USA: News from #MEAction

Email from #MEAction about creative writing workshops for people with ME/CFS or Long Covid:
#MEAction said:
#MEAction is excited to announce we are partnering with the Writers Guild Initiative (WGI) to offer creative writing workshops for people with ME and Long COVID**. WGI has graciously donated their time to offer these writer workshops through personal mentorship with the writers of the #MEAction community!

The workshops consist of three sessions during the weekends in November.

The WGI’s mission is to make the art of storytelling accessible to people of all ethnic, cultural, and economic backgrounds – with special attention to the underserved. No writing experience is required. All participants need to have is a desire to write and explore their creativity and a pen and paper. Spelling, grammar, and punctuation do not matter - our workshops are an opportunity to explore storytelling in all its forms. If you’re a poet, memoirist, or even keep a journal, please fill out an application here!
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#MEAction said:
** Please note, this opportunity is for people with ME or Long Covid specifically, and not for caregivers at this time.
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The deadline to apply is Monday, October 23, 2023.
Space is limited, and only 25 slots are available.​

Full email here:

https://mailchi.mp/meaction/meactio...s-guild-initiative-to-offer-writers-workshops

EDIT: Also announced on their website here:

https://www.meaction.net/2023/10/11...-guild-initiative-to-offer-writers-workshops/
 
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Email from #MEAction about their Fall Virtual Artist Salon:
#MEAction is honored to host our Fall Virtual Artist Salon on Wednesday, November 8th at 12pm PST/3pm EST/8pm GMT!

We have had such an amazing response to our Virtual Artist Salons over the past years, that we are thrilled to host another salon as a way to celebrate and highlight the excellent artists within our community!

The Fall Virtual Artist Salon will be gathering where artists will share their work and the inspiration for their pieces, plus the role art plays in their lives.

If you are an artist and are interested in sharing your work during the Salon, please fill out this form.

This event will be done in an “open mic” format, where we will call people from the list to share about their work for about 3-5 minutes. Depending on the response we may not be able to get to everyone, but we hope to have time to get to quite a few people!
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Full email here:

https://mailchi.mp/meaction/meactions-fall-virtual-artist-salon
 
Sly Saint said:
Mayo Clinic Proceedings is a journal, not the actual clinic.
https://www.mayoclinicproceedings.org/

Mayo Clinic have changed but it has been a long slog; some of their 'old' misinformation is still being used elsewhere.

https://www.s4me.info/threads/usa-mayo-clinic.1207/
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#MEAction and Mayo Clinic have been working together for a while. I believe this document (and a CME course based on it, web page, etc) was funded by a grant.

See this news item from September 2022:

https://www.meaction.net/2022/09/22/mayo-grant/

#MEAction said:
#MEAction and Mayo Clinic applied for a grant together from the Society to Improve Diagnosis in Medicine to transform the diagnostic and treatment process at Mayo Clinic Rochester for people with ME/CFS!
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I believe the idea is that this new Concise Review for Clinicians will be used at the actual Mayo Clinic. Well, at least at the Rochester, Minnesota location. I'm not sure how all the different Mayo Clinic locations are managed.

Please let me know if I've misunderstood something! (which happens a lot:))
 
The next #MEAction Partner/Caregiver Support Call is scheduled for Sunday, November 5, 3 - 4 PM Eastern Time / 12 - 1 PM Pacific Time. (on Zoom)

https://www.meaction.net/event/me-partner-caregivers-support-group/2023-11-05/

#MEAction said:
The Partner Caregivers Support Group invites caregivers who are spouses, partners, or significant others of people with ME/CFS or Long COVID (and associated conditions) to join us to connect, share, and support each other.

We strive to provide an affirming, safe place to share for all people regardless of sexual orientation and gender identity. While we focus on partner caregivers, all caregivers are welcome to join for extra support. We meet every first Sunday of the month.

If you would like to be added to our email list and receive meeting info and updates, please email kim.mecfs@gmail.com.
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Find the time in your time zone here:

https://www.timeanddate.com/worldclock/fixedtime.html?msg=#MEAction+Partner+Caregiver+Support+Call+(Zoom)&iso=20231105T15&p1=179&ah=1
 
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https://www.meaction.net/event/me-caregiver-support-call/2023-11-18/

CAREGIVER SUPPORT CALL ( FOR CAREGIVERS OF PEOPLE WITH ME (MYLAGIC ENCEPHALOMEYLITIS), LONG COVID AND ASSOCIATED CONDITIONS)

NOVEMBER 18 @ 3:30 PM – 4:30 PM AMERICA/NEW_YORK/8:30 PM in Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...R+SUPPORT+CALL+&iso=20231118T1530&p1=179&ah=1

We welcome caregivers of people with chronic diseases such as myalgic encephalomyelitis (ME), Long COVID, MCAS, etc. to join our calls to connect with and support each other.
https://twitter.com/user/status/1722678705783271468
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Announcement from #MEAction:

CANARY CORPS – New Grassroots Program Coming Soon

https://www.meaction.net/2023/11/06/canary-corps-new-grassroots-program-coming-soon/
#MEAction said:
In early 2024, #MEAction will launch a new grassroots, peer-run program in the United States to help people with ME, Long COVID, and other infection-associated chronic illnesses find and access local services and support for people with disabilities.

This will be an innovative and radical program that is run by, and built for, our sick and disabled community.

We call it: Canary Corps.
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The name comes from the metaphor of being a canary in a coal mine.
#MEAction said:
How will Canary Corps help?

Canary Corps initial focus will be to help people access support in the following areas:
  1. Affordable health insurance guidance
  2. Medical care coordination/case management
  3. Regional centers for disability information, advocacy, and assistance
  4. Home – and community- based services for people with disabilities
We are starting with these four areas because established, local disability services and supports do exist but our community often has difficulty finding and accessing them. Canary Corps will help people to bridge gaps they face in accessing support for these disability-related and daily life needs.
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There's a community education workshop on December 6th at 4 pm Eastern Time.

Details here: https://www.meaction.net/event/canary-corps-community-education-workshop/
 
Reminder of a recurring event hosted by #MEAction every Thursday:

Pillow Writers: An ME/CFS Writing Group

https://www.meaction.net/event/pillowwriters/2023-11-16/
#MEAction said:
#MEAction is excited to partner with longtime ME advocate and mother of a pwME, Bobbi Ausubel, to host a brand new writing group for people with ME, Pillow Writers.

This group is for people with ME who are interested in writing stories, tales, poems, essays, songs, and diaries. The writing can be fiction, non-fiction, and even whimsical.

The group will be offered every week on Thursdays from 11am PST/2pm EST* and will be about an hour and a half.

Members of the group will be able to drop in or out throughout the time and attend when they are able. Members will not need to attend every week, but we want to provide an option to connect once a week if possible.
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Find the time in your time zone here:
https://www.timeanddate.com/worldcl...iting+Group&iso=20231116T11&p1=137&ah=1&am=30
 
"Check out the Updated, Expanded, Revamped MEpedia!"

https://www.meaction.net/2023/11/15/check-out-the-updated-expanded-revamped-mepedia/
Great news! About six months ago, we began a project to update, expand, and revamp MEpedia. Due to a generous grant, we were able to create a project scope, hire respected experts in accessibility and MediaWiki development, and make several important changes to MEpedia!

MEpedia is one of the most utilized resources for researchers, clinicians, and people living with ME/CFS, with over 36 million page views. However, the software running MEpedia, MediaWiki, was out of date. We hired an expert to upgrade our software to a version of MediaWiki that will be supported until 2025. We also hired an accessibility expert to suggest fixes and made changes to our site layout based on their recommendations. Finally, we fixed some bugs, and updated the site’s graphics to be more consistent.

Now our MEpedia content has a safe and stable long-term home!
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ahimsa said:
"Check out the Updated, Expanded, Revamped MEpedia!"

https://www.meaction.net/2023/11/15/check-out-the-updated-expanded-revamped-mepedia/
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I am new here though not new to this disease. I checked out the entry for Functional Neurologic Disorder (because it has been an issue for me to get taken seriously etc.) It was glowing. I sent an e-mail asking if this was wise to leave as is given that people are being harmed by this diagnosis and the treatment recommendations (GET and therapy). The response was that I was welcome to edit per policies. I’m not that well but is it wise to have something advertised for ME/CFS people that recommends these therapies? I will grant you I don’t believe that this is a legitimate illness but still…..
 
LJord said:
I am new here though not new to this disease. I checked out the entry for Functional Neurologic Disorder (because it has been an issue for me to get taken seriously etc.) It was glowing. I sent an e-mail asking if this was wise to leave as is given that people are being harmed by this diagnosis and the treatment recommendations (GET and therapy). The response was that I was welcome to edit per policies. I’m not that well but is it wise to have something advertised for ME/CFS people that recommends these therapies? I will grant you I don’t believe that this is a legitimate illness but still…..
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I am not on the staff at #MEAction, and I'm no expert on MEpedia (or on any other Wiki), but here are my two cents.

Crowdsourced resources like wikis are only as good as the information that's provided by the editors. Editors are usually volunteers working on an ad hoc basis.

There's always a problem with lack of ownership for these things. When an issue is found, whether it's on Wikipedia or MEpedia, there's usually no way to report that to a central editing team who will look into it and decide what changes should be made.

I don't think there's an #MEAction project leader who manages a team of volunteers and/or prioritizes what additions or error corrections should be done in MEpedia. But I could be wrong!

For example, if you look at the Functional movement disorder entry (Functional Neurologic Disorder appears to redirect to this entry) the first thing listed for this this entry is that it needs to be rewritten.

And the discussion section says:
Needs rewriting

Low quality sources, based on a poor quality Wikipedia page which is dominated by Jon Stone's assertions (neurosymptoms.org is his website). Nothing here mentions misdiagnosis, or which symptoms also exist in ME/CFS. Eg the Canadian Consensus Criteria refers to De Becker's large study which found paralysis was a symptom of ME, although this was not included in the CCC. ~Njt (talk) 07:30, October 17, 2019 (EDT)
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It would be great if MEAction to created a volunteer team to manage the editing side of MEpedia. But as far as I can tell the grant money was used for updated software, new hosting platform, translations, accessibility, etc.
 
I occasionally use MEPedia to look up bits of historical information and references listed. I would never use MEPedia to find out current medical information, as so much of it is very poor quality. My preference would be for MEPedia to stick to what it does well, which is provide a handy source of references on some historical stuff and general information like names and links for current researchers and details of advocacy and research organisations. Personally I think they should remove all the sections on current medical topics.
 
LJord said:
I checked out the entry for Functional Neurologic Disorder (because it has been an issue for me to get taken seriously etc.) It was glowing.
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Learn more
neurosymptoms.org
| ICD10 blue book, p127
FND Hope
DSM-5 (Google books preview)
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That entry was added by user:Notjusttired in 2018a and 2018b.

Trish said:
Personally I think they should remove all the sections on current medical topics.
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If the people editing with good intentions are doing so credulously and non-critically, that would be a good idea.
 
A Year of Exciting Medical Education Achievements

https://www.meaction.net/2023/11/29/a-year-of-exciting-medical-education-achievements/
#MEAction said:
A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for diagnostic improvement, with Ravindra Ganesh, and Stephanie Grach, and I on the grant as co-investigators.

Our project, Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Implementation of an Enhanced Education Protocol and Care Process Model has so far produced:
  • Updates to the Mayo Clinic public-facing page on ME/CFS
  • A new diagnostic and treatment algorithm for ME/CFS on AskMayoExpert, available to all clinicians in the Mayo system and outside subscribers
  • A successful Concise Clinical Review in Mayo Clinic Proceedings with an associated one-credit continuing medical education (CME) course
  • A longer, video-based CME series, which has been scripted and half of which has already been recorded, along with pre- and post-questions
This year-long project has been fruitful, and has led to additional projects we’ll be excited to announce in the future!
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#MEAction said:
There were many aspects of the work we found especially useful and rewarding. We were very pleased with the diagrams included in our Concise Clinical Review, Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
...

The paper has earned an impressive Altmetric score: a measure of how much attention the paper has received!

The Altmetric score is in the high 800s, meaning it is likely one of the most talked-about and shared papers of the year. It’s in the top 1% of papers of a similar age for shares, and the top 3% in Mayo Clinic Proceedings, which is an extremely prestigious journal. It’s the #22 paper of all time published in this journal as well.
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Just a couple of quotes, lots more info at the link above.
 
https://millionsmissing.meaction.net/mm24/?mc_cid=3954d434a7&mc_eid=83ddbd3a71

WE ARE THRILLED TO ANNOUNCE OUR VISION FOR #MILLIONSMISSING 2024!
This year, we are launching a national campaign to educate hospital systems and medical schools about ME/CFS by encouraging medical schools to Teach ME, and major hospitals to Treat ME. Our goal is to hold in-person events at these institutions the week of May 3rd to May 12th.

Our goal is to offer solutions and ultimately build partnerships with these hospital systems to create change. The tenor of this #MillionMissing will be geared towards forging new alliances and working together to transform healthcare for people with ME. This is not a protest against hospital systems or medical schools.

We encourage cities around the world to join #MEAction in creating their own #TeachMETreatME events. We also recognize that you understand your local healthcare systems best, and support doing what is right for you and your community.

WE NEED YOU to help pull off a campaign at this scale! Like so many #MillionsMissings before, our success rests on our collective shoulders.
 
From MEAction:

Sunday, January 7 - Caregiver Support Call
12 noon Pacific Time / 3 PM Eastern Time

https://www.meaction.net/event/me-partner-caregivers-support-group/2024-01-07/

"The Partner Caregivers Support Group invites caregivers who are spouses, partners, or significant others of people with ME/CFS or Long COVID (and associated conditions) to join us to connect, share, and support each other."

Zoom meeting is held the first Sunday of each month.

Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=#MEAction+Partner/Caregiver+Support+Call&iso=20240107T15&p1=179&ah=1
 
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Sunday, January 20
CAREGIVER SUPPORT CALL ( for caregivers of people with ME (myalgic encephalomyelitis), Long COVID and associated conditions)

https://www.meaction.net/event/me-caregiver-support-call/2024-01-20/

3:30pm ET/8:30 pm in Great Britain & Ireland
Find the time in your time zone here:
https://www.timeanddate.com/worldcl...R+SUPPORT+CALL&iso=20240120T1530&p1=2416&ah=1

We welcome caregivers of people with chronic diseases such as myalgic encephalomyelitis (ME), Long COVID, MCAS, etc. to join our calls to connect with and support each other. Please join us for the third Saturday of each month at 12:30 pm PT / 3:30 pm ET for our ME/LC (and associated conditions) Caregiver Support Call.

https://twitter.com/user/status/1744092614721204722
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From an #MEAction email:
#MEAction said:
We are excited to begin the new year by taking our first steps towards organizing our #MillionsMissing 2024 campaign to Teach ME, Treat ME.

Our goal for #MillionsMissing 2024 is to host medical education events at hospital systems and medical schools across the country the week of May 3rd to May 12th, and to begin building relationships with our nation’s most critical medical systems.

Please join us for an informational session on Saturday, Jan. 20th at 11 a.m. PT / 2 p.m. ET / 7 p.m. GMT to learn about how you can get involved in organizing an event at a hospital or medical school near you to make this campaign as big and successful as possible!
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Link to full email, which includes links to RSVP for this meeting or to sign up as a volunteer:

https://mailchi.mp/meaction/join-our-millionsmissing-info-session-on-jan-20th

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...rmational+session&iso=20240120T11&p1=224&ah=1
 
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