USA: News from the Bateman Horne Center

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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Tuesday, August 20

Free, professionally-facilitated online support group
https://batemanhornecenter.org/event/online-support-group-76/

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

Find the time in your time zone here
https://www.timeanddate.com/worldcl...ine+support+group&iso=20240820T13&p1=220&ah=1

Topic: Self-compassion with Chronic Illness

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/1821218130263191581
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https://us02web.zoom.us/webinar/register/WN_YjCfUvHiQnmuAG6yV3jORw#/registration

Severe ME/CFS: Care, Rights, and Research

Description

ME/CFS has a broad spectrum of severity, with some able to work while others require total care and support. People living with Severe ME are often confined to their beds and require assistance with basic daily activities such as eating or bathing. Their symptoms can be exacerbated by light, sound, and movement, and some may require round-the-clock care. These severe symptoms can limit access to medical care and support, leading to isolation from family and friends. About 25% of people with ME/CFS are severely ill and bedbound as a result of their illness. For many, there is a pattern of relapse and remission.

This four-part webinar series presented by Solve M.E. and the Bateman Horne Center will feature medical professionals, legal experts, scientists, and care partners discussing tips for caregiving, legal perspectives on individual rights, strategies for addressing treatment challenges for medical providers, and the latest research breakthroughs impacting people with Severe ME. While this series is focused on Severe ME, the information shared will be relevant to other severe chronic illnesses, as well as people with moderate to mild ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses (IACCIs).

Each webinar takes place from 10-11 am PT (11 am – 12 pm MT).

Topics and dates are:

• October 9: Caregiving

• November 13: Legal rights

• December 4: Medical care

• January 15: Research

https://twitter.com/user/status/1826701101087019237
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Thursday, September 5:
Free, professionally-facilitated online support group

Topic: Sharing the Collective Wisdom of the Chronically Ill
https://batemanhornecenter.org/event/online-support-group-77/

1 PM MT/3 PM ET/8 PM in Great Britain & Ireland
Find the time in your time zone here
https://www.timeanddate.com/worldcl...ine+Support+Group&iso=20240905T13&p1=220&ah=1

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/1830264936511189097
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3pm ET/8pm in GB & Ireland
Find the time in your time zone https://www.timeanddate.com/worldcl...16+support+group+&iso=20240917T13&p1=220&ah=1


Bateman Horne Center

Our 2x a month online support groups are professionally led and provide a caring community to those with ME/CFS and other complex conditions. To date, nearly 2,500 people have participated in our support groups.

Join us tomorrow at 1 p.m. MT. https://bit.ly/3Zsyu3M

"I am so grateful to know I am not alone and look forward to our next meeting. So appreciate all the support, encouragement, and love from all❤️" Participant Quote

-----------------

Topic: Effectively Communicating with Family and Friends

1. What do you find to be difficult in communicating with family and friends?

2. What has helped you in communicating with family and friends?

3. What has been a successful time you communicated about your illness and/or disabilities with family and friends? What do you believe are the reasons the communication was a successful encounter?

4. How do you share information and details about your illness and any disabilities with family and friends?

5. What do you specifically want to know how to do in relation to communicating with family and friends? Is there an example you want to share with the group when you are getting "stuck" in your efforts? #MECFS #MyalgicEncephalomyelitis #LongCOVID #supportgroup #chronicillness

https://twitter.com/user/status/1835732889662841283
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https://batemanhornecenter.org/event/online-support-group-78/

Online Support Group

October 8 @ 1:00 PM to 2:00 PM MDT/3 PM ET/8 PM in Great Britain & Ireland

Free

Topic: Romantic Love Relationships and Chronic Illness

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/1841550824574746760
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Interesting to know the background of Dr. Melanie Hoppers who is an internist and paediatrician at the Bateman Horne Center. I haven’t listen to this podcast myself yet.
Bateman Horne Center
·

Dr. Melanie Hoppers never anticipated becoming an expert on ME/CFS, but when her own daughter fell ill, her journey began. Driven to find answers and help for her daughter, she immersed herself in research and discovered the groundbreaking work of Dr. Bateman and the Bateman Horne Center. Her passion for the patient population ultimately led Dr. Hoppers to join our mission to advance research and improve access to clinical care through medical education.
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https://majorpainpodcast.com/
In this episode of the Major Pain podcast, Dr. Hoppers shares:
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her daughter’s illness and how learning to manage this disease has changed the course of her professional life
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some of the techniques she uses to manage ME/CFS
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mast cell activation syndrome (MCAS) and other comorbidities
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the important work taking place at the Bateman Horne Center on behalf of individuals with ME/CFS
Dr. Hoppers’ interview is not meant to be medical advice. Listeners should consult with their medical provider before making any changes to their current regimen.
#MECFS #podcast #chronicillness #chronicfatigue #mcas #mastcellactivationsyndrome #pem #postexertionalmalaise #myalgicencephalomyelitis
 
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https://batemanhornecenter.org/event/online-support-group-79/

Tuesday, October 15

Free, professionally-facilitated online support group

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

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...ine+Support+Group&iso=20241015T13&p1=220&ah=1

Topic: When People and Life Don’t Cooperate: Coping with Things Not Going the Way We Want Them To Go

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/1844016379848167648
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