USA: News from the Bateman Horne Center

ahimsa · Jun 6, 2023

This thread has news updates from the BHC.
For threads on useful resources provided by BHC see the Resources forum.

Ever-Growing Awareness by Lucinda Bateman, MD
Mar 2, 2022

https://batemanhornecenter.org/evergrowing-awareness/

batemanhornecenter.org said:

It has been my life’s work to raise awareness of ME/CFS. In 2000, I typed out “raise awareness of CFS and FM” in large font on a piece of paper and placed it under the glass of my desktop. Without a doubt, there was consistent slow progress over time, but now it has become exponential growth.

Journalists have been interviewing Dr. Yellman and me regarding Long COVID and its relevance to ME/CFS. Recent news stories have appeared in USA Today, National Geographic, Yahoo News, Vox, and North Jersey News. Journalists are asking more informed questions and articulating these long overlooked and understudied areas of science and medicine. We must all keep the conversations going in every arena. I admire and thank the patients who have shown the courage to speak out.
...
Before I close, I must say how proud I am of our BHC team that produced the “ME/CFS Crash Survival Guidebook.” Since the online introduction of the guidebook on February 3rd, there have been more than 18,000 webpage views and thousands reached on Twitter and Facebook. Feedback to BHC, especially from the severely ill, has warmed our hearts. Please share widely with anyone who may benefit.
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Andy · Apr 4, 2022

Four New Clinical Trials in 2022

"Many investigators pivoted to SARS-CoV-2 and COVID-19 science and medicine in 2020. We did too at BHC because we understood the opportunity the pandemic provided for “real-time” clinical research of post-COVID-19 sequelae and to share all we know about ME/CFS – prototypical post-viral illness. It has paid off. By June, we will have four studies for ME/CFS and Long COVID underway. We are accustomed to running multiple clinical trials each year but until now, it has been predominantly fibromyalgia trials. That all four of these trials are for ME/CFS and Long COVID is a testament to the growing awareness the pandemic has caused."

https://batemanhornecenter.org/four-new-trials-2022/

ahimsa · Jun 18, 2022

Adding to this thread to cross reference information about Bateman Horne Center (BHC) research that has been posted in other threads.

The BHC website currently lists three items on their active recruiting page:

* Endothelial Function and Upright Activity in ME/CFS and Long COVID
[forum thread on this study here - https://www.s4me.info/threads/usa-e...ight-activity-in-me-cfs-and-long-covid.28141/ ]

* RESTORE ME: A RandomizEd Double Blind Placebo Control Trial to Determine the EffectS of OxaloaceTate On ImpRoving FatiguE in ME/CFS
[forum thread on this study here - https://www.s4me.info/threads/usa-r...acetate-on-improving-fatigue-in-me-cfs.28140/ ]

* We Want You! Healthy Volunteers to Participate in Research

More details, and a link to sign up, can be found here: https://batemanhornecenter.org/research/#active-recruiting

EDIT: Updated to include another link

ahimsa · Jul 9, 2022

New blog post from the Bateman Horne Center, Why the 10-Minute NASA Lean Test?

https://batemanhornecenter.org/why-the-10-minute-nasa-lean-test/

Bateman Horne Center said:

Researchers at BHC, the University of Utah and Columbia University teamed up to publish our most recent paper, Orthostatic Challenge Causes Distinctive Symptomatic, Hemodynamic and Cognitive Responses in Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

The purpose of the paper is to show that orthostatic stress (i.e. standing in place) leads to abnormal, measurable changes in circulation that cause illness symptoms and negatively impact function in many people with ME/CFS and Long COVID.

This abnormal circulation triggers symptoms like fatigue or weakness, brain fog, achiness, palpitations, cold hands and feet, nausea, exercise intolerance and even PEM. The general term that describes this phenomenon is orthostatic intolerance (OI), which simply means that illness symptoms develop while upright, and tend to resolve or improve when lying down.
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Andy · Aug 2, 2022

"Big news! We are pleased to announce the Open Medicine Foundation (OMF) Supported Medical Education Resource Center (MERC) at Bateman Horne Center.
As OMF's 7th Center this expansion of BHC's education program will increase the number of #healthcareprofessionals equipped to diagnose and manage multi-system chronic complex disease (msCCD) like ME/CFS, FM, long COVID, and common coexisting conditions.
By joining forces we will expand the reach and impact on medical education https://batemanhornecenter.org/merc/"

https://www.facebook.com/batemanhor...gSn11oeZCUdP6bkaLCCvBnhgjXJ98irjK7WV3xycsgcXl

ahimsa · Aug 3, 2022

Blog post from Bateman Horne Center on the same subject as the previous post, OMF and BHC Join Forces to Improve Patient Care.

Lucinda Bateman said:

I am proud–and excited–to announce a new and important collaboration between BHC and OMF. We are jointly launching the Medical Education Resource Center (MERC) for multisystem chronic complex diseases (msCCD). Our two respected organizations will bring complementary strengths together, with a primary goal of improving access to informed and compassionate medical care for our stakeholders. We know that research progress and access to care are critical needs. We also know that well-educated providers will diagnose more patients and provide better care, which in turn will fast-track research progress.
...

Within the last 15-20 years, we have learned about conditions like, or comorbid with, ME/CFS, FM, and related illnesses, such as mast cell activation syndrome (MCAS), syndromes of orthostatic intolerance (OI), small fiber polyneuropathy (SFPN), hypermobile Ehler’s Danlos syndrome (hEDS), and others. We want to teach clinical providers to identify and manage these comorbid conditions, along with long COVID, which can lead to significant improvements in functional capacity and quality of life.

Our strategy and outreach will be broad and informed by oversight committees which include patients, caregivers, and professionals.
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ahimsa · Aug 16, 2022

A new video on Post Exertional Malaise (40 minutes) has been posted on the Bateman Horne Center YouTube channel:

https://www.youtube.com/watch?v=D75Tf7r92oY

From the video description field:

May 17, 2022
Bateman Horne Center has partnered with the University of Utah Health to conduct a Long COVID and Post-Viral Syndromes ECHO (Project ECHO). This series delivers information to healthcare professionals utilizing short didactics and case-based learning to enhance their ability to manage patients with long COVID, ME/CFS, FM, and related comorbid conditions.

In this presentation, Brayden Yellman, MD, reviews:
- The definition of PEM
- PEM presentation in post-acute sequelae of COVID-19 (PASC/long COVID), ME/CFS, and related post-viral syndromes (PVS)
- Triggers and PEM onset
- The science behind PEM: VAT reductions, decreased aerobic metabolism, altered cellular metabolism, neurobiological changes, dorsal midbrain activity post-exercise
- Clinical implications of PEM
- How to clinically manage PEM

Note to community members: We advise viewers to always speak with their medical care team prior to making any adjustments or changes to their current regimen.

Bateman Horne Center’s involvement in this program is made possible with the additional support of the Open Medicine Foundation.
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Hutan · Aug 16, 2022

ahimsa said: ↑

A new video on Post Exertional Malaise (40 minutes) has been posted on the Bateman Horne Center YouTube channel:
Click to expand...

I thought the description of PEM was really good, the bit about CPET was fine, and the message about trying to avoid PEM was good too.

I was less impressed by the middle bit where findings from studies were presented to try to explain what is happening in PEM. Two old studies by Alan Lights' team were presented - things like gene expression studies that, if I recall correctly, we were not entirely convinced by. And then there were various brain studies, with specific bits of the brain mentioned, and various words thrown around like self-referential thought and threat awareness and flight or fight. I'm not sure the presenter fully understands how preliminary most of this stuff is. I know he's a doctor treating ME/CFS patients, so it must be tempting to feel that he knows things about the illness, but right now, it is more accurate to say that not a lot is known for sure yet.

And I wasn't sure about the recommendations for drug treatments - LDN was one. There was no mention of ibuprofen, which is what I turn to when things are really bad.

I'll be interested to hear what others thought.

ahimsa · Aug 30, 2022

Two videos about orthostatic intolerance, part of the Project ECHO series for PASC (Long COVID) and Post-Viral Syndromes, have been posted to the Bateman Horne Center YouTube channel:

Orthostatic Intolerance Part 1: Diagnosis

https://www.youtube.com/watch?v=UjDMfwtEFa4

From the video description:

May 31, 2022

Bateman Horne Center has partnered with the University of Utah Health to conduct a Long COVID and Post-Viral Syndromes ECHO (Project ECHO). This series delivers information to healthcare professionals utilizing short didactics and case-based learning to enhance their ability to manage patients with long COVID, ME/CFS, FM, and related comorbid conditions.

Brayden Yellman, MD, addresses the assessment of orthostatic intolerance (OI) syndromes:
- OI syndromes and physiologic happenings
- Patient presentation
- Triggers
- Assessment tools and testing
- Hours of Upright Activity (HUA)
- Cognitive impact (testing results, research, ways to assess)

Note to community members: We advise viewers to always speak with their medical care team prior to making any adjustments or changes to their current regimen.
Click to expand...

Orthostatic Intolerance Part 2: Management

https://www.youtube.com/watch?v=2KkYcA5zbNQ

From the video description:

June 14, 2022

Bateman Horne Center has partnered with the University of Utah Health to conduct a Long COVID and Post-Viral Syndromes ECHO (Project ECHO). This series delivers information to healthcare professionals utilizing short didactics and case-based learning to enhance their ability to manage patients with long COVID, ME/CFS, FM, and related comorbid conditions.

Brayden Yellman, MD, addresses management of orthostatic intolerance (OI) syndromes:
- Recognizing and avoiding common triggers
- Management approaches: increase intravascular volume, improve venous return,
maintain intravascular volume, increase cardiac input and improve cardiovascular tone
while avoiding PEM (post-exertional malaise)
- Case presentation

Note to community members: We advise viewers to always speak with their medical care team prior to making any adjustments or changes to their current regimen.
Click to expand...

Forbin · Aug 30, 2022

Hutan said: ↑

I thought the description of PEM was really good, the bit about CPET was fine, and the message about trying to avoid PEM was good too.
Click to expand...

I thought it was good, too - although there is an aspect of PEM (at least for me) which I feel like I don't see mentioned much, if at all. When it was at its worst, my experience of PEM was not just one of weakness and exhaustion. There was this pervasive sense that I should not move at all - or at least as little as possible. This sense was somewhat akin to not wanting to move when you have a sunburn - or something like the way your muscles feel the day after static exercise, like skiing. It's just weird in the way that it's not that you can't move, but that you're getting a very strong warning not to move or you'll get worse.

DigitalDrifter · Sep 5, 2022

Can some body please summarize the following video for me?

https://www.youtube.com/watch?v=E2xPZu_HToE

BrightCandle · Sep 6, 2022

DigitalDrifter said: ↑

Can some body please summarize the following video for me?

https://www.youtube.com/watch?v=E2xPZu_HToE

Click to expand...

I watched that the other day, its not very helpful it really is mostly about Insomnia being mental illness, that people should be checked for Sleep apnea and central hypersomnia. It was actually pretty dismissive of the problem with Covid based insomnia and provided no light as to the cause and just doctors should check for the usual stuff. Nothing new or of note at all.

Sly Saint · Oct 1, 2022

Project Echo

Long COVID & Fatiguing Illness Recovery Program - Monthly Session
Description
A CDC-funded monthly webinar-style ECHO learning session to rapidly disseminate Post-acute Sequelae of COVID-19 (PASC) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) findings and emerging best practices

University of New Mexico's Privacy Statement: https://privacy.unm.edu/privacy.statement.html
Mailchimp's Terms of Use: https://mailchimp.com/legal/terms
Time
You can choose to attend one or more of the following webinars.
Oct 13, 2022 01:00 PM
Nov 10, 2022 01:00 PM
Dec 8, 2022 01:00 PM
Click to expand...

Webinar Registration
https://echo.zoom.us/webinar/register/WN_bahjLohdT42ZKuVEEsHD5w

Laurie P · Oct 8, 2022

https://twitter.com/user/status/1576633243360792576

Post about the discussion is here: Is Long Covid a type of ME/CFS? Discussion thread

Louie41 · Oct 11, 2022

I received the following invite from the Bateman Horne Center, making me wonder if there's any actual science behind the assumptions noted:

Support Group: Tuesday, October 11th @ 1 pm MT

Join us on October 11th for our online Support Group led by Meredith Mehner, a licensed clinical social worker (LCSW) who has personal experience with illness.

TOPIC: Childhood Trauma

Special note. This support group session is to discuss:

how childhood trauma can be connected to chronic illness

therapy ideas that have worked for you pertaining to childhood trauma

stress patterns related to childhood trauma

It is not a group to process individual childhood trauma or share specifics of your experience. We encourage sharing ideas of what has moved you forward in your chronic illness journey or helped you understand yourself better to help you experience more peace physically or emotionally.

Trish · Oct 11, 2022

I think if it's approached from the point of view that some people with chronic illness will have also suffered childhood trauma, and that some people who suffered childhood trauma may find the stress/distress related to that makes their chronic illness worse, the some may find such a session helpful.

The problem with such discussions is that some may assume ME is caused by childhood trauma, and that therapy for this will cure their ME. There's no credible evidence of any causal link.

RedFox · Oct 12, 2022

There are very strong correlations between childhood trauma and serious illnesses. For example, the ACE study. The current hypothesis is that ACEs adversely impact brain development, which leads to mental impairments, making it harder for people to take care of their health, increasing the risk of disease and early death.

As ME just strikes people randomly, it doesn't fit in this model. So I'm skeptical of any correlation between childhood trauma and ME. If it's true, it's probably the same factor causing both trauma and illness. (E.g. Poverty? Gender?)

Sly Saint · Nov 27, 2022

from July
Endothelial Function Interim Results

In February of this year, we began enrolling for a study to evaluate endothelial function in people with ME/CFS and Long COVID. “Endothelial” refers to the cells that line the inside of blood vessels. Endothelial cells are actively involved in contracting/relaxing the blood vessels, blood clotting, and immune function.

Our aim is to assess endothelial function using the Endo PAT 2000 device, which measures Peripheral Arterial Tone (PAT) signal changes using non-invasive monitoring at the fingertip. We measure PAT at baseline, then again after reducing blood flow, and again after restoring normal blood flow. This process is called a reactive hyperemia challenge. Specifically, it consists of a brief baseline PAT recording, followed by a 5-minute PAT recording of blood flow during occlusion to one arm using an inflated blood pressure cuff, and 5 minutes of recording after the cuff pressure is released. This data generates a reactive hyperemia index (RHI) which is the post-to-pre occlusion PAT signal ratio in the occluded arm compared to the other arm that is not occluded.

The RHI is a measure of endothelial function. Normal endothelial function RHI scores are >0.51 and abnormal scores are <0.51 (the red dotted line in the figure below shows the 0.51 demarcation). What is abnormal and normal was determined by the company that makes the Endo PAT 2000 by analyzing 10,000 data points collected from different study cohorts worldwide. The Endo PAT 2000 also measures arterial stiffness from the PAT signal. Arterial stiffness is not necessarily correlated to endothelial function but may provide information as well.

We are at the halfway point of enrollment for this study and wanted to share the interim analysis. Figure 1 shows the RHI results for 24 ME/CFS patients, 14 Long COVID patients, and 5 controls. The average RHI scores for Long COVID patients was 0.53, 0.63 for ME/CFS patients, and 0.59 for controls. Remember that an RHI of <0.51 is abnormal. While the average RHI is normal (>0.51) for each of the 3 groups is normal, 8/14 (57%) of the Long COVID patients had an abnormal RHI score, 9/24 (38%) of ME/CFS patients had an abnormal RHI score, and 2/5 (40%) of controls had an abnormal RHI score. Enrolling more patients will give a stronger signal to let us know whether endothelial dysfunction is a significant finding in Long COVID and ME/CFS patients.

Augmentation index (AI) measures arterial stiffness and is measured at a heart rate of 75 beats per minute (bpm). Lower AI values (including negative results) reflect more arterial elasticity. AI usually increases with age and is higher in women. The interim results for arterial stiffness are shown in Figure 2. The average AI for Long COVID patients was -0.24, 7.6 for ME/CFS patients, and 15 for controls. Long COVID patients had significantly lower arterial stiffness and thus higher arterial elasticity than controls (p=0.05) and ME/CFS (p=0.08).

Figure 2

We are continuing to enroll for this important study and we need at least 5-10 more ME/CFS patients, 15-20 more Long COVID patients, and 10-15 more controls. The study requires a 2-hour in-person visit and continues for seven days with brief tests and surveys that are done from the comfort of your home. The in-person visit will start with you giving informed consent, answering questionnaires, and having a blood draw. Then we will take about 15 minutes to measure endothelial function using the Endo PAT 2000. We will outfit you with a wearable device that is worn on your ankle for seven days and provide you with a mailer to send it back to us (right image). A cognitive testing app will be set up on your smartphone so you can take the brief test in the morning and evening for seven days. There is a stipend of $50.00 for participating.

Please consider participating in this research. If you are interested, please contact us by:

Emailing: research@batemanhornecenter.org or call
(801) 532-8311
Click to expand...

https://batemanhornecenter.org/endothelial-function-interim-results-we-still-need-you/

ahimsa · Nov 27, 2022

New blog entry, "Josie's Story" -

https://batemanhornecenter.org/josies-story/

Sly Saint · Nov 29, 2022

Expert Consensus Statements of the U S ME CFS Clinician Coalition - presentation by Lucinda Bateman

Webinar for the Norwegian ME-association By Lucinda Bateman of the Bateman Horne Center. She talks about the collaboration between the top clinicians on ME in the US to set a standard for ME diagnosis and care for health professionals. Resource for health care workers: https://mecfscliniciancoalition.org/c...
Click to expand...

https://www.youtube.com/watch?v=qyzwFIVsI0k

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