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