Videos on PEM and other ME/CFS topics - Bateman Horne Center

Discussion in 'Resources' started by mango, May 10, 2023.

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  1. mango

    mango Senior Member (Voting Rights)

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  2. Mij

    Mij Senior Member (Voting Rights)

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    When a patient has a damaged or broken aerobic energy system, they're unable to produce enough energy for that activity/task. Their body goes into the lactic acid system, and they start to have neurologic and other PEM/PESE related symptoms.

    https://www.youtube.com/watch?v=ioSe6LPVLDM


     
  3. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I just started this video and the first claim—that delayed onset muscle soreness (DOMS) after a workout is caused (primarily) by lactic acid—seems to have been debunked a while back.
     
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  4. Mij

    Mij Senior Member (Voting Rights)

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    Agree. It was debunked by Mark VanNess at Workwell with a very a detailed explanation. Lactic acid is actully good for us.
     
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  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  6. mango

    mango Senior Member (Voting Rights)

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  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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    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:

    https://www.youtube.com/watch?v=UkS6L3Klc00



    (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.

     
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  8. Dolphin

    Dolphin Senior Member (Voting Rights)

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    https://www.youtube.com/watch?v=Gh4vpKsLbr8




    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

     
    Last edited: Jun 29, 2024
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  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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    "Recognize M.E." (May 2024) (158 seconds)

    https://www.youtube.com/watch?v=6fJb7VYlzB0




    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.

     
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  10. Dolphin

    Dolphin Senior Member (Voting Rights)

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    "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

    https://www.youtube.com/watch?v=RVJG6t1tjbE




    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

     
  11. Dolphin

    Dolphin Senior Member (Voting Rights)

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  12. forestglip

    forestglip Senior Member (Voting Rights)

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    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:
    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 donors like you.

    -----

    Full color/music version:

    https://www.youtube.com/watch?v=gKWk99Fsd_o


     
  13. Dolphin

    Dolphin Senior Member (Voting Rights)

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    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

    https://www.youtube.com/watch?v=bmeXM4w0eZ4




    A low sensory video with muted colors and no background music

    https://www.youtube.com/watch?v=P-MZqi6mUPo




    One with full color, with no background music

    https://www.youtube.com/watch?v=00f6Yx9ab3I




    And finally, a version that includes full color and background music

    https://www.youtube.com/watch?v=gKWk99Fsd_o


    . 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/

     
    Last edited: Oct 3, 2024
  14. Mij

    Mij Senior Member (Voting Rights)

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    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
     
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