USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024

rvallee said:
They won't admit they were wrong. At this point it must have to do with liability, as long as they don't admit they were wrong, ME can continue to be suppressed.
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rvallee said:
Doubtful there is any other reason at this point,
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I suspect it's not limited to liability concerns. Naturally there may be related concerns in play - for instance, insurance lobbies - but I imagine, because we're speaking the US, entrenched worries may run a little deeper.
 
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Trial By Error: Speaker at CDC Event Promotes CBT and “Very Gradual” GET

The US Centers for Disease Control and Prevention has a long history of missteps when it comes to the illness or cluster of illnesses currently called ME/CFS—as anyone who has read Osler’s Web knows. In the more recent past—2017–the agency dropped its unfortunate endorsement of the discredited GET/CBT treatment approach but made no public comment about the move until I asked about it. The agency argued that people misunderstood or were confused about what it meant by the terms GET and CBT. This explanation was laughable. No one misunderstood anything. After all, the agency had been citing the PACE trial.

Since then, the CDC has steadfastly refused to acknowledge that its previous reliance on PACE and related research was a serious mistake. This is the country’s leading public health agency. It is disgraceful that no one in leadership has taken responsibility and apologized for spending years citing a trial that qualifies–in my opinion as a public health professional–as a case of serious research misconduct.

This hedging attitude might help explain why the CDC recently hosted a speaker who recommended CBT and GET—albeit “very gradual” GET–as possible treatments. The speaker, Stephen Gluckman, is an infectious disease physician at the University of Pennsylvania. His online talk during the agency’s May Stakeholder Engagement and Communication call was called “The Management Options (yes, there are options) for People with ME/CFS.”

https://www.virology.ws/2022/05/23/...-cdc-event-promotes-cbt-and-very-gradual-get/
 
Kalliope said:
Podcast from CDC Featured Podcast on ME:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M-E-C-F-S): Better Understanding of a Complex Illness

Interviews Dr. Unger
Duration: 16 minutes
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Sympathetic but pretty bland stuff.
I suppose the odd person might not like the suggestion that people might have been under physical or mental stress before their illness.
I don't think she was strong enough on highlighting the epidemiological evidence showing it can often follow an infection.
But then she quoted very little research.
 
Crosspost:
It was going so well until about the 8 minute mark:
"We have not yet identified any one cause, and it’s possible M-E-C-F-S has more than one cause. Some patients report they had a common infection like the flu and then just never fully recovered, and instead developed more long-term symptoms of M-E-C-F-S. An infection could trigger ongoing immune damage or an immune system that is weakened. Physical or emotional stress sometimes precedes M-E-C-F-S symptoms. A stressful event can impact the hypothalamic-pituitary-adrenal axis which can result in an imbalance in the body’s main stress hormone, which then leads to changes in the person’s body chemistry. Sometimes we find several members of one family develop M-E-C-F-S, so it’s possible there may be a genetic component or a shared environmental exposure."

Arghh. Maybe the HPA axis is involved but where's the decent evidence for that? Really disappointing to see the CDC spreading unevidenced information, especially when they actually got a lot right in this podcast.
 
Dolphin said:
I suppose the odd person might not like the suggestion that people might have been under physical or mental stress before their illness.
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I guess that makes me an odd person :)
It's not so much the suggestion that I or others were under stress before the illness, although I don't think I was, certainly not compared to other times in my life when I was more stressed and didn't get the illness.
It's that unevidenced statements can result in research funds and time being wasted on dead ends, when some careful looking at the research that has been done would avoid that waste.

The HPA axis idea in particular so easily gives encouragement to the people on the 'mindfulness/positive thinking/change your faulty patterns of thinking' bandwagons, which harm patients and have been shown to not deliver any positive therapeutic outcomes.
 
It is completely surreal that there is no mention of the huge influx of people with Long COVID who now meet ME/CFS criteria or how that number greatly raises the total number of people now living with ME/CFS well beyond the 2.5 million that Unger states. :banghead:
 
the CDC podcast said:
But how does the patient community stay informed about the work going on within CDC?

[Unger] Well thank you for asking. We have several regular meetings which provide information to people with M-E-C-F-S and help us communicate directly with those who are living with the disease. One of the main ways we do this is through our Stakeholder Engagement and Communication calls (or S-E-C) calls that happen twice a year. During S-E-C calls, we provide updates on what CDC’s M-E-C-F-S program is doing and host guest speakers who specialize in diagnosing and treating people with M-E-C-F-S.
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That would be the SEC calls where David Tuller noted that the guest speaker, Stephen Gluckman, was recommending CBT and GET (link in Andy's post above).

The speaker, Stephen Gluckman, is an infectious disease physician at the University of Pennsylvania. His online talk during the agency’s May Stakeholder Engagement and Communication call was called “The Management Options (yes, there are options) for People with ME/CFS.”
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A webinar recording Featuring a presentation titled, “Myalgic Encephalomyelitits/Chronic Fatigue Syndrome Management Options,” by Dr. Stephen Gluckman, Professor of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA and updates from Elizabeth Unger, Ph.D., MD, Branch Chief of Center for Disease Control’s Chronic Viral Disease Branch, and a question and answer with Dr. Gluckman.



1:11
Our goals during these calls are to provide updates on the work of CDC's ME/CFS Program and for you to hear
1:18
from external experts in the field. Today, we'll hear program updates from Dr. Elizabeth Unger.
1:24
She is the Chief of CDC's Chronic Viral Diseases Branch. Then we'll turn it over to our guest speaker
1:31
from the University of Pennsylvania's Perelman School of Medicine, Dr. Stephen Gluckman.
1:37
After Dr. Gluckman's presentation, we'll have a Q and A session. During today's Q and A, you will have the opportunity
1:44
to ask questions through the webinar platform or by phone if that's how you joined today.
1:50
We'll provide more information on that when we get to the Q and A session. Before we start, I'd like to remind everyone the call is open
1:58
to the public, so please use discretion in sharing personal information. We're also recording this call, so please disconnect now
2:06
if you have concerns about that. We will post the transcript and video as soon as possible after the call.
2:13
Now we'll turn it over to Dr. Unger to start the Program. Welcome, Dr. Unger.
2:21
>> Thank you, Kate, for that introduction. I'd like to welcome everyone to CDC's 19th SEC Call.
2:29
As in the past SEC calls, I'll start by providing some updates on our program, and then we'll hear from our guest speaker Dr. Stephen Gluckman.
2:36
I want to really thank Dr. Gluckman for taking the time out of his busy schedule to be here with us today,
2:41
and we're glad that everyone can join us for this call. Now for the latest updates.
2:47
We recently posted the summary report, meeting agenda, participant call list, and slide presentations
2:54
from the third Roundtable meeting, titled "Working Better Together," on our CFS website
3:00
under the meetings tab. We continue to focus on better understanding the overlap
3:05
between ME/CFS and Post-COVID conditions, often referred to as long COVID.
3:10
As we've mentioned before, the similarities between the two illnesses provides us with a unique opportunity to study
3:16
and hopefully gain a better understanding of both conditions. Some of the long COVID studies that we are participating
3:23
in were introduced during the December SEC call, but I wanted to provide more updates.
3:29
COVID-UPP, which stands COVID, Understanding the Post Viral Phase, is underway.
3:35
This study is led by Dr. Nancy Klimas at the Institute for Neuro-Immune Medicine at Nova Southeastern University.
3:42
Her team, in collaboration with several large health centers in southern Florida, continues to enroll patients
3:49
who have fatigue and other symptoms three to six months after their initial COVID diagnosis as well if patients
3:55
who had fully recovered from COVID. The study uses online surveys to gather follow-up information
4:02
about participants' health for up to three years, allowing researchers to observe the course of their illness over time.
4:09
They've piloted the protocol for the in-depth clinical evaluation, that includes laboratory testing and cognitive evaluations,
4:18
with some participants. A subset of participants who continue
4:23
to have symptoms following COVID and a comparison group who have fully recovered, will be enrolled in this phenotyping phase to allow a direct comparison
4:31
of patients with -- with ME/CFS. As part of another study called COVID RELIEF, which stands
4:38
for Research on COVID-19 Long Term Effects and Risk Factors, our collaborators at the University
4:45
of Washington are analyzing electronic health records from inpatient and outpatient visits from February 19th,
4:52
2020 through the end of December 2021 to identify conditions and characteristics associated
4:59
with severe acute COVID infections or long-term illness after COVID.
5:04
They will soon begin contacting patients to determine whether they are interested in participating in the second phase of the study.
5:11
During this second phase, a subset of participants will complete a questionnaire about their health and provide self-collected blood
5:18
and saliva specimens for investigation of genetic and other risk factors that may play a role
5:23
in delayed recovery from COVID. This information may be useful for identifying factors
5:29
that may cause patients to have different responses to COVID and for ensuring that patients get the right level
5:34
of medical care. The first abstract from this study, Healthcare Utilization and Diagnosis in COVID-19 Patients Followed for Up
5:41
to One Year, has been accepted for presentation at the International Conference on Emerging Infectious Diseases in August 2022.
5:51
During the last call, we briefly mentioned the Long COVID and -- sorry, Long COVID and Fatiguing Illness Recovery Program.
5:59
This is an evaluation project we are working on with the Family Health Centers of San Diego,
6:04
the ECHO Institute at the University of New Mexico, The University of Washington Post-COVID Rehabilitation
6:11
and Recovery Clinic, and the University of Colorado. This project is designed to empower primary care providers
6:18
to manage patients with long COVID and similar complex post-infectious illnesses such as ME/CFS.
6:24
Enrolled healthcare providers will be randomly assigned to either the intervention arm, which includes weekly case-based online mentoring
6:32
from multi-disciplinary experts using the ECHO platform, as well as monthly educational webinars held through ECHO,
6:39
or the comparison arm, which includes only the monthly ECHO webinars.
6:45
The ECHO webinars began in January 2022 and are open to all.
6:51
The webinars bring together primary care clinicians, medical specialists, patients, and caregivers using a multi-disciplinary team approach
7:00
to share emerging knowledge about post-COVID conditions, ME/CFS, and other post-infectious
7:05
chronic illnesses. Since the webinars began, attendance has grown to more than 500 people per session.
7:12
Presentations are led by academic medical experts who specialize in conditions experienced by patients
7:17
with long COVID, such as neurology, pulmonology, cardiology, and ME/CFS.
7:23
Participants can ask questions of the presenters. The webinars also encourage participation by patients
7:29
with ME/CFS or long COVID. Information about upcoming webinars can be found online
7:34
by searching LC and FIRP and ECHO. The URLs will also be available
7:41
in the materials we post after this call. As many of you know, one
7:46
of our programs key activities involves developing continuing medical education, or CME courses, with Medscape.
7:54
Our third Spotlight CME course called A Fresh Look at ME/CFS, Diagnosis and Management of a Multi-symptom Illness,
8:02
was released in December 2021. We're excited to report that the course has reached more
8:08
than 3,600 learners and 1,800 test-takers, nearly 1,500
8:13
of whom have earned the CME certificate. The course can be accessed through the CDC ME/CFS homepage
8:21
and links directly to Medscape. We also recently posted a link to the course on the CDC TRAIN learning network
8:28
to attract more healthcare professionals to this new course. Our website features two other active CME courses,
8:36
including one by today's guest speaker, Dr. Stephen Gluckman. His course is titled, ME/CFS a Case-Based Learning Module.
8:43
The other course is by Dr. Nancy Klimas, titled Test Your Strengths and Gaps in Knowledge of ME/CFS.
8:52
So far, we've educated more than 60,000 learners through Medscape CME courses. We continue to publish manuscripts based on findings
9:01
from our MCAM or Multisite Clinical Assessment of ME/CFS study the -- which ended in 2020.
9:08
During previous calls, we mentioned two of our manuscripts were in journal review. We're happy to share with you
9:13
that both were recently published. The first paper was published in February 2022 in the Journal
9:19
of Translational Medicine, titled, Physiologic Assessment of Orthostatic Intolerance in ME/CFS.
9:25
This paper assesses orthostatic intolerance using a tool called the NASA Lean, a clinical tool shared with the MCAM group
9:32
by Dr. Benjamin Natelson. The second paper was published in March 2022
9:37
in the PLOS One Journal and is titled, Cardiopulmonary Metabolic and Perceptual Responses During Exercise in ME/CFS,
9:46
a Multi-site Clinical Assessment of ME/CFS (MCAM) sub-study. The paper focused on response to exercise
9:53
in patients with ME/CFS. Dr. Dane Cook, the lead author on this paper, presented data
9:58
from this study during our SEC call in May of 2021.
10:03
You can find the call transcript and additional information on ME/CFS on our website.
10:09
Other papers in progress include those on natural killer cell function, cognitive testing, and a comparison of patient characteristics using
10:16
standardized measures. We continue to work with the survey experts from American Institute for Research to validate the use
10:23
of PROMIS measures of sleep and pain in people living with ME/CFS. We expect to have at least three
10:29
of these manuscripts published next year. The ME/CFS program continues its partnership
10:36
with the National Association of School Nurses to collect information about ME/CFS in school children.
10:42
The first phase of the School-Based Active Surveillance came to a close in September. We're working on a brief paper to share what was learned
10:49
from the feasibility assessment of this process, using the phase one data from six pilot sites.
10:55
During the second phase of this study, we will expand to include more schools and refine the process to enable more schools to contribute schools --
11:02
children's health data. As part of this partnership, school nurses are educated
11:08
about the symptoms of ME/CFS and how to identify the illness among students. School nurses from participating schools will collect data
11:16
on chronic absenteeism and chronic conditions, including ME/CFS and its core symptoms, along with diabetes
11:24
and asthma, during the next three years. Yesterday, we along with many others,
11:30
observed International ME/CFS Awareness Day. CDC participated in ME/CFS Awareness Week
11:36
by increasing social media posts, updating the CDC ME/CFS features webpage, and adding a podcast.
11:44
Visitors will find several updates to our ME/CFS Awareness webpage, including recent program updates
11:50
and information about ME/CFS and post-COVID conditions. We've been very active on social media and frequent Tweets
11:58
through the National Center for Emerging and Zoonotic Infectious Diseases Twitter account,
12:03
and we will continue to post articles and information for the remainder of this month. For the first time, I went into the audio booth at CDC
12:10
to record a podcast about ME/CFS. In particular, I wanted to encourage audiences to listen
12:16
and learn from people living with ME/CFS. You can assess the podcast on our ME/CFS website
12:22
or on the CDC podcast page. You can also find it on Twitter by going to @CDC underscore NCEZID,
12:32
and be sure to share and like the Tweets. Our Voice of the Patient series continues to grow as more people
12:39
with ME/CFS come forward with a willingness to share their stories. We posted our eighth story in the series.
12:45
A married couple shares their first-hand account of life with ME/CFS and the impacts it has had on their relationship.
12:52
These stories have had hundreds of thousands of views during the past three years. Lastly, we're excited to announce the rollout of results
13:00
from our partnership with WebMD. During 2021, our program worked with WebMD
13:06
to launch an online survey about knowledge, attitudes, and beliefs of ME/CFS in the general public.
13:14
WebMD will highlight the results of this effort on the feature webpage, along with the video interview on its website.
13:21
Dr. John Whyte, Chief Medical Officer of WebMD, interviewed Dr. Valerie Montgomery Rice,
13:27
President of Morehouse School of Medicine, and Ashanti Daniel, a woman living with ME/CFS.
13:34
During this interview, we hear perspectives on the survey findings and the video interview will be posted
13:39
on WebMD/ Medscape website for a year. We hope it draws attention to ME/CFS
13:45
and how the results could help research and clinical practice. As part of this collaboration with WebMD, I participated
13:53
in an interview with Dr. Hector Bonilla from Stanford University, who was the speaker for our December SEC call.
14:00
We both commented on the survey results and the need to reach out to different target populations that are not yet benefiting from early diagnosis
14:07
or education about ME/CFS. And now, I would like to introduce our guest speaker,
14:13
Dr. Stephen Gluckman. Dr. Gluckman is a professor of medicine at the Perelman School of Medicine at the University of Pennsylvania in Philadelphia
14:21
and Medical Director at Penn Global Medicine. He received his medical degree from Columbia University,
14:27
completed his residency at the hospital of the University of Pennsylvania, and has been in practice for more than 20 years
14:33
in both infectious diseases and internal medicine. He's the author of the Up-to-Date article,
14:39
Clinical Features and Diagnosis of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome."
14:44
Welcome, Dr. Gluckman. >> Oh, thank you, I think I should share my screen, right?
14:53
So, you have to stop sharing if I'm going to share.
15:00
OK, let me try again.
15:08
I'm getting close. OK. I hope that's visible.
15:14
First of all, I really appreciate the opportunity to - to -- to do this.
15:20
It's an area that I've been involved with for many years now,
15:26
and I have fairly strong feelings about ME/CFS.
15:32
And I hope that the healthcare providers and patients
15:38
who are listening today will get something out of what I have to say.
15:52
It's supposed to move now, right? OK. It did.
15:57
Alright, let's start with some givens. This is a disease which is clearly exhausting for patients,
16:04
and it can be challenging for their physicians and other healthcare providers. Which means that many healthcare providers avoid seeing
16:14
these patients. That's not unique to where I practice.
16:21
I think that's something I've seen in many other areas of the country.
16:27
They're missing out on something, I think. These patients, though we today don't have a cure,
16:34
they can be managed -- often managed successfully by sympathetic
16:40
and skillful clinicians. And the successful management, I think, is really very rewarding.
16:47
I - I see patients with other medical problems, and -- am I'm not minimizing giving someone a script
16:56
to fix their high blood pressure. >> Excuse me, Dr. Gluckman. I'm sorry, I believe you have stopped sharing. Could you please reshare your screen?
17:02
>> Oh, OK, sorry. Let's see. I don't know how I managed -- I don't know I managed to do that, there is that better?
17:12
>> OK. You can go to display settings and swap your view up in the upper right-hand corner
17:17
because we're seeing your notes view. >> Really?
17:26
That? >> Yep >> Oh, OK. >> We're still seeing your notes view.
17:32
>> I swapped it. Really? I'll try again.
17:40
Swap presenter view and slide view. Swapped. No?
17:46
>> OK. Give us one second. We'll help you out if you stop sharing.
17:52
>> OK. That I know how to do, sort of.
18:17
>> Standby, Dr. Gluckman, we'll have your slides up in one moment.
18:22
>> OK, no, I'm in your hands because I don't know how
18:29
to do this, as is clearly evident. >> We've -- we've got you covered.
18:35
>> All right. Tell me when I should go. >> Will do. Here come your slides.
18:43
>> Now what? >> And when you're ready to proceed, you can just say next slide, so I believe you stopped on --
18:53
>> Slide 5. >> OK. So -- >> So you're going to - you're going to move them?
18:59
Is that the idea? >> Uh-huh. Yes. >> OK. >> Just there we go.
19:05
>> OK. >> And -- >> OK. I'm on. I'm ready, so -- whoops. Keep going. No. Back. Go back one.
19:22
That's where -- that's where I stopped. OK. >> OK. Thank you.
19:28
>> No, thank you. All right, so I was sort of commenting on the last moment
19:33
about successful management being rewarding, and then the example I gave was do see people with,
19:41
for instance, high blood pressure, and I do get them scripts to fix their high blood pressure, but it's - it's not nearly as rewarding as - as --
19:49
as managing patients with chronic fatigue syndrome. We develop a different relationship with them.
19:54
It's much, much, much closer, and I get a lot a lot more out of it.
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transcript first 20 minutes
 
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