Before the meeting, we sent the CDC a letter with a detailed list of questions you can read here. The CDC reached out to us and has offered to meet with #MEAction to discuss any issues that they weren’t able to address on the SEC call. We are in the process of scheduling a meeting and will update the community on how that meeting goes.
On Wednesday, September 23 the CDC held its ME/CFS Stakeholder Engagement and Communication (SEC) conference call and the #MEAction community showed up to make our voices heard! Here is our initial summary of what you need to know.
We will publish a more detailed report on CDC program initiatives and various issues discussed on this call after we’ve had a follow-up discussion with CDC ME/CFS program staff where we can probe further on the questions we raised in our letter.
We’ve divided this summary into the following sections, so it is easy to find the information you’re most interested in:
- General Reminders
- CDC Program Overview
- Highlights from Community Q&A
1. GENERAL REMINDERS
- The audio recording, transcript and presentation slides from this call will eventually be posted on the CDC website, but the process can take weeks before it is available.
- The next CDC SEC call is currently planned for early spring 2021.
- Screenshots from the webinar are available here. They are mostly from Dr. Maureen Hanson’s presentation of her research on immune dysfunction in ME/CFS.
- Dr. Maureen Hanson (Cornell University) was the guest speaker and presented on the topic of “Immune Dysfunction in ME/CFS.” Screenshots of the presentation slides are available here. Her presentation referenced this published article.
2. CDC PROGRAM OVERVIEW
1. New Initiatives
1. Funding Studies
CDC says it is in the process of funding studies to learn about long-term complications of COVID-19, and to determine risk factors for and natural history of post-COVID fatiguing illnesses. The CDC ME/CFS program has also been providing information about ME/CFS and approaches to identifying and managing post-COVID fatiguing illnesses to CDC’s COVID response team. We have questions about this update and will be following up with CDC to obtain more information:
- Will ME/CFS be consistently accounted for in CDC studies on the long-term complications of COVID-19?
- How would ME/CFS be measured?
- What specific information and treatment guidelines is the CDC’s ME/CFS program giving to the COVID-19 response teams, and how frequent are their communications?
2. Website Update
CDC said they “added a brief section to the CDC ME/CFS website on what we know about the relationship between COVID-19 and ME/CFS, as well as some practical guidance for people with ME/CFS
3. Emerging Infections Program
The CDC’s ME/CFS program is beginning a new project in collaboration with California’s Emerging Infections Program (EIP), and Kaiser Permanente, Northern California. The project has been officially named “Surveillance to Optimize Protocols for Early Identification and Sub-grouping of ME/CFS” with the acronym of “STOP ME/CFS”. It aims to develop and initiate methods for surveillance to identify new onset ME/CFS; identify risk factors for progression from prolonged fatigue to ME/CFS; and characterize ME/CFS subgroups.
4. National Health Interview Survey
The CDC ME/CFS program has a new initiative it is working on with the CDC’s National Center for Health Statistics for the National Health Interview Survey (NHIS). NHIS is a survey of households designed to represent the U S civilian non-institutionalized population. Survey data is used to analyze health trends and track progress towards achieving national health objectives.
The ME/CFS questions developed for the behavioral risk factor surveillance system (BRFSS) will be added to the 2021 NHIS survey. Once complete this will provide national data on:
- whether those surveyed had received a diagnosis of ME/CFS from a healthcare provider, and
- whether they still have ME/CFS.
2. Project Updates
1. ME/CFS Treatment Guidelines
CDC plans to develop clinical guidelines for the management and treatment of ME/CFS. There are currently no government guidelines. Healthcare providers, newly recognizing their patients with ME/CFS are often left wondering what to do, and CDC believe practice guidelines could help fill this gap.
CDC says it is committed to a process for guideline development that will be evidence-based, transparent and open.
The first step in guideline development was a systematic evidence review of the scientific literature on the management of ME/CFS, which has been drafted by Oregon Health Sciences University (OSHU), and it is currently under review by CDC.
CDC has not said what the public input process will be on this evidence review, or when it will start, but they did announce that it will include a 90-day public comment period in order to allow sufficient time for community feedback.
Why this matters: In 2014 OHSU did a ME/CFS evidence review for the U.S. Agency for Healthcare Research and Quality (AHRQ). The community spent 2 years fighting for a reanalysis which eventually downgraded the original conclusions on the effectiveness of cognitive behavioral therapy (CBT) and graded exercise therapy (GET).
#MEAction will keep you informed about how to participate in the public input process when more details have been announced.
2. Adult and Pediatric MCAM Study
CDC plans to publish 3 papers by the end of the year on the Multi-Site Clinical Assessments of ME/CFS. The topics of the papers will be:
- Description of patients with ME/CFS by clinic;
- Methods paper on our NK cell function study; and
- Description of the results of cardiopulmonary exercise testing (CPET)
3. HIGHLIGHTS FROM COMMUNITY Q&A
The community was given 33 minutes for Q&A with the CDC. There were 11 community stakeholders who had the opportunity to raise questions or make comments. Thank you to all of those from the #MEAction Network who participated in the call, including the seven advocates who showed up to raise the questions from our letter to the CDC. We will continue to engage with the CDC around these concerns and update you as our discussions progress.
1. Advocates press for disavowal of CBT and GET
The first question came from #MEAction advocate Denise Lopez-Majano, who posed one of the 19 questions #MEAction had submitted to the CDC. Denise stated:
There is evidence that COVID-19 long-haulers at risk of developing ME/CFS will experience harm if they undergo cognitive behavioral therapy (CBT) and graded exercise therapy (GET) and yet, medical entities continue to recommend them which increases the risk of additional harm. How soon will CDC issue a firm statement refuting GET and CBT treatments, knowing their potential to do harm? It’s not enough to get Mayo to take down recommendations for GET though we are glad that’s been done. These recommendations are on many many websites and the recommendations are continually being made to many people. How soon will CDC widely disseminate this statement to ensure that all healthcare providers are aware and informed?
Another caller, Mandy Kramer, followed up on Denise’s point to emphasize to the CDC that the removal of CBT/GET recommendations, and inclusion of recommendations on pacing to the CDC website didn’t go far enough. “It’s not enough to publish guidance about what should be done [i.e. pacing]. It’s crucial to publish guidance about what should not be done [i.e. CBT/GET]… the CDC needs to disavow this nonsense.”
“…the CDC needs to disavow this nonsense.”Mandy Kramer, speaking about CBT & GET
In her critique of several existing references to CBT and GET in CDC-sponsored continuing medical education Mandy said, “The combination of GET and CBT is derived only from the discredited PACE trial. …The theory behind combining GET and CBT for ME is to use CBT to convince people with ME that they are not physically ill, and to use GET to reverse their physically deconditioned state. We know that this is entirely false, unproven, and cannot be reconciled with the 2015 Institute of Medicine report in ME/CFS. Nor can it be reconciled with findings of biomedical research on ME, including the beautiful work of Dr. Maureen Hanson whom we hold in the highest regard.”
#MEAction advocate Claudia Carrera attempted to follow-up on the previous callers’ points to underscore that the PACE trial has been thoroughly discredited, and that the GET and CBT treatments approach doesn’t show any benefit to patients when analyzed in a statistically appropriate way–and this is why it should be actively disavowed by the CDC. The CDC however cut-off further discussion and said because there wasn’t enough time they needed to move on to other topics.
In their defense the CDC stated that all their materials clearly state that ME/CFS is a biologic illness and that the “webpage recommends activity management, it cautions against the harm of exercise beyond the energy envelope.” They claimed they “do not have the ability to dictate to everybody what they do, but our message is very clear. We have recommended the energy envelope and pacing as the very best options for controlling the symptoms.”
#MEAction will continue to press the CDC to do more to prevent the harms from inappropriate treatments based on a flawed theory of ME/CFS. We urge the CDC to issue a firm statement refuting GET and CBT treatments and widely disseminate this statement to ensure that all healthcare providers are aware and informed.
2. Outreach to Black doctors
#MEAction Georgia advocate Wilhelmina Jenkins pointed out in her public comments a recent news story about the National Medical Association, the historically black equivalent of the American Medical Association. The article talked about how necessary it was to reach black patients with COVID-19 concerning vaccination. “Black patients need to find doctors whom they could trust in order to enter any type of vaccine or treatment program,” explained Wilhelmina.
“Eighty percent of black people go to black doctors. Those doctors just don’t have the information that they need.”Wilhelmina Jenkins, #MEAction Georgia
Wilhelmina highlighted the disproportionate impact of COVID-19 on people of color, and the studies finding the rates of ME/CFS being higher among black and Latino respondents compared to the general population, which show how enormous the need is to reach out to these populations. She asked “What concrete steps is the CDC’s ME/CFS program taking to reach doctors who serve people of color, including outreach to historically black medical associations and schools?” And she went on to suggest, “Could we not work with the National Medical Association (and many other associations), the historically black medical schools like Morehouse right here in Atlanta (and others), to see that correct information goes out to our doctors who treat primarily minority communities? Eighty percent of black people go to black doctors. Those doctors just don’t have the information that they need.”
The CDC pointed to their recent COVID-19 Broad Agency Announcement: Developing Strategies for Protection, Prevention & Control in Communities which they said had awarded a contract to ME/CFS researcher Dr. Nancy Klimas’ Institute for Neuro Immune Medicine, and said the study will be “very representative of people of color.” They said they had also reached out to Morehouse School of Medicine to begin planning for some educational activities, but that the conversation was still very early in the process. Dr. Beth Unger stated, “We need to do more. And we have that as one of our top priorities.”
#MEAction is encouraged by these initial efforts by CDC; however we believe that input from the patient community is essential to the success of these efforts. #MEAction will continue to push for a seat at the table for these efforts and for further outreach to bring information about ME/CFS to underserved communities.
3. A long-hauler shares her story
The final public comment came from Lisa Rysinger, who called in to share her powerful story and ask the CDC for help:
“I unfortunately have been sick with COVID-19. I’m a long hauler for what will be 7-months this week. I would like to know what could possibly be done to help those of us that got sick at the very beginning of this and were denied testing. We have no positive COVID test and we require multiple specialists working in conjunction with one another and we’re not eligible for any of the long-haul COVID clinics.
“We’re going to doctor after doctor, after doctor and not getting any help. …I would like to have some place to go… instead of just passing us back and forth and saying, it’s not my problem.”Lisa Rysinger, COVID-19 long-hauler
For instance, I have lost 22 pounds. I’m down to 101 pounds, and I can’t eat 95% of the foods that my body suddenly thinks I’m allergic to and they’re triggering vascular symptoms and I’ve consulted over a dozen specialists for a month. I’ve spent thousands of dollars trying to get help. None of the specialists think it falls under their category. It falls under somebody’s category–and I need somebody to help me. I obviously need to be able to eat food and digest it properly to be able to live!
So these are very concerning problems and we’re falling through the cracks. I’m in a group with 17,000 other long-haulers from over 25 different countries. And there’s a whole subset of us that have sudden food allergies to foods that we’re not allergic to that are dropping tremendous amounts of weight.
We’re going to doctor after doctor, after doctor and not getting any help. I would like somebody to start researching us. I would like to have some place to go where somebody like the specialist could work in conjunction with one another, instead of just passing us back and forth and saying, it’s not my problem. Is there anything that you guys can do to help us?”
The CDC recommended to Lisa that she try to get antibody testing and continue to document the long term consequences of COVID. They recommended she find a clinician who understands how to care for patients and provide supportive care, but they were unable to provide any specific referral.
#MEAction will continue to urge federal agencies such as the CDC and the NIH to do more to address the ME/CFS and long COVID crises. #MEAction has been hosting webinars on the connection between ME/CFS and long COVID for patient long-haulers and for clinicians to improve access to diagnosis and treatment.