USA: News from the Bateman Horne Center

https://www.facebook.com/batemanhor...u5NDW_MNi8zBo5J6r537mTlzFgQO0leo&__tn__=<,P-R
Bateman Horne Center
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BHC is making research participant data available to ME/CFS and long COVID researchers around the world by establishing Global Unique Identifiers (GUIDs).

"Each time you participate in research, you create a pearl of knowledge. GUIDs allow us to string pearls together, safely and securely, into one long strand that may help reveal the disease mechanisms of ME/CFS and long COVID."

Read Dr. Vernon's blog about GUIDs and how participating in research advances the science for #MECFS and #LongCOVID.
http://bit.ly/3uzJ6x4
 
RedFox said:
Sounds like they're hashing your personal info
Click to expand...
No need for that. GUIDs are just very large numbers or strings that can be assumed to be unique simply because they are so large that the same sequence is unlikely to come up more than once in the entire lifetime of the universe.

Very common in information sciences.
 
Trish said:
Can you explain what hashing means in this context?
Click to expand...
A hash is when you take a bunch of data (could be text, numbers, a large computer file) and you run it through an algorithm that "scrambles" it to create a random number. The number you get will totally change if the data changes even slightly. Which means you can't tell what the input to the hash was by just looking at it. You can thus compare the hashes of things to see if they're the same, without knowing the data that went into them. Wikipedia has a rather technical overview.
 
Tuesday, January 17

Free, professionally-facilitated online support group

https://batemanhornecenter.org/event/online-support-group-40/

13:00 MST/20:00 in Great Britain & Ireland

Find the time in your time zone here
https://www.timeanddate.com/worldcl...ine+Support+Group&iso=20230117T13&p1=220&ah=1

Topic: Body and Self Image

Support Group Format

The first 30-minutes will focus on a predetermined topic followed by a general discussion for the last half of the hour.

Both of the 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 Meredith Mehner, LCSW, who has personal experience navigating life while living with a complex chronic illness. Advance Registration Required.
 
Free professionally-facilitated online support group

https://batemanhornecenter.org/event/online-support-group-41/

Tuesday, February 14
1PM MST/8 PM in Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...ine+Support+Group&iso=20230214T13&p1=220&ah=1

Topic: Practical Strategies for Talking to People Who Don’t Understand
Support Group Format

The first 30-minutes will focus on a predetermined topic followed by a
general discussion for the last half of the hour. Both of the 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 Meredith Mehner, LCSW, who has personal
experience navigating life while living with a complex chronic
illness.

Click to expand...
 
New blog entry from Bateman Horne Center:

News Release: Microbiome Disturbances in ME/CFS

https://batemanhornecenter.org/news...-may-point-to-biomarker-and-treatment-trials/

Bateman Horne Center said:
Signature microbiome disturbances in ME/CFS may point to biomarker and treatment trials

New research reveals differences in the gut microbiomes of people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) compared to those of healthy controls. ME/CFS is a debilitating disease that affects approximately 1.5 million people in the U.S. At least one-quarter of ME/CFS patients are house or bedbound at some point in their lives, and approximately half are unemployed. ME/CFS is characterized by disabling fatigue that is not relieved with rest, post-exertional malaise, insomnia, brain fog, muscle pain, and gastrointestinal issues. There are no diagnostic tests or FDA-approved treatments. ME/CFS is the archetypal chronic post-viral illness and is clinically similar to post-COVID-19 syndrome or Long COVID.
...

Today, some of the fruits of our ME/CFS patients’ participation is published in two important papers in the journal of Cell Host & Microbe. Both papers reveal significant differences in the microbiome diversity, abundance, and functional biological pathways of research participants with ME/CFS compared to healthy controls. They validate similar findings from previous studies, identify potential biomarkers, and point toward a path for ME/CFS treatment trials.

BHC Medical Director, Lucinda Bateman, MD, says, “We partnered with JAX in 2017 to submit this NIH grant application with the specific goal of enrolling ME/CFS research subjects in the early stages of illness. This is one of the largest studies of ME/CFS, especially from a single clinical site and provides important evidence that lays the foundation for clinical trials. It was challenging to find patients early in illness, because accurate diagnosis often takes years, but recognition of post-viral syndromes, especially ME/CFS, is improving. Thank you to everyone who participated.”
Click to expand...
 
Free, professionally-facilitated online support group meeting
https://batemanhornecenter.org/event/online-support-group-42/

Tuesday, February 21
1 PM MST/8 PM Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...ort+group+meeting&iso=20230221T13&p1=220&ah=1

Topic: Spirituality and Hope

Support Group Format

The first 30-minutes will focus on a predetermined topic followed by a
general discussion for the last half of the hour. Both of the 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 Meredith Mehner, LCSW, who has personal
experience navigating life while living with a complex chronic
illness.
 
New blog entry from Bateman Horne Center, posted Feb. 9:

Potential Targets for ME/CFS Clinical Trials

https://batemanhornecenter.org/potential-targets-for-me-cfs-clinical-trials/

This week showcased Bateman Horne Center’s strategic plan in action. The new research published in two separate papers in the prestigious journal, Cell Host & Microbe, provided further evidence that the microbiome and metabolome contribute to the pathology of ME/CFS. Both papers reveal significant differences in the microbiome diversity, abundance, and functional biological pathways of research participants with ME/CFS compared to healthy controls. They validate similar findings from previous studies, identify potential biomarkers, and point toward a path for ME/CFS treatment trials.

BHC served as the Clinical Core for The Jackson Laboratory ME/CFS Collaborative Research Center (JAX) that published the paper titled, “Multi-‘omics of host-microbiome interactions in short- and long-term Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).” A unique and important aspect of this study was the inclusion of ME/CFS patients with short-duration illness. Dr. Lucinda Bateman saw “new onset” patients as one of the biggest gaps in ME/CFS research and designed the study to compare short-duration ME/CFS patients to ME/CFS patients sick for a long time.
Click to expand...
 
Tuesday, March 14 free, professionally-facilitated online support group

https://batemanhornecenter.org/event/online-support-group-43/

1PM MDT/7PM Great Britain & Ireland

Find the time in your time zone here
https://www.timeanddate.com/worldcl...ne+support+group&iso=20230314T13&p1=220&ah=13

Blurb:
Topic: What’s Worth Your Spoons and Finding Your Baseline
Support Group Format

The first 30-minutes will focus on a predetermined topic followed by a general discussion for the last half of the hour. Both of the 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 Meredith Mehner, LCSW, who has personal experience navigating life while living with a complex chronic illness.

Advance Registration Required. Click here to register.

Upon registration, you will receive a confirmation email containing instructions on how to join the group event. We recommend attendees test the link, their cameras, and speakers/headphones prior to joining.
 
Free, professionally-facilitated online support group
Tuesday, March 21
Topic: Aging with Chronic Illness
https://batemanhornecenter.org/event/online-support-group-44/

1 PM MDT/7 PM Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...ine+support+group&iso=20230321T13&p1=220&ah=1

Blurb:
Topic: Aging with Chronic Illness
Support Group Format

The first 30-minutes will focus on a predetermined topic followed by a
general discussion for the last half of the hour. Both of the 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 Meredith Mehner, LCSW, who has personal
experience navigating life while living with a complex chronic
illness.

Advance Registration Required. Click here to register.

Upon registration, you will receive a confirmation email containing
instructions on how to join the group event. We recommend attendees
test the link, their cameras, and speakers/headphones prior to
joining.

New to our online groups, or having problems connecting to Zoom?
Review the teleconferencing tips section of our website.
 
Free, professionally-facilitated online support group
https://batemanhornecenter.org/event/online-support-group-45/

Tuesday, April 11. 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=20230411T13&p1=220&ah=1

Topic: Working with brain fog and cognitive processing


Support Group Format

The first 30-minutes will focus on a predetermined topic followed by a general discussion for the last half of the hour. Both of the 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 Meredith Mehner, LCSW, who has personal experience navigating life while living with a complex chronic illness.
 
Topic for this (May 16) meeting: Crash Survival and Pacing

Free, professionally-facilitated online support group on Tuesday, May 16

Time: 3 PM EST/8 PM in Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...eman+Horne+Center&iso=20230516T13&p1=220&ah=1

Blurb:
Support Group Format

The first 30-minutes will focus on a predetermined topic followed by a
general discussion for the last half of the hour. Both of the 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 Meredith Mehner, LCSW, who has personal
experience navigating life while living with a complex chronic
illness.

Advance Registration Required. Click here
https://batemanhornecenter.org/event/online-support-group-47/ to
register.
 
Lunch & Learn – Virtual Event organised by the Bateman Horne Center

Thursday May 18th

Topic: Making Household Tasks Easier

11:30 am MDT/6:30 PM in Great Britain & Ireland
Find the time in your time zone here
https://www.timeanddate.com/worldcl...earn:+May+18th+&iso=20230518T1130&p1=220&ah=2

"These friendly sessions include a brief presentation by a participant, followed by break-out groups to discuss the "get to know you question." Individuals with ME/CFS, FM, long COVID and their supporters are invited"
Register here. https://batemanhornecenter.zoom.us/...--qrD4qE9KHu5col_-x1r4QOS03wWin#/registration
 
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