USA: News from the Bateman Horne Center

Next online support group from Bateman Horne Center:

Tuesday, May 14
1 PM Mountain Time / 3 PM Eastern Time / 8 PM Great Britain & Ireland

Topic: ME/CFS Awareness Event

Advance registration required.

https://batemanhornecenter.org/event/online-support-group-69/
Bateman Horne Center said:
It’s a time for us to come together to share our experiences, raise awareness, and support one another in our journeys with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

At this online event, Bateman Horne Center of Excellence expert clinicians and researchers will highlight recent advancements and recognize your firsthand experience.

Additionally, we invite you to share your story by contributing content that honors your personal journey with ME/CFS or post-COVID ME/CFS. Whether it’s through photos, brief video clips, poems, artwork, or other mediums, your contribution will help us create a powerful montage video indicating the facets of this complex illness. By providing your content, you grant Bateman Horne Center permission to use and share it publicly. It may be shared broadly via media and news outlets.

You’re invited to submit questions for the panel and content for the reflections video by Wednesday, May 8th. Due to submission volumes and time restraints, the experts will not be able to address all questions, though they will do their best. Additionally, the experts are not able to provide patient specific advice. Thanks kindly for your understanding.
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Find the time in your time zone here:

https://www.timeanddate.com/worldcl...S+Awareness+Event&iso=20240514T13&p1=220&ah=1
 
Free Lunch & Learn – Virtual Event

Thursday May 16 @ 11:30 AM - 1:00 PM MDT
1:30 PM ET/6:30 PM in Great Britain & Ireland
Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=May+16+Lunch+&+Learn+–+Virtual+Event&iso=20240516T1130&p1=220&ah=1&am=30

Presentation Topic: Occupational Therapist Amy Mooney presents: Stay in your energy envelope by modifying tasks



Advance Registration Required. Click here to register https://batemanhornecenter.zoom.us/...uuqpjoqEtfwrqa5NznR_fmGMz_tnkUU#/registration

https://twitter.com/user/status/1788308464424358057
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Free, professionally-facilitated online support group
https://batemanhornecenter.org/event/online-support-group-72/

Tuesday, May 21
1 PM MDT/3PM ET/8 PM in Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...ine+support+group&iso=20240521T13&p1=220&ah=1


Support Group Format Topic: Beyond Betrayal: Cultivating a Positive Relationship with Our Bodies

Both monthly support groups are designed to include people with ME/CFS, FM, Long COVID, and co-existing conditions. We also welcome supporters and loved ones.

https://twitter.com/user/status/1790798422062006288
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Free online support group from Bateman Horne Center:

Friday, June 7
1 PM Mountain Time / 3 PM Eastern Time / 8 PM Great Britain & Ireland

Topic: What does it mean to be “chronically ill?”

Advance registration required.

https://batemanhornecenter.org/event/online-support-group-70/
Bateman Horne Center said:
Support Group Format:

Both monthly support groups are designed to include people with ME/CFS, FM, Long COVID, and co-existing conditions. We also welcome supporters and loved ones.

These sessions are led by a licensed professional who has personal experience navigating life while living with a complex chronic illness. Each session includes a topic and guided discussion. Participants are encouraged to participate to their comfort level which may include listening, communicating in the chat box, and/or sharing verbally with the group.

We strive to foster an inclusive and accepting environment for all!
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Find the time in your time zone here:
https://www.timeanddate.com/worldcl...chronically+ill?”&iso=20240607T13&p1=220&ah=1
 
Free Lunch & Learn – Virtual Event

https://batemanhornecenter.org/event/lunch-learn-virtual-event-52/

Topic: Body of Water, Performance & Conversation with Sara Nesson

Thursday, June 20
11:30 AM - 1:00 PM Mountain
(starts at 1:30 PM Eastern, 6:30 PM in Great Britain & Ireland)

Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=Lunch+and+Learn:+Body+of+Water,+Performance+&+Conversation+with+Sara+Nesson&iso=20240620T1130&p1=220&ah=1&am=30

Advance registration required.
Bateman Horne Center said:
Body of Water is a chronology of love, loss, and reconciliation that follows Sara’s journey as a landlocked distance swimmer struggling to find the way home. Set on the rugged coastline of Northern California, the 25-minute monologue weaves lyric storytelling, myth, and sacred text. Playful and poignant, it is an homage to Sara’s aquatic nature, her passion for the wilderness, and a life altered by ME/CFS. Sara’s performance will be accompanied by a conversation about longing, loss, hope, and healing.

Sara Nesson is a California artist, writer, and performer living with ME/CFS who has been crafting original theater for twenty-five years. She has been touring as an online storyteller since 2021 and facilitates a group for artists living with chronic illness. Click here to watch the Body of Water trailer.

Sara’s performance will be followed by discussion and then participants will separate into virtual break-out rooms for introductions and to discuss the “get to know you” question.
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KSL NewsRadio: “The long arm of long COVID”

“6.8% of adults in the United States have long COVID,” said Dr. Melanie Hoppers, a practicing physician, board certified in internal medicine and pediatrics with the Bateman Horne Center

“5.8 million children in America have long COVID, which extrapolates down to about 2,000 in Salt Lake City,” Hoppers explained.”

Fifty percent of people with long COVID meet the definition for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). That disease has been around for a long time. It’s a post-viral illness.” They know a lot about ME/CFS at the Bateman Horne Center.

“Patients sometimes experience post-exertional malaise,” Hoppers said, “so when they try to exert themselves, their body does not create energy.
 
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ahimsa said:
Free online support group from Bateman Horne Center:

Tuesday, July 16
1 PM Mountain Time / 3 PM Eastern Time / 8 PM Great Britain & Ireland

Topic: Grief & Ambiguous Loss

Advance registration required.

https://batemanhornecenter.org/event/online-support-group-73/

Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=Support+Group:+Grief+&+Ambiguous+Loss&iso=20240716T13&p1=220&ah=1
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For some reason the first link links to an old link when you click on it. It should go to:
https://batemanhornecenter.org/event/online-support-group-73/
 
From my perspective as a person with severe OI, this kind of "pacing" is absolutely essential and actually helps.

Lying down to avoid fainting (and falling, vomiting etc), and using compression garments to allow yourself a sliver more upright time in order to (for example) be able to use the toilet or get a glass of water from the kitchen safely is the very opposite of "unnecessary rigmaroles".

I've been hanging out in POTS/OI groups online for years, and there are extremely few things that actually seem to help (medication aside, but few have access to medication). The things mentioned in this handout are among the things that actually do help, and are easy and accessible to most.

I desperately wish someone had handed me this kind of info when I first fell ill. It would have been absolutely life-changing for me, and it would have spared me so much unnecessary suffering, including repeated concussions and other physical injuries from fainting/falling over.

Evidence-based or not, in the real world this helps a lot of pwPOTS/OI, especially those of us who don't have access to medication or other kinds of care and support. It's potentially lifesaving advice, actually.
 
Jonathan Edwards said:
As far as I am aware none of the information on that sheet is based on evidence and is likely to get patients involved in unnecessary rigmaroles and potentially dangerous overuse of salt.
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And yet it is largely correct and very helpful to many. Funny how things work sometimes. Some evidence-based things are complete and total harmful BS. Some unevidenced things are largely correct.

Only in medicine. Applying the same logic anywhere else will definitely not work.

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I don't see an issue with adding a little extra salt to your diet, and making sure you stay adequately hydrated.

Beyond that, as with [checks notes] every other explanatory and therapeutic claim I have ever heard about ME/CFS, I await robust evidence.
 
It is not necessarily a bad thing to share advice based on either clinical or lived experience but it is important to make clear that it is based on this and not on research or any accurate understanding of any underlying physiology.

Then people can decide for themselves how much reliance to place on it. As people with ME we should insist this is clearly stated as we have been subjected an awful lot of bad and indeed harmful advice supposedly based on clinical or lived experience.
 
Free, professionally-facilitated online support group
https://batemanhornecenter.org/event/online-support-group-75/?

1 PM MT/3 PM ET/8 PM in Great Britain & Ireland on August 13

Find the time in your time zone here
https://www.timeanddate.com/worldcl...ine+support+group&iso=20240813T13&p1=220&ah=1

Topic: Making Peace with the Unknown

Support Group Format
Both monthly support groups are designed to include people with ME/CFS, FM, Long COVID, and co-existing conditions. We also welcome supporters and loved ones.

These sessions are led by a licensed professional who has personal experience navigating life while living with a complex chronic illness. Each session includes a topic and guided discussion. Participants are encouraged to participate to their comfort level which may include listening, communicating in the chat box, and/or sharing verbally with the group.

We strive to foster an inclusive and accepting environment for all!

Advance Registration Required.

https://twitter.com/user/status/1818634627961020596
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