Videos on PEM and other ME/CFS topics - Bateman Horne Center
InitialConditions
Senior Member (Voting Rights)
Mij
Senior Member (Voting Rights)
Agree. It was debunked by Mark VanNess at Workwell with a very a detailed explanation. Lactic acid is actully good for us.
Dolphin
Senior Member (Voting Rights)
Bateman Horne Center
"Post-exertional malaise (PEM) isn’t due to laziness or
deconditioning." - Clayton Powers, DPT
Do your symptoms worsen when you push yourself beyond your energy
threshold? Clayton Powers, doctor of physical therapy, explains what
PEM is in this short video:
(link in bio and stories)
This video is part of BASICS: a series that simplifies and explains
aspects of ME/CFS and related comorbid conditions.
*****
Bateman Horne Center’s involvement in this program is made possible
with the additional support of Open Medicine Foundation (@openmedf),
the Whittemore Peterson Institute, and donors like you.
"Post-exertional malaise (PEM) isn’t due to laziness or
deconditioning." - Clayton Powers, DPT
Do your symptoms worsen when you push yourself beyond your energy
threshold? Clayton Powers, doctor of physical therapy, explains what
PEM is in this short video:
(link in bio and stories)
This video is part of BASICS: a series that simplifies and explains
aspects of ME/CFS and related comorbid conditions.
*****
Bateman Horne Center’s involvement in this program is made possible
with the additional support of Open Medicine Foundation (@openmedf),
the Whittemore Peterson Institute, and donors like you.
Dolphin
Senior Member (Voting Rights)
The Basics: Orthostatic Intolerance (OI)
17 Apr 2024 BHC Education
Clayton Powers, DPT, discusses the basics of orthostatic intolerance (OI).
- What is orthostatic intolerance?
- Symptoms of orthostatic intolerance
- Pacing upright activity
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.
van Campen CLM, Rowe PC, Visser FC. Two-Day Cardiopulmonary Exercise
Testing in Females with a Severe Grade of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome: Comparison with Patients
with Mild and Moderate Disease. Healthcare (Basel). 2020;8(3):192.
Published 2020 Jun 30. doi:10.3390/healthcare8030192
Cerebral blood flow remains reduced after tilt testing in myalgic
encephalomyelitis/chronic fatigue syndrome patients. van CampenCLMC,
Rowe PC, Visser FC. Clin NeurophysiolPract. 2021 Sep 23;6:245-255.
doi: 10.1016/j.cnp.2021.09.001. PMID: 34667909
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Dolphin
Senior Member (Voting Rights)
"Recognize M.E." (May 2024) (158 seconds)
Bateman Horne Center
11 May 2024
BHC Education
This powerful piece, delivered by Doctor of Physical Therapy Clayton Powers, recognizes myalgic encephalomyelitis (ME/CFS), a condition often misunderstood and overlooked despite its profound impact on millions worldwide. The video delves into the daily struggles faced by individuals battling ME/CFS or post-COVID related ME/CFS, emphasizing the immense challenges posed by extreme and all consuming fatigue, metabolic, neurologic, and immune impairments, to name a few.
ME/CFS ranks lower in terms of quality of life compared to major diseases like cancer, stroke, and debilitating autoimmune conditions. Yet, it's a condition that's unrecognized by many and often misdiagnosed or dismissed. We want you to know that you are not alone in this fight. Your experiences are valid, and your voices matter.
Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, Ehlers L. The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLoS One. 2015 Jul 6;10(7):e0132421. doi: 10.1371/journal.pone.0132421. PMID: 26147503; PMCID: PMC4492975.
Bateman Horne Center
11 May 2024
BHC Education
This powerful piece, delivered by Doctor of Physical Therapy Clayton Powers, recognizes myalgic encephalomyelitis (ME/CFS), a condition often misunderstood and overlooked despite its profound impact on millions worldwide. The video delves into the daily struggles faced by individuals battling ME/CFS or post-COVID related ME/CFS, emphasizing the immense challenges posed by extreme and all consuming fatigue, metabolic, neurologic, and immune impairments, to name a few.
ME/CFS ranks lower in terms of quality of life compared to major diseases like cancer, stroke, and debilitating autoimmune conditions. Yet, it's a condition that's unrecognized by many and often misdiagnosed or dismissed. We want you to know that you are not alone in this fight. Your experiences are valid, and your voices matter.
Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, Ehlers L. The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLoS One. 2015 Jul 6;10(7):e0132421. doi: 10.1371/journal.pone.0132421. PMID: 26147503; PMCID: PMC4492975.
Dolphin
Senior Member (Voting Rights)
"Staying within Your Energy Envelope by Modifying Tasks" (Bateman Horne Center)
Amy Mooney, MS OTR/L discusses the details of pacing strategies from the perspective of an occupational therapist and mother of an adult daughter with severe ME/CFS.
Note to community members: We advise viewers to always speak with their medical care team before making any adjustments or changes to their current care regimen.
Time Stamps
00:00 Introduction
2:30 Post-exertional malaise (PEM)
3:56 Occupational therapy vs physical therapy treatment for PEM
11:23 Pacing for PEM
27:18 Task analysis
39:00 Types of rest
41:12 Example of patient PEM symptom time course
47:15 Accommodations and Modifications
Recording
Recap (comments & suggestions from others on topic): https://batemanhornecenter.org/wp-content/uploads/2024/06/20240516-LunchLearn.pdf
Slides: https://batemanhornecenter.org/wp-c...and-Learn-presentation-slides-pdf-version.pdf
Amy Mooney, MS OTR/L discusses the details of pacing strategies from the perspective of an occupational therapist and mother of an adult daughter with severe ME/CFS.
Note to community members: We advise viewers to always speak with their medical care team before making any adjustments or changes to their current care regimen.
Time Stamps
00:00 Introduction
2:30 Post-exertional malaise (PEM)
3:56 Occupational therapy vs physical therapy treatment for PEM
11:23 Pacing for PEM
27:18 Task analysis
39:00 Types of rest
41:12 Example of patient PEM symptom time course
47:15 Accommodations and Modifications
Recording
Recap (comments & suggestions from others on topic): https://batemanhornecenter.org/wp-content/uploads/2024/06/20240516-LunchLearn.pdf
Slides: https://batemanhornecenter.org/wp-c...and-Learn-presentation-slides-pdf-version.pdf
Dakota15
Senior Member (Voting Rights)
(50 min interview with Bateman)
“Emerge Australia Podcast Series, 2/22/24: ‘Ep. 20 – Dr Lucinda Bateman’
“I think things are moving forward and faster than ever before, but it takes time and it takes a critical mass of people engaged, but I do believe we're making progress”
‘We have a long way to go in understanding the core treatments..but the entire COVID pandemic has opened up a whole new avenue..new level of interest from clinicians & scientists..”
“I have a strong belief in the hypothesis that there's a role played by viruses and maybe other infections and the presence of that DNA or RNA and also the potential for reactivation”
“And then there's a tight connection with some kind of a chronic immune and inflammatory process that may feed back and forth. I also feel fairly confident that this illness affects the central and peripheral nervous system and the interplay with circulation and the delivery of everything in the blood to critical organs. And I think one of the most important areas to me is trying to understand why cellular energy production is abnormal.”
“And so there's now interest all over the world in trying to understand what's going on in long COVID patients. And what we've done in the ME/CFS world is try to keep ME/CFS in the conversation. Always, always, always in the conversation with long COVID and what can we learn and how do we benefit both groups and how do we use what we learn in either field to make it better for everyone.”
“So RECOVER..there's a clinical trials arm of trying to design treatments and test them..And so there have been people with experience in ME/CFS kind of as part of the planning of all of these, trying to be that voice that brings up the relationship between the illnesses. But for example, the whole first protocol for looking at long COVID patients didn't ask appropriately about post-exertional malaise, because people didn't believe it. It's just the people planning the protocol were like non-believers.
But they've had to go back and revise it because of the large number of patients who report post-exertional malaise. And the same with the clinical trials. They started out really with very little understanding of exercise intolerance and post-exertional malaise and the manifestations. And then we've had an opportunity to really educate those planning, those clinical trials for long COVID, what we've learned from ME/CFS and about pacing and about a post-exertional malaise”
“I would say the most interesting and important area, pivotal area is understanding the energy problems in the cell. And what's creating what appears to be mitochondrial dysfunction. To me, that is going to be pivotal in us being able to move forward and design treatments, and also look back to understand how the immune system is contributing, how the virus is contributing.”
“But what's going on, right? That cellular energy is low & that patients just are unable to do very much without becoming very ill. To me, that is going to be the most important area that I'm kind of keeping my eye on, especially as that's coming up in long COVID research as well
“Emerge Australia Podcast Series, 2/22/24: ‘Ep. 20 – Dr Lucinda Bateman’
“I think things are moving forward and faster than ever before, but it takes time and it takes a critical mass of people engaged, but I do believe we're making progress”
‘We have a long way to go in understanding the core treatments..but the entire COVID pandemic has opened up a whole new avenue..new level of interest from clinicians & scientists..”
“I have a strong belief in the hypothesis that there's a role played by viruses and maybe other infections and the presence of that DNA or RNA and also the potential for reactivation”
“And then there's a tight connection with some kind of a chronic immune and inflammatory process that may feed back and forth. I also feel fairly confident that this illness affects the central and peripheral nervous system and the interplay with circulation and the delivery of everything in the blood to critical organs. And I think one of the most important areas to me is trying to understand why cellular energy production is abnormal.”
“And so there's now interest all over the world in trying to understand what's going on in long COVID patients. And what we've done in the ME/CFS world is try to keep ME/CFS in the conversation. Always, always, always in the conversation with long COVID and what can we learn and how do we benefit both groups and how do we use what we learn in either field to make it better for everyone.”
“So RECOVER..there's a clinical trials arm of trying to design treatments and test them..And so there have been people with experience in ME/CFS kind of as part of the planning of all of these, trying to be that voice that brings up the relationship between the illnesses. But for example, the whole first protocol for looking at long COVID patients didn't ask appropriately about post-exertional malaise, because people didn't believe it. It's just the people planning the protocol were like non-believers.
But they've had to go back and revise it because of the large number of patients who report post-exertional malaise. And the same with the clinical trials. They started out really with very little understanding of exercise intolerance and post-exertional malaise and the manifestations. And then we've had an opportunity to really educate those planning, those clinical trials for long COVID, what we've learned from ME/CFS and about pacing and about a post-exertional malaise”
“I would say the most interesting and important area, pivotal area is understanding the energy problems in the cell. And what's creating what appears to be mitochondrial dysfunction. To me, that is going to be pivotal in us being able to move forward and design treatments, and also look back to understand how the immune system is contributing, how the virus is contributing.”
“But what's going on, right? That cellular energy is low & that patients just are unable to do very much without becoming very ill. To me, that is going to be the most important area that I'm kind of keeping my eye on, especially as that's coming up in long COVID research as well
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Dolphin
Senior Member (Voting Rights)
Bateman Horne Center
·
Medical lecture now available!
Dr. Melanie Hoppers presents “Post-Exertional Malaise: The Price of Exertion” to a group of medical professionals at the Post-COVID Primary Care ECHO.
https://www.youtube.com/watch?v=p9kdYIfLer4
She #postexertionalmalaise #PEM #PENE #PESE #PacingforPEM #MECFS #LongCOVID #IACCs #MedEdMatters
·
Dr. Melanie Hoppers presents “Post-Exertional Malaise: The Price of Exertion” to a group of medical professionals at the Post-COVID Primary Care ECHO.
From OMF email newsletter:
Did you know that OMF is working with Bateman Horne Center (BHC) to educate healthcare providers on ME/CFS and Long COVID, and provide resources for patients navigating these diseases?
A couple of years ago, we joined forces to create the Medical Education Resource Center (MERC), designed to help patients and providers with the resources they need.
Life with a Low Battery: Living with ME/CFS
Our team understands that it can be incredibly frustrating and difficult to explain how to live in a body that functions differently than it once did. In response to feedback from the lived experience community, the MERC team created an animated video, "Life with a Low Battery: Living with ME/CFS," explaining energy utilization in an engaging way.
This video aims to help your friends and family members understand what it is like to live with ME/CFS and to help you identify ways to close unnecessary “apps” (when possible) to conserve energy.
To accommodate the sensory sensitivities of our community, there are several versions of "Life with a Low Battery: Living with ME/CFS" available for viewing:
-----
Full color/music version:
Did you know that OMF is working with Bateman Horne Center (BHC) to educate healthcare providers on ME/CFS and Long COVID, and provide resources for patients navigating these diseases?
A couple of years ago, we joined forces to create the Medical Education Resource Center (MERC), designed to help patients and providers with the resources they need.
Life with a Low Battery: Living with ME/CFS
Our team understands that it can be incredibly frustrating and difficult to explain how to live in a body that functions differently than it once did. In response to feedback from the lived experience community, the MERC team created an animated video, "Life with a Low Battery: Living with ME/CFS," explaining energy utilization in an engaging way.
This video aims to help your friends and family members understand what it is like to live with ME/CFS and to help you identify ways to close unnecessary “apps” (when possible) to conserve energy.
To accommodate the sensory sensitivities of our community, there are several versions of "Life with a Low Battery: Living with ME/CFS" available for viewing:
- Read the content: transcript
- A version that has dialogue audio only
- A low sensory video with muted colors and no background music
- One with full color, with no background music
- And finally, a version that includes full color and background music. This is one you may want to share with people in your life who don’t have sensory sensitivities because it is the most engaging version.
-----
Full color/music version:
Dolphin
Senior Member (Voting Rights)
A similar message from the Bateman Horne Center:
Bateman Horne Center https://batemanhornecenter.org/ understands that it can be incredibly frustrating and difficult to explain how to live in a body that functions differently than it once did. In response to feedback from the lived experience community, we created an animated video, "Life with a Low Battery: Living with ME/CFS," explaining energy utilization in a fun and engaging way.
This video aims to help your friends and family members understand what it is like to live with ME/CFS and to help you identify ways to close unnecessary “apps” (when possible) to conserve energy.
To accommodate the sensory sensitivities of our community, there are several versions of, "Life with a Low Battery: Living with ME/CFS," available for viewing:
Read the content: transcript https://batemanhornecenter.org/wp-c...Life-with-a-Low-Battery-Living-with-MECFS.pdf
A version that has dialogue audio only
A low sensory video with muted colors and no background music
One with full color, with no background music
And finally, a version that includes full color and background music . This is one you may want to share with people in your life who don’t have sensory sensitivities because it is the most engaging version.
You can find links to these in the YouTube descriptions at batemanhornecenter.org. We hope you enjoy this new resource created by the OMF-supported Medical Education Resource Center at BHC, with support from the Whittemore Peterson Institute and our generous donors.
Help make ME/CFS common knowledge by liking and sharing
with your friends and family.
Read more about the inspiration behind this video by co-creator and Bateman Horne Center's Education Director, Tahlia Ruschioni.
The Story Behind "Life with a Low Battery: Living with ME/CFS."
https://batemanhornecenter.org/30953-2/
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Mij
Senior Member (Voting Rights)
Did you know many with ME/CFS and Long COVID also have connective tissue disorders? EDS and hEDS affect the connective tissue found in the skin, joints, and blood vessel walls, which can make some prone to comorbid conditions. Proper diagnosis and management can improve QoL.
https://twitter.com/user/status/1849555097291980925
https://twitter.com/user/status/1849555097291980925