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).
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.
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
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
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.
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
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:
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:
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?
MEadvocacy.org Advisory Committee:
Colleen Steckel, Joni Comstock, and Tracey Smith
Relatingtome.net - patient advocate and blogger:
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.
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.
Check off the ones that apply to you.
- ____ 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
____ 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.
Hyperalgesia: increased sensitivity to pain
Myofascial: pertaining to a muscle and its sheath of connective tissue, or fascia
____ 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
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.
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.
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.
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
Here is a link to the Questionnaire if you would prefer to print it out.
WHAT CAN YOU DO?
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
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.Read more
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.
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.Read more
Guest blog by Maryann Spurgin, Ph.D.
"An idea is always a generalization, and generalization is a property of thinking.
To generalize means to think."
~ Georg Wilhelm Friedrich Hegel
“As the biggest library if it is in disorder is not as useful as a small but well-arranged one, so you may accumulate a vast amount of knowledge but it will be of far less value than a much smaller amount if you have not thought it over for yourself.”
"Out-of-date theories are not in principle unscientific because they have been discarded."
~Thomas S. Kuhn, The Structure of Scientific Revolutions
"We see the world in terms of our theories."
~Thomas S. Kuhn
Note: I wrote this proposal in the late Fall of 2015 and in early 2016 as a work proposal (Circulatory Impairment in Myalgic Encephalomyelitis: A Work Proposal —by Maryann Spurgin, Ph.D. January 16, 2016
In mid January I began sending it to medical schools, and in late January/early February, I sent an earlier, longer version to some privately funded research teams, including to Ron Davis. Very recently, on May 27, 2016, I sent it to the research team at NIH at the following email addresses:Read more
May 18, 2016
Good afternoon to the Advisory Committee Members and to all stakeholders listening.
My name is Eileen Holderman - I'm an advocate for ME, GWI and other neuroimmune diseases.
Recently, I served as consultant to MEadvocacy, an organization advocating on behalf of nearly 1 million American men, women and children suffering from Myalgic Encephalomyelitis (ME).Read more
Why We Need to Raise Awareness
Disease sufferers have different ways they try to raise awareness of their plight. This is often done by distinct colored ribbons and assigned months when events and activities are geared toward raising awareness for that particular disease.
Myalgic encephalomyelitis (ME) uses the color blue for the awareness ribbon and the month of May has been assigned as the month of awareness. All patients suffering from any illness have dire needs for attention, whether for funding for research or for proper care and treatment. ME patients, because of the history of neglect and malfeasance by the government health agencies, have the added responsibility to testify about their personal stories and about the dismal history of medical abuse.Read more
May is awareness month for the related complex immunologic and neurologic diseases (CIND):
ME, CFS, Lyme, GWI, FM and MCS.
May 12 is the specific date chosen to raise awareness for these diseases, because it’s Florence Nightingale’s birthday. After her groundbreaking work in nursing, Nightingale became bedridden for decades from a mysterious disease similar to ME.
This year, May12.org has developed an easy way to spread awareness across social media with a May awareness overlay for your Facebook, Twitter or other social media profile photo.Read more
Guest Blog submitted by the ME Global Chronicle staff
MUPS (Medically Unexplained Physical Symptoms)
This is a guest post by ME Global Chronicle, a bi-monthly international online magazine, covering news on myalgic encephalomyelitis from all over the world. They are currently featuring a petition to the Dutch Health Council calling for the replacement of panel members to a government advisory committee who have a psychogenic bias of the disease.
MEadvocacy would like to thank advocate Eileen Holderman for her consultation on this blog post.
MEadvocacy sent a petition to NIH to cancel and restart the NIH Intramural Study on ME/CFS because of the many significant problems with the study’s design and protocol and lack of myalgic encephalomyelitis (ME) stakeholders’ input.
Since then, NIH has used various and confusing ways to communicate new and changing information about the study. As further information became available, we voiced our deep concerns about many of the significant issues with the study: multiple and ever-changing criteria, some of which are deeply flawed; biased and/or inexperienced investigators and advisors; additional problems with the study’s design; mistrust of the government health agencies and the problems with the way NIH is communicating.
This is a unique opportunity to design a robust study using the comprehensive resources of the NIH Clinical Center. It is crucial that this study be done with ME experts' and stakeholders' input from start to finish. This will ensure meaningful results and scientific advancement for patients who suffer from this serious, disabling disease.
MEadvocacy attended the National Institutes of Health [NIH] telebriefing on March 8th, 2016.
We issued a blog on March 9th with the question that we posted to NIH and the reply we received.
In this blog, we are giving the highlights of several presentations from NIH and National Institute of Neurological Disorders and Stroke [NINDS] regarding intramural and extramural NIH research. Many questions and concerns still remain, with some additional new ones. We will follow up with a blog with commentary on the call and the new protocol posted on the NIH website.
The NIH telebriefing audio file, released to us, is now available here.
[Photo of National Institutes of Health Clinical Center]
Summary of opening remark by NIH director, Dr. Francis Collins
Dr. Collins personally welcomed us to what he hoped will be an ongoing conversation about ME/CFS research. “...and how we can move the needle forward together when characterizing the cause of this perplexing disorder to help with better diagnosis and treatment.”
He stressed that the institute and director are very committed to move the science forward; with the intramural activities as well as extramural programs.Read more
MEadvocacy’s Question and Reply at the NIH Telebriefing, March 8, 2016
MEadvocacy took part in the 10:00 am EST teleconference today from the NIH, which included a capacity of 100 listeners. There was an initial introduction by NIH director Dr. Francis Collins, followed by presentations from NINDS director Dr. Walter Koroshetz, NINDS program director Dr. Vicky Whittemore, primary investigator Dr. Avindra Nath and lead investigator Dr. Brian Walitt.
The presentations were followed by a Q&A period. Advocates had the opportunity to submit questions that were addressed by the panel, if chosen during the allotted time period.
MEadvocacy will elaborate on the full briefing at a later date. For this blog, we are submitting the question that we posed to the NIH followed with their reply.Read more
Lately, we have noticed a disturbing trend. Various members of the ME community have been chastising vocal activists/advocates for being too militant, because they’re afraid that somehow this anger will be used against them, or they just find anger distasteful in general.
The majority of advocates are women. Traditionally, women are socialized to be polite, submissive, and not rock the boat. This leads us to believe that there may be different cultural and social perspectives at play.
In the United States, the First Amendment of the US Constitution guarantees freedom of speech, freedom of peaceable assembly, and the right to petition for redress of governmental grievances.Read more
Many look to our ME and CFS clinicians to transform into white knights coming to the rescue of a very neglected and mistreated patient population. More specifically, to take up the battle to confront the biased government institutions.
We suspect politics are at play, and understand many of the well-known clinicians have become reliant on government funding or fear government retribution. How do they fight without losing their ability to run their clinics? Can they strongly speak out against the government and stop perpetuating the inaccurate institutional bias causing neglect and harm? Especially when these are taught to the thousands of doctors and medical professionals.
We are grateful for the researchers and clinicians who have not been biased and have worked hard in our community to do research and treat patients in this hostile climate.
Misinformation at the CDC Grand Rounds
The Chronic Fatigue Syndrome: Advancing Research and Clinical Education, CDC Grand Rounds took place on February 16, 2016. See video of entire meeting here.
There were four speakers at the meeting: Dr Charles Lapp, Dr. Elizabeth Unger, Dr. Anthony Komaroff and Dr. Avindra Nath. For this blog we will concentrate on Dr. Lapp’s presentation.
Charles W. Lapp, MD - Medical Director, Hunter-Hopkins Center, P.A.: “Clinical Presentation of Chronic Fatigue Syndrome" - (Watch Dr. Lapp’s presentation here.)Read more
MEadvocacy has not received a reply from Dr. Collins to the e-mail, which included the petition, sent on Monday Feb. 15, 2016 (see our blog NIH and CDC: You Got Mail). In the time since the original email was sent, Dr. Nath presented at the CDC Grand Rounds. Our petition outlined the reasons why we called for the cancellation of the study and since then new and disturbing information has been uncovered. We have sent a reminder email and gave Dr. Collins a response due date: end of Friday Feb. 26, 2016.
Subject Line: Follow-up from Feb 15, 2016 e-mail re - URGENT - IMMEDIATE ACTION NEEDED Petition: NIH/CDC: Stop the CFS Study Using Reeves Definition & Cancel the Study’s Presentation at the Feb. 16th CDC Grand Rounds
We have not received your reply for the e-mail below. We would appreciate a response by end of Friday Feb. 26, 2016.
The ME community is justifiably angry by these choices that NIH has made in studying ‘fatigue’ - as opposed to a study of the neuroimmune disease, ME, with a study design approved by ME expert researchers (who have experience studying ME patients), as well as ME advocates and ME patients. Since our petition went out over a week ago, we feel it is reasonable to expect a reply from your office at end of Friday Feb. 26, 2016.
Mary Ann Kindel
Members of the Advisory Group of MEadvocacy
Email CC: Dr. Avindra Nath at NIH; Dr. Brian T. Walitt at NIH; Dr. Tom Frieden at CDC; Dr. Elizabeth Unger at CDC; Dr. Walter Koroshetz at NIH; Dr. Vicky Holets Whittemore at NIH; Secretary Sylvia Burwell at HHS; Colleen Steckel at MEadvocacy