as the WHO ICD.
A lawsuit filed July 9th, 2018, by ICAN (Informed Consent Action Network) against the Department of Health and Human Services reveals that as a condition of being granted immunity from prosecution in the event of vaccine injury, by the law passed 1986, the Department was required to carry out, and report on, vaccine safety studies every 2 years.
It wasn't done. Not once. In 32 years.
ORLANDO, Fla., June 27, 2018 (GLOBE NEWSWIRE)
Hemispherx Biopharma, Inc. (NYSE American:HEB) has announced the immediate expansion of its Treatment Protocol/Expanded Access Programs for ME/CFS in the United States, known as AMP-511, to new enrollees for the first time in more than a year.
This opportunity to expand the scope of AMP-511 is based on the successful completion of the first phase of its Ampligen manufacturing initiative producing sufficient quantities of Ampligen to support new enrollees in this FDA-approved program.
Additional enrollees will be added as supplies of Ampligen expand with the successful fill and finish of additional commercial-sized lots similar to the 8,500 vials just released for human use. However, due to the nature of the limitations in such FDA-approved programs, the number of enrollees will always be limited."
Encephalomyelitis - see also Encephalitis G04.90
Acute Disseminated G04.00
Post immunization G04.02
Post infectious G04.01
Acute Necrotizing Hemorrhagic G04.30Post Immunization G04.32
Post Infectious G04.31
Specified NEC G04.39
Benign Myalgic G93.3
In diseases classified elsewhere G05.3
Myalgic Benign G93.3
Post Chickenpox B01.11
Post Infectious NEC G04.01
CFSAC MEETING JUNE 20-21 INFORMATION FROM EMAIL RECEIVED:
Via: Jerrold Spinhirne.
The Statement of Work part of the IOM contract specified a single set diagnostic criteria was to be developed for both ME, CFS, and all other terms in use for "this illness." Separating out ME from this agglomeration called "ME/CFS" was NOT an option.
From the Statement of Work:
"Under a task order against the NIH umbrella contract, the Institute of Medicine (IOM) will:
Conduct a study to identify the evidence for various diagnostic clinical criteria of ME/CFS using a process with stakeholder input, including practicing clinicians and patients;
Develop evidence-based clinical diagnostic criteria for ME/CFS for use by clinicians, using a consensus-building methodology;
Recommend whether new terminology for ME/CFS should be adopted;
Develop an outreach strategy to disseminate the definition nationwide to health professionals."
"ME/CFS" is defined in the IOM contract as:
"For the purposes of this document ME/CFS shall be used to refer to Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Neuroendocrine Immune Disorder, and other terminologies in use for this illness."
In order to fulfill this contract, the panel chosen by the IOM, had to write a single set of diagnostic criteria that could not differentiate between ME and CFS.
Writing separate new criteria for CFS and simply endorsing the existing IC diagnostic criteria for ME, or writing new criteria for ME only, would not have fulfilled the contract, and the IOM could be refused payment for breach of contract. The result had to be a one-size-fits-all set of diagnostic criteria so broad as to be meaningless.
The process was rigged from the start by duplicitous HHS bureaucrats who did not want to see ME recognized as a separate disease. No ethical professional should have accepted working within these constraints by agreeing to serve on the panel.
However, the IOM panel chosen exceeded all expectations by not only writing overly inclusive criteria that identified no clinical entity whatsoever, but by removing all exclusions allowed psychiatric disorders, such as clinical depression, to be diagnosed as "ME/CFS," or "SEID," as the panel wanted to call their misbegotten creation.
I have lost all respect for any professional agreeing to serve on the rigged IOM panel or to act as "independent" reviewers to whitewash this shameful piece of flimflammery.
Below is the link to the Federal Register notice announcing the upcoming CFSAC meeting June 20-21, 2018.
Please note we are still accepting requests for public comments through Wednesday, June 13. The agenda has been posted on the CFSAC website. We look forward to your public comments. Thank you.
The CFSAC Support Team:
Sign up for the CFSAC listserv to receive the latest updates about
Jerrold Spinhirne posted this (May 2018) and it makes a lot of sense.
The authors of the ICC were careful to require a causally related cluster of symptoms to define a distinct disease wth a common etiology. As general considerations for the diagnosis of ME the authors wrote:
"Determine whether symptom cluster patterns are congruent with those expected from dysfunction of an underlying causal system."
"Symptoms interact dynamically within a stable cluster because they share the same deep causal roots. Patients’ contextual observations are essential in determining the expression of interaction of symptom patterns and severity of their impact."
Diagnosis of a medical disease can never be done by questionnaire alone. It requires the clinical judgment of an experienced medical practitioner using an accurate set of diagnostic guidelines.
The problem with diagnostic criteria such as those based on the Fukuda CFS definition or the IOM report is that they create a mixed group of patients whose symptoms are unlikely to have a common cause, or could ever be identified by an elusive common "biomarker." A biomarker for these diverse groups of conditions would have to be so general that it could be found in patients not meeting the criteria also.
Research on subjects selected by Fukuda has repeatedly shown that the group is "heterogeneous" without any likely common etiology because the 163 combinations of symptoms allowed by Fukuda have no causal relationship.
The even more heterogeneous group of patients selected by the IOM criteria could never be meaningfully researched. A group formed of patients experiencing similar symptoms induced by diverse medical, behavioral, and psychiatric conditions simply cannot ever be a useful entity for research.
If the broad IOM criteria are made more specific for research purposes, the results of such research would have no application to the diverse group of patients diagnosed with the IOM criteria. The IOM criteria create a scientific dead end. It's pointless to do research that can't be applied or replicated.
The IC criteria were developed for both research and diagnosis. Research using the ICC could be immediately applied to the group diagnosed with ME. Instead of always inconclusive "one-off" studies going in circles, research using the ICC would be progressive. Studies could be replicated and built upon. Clinical trials could be done on a homogeneous group of subjects with meaningful results which could be applied to patients diagnosed with the same disease.
Isn't this what everyone wants – useful research and development of better techniques for diagnosis, leading to advances in the recognition and medical treatment of a severely disabling disease? Continuing to allow ME to be combined with unrelated fatiguing disorders with no possible common cause means continuing to travel down a 30-year road to nowhere. If it is not clear what one is searching for, how can it be known when it is found?
Meeting of the Chronic Fatigue Syndrome Advisory Committee
As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services (HHS) is hereby giving notice that a webinar meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will take place and open to the public to listen in via a toll free number. The CFSAC Webinar will be held on Wednesday, June 20th, 2018, from 9AM until 5PM and on Thursday, June 21st, 2018 from 9AM to 5PM (EST)
BEARING THIS IN MIND: MASS CFIDS STATES THIS on their website. AS OF MAY 2018.
The best current methods for diagnosing ME or CFS in adults—in line with the nervous system codes are:
1) the 2003 ME/CFS Canadian case definition/diagnostic criteria;
2) the 2011 ME International Consensus case definition/diagnostic criteria.
In children, the similar ME/CFS diagnostic criteria are:
1) the 2006 ME/CFS Pediatric case definition/diagnostic criteria;
2) the 2008 ME/CFS Pediatric case definition/diagnostic criteria.
Links to the different case/definition criteria are provided under More Information.
There is a difference between ME & CFS. ME is a post viral or infection but CFS doesn’t start with a virus. It’s usually caused by an underlying physical health issue.
Under the American ICD-10-CM code CFS will remain at least partially classified under: "Malaise and fatigue" in the Chapter: "Symptoms, signs, and abnormal clinical and laboratory findings, not elsewhere classified." This vague and uncertain classification is detrimental to CFS patients, since it may encourage physicians and insurance companies to misdiagnose and classify the illness as a psychiatric, and not a physical disorder.
However, the illnesses Postviral fatigue syndrome and benign Myalgic Encephalomyelitis will be classified under "Other disorders of the brain", in the Chapter: "Diseases of the Nervous System". This nervous system and viral classification for ME is not especially well-known to either physicians or patients. Yet the knowledgeable physician can use this coding to classify ME thereby enabling his/her patients to receive proper diagnosis, treatment, and disability benefits.
Diagnostic Codings in the new U.S. Code (ICD-10-CM)
As already mentioned, Chronic Fatigue Syndrome, the name most used to identify the illness, will be placed after October 1, 2014 in the vague "orphan" category: Chapter 18, "Symptoms, signs, and abnormal clinical and laboratory findings, not elsewhere classified" (R00-R99). The R53 subsection, in which CFS is placed, is titled "Malaise and Fatigue". CFS is specifically coded as R53.82, "Chronic Fatigue Syndrome, unspecified> Chronic Fatigue Syndrome (NOS)" [Not otherwise specified].
However, less well known by physicians is the placement both in the the new, revised code ICD-10-CM of (b)ME and Postviral Fatigue Syndrome (PVFS) under Diseases of the Nervous System. In the ICD-10-CM, (b)ME and PVFS will be coded in Chapter 6 "Diseases of the Nervous System", in the subcategory G93 "Other Disorders of the Brain". G93.3 is the actual code for (b)ME and PVFS.
In the current ICD-10-CM, ME is classified as a nervous/organ system disease in Chapter 6, "Diseases of the Nervous System and Sense Organs" (320-389), under subheading 320-326 "Inflammatory Diseases of the Central Nervous System". The Tabular Listing gives the specific code as 323.9: "Unspecified cause of encephalitis, myelitis, and encephalomyelitis." The associated Index document lists "Encephalomyelitis (chronic) (granulomatous) (hemorrhagic necrotizing, acute) (myalgic, benign) (see also Encephalomyelitis)" also coded as 323.9.
NATIONAL ALLIANCE FOR MYALGIC ENCEPHALOMYELITIS SAYS THIS on their Website (AS OF MAY 2018.)
Important note! Emphasized in the conclusion to the ICC: "Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome. These guidelines are designed specifically for use by the primary care physician in the hope of improving rapid diagnosis and treatment by first-line medical care providers."
The Forward in the 2012 ICC Physician's Primer (page ii) also touches upon the importance of differential diagnosis.
According to a CDC ICD rep [July 2006, directly to this editor], "M.E. has always been indexed to code 323.9. [See ICD Codes UPDATE below] That is the code number that patients should be assigned." Doctors, patients and disability attorneys in the ME and CFS community have all had more positive experiences in the social, legal and medical aspects of this disease by bypassing the bias of the CFS label. The proper diagnosis and code also translate to more accurate prevalence rates that aid researchers in their studies of this disease. (See World Health Organization [WHO], International Classification of Diseases [ICD]).
ICD Codes UPDATE - As of October 1, 2015, the United States has implemented ICD-10-CM. M.E. & cfs are clearly mutually exclusive. M.E. is in Chapter G, Diseases of the Nervous System, as it has been since 1969. CFS is in Chapter R, under the subsection of Malaise and Fatigue.
Postviral fatigue syndrome
Benign myalgic encephalomyelitis
chronic fatigue syndrome NOS (R53.82) R53.82
Chronic fatigue, unspecified
Chronic fatigue syndrome NOS
postviral fatigue syndrome (G93.3)
Physicians should use the proper coding for M.E. (G93.3) when a patient meets the 2003 and/or the 2011 Consensus Criteria in order to ensure accurate prevalence rates. This is crucial for securing research funding for causes, treatments and hopefully a cure for M.E. (And we know doctors are frustrated at the inability to help these patients!)
(Conversely, if the patient does not meet M.E. definition criteria, and is coded at R53.82, steps should be taken by the physician and patient to search for an underlying cause for the patient's symptoms.)
CDC HAS THIS TO SAY: https://www.commondataelements.ninds.nih.gov/MECFS.aspx#tab=Data_Standards
THEN THERE IS THIS:
REPORT on Dr. Hillman taking over Dr. Lapp’s practice at the Hunter Hopkins Center in Charlotte, NC (from a group member who visited him this week).
Dr. Hillman knew Dr. Lapp because a family member is a patient of his who has ME, so he understands the disease from a personal perspective.
He joined the Hunter Hopkins Center in Feb of this year. Dr. Lapp agreed to mentor him for a few months. The biggest take away from the consult was that Dr. Hillman absolutely “gets” it and is eager to learn, which as we know, is half the battle.
Some background: Dr. Hillman has been a PCP in the Charlotte area for 20 years, but there is a steep learning curve to getting up to speed on treating ME patients, but he is ready, willing and able to learn. It looks promising that Dr. Hillman will be
1) A great resource to get the prescriptions we need in the high doses we need.
2) He has a great deal of experience working with patients at his former practice to help them get on disability, so that’s another significant benefit for those seeking SSDI/SSI or LTD.
3) Even with the learning curve, he knows way more than the vast majority of doctors out there and, with guidance from Dr. Lapp, should be able to diagnosis and manage patients going forward.
Note: They charge $460/hour and will not file insurance or contact insurance companies period – payment arrangements are possible. They do give you the paperwork you need with the diagnosis codes on them to submit to your insurance company, but will not give them to you until you have a zero balance.
Clinical Guidance for ME: “Evidence Based Guidance Gone Awry by Mary Dimmock Jan 18th, 2018-
This article is intended as a high level summary of key issues in the conduct of reviews of the ME evidence- base that have resulted in flawed conclusions and recommendations in clinical guidance. This has misled medical providers on the nature of ME and it's appropriate treatment and put people with ME at risk of harm.
Comments can be sent to firstname.lastname@example.org
Letter from Governor Cuomo asking those in State of New York to acknowledge Myalgic Encephalomyelitis.
Solicitation for Applications From Individuals Interested in Being Appointed to the Chronic Fatigue Syndrome Advisory Committee. A Notice by the Health and Human Services Department on 03/22/2018
The Office of the Assistant Secretary for Health (OASH), within the Department of Health and Human Services (HHS), is seeking nominations of six qualified candidates to be considered for appointment as members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC). CFSAC provides advice and recommendations to the Secretary of HHS, through the Assistant Secretary for Health (ASH), on a broad range of issues and topics related to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Applications for individuals to be considered for appointment to the Committee must be received no later than 5 p.m. EDT on April 23, 2018 at the address listed below.
All nominations should be mailed or delivered to Commander (CDR) Gustavo Ceinos, MPH, Designated Federal Officer, Chronic Fatigue Syndrome Advisory Committee, Office on Women's Health, Office of the Assistant Secretary for Health, Department of Health and Human Services, 200 Independence Avenue SW, Room 728F6, Washington, DC 20201. Nomination materials, including attachments, may be submitted electronically to email@example.com.
FOR FURTHER INFORMATION CONTACT:
CDR Gustavo Ceinos, Designated Federal Officer, Chronic Fatigue Syndrome Advisory Committee, Office on Women's Health, Office of the Assistant Secretary for Health, Department of Health and Human Services, 200 Independence Ave. SW, Room 728F6, Washington, DC 20201. Inquiries may also be made to firstname.lastname@example.org.
Journalist Lily Williams has completed a deeply researched and thoroughly sourced story about ME--it's history, politics and current state of the science. Even better, her audience is not the lay public, which rarely if ever has been motivated to take political action no matter how dire the suffering of patients. Williams is instead informing an audience of influencers throughout science, members of the venerable American Society for Biochemistry and Molecular Biology.
And that's what makes her report so important. It would be hard to find a better population for dissemination of the complicated story Williams presents here. This may be the first time so many in the scientific community have been offered an objective, comprehensive look at the history of ME and the NIH's shady past in that history.
We cannot know today what effect this information will have going forward, but ultimately it might end up embarrassing the NIH into moving faster and spending more.
Williams gives the NIH a fair shot, quoting newbie Joe Breen, who defends the ME grant process at the institute, suggesting patients just don't understand the "obscure" practices of the NIH in awarding grants. Breen also admits it can take "six months" for a grant to be awarded.
But in the context of William's story, Breen's defense of the NIH rings hollow and, to my ear, clueless. After all, by the time she gets to Breen, Williams has already established for her audience that the disease has been around for decades, it's devastating, and it's huge. The teeny, tiny bump in NIH "fairy dust" funding came one year ago. What's NIH been doing for the last thirty years?
Williams points out that the NIH's primary researcher for ME in the 80s and 90s, Stephen Straus, was the psychologizer-in-chief and portrayed as the "chief villain" in my book of 1996. (Believe me--I made no effort to villainize him; Straus revealed his nature by his own words.) The contemporary Joe Breen tells Williams that "fortunately" ideas about ME have changed since that benighted era. New technology is allowing researchers to explore a multitude of "omics," including metabolomics, genomics, etc.
Does he acknowledge that some of the investigators currently running the first ME clinical trial at NIH were acolytes of Straus and his deleterious theories? Or that scientists in the 80s, 90s and early 2000s laid the groundwork, without NIH's much-needed help, for avenues of investigation underway today? It's not as if researchers of those decades were ignorant, incapable or lacked technology. How much farther would we have been, how much suffering and death could have been averted, had NIH done its job and supported those researchers with money commensurate with the problem? And I don't mean a measly $250 million a year.
In Wiliams' trenchant ME "timeline," her final item laid bare the hard reality: "If high estimates of prevalence are accurate, up to 8 in every 1,000 Americans have ME. (Hillary Johnson) referred to ME in the 1980s and ’90s as an epidemic; she now calls the disease endemic."
What does endemic mean in this context? ME has become a common disease, not a burgeoning epidemic disease as it was in the early 1980s. It's everywhere, it's deeply entrenched in the population just the way CDC and NIH feared AIDS might be if they didn't start spending hundreds of billions in the 80s and early 90s to knock it back.
So, Joe Breen, no one's worried about the fact it can take six months to get a grant. No one really cares about the "obscure" bureaucratic rituals of the NIH. This story is so much bigger, so much more tragic. And that's what patients are worried about.
Clinical Guidance for ME: “Evidence - Based” Guidance Gone Awry Mary Dimmock January 2018
This article is intended as a high level summary of key issues in the conduct of reviews of the ME
evidence base that have resulted in flawed conclusions and recommendations in clinical
guidance. This has misled medical providers on the nature of ME and its appropriate treatment
and put people with ME at risk of harm.
Comments can be sent to email@example.com. Summary For many years, ME evidence based
reviews and clinical guidance globally , such as those from Cochrane, Up To Date, Mayo, NICE, and various medical
journals and societies around the world have recommended cognitive behavioral therapy (CBT) and graded exercise therapy (GET) as effective and safe treatments for ME. Further, these sources have sometimes claimed that disease risk and poor prognosis is the result of behavioral and psychological factors such as maladaptive coping, a history of abuse, perfectionism, and the patient’s belief that the disease is organic. In spite of patient surveys and ancedotal reports that these treatments were not only ineffective but harmful, these recommendations and statements have remained.
Since 2015, a growing chorus of international journalists and scientists, along with reports by the U.S. Health and Human Sevices have documented serious deficiencies in the supporting studies that call into question the validity of these recommendations. In parallel, the U.S. Institute of Medicine (IOM, now called the National Academy of Medicine) published a report that directly contradicts the disease theory underpinning these studies. These deficiencies and contradictions include the following (Further details in Appendix II):
The Chronic Fatigue Syndrome Advisory Committee (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 (ME/CFS).
Administrative and management support for CFSAC is provided by the HHS Office on Women's Health in the Office of the Assistant Secretary for Health (OASH).
Commander Gustavo Ceinos, MPH, Senior Public Health Analyst, Office on Women’s Health, is the Designated Federal Officer for CFSAC.
Dr. Elizabeth Unger talks about PEM
Testifying at CFSAC Dec 2017 and Looking Out for Changes in 2018.
MEadvocacy watched the CFSAC meeting in December. There were updates from a number of organizations, presentations by Dr. Montoya and Dr. Rosamund Vallings, and public testimony from several members of the community.
Our latest blog shares some of the highlights from the meeting and discusses things we are watching for in 2018.
Read the blog here:
Public Review Period for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) CDEs:
December 15, 2017 – January 31, 2018
The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) CDE Working Group and the National Institute of Neurological Disorders and Stroke (NINDS)/Centers for Disease Control and Prevention (CDC) CDE Team have released a draft version (Pre-release Version 0.0) of the ME/CFS CDEs for public review. The ME/CFS CDE Working Group was divided into the following subgroups: (1) Baseline/Covariate Information; (2) Fatigue; (3) Post-Exertional Malaise (PEM); (4) Sleep; (5) Pain; (6) Neurologic/Cognitive/CNS Imaging; (7) Autonomic; (8) Neuroendocrine; (9) Immune; (10) Quality of Life(QoL)/Functional Status/CPET/Activity; and (11) Biomarkers. Reviewers may comment on any portion of the recommendations based on their expertise. Comments can be sent in the text of an email to NINDSCDE@emmes.com, in the provided template response spreadsheet or via annotations within the documents.
After the public review period, the ME/CFS CDE Working Group will review and revise the recommendations as needed. Version 1.0 of the ME/CFS recommendations will be posted at the end of February 2018. Please note that changes are still being incorporated and final documents will not be available until February 2018.
Thanks to Mary Dimmock, Matina Nicholson, Colleen Steckel, Kristina Osobka, David Esteban and all others who testified today at CFSAC. Here's the info to tune in tomorrow.
Phone or link in to CFSAC Webinar Thursday Dec 14th
9 am EST: or 888-469-1760 PIN: 4510479.
My name is Colleen Steckel. Diagnosed at age 29 with CFIDS and sick for 28 years. I am an advocate and support group leader and have experienced and witnessed indescribable suffering that has led to at least 37 untimely deaths in the last 2 years alone.
You have heard for decades how severely debilitating myalgic encephalomyelitis is for those of us who fit the International Consensus Criteria.
Research funding levels and lack of doctor education show a lack of understanding about the breadth of this epidemic. Know that our doctors are coding us as CFS, ME, Fibro, POTS, etc. so disease prevalence is buried.
Here is a perfect example of the rampant lack of understanding we face every day. As of last week Mayo Clinic states that treatment for CFS is: “Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen.” According to this, ME is NOT CFS. We need accurate information disseminated for ME as per the ICC.
The horror stories of mistreatment coming from patients who go to the top clinics like Mayo and Cleveland Clinic make it clear the CDC has not shared our experts’ knowledge about the complex nature of ME’s broken oxygen exchange system, impaired energy production and immune and autonomic abnormalities. This leads to unnecessary suffering and early deaths.
With the loss of Dr. Lerner and now Dr. Lapp retiring, the fear rippling through the community because there are too few knowledgeable doctors is overwhelming. Every day that proper information does not reach our doctor means at least a million US citizens suffer without medical care another day. Patients who are more disabled than someone with congestive heart failure.
In an effort to bring to light the breadth of the suffering I will close with information gleaned from an online group with thousands of members sick with ME where hundreds of people responded to the following question.
What age did you get sick and how long have you been ill? The age of onset ranges from age 9 to 55. When I added the number of years of the first 278 people that posted this equaled 5,195 years of suffering. Take a moment to let that sink in… 5,195 YEARS for just 278 people. That’s an average of 18.7 years per person waiting for doctors to have the information they need to alleviate our suffering.
That sampling of just a small percentage of our community should shake everyone here to their core. This neglect by our health care system is incomprehensible, a disgrace, unfathomable, unconscionable, and criminal.