The US federally chartered Chronic Fatigue Syndrome Advisory Committee (CFSAC) – formerly known as the Chronic Fatigue Syndrome Coordinating Committee – was established by the Secretary of Health and Human Services on September 5, 2002. Its purpose included advising and providing recommendations to the Secretary of Health and Human Services, through the Office of the Assistant Secretary for Health (ASH), on issues related to research, access and care for individuals with ‘ME/CFS’.
Every two years, on September 5, the CFSAC charter is renewed for another two years - so it came as a shock to the community when they received notice on Sept 6, 2018 that the CFSAC charter was not going to be renewed. According to the Federal Advisory Committee Management Handbook, several steps are required for renewal of a charter. One step in the process is a decision memo must be sent to the Secretary of HHS from the Operating Division or Staff Div head to the Secretary. The Designated Federal Official (DFO) was Commander Gustavo Ceinos, MPH, Senior Public Health Analyst, Office on Women’s Health. At this time we do not know if Commander Ceinos sent this memo.
MEadvocacy Advisory Committee member, Colleen Steckel, submitted an application in April 2018 to be considered for a position as a CFSAC voting member. Months passed with no updates on the nomination process raising uncertainty about the future of CFSAC.
An email requesting information about the timing of the next CFSAC meeting received the reply that a meeting was scheduled for Dec 11 and 12, but still no word about applicants being contacted for consideration.
As the deadline for the CFSAC charter renewal approached, an email was sent on Aug 28 asking: “Is there any update on the CFS Advisory Committee Charter being renewed? Information on the web indicates it expires in less than 10 days.”
There was no reply to that email request. The only reply that came was the email everyone received on Sept. 6 stating the CFSAC charter would not be renewed.
PERSPECTIVE ON CFSAC
We are grateful for the staunch advocates and volunteers who have worked hard either on the committee or by giving testimony, often to the detriment of their health. They worked toward adoption and promoting education for myalgic encephalomyelitis as described by the experts in the Canadian Consensus Criteria (CCC) and in the International Consensus Criteria (ICC).
One advocate that stands out is Eileen Holderman who served for 4 years as a voting member on CFSAC. She also acted as Chair of CDC Website Review Subcommittee, Chair of the Education and Patient Quality of Life Subcommittee as well as being a member of the Leadership Committee. Eileen consistently stood up for the proper criteria and name for the disease (as per ME experts) even when faced with threats from the committee’s DFO. Eileen and her subcommittee delivered recommendations to bring down the harmful CDC toolkit which was created with the aid of the CFIDS Assoc of America (now known as Solve ME/CFS).
The harmful CDC toolkit taught our doctors that CFS was treatable using Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET). While in 2018, CDC removed the toolkit from their website, they still recommend incremental activity for people with ‘ME/CFS’ - although without the heading of graded exercise. No official retraction of the harmful recommendations of GET and CBT have been made by the CDC resulting in the continued danger of thousands of doctor offices and medical websites around the country (and worldwide) still recommending harmful therapies. This topic has come up repeatedly in CFSAC meetings with no action taken.
Eileen Holderman pushed for CDC to research the 50+ worldwide outbreaks and to study severe ME patients. Here is a video of Eileen in action:
For the effort of Eileen Holderman and all those who fought for proper criteria and name for ME to be used by all HHS agencies, we are extremely grateful.
The outcome has been that CFSAC provided a vehicle for ME stakeholders, advocates and patients to express their voice, but it has been painfully clear that those voices have been ignored and dismissed. The majority of the recommendations brought forth by CFSAC’s voting members were completely disregarded. HHS just forged ahead with their own agenda - disregarding all ME stakeholders, while still claiming they were addressing stakeholder input.
MEadvocacy watched as repeated requests for adoption of ME expert criteria as expressed by the voting committee, advocates and patients were adamantly opposed by the DFO in charge of CFSAC. Recommendations to adopt ME expert criteria was rejected by HHS. These actions prompted many blogs by MEadvocacy and other concerned advocates regarding the neglect of the ME patients by US health agencies.
Some advocates and advocacy organizations have praised the achievements of CFSAC. One of the accomplishments touted as a success is the IOM report. MEadvocacy has long held the position that the IOM promotes the narrative that ME is a “tired after shopping” disease and does not accurately represent the ME patients. See this IOM vs ICC comparison chart to understand how the ICC more accurately portrays ME as opposed to the overly broad IOM definition.
Instead of being a productive interaction between stakeholders and the government, CFSAC essentially became a vehicle for justifying pushing the vague IOM criteria (SEID) for adoption and use across all health agencies (even NIH which would use IOM for research). MEadvocacy and other independent ME advocates adamantly oppose this approach because the IOM/SEID criteria do not describe the distinct disease ME. The IOM/SEID definition ignores the immune and cardiac abnormalities as well as denies the brain inflammation evidence and at the same time will include those suffering from disparate fatiguing conditions.
ADOPTION OF PROPER CRITERIA WILL LEAD TO THE FOLLOWING:
- Proper criteria leads to reevaluation of every CFS patients’ diagnosis
- Proper criteria leads to respect for the severity of ME
- Proper criteria brings awareness about the most severely ill
- Proper criteria leads to proper medical care for ME patients
- Proper criteria leads to an accurate narrative about the severity of ME
- Proper criteria leads to family members understanding the need for ongoing care
- Proper criteria leads to doctors ordering the right tests and providing real treatments
- Proper criteria leads to insurance companies paying for testing and treatments for immune system and cardiac abnormalities
- Proper criteria leads to patients having a smoother process for disability application
- Proper criteria leads to precise research into ME (not into vague fatigue)
- Proper criteria leads to FDA approval of needed drugs
Proper criteria is instrumental in resolving all the issues that have been raised at every CFSAC meeting by patients and advocates.
MEadvocacy has always recommended having a working relationship with our elected officials to make sure they understood the true nature and severity of ME and the lack of respect and recognition this disease is getting throughout our our health agencies.
Educating our members of congress and their staff about the importance of proper criteria by giving them information using expert materials like the CCC and ICC has been a focus of many of our volunteers and supporters. Explaining how the combining of ME and CFS is NOT in the best interest of ME patients has been met with surprise and then understanding, as case after case of neglect and abuse was brought to their attention.
More work needs to be done to make sure those who are in a position to make a difference have a full understanding of the severity of ME symptoms and the ongoing neglect and abuse we deal with on a daily basis due to the use of improper criteria.
Bringing ME patients together to fight for recognition of ME as per the experts is what we’ve always done and will continue to do.
WHAT YOU CAN DO:
1. Sign the #PwME4ICC petition titled: #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC
2. Contact your members of congress and insist that ME is diagnosed and treated as a separate disease and that our health agencies adopt the ICC for those who have ME. (For those who are overseas, we are reaching across the ocean to like minded advocates to help other countries to push for adoption of the ICC.)
Tell your Member of Congress:
- Focus on ME and not CFS (IOM states ME and CFS are two different diseases)
- Push for CDC to educate doctors how to re-evaluate every CFS patient for ME
- An ME advisory committee should not have DFO in women's health because this is not a women's health issue. ME affects men, women, and children.
- Researchers should use ICC, CCC or consider using the tentative definition of ME described by Frank Twisk which clarifies ME as a neuromuscular disease for patient selection.
- Doctor education should be based on the IC primer.
- Patients deserve a proper diagnosis and proper diagnostic label using expert criteria.
These blogs are specifically focused on CFSAC:
Analysis of CFSAC August 2015 Recommendations for the IOM Criteria (Dec 2015)
Eileen Holderman CFSAC Public Comment About NIH Study (May 2016)
Testifying at CFSAC Dec 2017 and Looking for Changes in 2018 (Jan 2018)
Artwork by Stonebird - raising awareness of Severe/Very Severe ME
“In my experience (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.” ( Daniel L. Peterson, M.D.)
UPDATED AUGUST 2018 from the original MEadvocacy 2015 Severe ME Day Blog
Myalgic Encephalomyelitis (ME) is a chronic, often severely disabling disease, that affects the autonomic nervous system, immune system, endocrine system, among others. It afflicts over one million people in the United States alone and as many as 17 million worldwide. ME is a disease that robs individuals of their health, similar to untreated HIV. There are those that refer to ME as non-HIV AIDS - with good cause, as the disease can leave sufferers confined to a bed, with little capacity to fend for themselves.
What many might not know is that one out of four people with ME (PWME) over time become so ill as to not only be disabled, and not just housebound, but completely bedridden. These patients struggle to do what most take for granted like brushing one's hair without gasping for air, feeding themselves, or getting to the bathroom unassisted. For them, life is reduced to survival, with the 4 walls of their bedroom becoming their prison, and the outside world a faded distant memory.
Chances are that many people have met someone that has gone on to develop ME, and they don't even know it because those with Severe ME end up disappearing into darkened rooms and rarely seen.
August 8th was a day dedicated day to raise awareness of the plight of the severely affected ME patients.
“Research has shown that ME/CFS has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or hemodialysis.” - (Prof. Malcolm Hooper and Eileen Marshall)
Most researchers agree ME manifests in three categories: Mild, Moderate and Severe. To date there is no cure and no meaningful universally effective treatments. For many of the sick undone by Severe ME, there is little more to look forward than darkened and hushed rooms (due to light and sound sensitivities), and incapacitating weakness, absolute exhaustion, and far too often, unrelenting pain.
Severe ME for loved ones, means…
...they need help with personal care
...cannot walk and even turning over in bed is painful
...unable to cut their own food, even a banana
...many are forced to use BOTH hands to lift a small plastic drinking glass
...daily water rationing for many because they lack the strength to walk the 10 steps to the bathroom
...being too weak to brush their hair or teeth
...requiring dark towels be taped over the black-out curtains in their bedroom, because the stimulation of even a few pinpricks of light can prove agonizing
...speech reduced to whispering, if sufferers can muster the strength to speak at all
...being tube fed. For many Severe ME patients, the ability to feed themselves eventually slips away.
The plight of these severe patients has been misunderstood, trivialized and even disbelieved. They suffer in silence, in darkened rooms because their hyper-sensitivities to light, sound and touch make it impossible for them to lead a normal life. Severe ME patients are seldom seen by a doctor because they cannot travel to a doctor’s office. Consequently, they have not taken part in studies and their unique symptoms have been missed or ignored in the medical literature for the disease.
Some of these symptoms include seizures, paralysis, intractable pain, blackouts, coma-like experiences, incontinence, tremors, cardiac dysfunction, dyscalculia, and dysphasia. By neglecting these severest patients, the medical community - and especially government health agencies - have done a great disservice to ME patients.
This neglect has arguably compromised the ability of government health agencies to develop proper disease criteria. It is hard to imagine any other illness having their severest patients omitted from research studies, criteria development, and even choosing a name for the disease!
“Our (ME/CFS) patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society” (Nancy Klimas, M.D.)
To bring awareness to Severe ME, August 8th was selected because it was Sophia Mirza’s birth date. Sophia died in 2005 from Severe Myalgic Encephalomyelitis at the young age of 32, many feel as a result of medical abuse and ignorance. Shockingly 13 years later, this medical abuse is still going on even today. This date was chosen in remembrance of Sophia and all those whose lives were shortened because of ME.
The devastating symptoms of these Severe ME patients still are not understood by many in the medical profession. The result for many Severe ME sufferers has been catastrophic. Due to medical and societal ignorance, ME patients have been inappropriately “sectioned” as mental patients against their will, despite suffering no mental illness. Children and young adults with ME have been forcibly taken from their parents and denied proper medical care as per ME expert clinicians.
Medical education about the true nature of this disease is the only way forward to make sure the atrocious abuse of these severely ill patients stops.
Awareness of the severity of ME is growing and the need to include the severe patients in current studies has been acknowledged.
Sue Dremann wrote an article in the Palo Alto Weekly:"Living on Empty: Chronic Fatigue Syndrome Saps its Victims But New Research May Find the Cause. It features three ME sufferers, with a focus on a very severely affected patient, Whitney Dafoe, the son of Dr. Ron Davis.
The End ME/CFS project of the Open Medicine Foundation has started an “ME/CFS Severely Ill, Big Data Study”. This study will conduct a comprehensive, “Big Data” analysis on severely ill patients with the goal of finding sensitive and distinctive molecular biomarker(s).
The geneticist, Dr. Ron Davis of the Chronic Fatigue Syndrome Research Center (CFSRC) at Stanford, has recruited Nobel laureates James D. Watson, PhD and Mario R. Capecchi, PhD among others as advisors to create what he envisions as a collaborative ME/CFS research effort akin to the Human Genome Project. Dr. Davis started the the Open Medicine Foundation's ME/CFS Severely Ill Big Data Study (May 2018 Progress Update). Currently, there is no other severe patient research study being performed in the US. This is the first and only one.
What You Can Do
A July 2018 change.org petition has just been posted demanding US government adopt the International Consensus Criteria (ICC) for diagnosing, research and treatment of ME patients. As US health policy affects everyone around the world, everyone around the world is urged to sign. United we can make a difference. Hashtag for this petition is #PwME4ICC (People with ME for ICC).
We also recommend using these hashtags when sharing on social media: #MEICC #MyalgicE #PwME #ActUp4ME #PwME4ICC #MEadvocacy #MyalgicEncephalomyelitis #SevereME #ReactivatedViruses #OpportunisticInfections #ImmuneDeficiency #ResearchFraud #MyalgicEnc
Please sign and share widely among your friends and family
Donate here for the Open Medicine Foundation's ME/CFS Severely Ill Big Data Study
Links and Resources
Greg and Linda Crowhurst have more guidance on how to care for someone with Severe ME at their ‘Stonebird’ website.
Other Severe ME links…
Justice For Karina Hanson Facebook Page – Danish ME patient that was held in hospital against her will. After community outcry, she was returned home.
In Memoriam – The National CFIDS Foundation compiled this list to make people aware of the seriousness of CFIDS/ME
Voices from the Shadows - One hour documentary bringing witness to the plight of the severely ill ME patients in the U.K.
Diane’s Story – The carer of her daughter; severely ME patient Lily
Don’t let ME Die in Vain – Facebook page dedicated to take active steps and support for the 25% of severely affected
Emily Collingridge – 1981-2012
- Merryn's Legacy Facebook Page - Merryn Crofts died in 2017 and in May 2018 her legacy FB page announced her official cause of death was recorded as ME. This makes Merryn only the second person in the UK, and the youngest, to have ME as recorded official cause of death.
Lynn Gilderdale - Diary
JK Rowbory – Severe ME site
The World of One Room - Seven Years in the Making – Severe ME awareness video by Jessica Taylor-Bearman
Laurel’s October 2009 CFSAC testimony – Severe ME awareness video
Elizabeth D’Angelo Fine Art - Artwork of Severe ME artist
Come join the thousands of MEadvocacy members to raise awareness for severe ME all year long - JOIN (free membership)
Please use #SevereME on twitter for this special day
Thanks to one of our new volunteers, Olga Pinsky, our website is scheduled to get a revitalization. We are excited to have her bring a new look to our website with improved ME user-friendly functions.
In order to accomplish this she is leading a fundraising campaign to not only revitalize our website but keep our website up and running and have funds to help advance our ME awareness mission. Donations $50+ will receive 1 ME wristband Donations like the one shown above.
Please check out Olga’s video
$3,000 Website Fundraiser Deadline: 30 September, 2018
Please consider donating here: https://www.meadvocacy.org/donate_for_2018
#MyalgicE #PwME #PwME4ICC #MEICC #SevereME #MyalgicEncephalomyelitis #MECFS #CFS
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).
Please sign and share widely among your friends and family.
As US health policy affects everyone around the world, everyone around the world is urged to sign. United we can make a difference. CLICK HERE TO SIGN PETITION
OTHER ME NEWS:
2. Gabby Klein, one of our volunteers, has posted an important blog on her website entitled “Emperor CDC’s New Clothes”. https://relatingtome.net/2018/07/18/emperor-cdcs-new-clothes
MEadvocacy shares Gabby’s concerns that: “The result of the CDC website update is full of deceptions and in many ways worse than the old toolkit for medical professionals.”
3. Advocates around the world have voiced concerns about the CDC putting into effect the flawed IOM report.
Our blog entitled “Analysis of CFSAC August 2015 Recommendations for the IOM Criteria”, dated Dec 2015 continues to be valid today.
4. A UK petition which can be signed by anyone. “Call for Change” Submission to the UK Parliament by the international ME/CFS community. https://www.change.org/p/carol-monaghan-after-the-debate-call-for-change
As with the #PwME4ICC petition aimed at US government officials, this UK petition also recommends the International Consensus Criteria (ICC) as a resource for physicians. Using the same international consensus criteria across the globe is effective for consistency in research and patient care.
5. MEadvocacy is a project of May12.org which is a 501(c)(3) not-for-profit corporation founded in March 2012. Their mission is to raise global awareness and education for complex immunological and neurological diseases.
May12.org requests signatures for Carl Tuttle’s petition: "Calling for a Congressional investigation of the CDC, IDSA and ALDF"
"Legislation over thirty years has not resolved the Lyme crisis here in the United States as there is tight control over Lyme disease policy refusing to recognize that Lyme disease can cause horrific disability and death. Until Lyme is upgraded to a life-altering/life-threatening infection like AIDS we will see continued health and disability claim rejections stemming from the racketeering scheme associating Lyme to the “aches and pains of daily living.” -- "Lawsuit initiated by Robert F. Kennedy, Jr. against Health and Human Services (HHS)"
As always, if you have questions or suggestions, contact us through our website or email us at www.MEadvocacyorg@gmail.com
“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).
Tom chose May 12th as the international awareness day 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.
26 years have passed since Tom designated this special day which has grown in its reach year after year. Yet, it seems that the roots and essence of what information needs to be internalized and spread widely is getting lost as each year goes by. Tom, as well as other, experienced ME advocates and MEadvocacy have advocated for the recognition of the distinct acquired neuroimmune disease myalgic encephalomyelitis (ME) as defined by our ME experts in the International Consensus Criteria (ICC).
HOW FAR HAVE WE COME?
Since the unveiling of the highly contested IOM/SEID criteria, it seems like many in the community have jumped on the CDC bandwagon promoting the IOM criteria - despite the fact that those that have studied the validity of this governmentally sponsored definition have found it to be overly broad and inclusive of people who suffer from diverse fatiguing conditions. A good example is Dr. Leonard Jason’s recent statement in David Tuller’s interview:
“But I believe these authors made a mistake in indicating that a patient could have either cognitive impairment or orthostatic intolerance—one or the other. Cognitive impairment should have been required for all patients to have. But a more serious problem is that they inadvertently expanded the case definition by having just about no exclusionary illnesses, such as primary psychiatric disorders. My team recently conducted a study where about half the people with a variety of medical and psychiatric illnesses met the IOM criteria.”
ASKING THE RIGHT QUESTION
"The art and science of asking questions is the source of all knowledge." - Thomas Berger
Patient advocate Alex Young recently posted paramount questions on social media:
“The real question is why does government, science, and the medical profession allow unscientific and irrational claims and research to stand? Most of the psychiatric claims about ME, especially from BPS [biopsychosocial] adherents, are not rational and do not have sound evidence. How is this acceptable? How can government function if it takes advice on scientific matters that is not scientific?”
Government Health Agencies who have been charged (and paid for by the people) to protect the health of their citizenship and to uphold the highest level of scientific approach are in reality an abysmal failure. When it comes to the study of ME, these agencies claim to uphold and accept only high level, evidenced-based studies, yet they accept - even prefer - unscientific papers featuring biopsychosocial theories such as Bodily Distress Syndrome (BDS) (see Stonebirds’ paper on the bias and danger of BDS here) pseudoscience and refuse valuable biomedical studies of the disease.
The PACE Trial is a perfect example of pseudoscience currently being revealed to everyone as to all its flaws with its very poor design and wrong and changing parameters. Many in our community have questioned Lancet’s liability in publishing such a failure of a study. But, our government health agencies and some advocacy organizations are culpable of accepting and promoting these unscientific claims which have caused untold harm to people with ME (pwME).
Why were they all (most countries) so quick to accept this unscientific BPS study which wasn’t even using ME criteria and therefore many of the cohort used in the study did not actually suffer from ME?
It’s because the results of PACE and other BPS studies fit the government’s narrative of what they want this disease to be perceived as.
In reality, all these agencies have budgets and the name of the game is - spending the least possible. They can accomplish this with their false narrative that “ME/CFS” is just an umbrella term for all types of fatiguing conditions - most of which are psychosomatic.
In this way, they can deflect responsibility to do any further study and can rely on dumping the responsibility of treatment on the patients by using cognitive behavioral therapy and graded exercise therapy which is relatively inexpensive. Plus, a lack of progress can be blamed on the patient for not trying hard enough.
HHS GOVERNMENT MALFEASANCE
Health and Human Services (HHS) and its agencies continue their malfeasance because they have been able to get away with it unhindered for decades. Their purposeful course of minimizing, marginalizing and psychologizing this disease has bored its way throughout the agencies and medical care institutes. Once wrongly branded, it is very hard to cause an institutional reversal.
HHS uses insidious methods to accomplish the perpetuating of their false narratives.
- They create inaccurate criteria for diagnostic and research purposes that are overly broad and overly focused on the symptom of fatigue. The result is to confuse and damage the reality of the disease. Examples of criteria that harm ME patients are: Holmes, Reeves, Oxford, Fukuda, and most recently in 2015 the IOM
- They encourage and prefer to fund studies based on the psychosocial myth (PACE Trial and many NIH funded studies such as from Reeve’s, Unger, Friedberg, Vincent, Antoni)
- They deny funding to serious biomedical investigators (Davis, Montoya, Chia & many others)
- NIH overall funding for the disease is a pitiful fraction of what other similarly burdened diseases get
- NIH appoints investigators who believe ME to be psychosomatic to lead and work on their ME/CFS NIH intramural study. (see Drs. Brian Walitt, Fred Gill, and Leorey Saligan.)
- NIH welcomes education of the BPS myth of the disease as was evident with their Nov. 2016 invitation of Edward Shorter, known ME denier, to give a lecture to their NIH investigators about the history of ME based only on the BPS narrative. Following an outcry from the patient and advocate community demanding NIH cancel the upcoming lecture, Dr. Koroshetz refused to comply. (see MEadvocacy blog about it here)
- NIH does not even respect ME enough to place it in one of the 27 NIH Institutes each awarded substantial assigned budgets. Instead, the disease is falsely placed in the obscure Office on Women’s Health (OWH).
The damage caused by promoting harmful treatments due to poorly conducted research is self-evident. How many #pwME have been harmed by the damaging recommendations of CBT, GET, Lightning Process & others?
Additionally, the use of inclusive diagnostic criteria are dangerous as well. There are numerous accounts of people falsely diagnosed with ME (when they actually suffer from other conditions or just the symptom of fatigue) who then go on to state how they have recovered due to an increase in activity or some type of psychosocial intervention. These accounts confuse the real facts of ME and give the wrong impression that this disease can be easily cured - if only the patients would take some easy steps for their recovery. Of course, all this plays into the government desired narrative.
This is why MEadvocacy will continue to advocate for the following:
-Educate about the real facts of what myalgic encephalomyelitis is and how it affects patients
-Advocate for the use of our experts’ International Consensus Criteria (ICC). (#MEICC)
-Push for dropping the CFS out of the name and returning to the original name myalgic encephalomyelitis
-Demand $250 Million annually in funding on research into the biological nature of ME
And finally, MEadvocacy will continue to educate the public including exposing the governments’ continued malfeasance and misconduct regarding the lack of proper evidenced-based biomedical research, their promotion of the Bodily Distress Syndrome (BDS) myth, the refusal to adopt proper criteria (including use of bad criteria like IOM) and the overall pitiful attention and funding for ME.
What you can do:
Support organizations who back the experts’ International Consensus Criteria
Reject the narrative from the IOM that this is a “tired after shopping” disease.
Speak out when you see any indication that ME is the patient’s fault for not having right thinking or just needing to exercise more.
Together we can rewrite the narrative of what ME is and get the respect from our family, friends, and doctors that is afforded to every other serious debilitating disease.
In Memory of those ME warriors lost since May 12, 2017
Constance Eleanor Turner McIntyre - May 2017
Merryn Crofts - May 2017
Martin Rhisiart - June 2017
John Falk – Aug 2017
Julia Browell - Aug 2017
Cheryl Schaverein - Nov 2017
Gina Giarusso Bettor – Nov 2017
Lara Dawn George Henderson - Nov 2017
Mag Friel - December 2017
Kathy Lynne Walker - Jan 2018
Rhian Charlesworth - Jan 2018
Anne Örtegren - Jan 2018
Nicola Schmidt - Jan 2018
Holly Butcher - Jan 2018
Rebecca aka Goldfisch Goldi - Feb 2018
Robert Courtney - March 2018
Alison Thomas - March 2018
Ian Rudd - March 2018
Dr. Betty Fretz - March 2018
Jane Scott - April 2018
Harvey Keith Carden - April 2018
Joseph Biener - April 2018
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. Public comments are to be submitted by 1/31/2018.
The general NINDS CDE section explains the purpose of the CDEs as follows:
“Many of the CDEs will overlap across study types, which allows for comparisons and meta-analysis across studies. Consistency of the data elements and the CDE formats is kept in order to ensure the ability to transfer critical medical information electronically from one center to another. This consistency also allows for continuity across different disease areas. The goals of the NINDS CDE initiative are to increase the efficiency and effectiveness of clinical research studies and clinical treatment, increase data quality, facilitate data sharing, and help educate new clinical investigators.”
MEadvocacy.org has vigorously advocated for the adoption and use of criteria created by ME experts, like the International Consensus Criteria (ICC), for selecting individuals for research. The aspired goal is to make sure the cohorts being studied include patients who suffer from the same disease (ME) - in exclusion of those suffering from other conditions or idiopathic fatigue.
Broad criteria created by the CDC like the 1994 Fukuda or 2015 IOM do not ensure patient selection will exclude those who suffer from other fatigue-inducing illnesses. (as shown by Leonard Jason and Frank Twisk published works)
An expectation that the common data elements (CDEs) would be based on clearly defined patient populations does not appear to be met by the current CDE draft because NIH/CDC does not require a specific research criterion to be used for all the federally funded studies. Additionally, the CDEs are too vague in their description of post-exertional malaise (PEM) thus risking inclusion of patients with other diseases in studies for ME.
MEadvocacy.org represents patients who fit the experts’ criteria such as the International Consensus Criteria (ICC) for myalgic encephalomyelitis - including the severely ill. In reviewing the proposed common data elements, they fail to accurately select a true ME population. The conflation of persons with ME (pwME-ICC) with persons suffering from conditions with similar symptoms such as CFS, fibromyalgia, postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndromes (EDS), depression or idiopathic fatigue will confuse study results which will only cloud and continue to stunt scientific advancements of the disease ME.
Historically, ME as defined by the ICC has been buried under CDC overly broad definitions such as Holmes, Reeves, Fukuda and most recently IOM. Additionally, the US government health agencies have refused to adopt definitions created by actual ME experts with extensive hands-on experience in treating and researching the disease. This government refusal to recognize ME has caused a lack of research in the exclusive #pwME-ICC (#MEICC) population. The proposed CDEs further aggravate the problem, because they leave it up to the researcher to pick any research criteria of their choosing. Thus, the ME population will again not be clearly identifiable within the broader CFS patient population.
In their draft, the CDE working group for PEM acknowledges they neglected the severe population. They state: “While there is little formal research on subtypes of ME/CFS as it pertains to PEM, severely impaired patients may experience PEM with significantly smaller levels of exertion. Recommendations made by this working group may need to be modified or adapted for this group.”
CDEs Do Not Replace Case Definition
NINDS and CDC do not recommend which research definitions federally funded ME researchers should use. In their CDE description, they state:
“Researchers conducting the studies using CDEs will determine the case definition and enrollment criteria that best fit their research objectives. The CDEs are methods of collecting data in a standardized manner… The intention is that CDEs will be applicable independent of the research case definition.”
This is an extremely troubling statement from NIH/CDC!
They are advising federally granted researchers to choose whichever enrollment criteria they wish to use. They state: “whichever criteria best fit their research objectives” - so if, for example, they want to show GET is good for pwME, that’s fine - just use the inadequate Reeve’s criteria!
The CDEs are meant to serve as a method of collecting unified data in a standardized manner, independent of criteria. The real issue here is if the data is taken from cohorts that do not suffer from ME, what disease is NIH/CDC looking at with their CDEs?
The CDE PEM Draft
Since PEM (or more accurately, PENE) is the hallmark and distinctive symptom of an ME diagnosis, great care should be taken in its description and definition. Yet, the current CDEs define PEM as a positive finding of only 1 of the following 5 questions taken from the DSQ questionnaire. (with a moderate severity and frequency)
- Dead, heavy feeling after starting to exercise
- Next day soreness or fatigue after non-strenuous, everyday activities
- Mentally tired after the slightest effort
- Minimum exercise makes you physically tired
- Physically drained or sick after mild activity
Any one of these questions can be applied to many other illnesses or basically be a result of deconditioning. They do not define PEM per the Canadian Consensus Criteria (CCC) nor Post- Exertional Neuroimmune Exhaustion (PENE), in the International Consensus Criteria (ICC) which require a much more significant impact on daily living and is a unique experience seen in ME.
The ICC was created by ME experts for diagnostic and research purposes. The IC Primer lists many recommendations for biological tests to be taken to confirm a proper ME diagnosis - not simply relying on subjective questionnaires.
The goals of the CDEs are admirable but, it can only be effective if the data being looked at and shared are actually based on the distinct disease being discussed. For example, if the CDEs were used to compare ME with major depressive disorders (MDD) and the ME cohort mistakenly included those suffering from MDD and not ME - it will skew the picture.
MEadvocacy’s concern is that the current NINDS/CDC CDEs draft will not accomplish its intent because:
they do not specify the research criteria to be used across all federally funded studies (i.e the ICC)
they rely on subjective questionnaires most of which were not created for the distinct disease ME
- PEM/PENE, the hallmark feature of ME, is very poorly defined.
Therefore, MEadvocacy recommends that:
- All federally funded researchers use the ICC which was created by ME experts for diagnostic and research purposes.
- New questionnaires be designed which are strictly created with ME patients in mind.
- PENE be strictly defined as per ICC in order to weed out those who suffer from fatiguing conditions - not ME
What You Can Do
If you agree with MEadvocacy’s recommendations, you can send an email with MEadvocacy’s blog (copy and paste or a link), stating that you endorse MEadvocacy’s recommendations to NINDSCDE@emmes.com (due date is 1/31/2018)
* Please note - CDE instructions state: After January 31, 2018, feedback can still be sent at any time through the website or by emailing NINDSCDE@emmes.com. Proposed changes will be brought to the oversight committee (OC) for review.
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). He could have tried to teach them that they were wrong, but he never did that because he knew it would be fruitless. Imagine him sitting there with grand wizards in their white robes, masks, and caps. It would have been a pointless effort.
In fact, if it helped anyone it would have accommodated the KKK by giving the wrong impression that they are a reasonable group as opposed to the hateful criminals they really are. Instead, he brought the fight to the media through protests and approached lawmakers in Washington D.C. Martin Luther King Jr. knew that the best way to affect a change and stop their ongoing crimes was through the education of the public and the assistance of lawmakers who uphold our laws.
Hatred is an evil motive, but not the only one. The love of money above all else is a cause capable of creating great evil in the world. Racism and the love of money can both inflict massive pain, suffering, and death on the masses.
It is ironic that another group perpetrating evil also wear white robes, masks, and caps. I am referring to corrupt medical researchers. The powerful researchers love money above all else. Think of the Centers for Disease Control [CDC], the National Academy of Medicine, formerly called the Institute of Medicine [IOM], Infectious Diseases Society of America [IDSA], and American Lyme Disease Foundation [ALDF]. The USA, Canadian, UK, and Australian medical authorities are all corrupt because:
- denying proper diagnosis is a huge cost savings
- prescribing ineffective treatments boosts profits
avoiding implications of gross scientific misjudgments which have allowed an epidemic of diseases protects them from criminal and financial litigation.
Lies are necessary to maximize profit and minimize fault, while they are keeping us sick.
The public would be outraged if they knew the extent of the deception perpetrated by medical agencies. Modern medicine is loaded with skilled manipulators who have convinced the public that they use good science. We cannot correct system-wide corruption from within. Many have tried for decades without success. We need to go over their heads. We must make them do the right thing through educating the public about their corruption and crimes and by utilizing lawmakers and the law to succeed.
Just stating what we need is not good enough. The public must know that they are criminals and not merely mistaken scientists. The current dominant advocacy strategies portray them as mistaken scientists. That strategy won't change anything. Their work is more than flawed. It is fraud. Just two examples of fraud are:
The UK Pace Trial research promoting using of cognitive behavioral therapy [CBT] and graduated exercise therapy [GET] as effective treatments for chronic fatigue syndrome [CFS]. See this link for David Tuller’s articles documenting the fraudulent activities of the researchers who had a conflict of interest in the outcome of this study due to their relationship to insurance companies.
The “Dearborn” conference for the standardization of diagnosing Lyme disease. See this link for how the criminals falsified the Lyme disease case definition and fraudulently used the two-tier testing to validate the LYMErix vaccine.
They will always win the debate if the public believes they use good science. The public needs to know about the corruption and the routine lie "we use good science".
Just as MLK wouldn't try to work with the KKK, it is useless for us to try and work with the CDC, IOM, FDA, IDSA, ALDF and the others. They are lying to keep us sick for monetary gain. One cannot convince; a bank robber to stop stealing by telling him it is wrong, telling a racist it is wrong to hate, or telling a terrorist it is wrong to kill. Evildoers and lawbreakers don't care. We must speak to the public to educate them via protests with like-minded people who can spread the truth through all forms of media and use the law to put an end to their crimes.
*Note: MEadvocacy.org is a project of May12.org, a 501(c)(3) not-for-profit corporation whose mission is to raise global awareness and education for complex immunological and neurological diseases, including Myalgic Encephalomyelitis (ME). As such, donations from USA citizens are tax-deductible as allowed by law.
Follow May12 on Twitter: @May12org
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.
Although CFSAC used to meet in person 4 times a year, their meeting frequencies have been reduced to twice a year with only one live meeting and the other a teleconference. In 2017, CFSAC had meetings in January and June - with a third meeting added in December.
This meeting included updates from the following organizations:
- CFSAC’s DFO on status of implementation of recommendations from the last CFSAC meeting
- National Institute of Health
- Centers for Disease Control and Prevention
- Food and Drugs Administration
- Social Security Administration
- Health Resources & Services Administration
- Agency for Healthcare Research & Quality
- Department of Veteran Affairs
- Simmaron Research, Inc
- Massachusetts CFIDS/ME & FM Association
- ME Action
- Report from the Pediatric Education Working Group and Parent Information Center
RESEARCH UPDATE PRESENTATIONS
Two Presentations were given about research updates.
- Research Update on Adults given by Jose Montoya, M.D. (CFSAC Member)
- Research Update on Pediatric given by Rosamund Vallings, M.D. (Invited Speaker) Howick Health and Medical, Auckland, New Zealand
During Dr. Montoya’s presentation, he asked Dr. Unger to confirm that the CDC had removed materials recommending GET (Graded Exercise Therapy) and CBT (Cognitive Behavior Therapy) as treatment options.
While Dr. Unger verbally confirmed to Dr. Montoya that the CDC removed GET and CBT materials, as of this blog post there are still links from the CDC website to materials recommending graded exercise and behavioral therapy.
(One example is this link to Stacks here in Spanish for materials recommending CBT and GET. The English version has been removed.)
(Slide from Dr. Montoya’s presentation)
The working part of the meeting was a discussion of the Medical Education Work Group’s recommendations. Final recommendations will be posted on the CFSAC webpage.
Both days included public comments from patients and advocates.
A running theme from the public comments was:
- the lack of urgency from the government health agencies
- the faulty and harmful information posted on CDC website and mailed out to clinicians - without retractions
- CDC website not fulfilling the requests of previous CFSAC recommendations
- the dire circumstances of patients denied disability
- patients dying while waiting for treatment information to get to their doctors
Colleen Steckel, an advisory committee member here at MEadvocacy spoke about the mistreatment of patients by providers.
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 healthcare system is incomprehensible, a disgrace, unfathomable, unconscionable, and criminal.
Eileen Holderman, long time ME advocate who served on CFSAC for 4 years, (found on twitter @TurnItUp4ME) spoke about the history of CFSAC recommendations for the CDC to update their website and educational materials which still need implementing today.
Good morning to the Committee Members and to the ME community.
I’m Eileen Holderman, I’m an advocate.
As a former member of CFSAC, I served as Chair of the Subcommittee for CDC Website Review. For years, we made recommendations to CDC to improve the website so that it reflected the scientific facts and evidence of the neuroimmune disease Myalgic Encephalomyelitis. Unfortunately, the revisions CDC accepted were minimal and the site continued to appear as a site for the condition of chronic fatigue - not ME.
When my term on CFSAC ended, I wrote an open letter to Dr. Unger listing numerous issues remaining with their website focusing on the Toolkit and Resource Guide, touting CBT and GET, which were used as medical education guidelines for physicians and healthcare providers. For years, I and many advocates continued to ask CDC to remove the Toolkit and make the additional changes on their website. Despite our pleas, CDC made a decision to keep the Toolkit up on a CDC website called Stacks.
Then about 2015, I gave public comment to CFSAC, reading into the public record, excerpts from my open letter to Dr. Unger, urging CDC to take the Toolkit and Resource Guide down, among many other issues that still needed changes on their site.
About 3 months ago, I embarked on a Twitter campaign to press CDC to take their Toolkit down. Finally, 1 month ago, the Toolkit was taken down off the CDC site, called Stacks. However, the CDC Toolkit in Spanish remains up on the site!
More concerning to the ME community, is the fact that for about a decade, the CDC Toolkit was the official guideline for physicians and healthcare providers all over the US and in many parts of the world. In just 1 meeting at CFSAC, Dr. Belay announced 17 thousand Toolkits were mailed out to healthcare providers all over the US. Additionally, CDC made the Toolkit available via e-copies for healthcare providers to download.
As I speak today, doctors and healthcare providers in the US and around the world use the CDC Toolkit because CDC has still not advised the healthcare profession AGAINST using it – nor has CDC issued a warning to doctors of the harms prescribed in the Toolkit such as GET and CBT.
The stakeholders: expert researchers and clinicians, advocates, patients and caregivers need CDC to disseminate notices to all healthcare providers to stop using and referring to the Toolkit and its guidelines.
For the 17 million men, women and children suffering from ME around the world, this recommendation needs to be implemented right away.
LOOKING FOR CHANGES IN 2018
We will be watching the CDC closely to see how they respond to the issues raised - such as:
A full retraction of the toolkit replaced with information affirming that Graded Exercise Therapy (GET) is harmful to ME patients and should NOT be recommended and that Cognitive Behavior Therapy (CBT) is not a valid treatment for M.E.
Removing false and harmful information from CDC website as well as from the mainstream medical community like Mayo Clinic, Cleveland Clinic, etc.
Updating CDC website and educational material with information from the ME International Consensus Primer for Medical Practitioners. MEadvocacy has created an easy to follow ICC questionnaire. This is a good resource to share with doctors to understand the full range of myalgic encephalomyelitis.
The following are excerpts from the ME-IC Primer and materials on the CDC website should include this information:
Post- Exertional Neuroimmune Exhaustion (PENE pen׳-e)
“PENE is characterized by a pathological low threshold of physical and mental fatigability, exhaustion, pain, and an abnormal exacerbation of symptoms in response to exertion. It is followed by a prolonged recovery period.”
“Neurocognitive, sleep, autonomic and sensory disturbances, pain, headaches, and paresthesias are prominent neurological signs and symptoms. Cognitive impairments including slow processing of information, poor attention, word finding, and working memory are some of the most functionally disabling symptoms”
“Neuropathic viruses can infect and damage the brain, ganglia and immune cells. The initial infection may cause profound dysregulation of the immune system, which in turn may result in persistent infection or abnormal immune response. Activated immune complexes, including elevated levels of various cytokines, cause chronic inflammation against a background of immunosuppression, which makes the body more vulnerable to opportunistic infectious agents and may play a role in post-exertional flares and flu-like symptoms.”
Energy Production and Ion Transport Impairments and Cardiovascular and Autonomic Impairments
“Profound energy impairment suggests dysregulation of the mitochondria and cellular energy production, channelopathy, and ion transport. There is an inverse relationship between diurnal variation in blood pressure (BP) and fatigue. Impairments increase risk of cardiovascular events. Orthostatic intolerance (OI) suggests impaired cerebral circulatory autoregulation. Low oxygen consumption, stroke volume, and reduced circulation are associated with symptom severity and functional impairment.”
Fast tracking for FDA approved medications. There are medications shown to help ME patients including Ampligen, antivirals, Low Dose Naltrexone (LDN), etc. which should be made available as soon as humanly possible.
WHAT YOU CAN DO
Continue to support MEadvocacy’s mission:
Advocate for ME Recognition
Advocate for ME Definition
Advocate for ME Research
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). MEadvocacy.org and ME advocates continue to advocate for criteria created by ME experts such as the International Consensus Criteria (ICC) and warn the community against the dangers of CDC's blanket adoption of the overly broad and untested IOM criteria. Additionally, upon review of the revised website, we have uncovered many other weaknesses which are listed below.
MEadvocacy was aware of the risks in using the new IOM criteria, which are just another government production of a vague fatigue definition. We, therefore, opted out of Dr. Unger 's invitation in January 2016 to participate in their Technical Development Workgroup (TDW) to provide input for the upgrading of CDC's website and provide information for their medical educational materials. In our communications with Dr. Unger, it was made clear that only material from the IOM report would be considered in this update. MEadvocacy told Dr. Unger we would only participate if material from the Canadian Consensus Criteria (CCC) and ICC would be used.
Problems With the IOM Criteria
The IOM committee clarified in their 2015 report that the disease they were defining was not the neuroimmune disease myalgic encephalomyelitis (ME) but, another “disorder”. They wrote: “.. and that the name “myalgic encephalomyelitis” does not accurately describe the major features of the disease. In their place, the committee proposes “systemic exertion intolerance disease” as a name that better captures the full scope of this disorder.”
Additionally, Dr. Leonard Jason's - "Patients Battle for Justice" found that the IOM diagnosis, in reality, is not any particular disease, let alone ME. Dr. Jason stated: “The IOM also released a new case definition to replace CFS, and our published work now suggests that these new criteria would almost triple the prior CFS prevalence rate, and this is in part due to the inclusion of individuals who formerly had been excluded. Unwittingly, this inadvertent action accomplished much of what Bill Reeves and the CDC had attempted to do a decade ago when they proposed an ill-fated expansion of the case definition.”
In this paper, Frank Twisk demonstrates the shortcomings of the SEID (IOM) criteria. Frank explains the problem with the parameters of the literature the IOM panel was charged to review by HHS. It was mostly based on studies using CFS criteria. It is not surprising then that their result is a definition of CFS - not ME. Additionally, like the previous CDC criteria, the IOM definition is based on the vague, subjective symptom of "fatigue."
Frank states that this new definition will include many who do not suffer from ME: He wrote: "Patients with any of the following conditions will all meet the criteria for a diagnosis of SEID: postural orthostatic tachycardia syndrome, chronic heart failure, chronic obstructive pulmonary disease, mitochondrial diseases, Addison's disease, fibromyalgia, and depression."
The IOM criteria do not demand any immune symptoms in their core symptoms list and only cite one neurological symptom as a choice of 2. How can you define a neuroimmune disease with no symptoms of neurological or immunological dysregulation? Because there are no exclusions listed, many people suffering from medical or psychiatric diseases with similar symptoms will be diagnosed with the disease. There are no recommendations for specific testing to confirm a diagnosis. It might be true that we presently do not have one specific biomarker for diagnosing ME (2-day CPET testing is not feasible for many patients), but there are tests which in tandem with identified symptoms can help confirm a firm diagnosis (see a list of tests below).
Many Weaknesses with the CDC Website Revision
Laundering CDC information through the IOM: Epidemiology figures, data about % diagnosed and data about economic burdens are all CDC data yet CDC attributes them to the IOM report. The IOM report is based on a literature review of existing data and studies (of which most ME research based on the CCC and ICC were excluded). The IOM panel did not do any of their own investigations, and the figures listed on the CDC website are original CDC data.
Whitewashing the severity of the disease: The website states - “People with ME/CFS are not able to function the same way they did before they became ill.” In actuality, more than half the patients are unable to work at all, and 25% are bedbound. They make it sound like it’s just a mild annoyance!
Deflecting responsibility for medical negligence: They blame problems with diagnosis and inadequate medical care on several factors like the lack of medical education yet do not admit that it has been their decades-long disrespect, injustice, and malfeasance which have adversely impacted progress with this disease.
Ignoring current medical scientific studies: The CDC falsely state that there are no laboratory tests, yet the ICC lists many. Here are some of them:
NK cell function test (low)
Cytokine Panel (distinct increased inflammatory cytokines)
Elevated oxidative stress markers (worsened by exertion),
2-day CPET (abnormalities - worsening on the second day)
Pathogens (abnormalities in EBV, CMV, hhv6, enterovirus, chlamydia pneumonia, parvovirus b19, mycoplasma, Borrelia, 37 kDa 2-5A RNase L immunoassay)
Spect scan with contrast (lowered cortical/cerebellar blood flow)
Intestinal bacteria (increased d-lactic acid)
Tilt table test (to confirm OI)
ATP profile (lowered ATP production)
QEEG (abnormalities in left frontal region, elevated theta and beta frequencies)
No recommendations for differential diagnostic tests: Such as the ones recommended in the ICC:
Infectious disorders: TB, AIDS, Lyme, chronic hepatitis, endocrine gland infections
Neurological disorders: MS, myasthenia gravis, B12;
Autoimmune disorders: polymyositis & polymyalgia rheumatica, rheumatoid arthritis
Endocrine disorders: Addison’s, hypo & hyperthyroidism, Cushing’s Syndrome; cancers
Anemias: iron deficiency, B12 [megaloblastic]; diabetes mellitus; poisons.
Misrepresenting symptom of PEM: CDC does not mention an important feature of PEM - a delayed reaction. The ICC describes PENE (post-exertional neuroimmune exhaustion): a pathological, low threshold of fatigability • post-exertional exhaustion & symptom flare - immediate or delayed, & not relieved by rest • prolonged recovery period. The ICC goes further and explains - Fatigue and pain are part of the body’s global protection response and are indispensable bio alarms that alert patients to modify their activities to prevent further damage.
Oversimplifying the definition of a complex disease: HHS’ charge to the IOM committee in creating another government-sponsored definition was to come up with simple criteria that any medical professional can use to diagnose patients. ME is a multi-system complex disease - similar to lupus in its complexity. The resulting IOM definition with its simple checklist of 3 core symptoms and 1 more of 2 choices, fails in distinguishing ME patients from other psychological and physical diseases. (as shown above)
Recommending yoga and tai chi: The CDC cites yoga and tai chi among complementary therapies. These movement therapies should not be recommended for ME patients. They might be relaxing for healthy people but, for ME patients who suffer from OI, POTS, and vertigo - these movements can be too rough and may induce a crash. Most patients with ME have difficulty standing and/or lifting their arms up. A quarter of ME patients can’t even get out of bed! On which scientific studies is the CDC relying on upon making these recommendations?
Refusing to recommend resting: Dr. Melvin Ramsay, in his publication, ”Myalgic Encephalomyelitis: A Baffling Syndrome With a Tragic Aftermath”, wrote: “those patients who are given a period of enforced rest from the onset have the best prognosis.” ME patient experiences and accounts have confirmed that rest and pacing are the best way to avoid crashing and to prevent possible permanent harm.
Being vague about the injury caused by activity: "ME/CFS may get worse after people with the illness try to do as much as they want or need to do.” As ME patients know very well, it is not a matter of “may” - it is a certainty!
Omitting qualification of core symptoms: the CDC website does not qualify the intensity and frequency demanded in the core symptoms for diagnosis. These symptoms, if only experienced occasionally and mildly, are common.
Linking to harmful treatments: The information to Healthcare Providers sections includes a link to The Alberta, Canada Guidelines which recommend graded exercise therapy (GET) and CBT* as a treatment. [*Edit 4:30 pm est 12/28/17 "and CBT"]
Dangerous Information Provided Through Links
CDC took over a year to work on revising the website with the help of a stakeholders’ working group and a steering committee. It is therefore alarming to see that it contains links to dangerous and outdated information.
The CDC website resources provide a link to NIH Director’s Blog: Moving Toward Answers in ME/CFS, March 2017. Dr. Collins blog links to Medline where the following information about ME/CFS is posted for medical professionals.
Study recommending exercise, stating the following: “Patients with CFS may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes.”
Study recommending CBT: “CBT is effective in reducing fatigue severity in QFS patients” (qfs = cfs patients with q fever).
Study recommending live CBT as opposed to via telephone. The authors state: “However, only the live format was associated with physical symptom improvements, with specific effects on post-exertional malaise, chills, fever, and restful sleep.”
Study on Fear of Movement and Avoidance: “The review revealed that fear of movement and avoidance behavior toward physical activity is highly prevalent in both CFS and FM population, and is related to various clinical characteristics of CFS and FM, including symptom severity and self-reported quality of life and disability. “
The Medline children’s section links to Chronic Fatigue Syndrome (For Parents) (Nemours Foundation). They recommend “regular, carefully planned exercise, which helps by providing healing movement, increased energy, and feelings of well-being” and “..studies have found that individuals with the best chance for improvement are those who remain as active as possible..”
Some Strengths with Revision
Warning about antidepressants: The CDC listened to stakeholders’ input and added a warning about the adverse effects of the use of antidepressants in patients. They write: “However, doctors should use caution in prescribing these medications. Some drugs used to treat depression have other effects that might worsen other ME/CFS symptoms and cause side effects.”
Removing recommendation for GET: The CDC finally, after decades of recommending the harmful graded exercise therapy as a treatment, have silently removed it from their main website, but it remains as a listed treatment in the links to the physician materials. They did not make a public comment about the dangers of “exercise” or “pushing through” or “increasing activities” for 'ME/CFS' patients. They removed GET from the main website but, as cited above, many links to recommendations to exercise still remain. Also, what is really needed is a warning, as they have done with antidepressants, that exercise may be harmful to patients. Not only will it cause crashing but in some cases, it may cause long term impairment.
Removing recommendation for CBT: The CDC replaced cognitive behavior therapy, which could mean therapy that tells patients to ignore their illness and limitations -with the sensible: “Talking with a therapist to help find strategies to cope with the illness and its impact on daily life and relationships.”
The CDC website revision has incorporated the untested IOM/SEID criteria which are not ME criteria. Many other issues remain on the website which we outlined above; therefore, we strongly disagree with other advocates in the community who have called the changes to the CDC website as progress for people with ME. It is just more of the same deceptive tactics that have plagued the field for the last 30 years. The new CDC website is not about ME, but rather about a redefined, less accurate version of CFS that the CDC is now calling "ME/CFS."
Myalgic Encephalomyelitis International Consensus Criteria (ICC) - http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
International Consensus Primer for Medical Practitioners (ICC primer) - http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf
Questionnaire for ICC diagnosis - http://www.meadvocacy.org/the_international_consensus_criteria_what_is_it_do_i_fit_the_criteria
Analysis of IOM criteria + CFSAC recommendations and comparison to CCC-
TruthCures.org Lobbying on June 5, 2017
FOR IMMEDIATE RELEASE
Washington, D.C., June 5, 2017
Representatives of TruthCures are lobbying June 5-9th and meeting with Senate Judiciary Committee Members to turn over evidence and demand a hearing.
Patients and advocates are charging the USDOJ with failure to act on a whistleblower’s complaint of research fraud and falsification of information for personal financial benefit. Charge Sheets reveal fraud and racketeering within the CDC and private entities. The USDOJ was contacted in 2003 and still have yet to respond to the situation and prosecute the offending criminals.
The leaders from TruthCures/SASH (a group known as the Society for Advancement of Scientific Hermeneutics) state in their criminal charge sheets that there’s a common disease mechanism linking myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), Lyme disease, Gulf War illness, fibromyalgia and autism.
Following the advice given by Jeff Sessions’ legal staff during the 2015 SASH lobbying efforts - TruthCures and SASH are now pursuing a hearing of the Senate Judiciary Committee to refer the Lyme Crime to the USDOJ for prosecution. This is the current mission.
Through a massive compilation of published scientific research and public-record documents, TruthCures and SASH, recognize the common mechanism of fungal-induced immunosuppression, known to the National Institutes of Health (NIH) as “Post-Sepsis Syndrome.” They report that such immunosuppression leads to the chronic reactivation of multiple viruses such as Epstein-Barr Virus (EBV), Cytomegalovirus (CMV), HHV-6 and opportunistic infections, leading to cancers and an AIDS-like disease. TruthCures further shares evidence that the interaction of fungi with attenuated viruses in vaccine vials causes the reactivation of those viruses and ultimately, the diseases they are meant to prevent.
The group’s primary charge is the USDOJ’s failure to take action on a whistleblower complaint that was filed in July 2003 by Kathleen Dickson, a former analytical chemist at pharmaceutical giant Pfizer. Her complaint that CDC officers, Yale University and others committed research fraud to falsify the current Lyme disease case definition (aka Dearborn) and the two-tiered testing in order to falsify the outcomes of the OspA vaccine (LYMErix), which was pulled from the market after an FDA ultimatum to the manufacturer.
The very same government employees who committed these crimes gained substantial financial rewards from a monopoly on all tick-borne diseases, vaccines and test kits. Additionally, their falsification of the Lyme disease case definition and treatment guidelines have left 85% of chronic Lyme sufferers unable to obtain diagnosis, treatment, or insurance coverage for their AIDS and cancer-like illness.
An abundance of scientific and historical evidence are presented in the charge sheets. Many of the citations refer to the criminals’ own peer-reviewed, published research papers and patent documents, to deny basic healthcare to an estimated 30 million sufferers in the United States.
Visit TruthCures.org for access to the full charge sheets.
May12.org is endorsing TruthCures’ lobbying efforts, and is dedicated to raising awareness of complex immunological and neurological diseases such as myalgic encephalomyelitis, chronic fatigue syndrome, Gulf War illness, fibromyalgia and chronic Lyme disease.
MEadvocacy.org is a project of May12.org.