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meactmaryland.bsky.social
MEActMaryland
@meactmaryland.bsky.social
1.9K followers 1.8K following 190 posts
#MEActionMaryland Maryland chapter of the #MEAction Network: advocacy, education & support for people with Myalgic Encephalomyelitis #MECFS & complex chronic illnesses in MD/DMV https://youtube.com/@meactmaryland https://linktr.ee/meactmd
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meactmaryland.bsky.social
MEActMaryland @meactmaryland.bsky.social · Jun 3
The objectives of this #MedEd webinar:
1) Joint hypermobility & Ehlers-Danlos Syndrome are risk factors for ME/CFS, orthostatic intolerance, & structural dysfunctions
2)Symptoms can be provoked by application of a neural strain
3) Adverse neural tension & neural tension dysfunction.
Alt ID: Graphic in blue/ yellow/ and white sharing info about the webinar “Biomechanical Manifestations in Pediatric ME/CFS” which launched on June 9 at 1 pm ET. The graphic also lists things you will learn and shares that it will be facilitated by #MEAction Maryland. Those are also listed in this post. #TeachMETreatME logo is in the bottom corner. This series will be available online at youtube.com/@MEActmaryland
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Reposted by MEActMaryland
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
5-page @scienceforme.bsky.social post-exertional malaise ( #PEM ) fact sheet
www.s4me.info/docs/PEM_Fac...

Headings:
-Characteristics of PEM
-Symptoms of PEM
-Exertion and other PEM triggers
-Effects of exertion that are not PEM
-Living with PEM
-Examples of PEM
-Research on PEM

#MEcfs #CFS #PwME
Logo: Science for ME: Where science and ME/CFS community meet Post-exertional malaise (PEM) Key points  People with ME/CFS have episodes when they are much more ill than usual following physical or mental exertion. This is called post-exertional malaise, or PEM.  PEM is a hallmark of ME/CFS and is important for diagnosis  Activities like a short walk or reading a few pages may trigger PEM. For the most severely ill, even chewing may trigger it. For many, light, sound and other sensory stimuli also trigger PEM. Often it is the combined effect of all activities and stimuli over a day or more that triggers PEM.  PEM usually starts hours or a day or two after it is triggered and can last for hours, days, weeks or longer. During this time, a person cannot do as much as usual and needs to rest.  There is no effective treatment for PEM.  PEM is not the same as the fatigue and muscle soreness anyone can experience after more activity than usual.
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meactmaryland.bsky.social
MEActMaryland @meactmaryland.bsky.social · 6d
Tues, Oct 7th at 7pm

1st meeting of the 2025-2026 Advocacy Year.

NEW ZOOM link in bio.

#MEAction website link not yet updated 10/5
orange & black background with white text picture of fall foliage with red/orange leaves on the ground text reads: Do the October Slide with Us! 1st meeting of the 2025-2026 Advocacy year Tuesday, October 7th @ 7pm New Zoom links in bio @MEActMaryland.bsky.social logo bottom left corner
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Reposted by MEActMaryland
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 12d
🧵
"Myalgic Encephalomyelitis in Childhood: How the Paediatrician Can Help" by Nigel Speight

This useful document was handed out at #MEAction stall at March 2025 Royal College of Paediatrics & Child Health Conference

#MyalgicEncephalomyelitis #PwME @meactionuk.bsky.social

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MYALGIC ENCEPHALOMYELITIS IN CHILDHOOD How the Paediatrician Can Help Dr Nigel Speight MA, MB, BChir, FRCP, FRCPCH I am a paediatrician based in County Durham who has seen approxi- mately 200 children with ME in my local area over the last 20 years, as well as a further c2000 from outside the area. Most of my cases are teenagers but I have a handful of quite severe cases in the 5-10 age group. I have seen two cases where the onset appeared to be before the age of two. Research has consistently shown that ME, also (misleadingly) referred to as ‘chronic fatigue syndrome’, has a major negative impact on the quality of life of patients young and old. By making a diagnosis and offering appropriate management and support we can improve the quality of life of young ME patients. ≈≈≈≈≈≈≈ Importance of Diagnosis First and foremost it is important to positively establish an accurate di- agnosis. It is vital that a proper history is taken and that sufficient time is allocated for this task. Only then will the distinctive clinical picture that permits a positive diagnosis of ME be uncovered. The commonest reason for missing the diagnosis is to concentrate on one symptom on- ly, or to take an incomplete history. Clear and simple guidance on diagnosis is set out in the 2021 NICE Guideline: https://www.nice.org.uk/guidance/NG206 While ‘fatigue’ is commonly accepted as a key symptom, what ME pa- tients experience is better described as reduced energy levels, to- gether with ‘fatiguability’. All symptoms can be made worse by physical exertion and mental effort can also make physical symptoms worse. When physically depleted pa- tients will notice their mental faculties deteriorate, and they can be- come confused and forgetful. NICE have recognised Post Exertional Malaise (PEM), also described as Post Exertional Symptom Exacerbation (PESE), as a cardinal feature of the condition. It is also recognised that patients experience deterioration after exposure to sensory stimulus …
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Reposted by MEActMaryland
hollyl.bsky.social
Holly L (First Grace28 at the other place) she/her @hollyl.bsky.social · 11d
Yes and yes! Hope you can join tomorrow!

#pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #disability
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 11d
Need a little distraction? Enjoy learning about a new book?

Join us for a Q&A with author and #MEAction volunteer Brian Buckbee TOMORROW - October 1st at 3 pm ET!

Register here: www.meaction.net/event-detail...

#pwME #Book #author #disability #chronicIllness #InvisibleIllness
pale pink square image with stars and starburst around the image. In the center is the picture of a book, We should all be Birds which features a pigeon. Black font, Q&A with Author Brain Buckbee. Wednesday, Oct 1st at 12pm PT/3pm ET. Meaction logo right top corner.
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meactmaryland.bsky.social
MEActMaryland @meactmaryland.bsky.social · 12d
One more day!

This fantastic Mayo Clinic #MyalgicEncephalomyelitis #CME has just the rest of today & tomorrow, Sept 30th left. Send it to your providers ASAP!
#MECFS #MedSky
exceedhergrasp1.bsky.social
It's ME(Jaime) @exceedhergrasp1.bsky.social · 15d
Need #CME, #MedSky? You can take this Mayo Clinic #MECFS (myalgic encephalomyelitis/chronic fatigue syndrome) CME-- but just until Tuesday!

Infection-associated chronic conditions are more prevalent than ever but under-taught in med school. Don't miss out on this opportunity to learn dx and tx!
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 26d
Take action today!

Contact your doctor or nurse practitioner to let them know they have 2 more weeks to take the Mayo Clinic Proceeding CME on ME/CFS.

Sample messaging: docs.google.com/document/d/1...

Thank you!

#MedEd #pwME #MECFS #CME

Thank you to @exceedhergrasp1.bsky.social!
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Reposted by MEActMaryland
litsadremousis.bsky.social
Litsa Dremousis @litsadremousis.bsky.social · 14d
Telehealth is crucial for the tens of millions of Americans w/ #MyalgicEncephalomyelitis, #LongCovid, or dozens of other major illnesses and/or #disabilities.

Please help us save telehealth!

Even if you're healthy, this greatly impacts someone you love❤️
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 16d
Take action to save telehealth now! You can call or email your member of Congress.

To make this action easier, we have drafted up a sample script/email wording you can use: www.meactions.org/telehealth

#Telehealth #PwME #MECFS #LongCovid #disability
Graphic with megaphone and speech bubble in bright colors. Text: Take action today: support keeping telehealth!
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Reposted by MEActMaryland
massmecfs.bsky.social
The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 16d
We are so happy to announce that we will have Beth Pollack as our guest speaker for our Annual Meeting! Details coming soon!
MassMECFS.org
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Reposted by MEActMaryland
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 16d
Take action to save telehealth now! You can call or email your member of Congress.

To make this action easier, we have drafted up a sample script/email wording you can use: www.meactions.org/telehealth

#Telehealth #PwME #MECFS #LongCovid #disability
Graphic with megaphone and speech bubble in bright colors. Text: Take action today: support keeping telehealth!
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Reposted by MEActMaryland
aankphd.bsky.social
Amy N-K @aankphd.bsky.social · 17d
I do lukewarm showers and sit on the floor while drying my hair to keep from getting dizzy. Heat and standing still both tend to trigger bad things.
On the upside, autumn is here along with salty soups and walks in cool weather. I am so glad! (The cold never bothered me anyway…) 🍁❄️ #dysautonomia
thezebraalliance.bsky.social
The Zebra Alliance Community @thezebraalliance.bsky.social · Aug 16
If you know, you know. 🤪😄😉
What tips do you have for people struggling with this?

#chronicilless #raredisease #EDS #ehlersdanlossyndrome #dysautonomia #POTS #healthmeme #meme #memes #jokes
someecards "You don't know what fatigue is until you've had to rest after taking a shower"
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meactmaryland.bsky.social
MEActMaryland @meactmaryland.bsky.social · 17d
Telehealth ends with September! Use @peoplescdc.org's action tool to contact Congress & urge them:

Keep Telehealth! Our community relies on it as do millions of other Americans. There is a bill being considered now!

More details in the full PeoplesCDC🧵
actionnetwork.org/letters/cmsm...
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Reposted by MEActMaryland
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 23d
Are you a medical provider in need of a concise but helpful CME? Are you a patient wishing your clinicians knew more about ME, aka ME/CFS?

We have a CME for you but it is only available until Oct 1st.

Sample language & links:
docs.google.com/document/d/1...

#MedEd #CME #MECFS #NEISvoid
Laptop showing the Mayo Clinic Proceedings paper and CME "Diagnosis and Management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome" Text above the laptop: ME/CFS CME Available! Until October 1st! Send it to your clinician now. Jaime Seltzer was one of the co-authors. bit.ly/MayoCME8
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Reposted by MEActMaryland
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 22d
"In a press release following the event, Health and Human Services (HHS) announced a new Long COVID public education and awareness campaign as well as an 'open source' medical resource platform."
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meactmaryland.bsky.social
MEActMaryland @meactmaryland.bsky.social · 22d
THIS. So much this.
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 22d
From @thesicktimes.org HHS coverage:

“The makeup of the panels was not representative of the affected population to such a degree that the homogeneity appeared pointed and purposeful,” said #MEAction scientific director Jaime Seltzer. @exceedhergrasp1.bsky.social

thesicktimes.org/2025/09/18/k...
Kennedy’s HHS commits to Long COVID, but without clear funding - The Sick Times
Following two roundtable discussions with leading researchers and government officials — but limited patient engagement — HHS announced a public awareness campaign and medical resource platform
thesicktimes.org
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Reposted by MEActMaryland
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · Sep 12
We have so many amazing new designs and items available in our store! www.bonfire.com/store/meacti...

Ready for fall? We have hoodies, sweatshirts, & joggers galore! Want a hot cuppa? We have a mug for that!

Most designs were created by volunteer @hospmom.bsky.social. Thank you, Jess!

#pwME
Text New designs in our store. Check out our brand new designs and products! https://bit.ly/MEActionStore 6 product photos. Each shirt has #MEAction under the design: 1 Teal tee Text: If you're reading this I'm pacing 2 Red hoodie with graphic of a spoons Text: I saved my spoons for this 3. Black jersey Text: Kicking ass taking naps 4. Jade zip-up hoodie with small battery showing one bar left Text: low power mode 5. Red hoodie. Text Rest is best 6 Black joggers with #MEAction heart logo
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Reposted by MEActMaryland
longcovidcollect.bsky.social
Long Covid Collective @longcovidcollect.bsky.social · 24d
New study links long COVID to:
– Heavier periods
– Spotting
– More bleeding days
– Flare-ups of fatigue, PEM, brain fog during parts of the cycle

Researchers also found hormone receptor & inflammation changes.
Long COVID linked to heavier periods and symptom flare-ups during menstruation
Researchers found that long COVID is linked to heavier, longer, and more irregular bleeding without disrupting ovulation. Symptom severity also peaks around menstruation, likely driven by hormonal and...
www.news-medical.net
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meactmaryland.bsky.social
MEActMaryland @meactmaryland.bsky.social · 27d
Low power mode is -unfortunately- super relatable over here right now!

#ChronicIllness #NEISVoid
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 27d
Are you in low power mode? Is it your 24/7 reality or maybe just a mode you have to visit frequently?

We have so many great new items & designs!

Order today! www.bonfire.com/store/meacti...

#pwME #MyalgicEncephalomyelitis #spoonie #ChronicIllness #MECFS #LongCovid #MCAS #Fibro #POTS #disability
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meactmaryland.bsky.social
MEActMaryland @meactmaryland.bsky.social · 27d
Posted this link to @whitneydafoe.bsky.social's #MECFS Resource list as a response elsewhere, but it is such a phenomenal resource it deserves a spotlight post

www.whitneydafoe.com/mecfs/resour...
Whitney Dafoe - ME/CFS Resources
Whitney Dafoe - Resources for ME/CFS - Information about ME/CFS for Patients, Caregivere, Family, Friends and supporters
www.whitneydafoe.com
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meactmaryland.bsky.social
MEActMaryland @meactmaryland.bsky.social · 27d
www.whitneydafoe.com/mecfs/resour...
Whitney Dafoe - ME/CFS Resources
Whitney Dafoe - Resources for ME/CFS - Information about ME/CFS for Patients, Caregivere, Family, Friends and supporters
www.whitneydafoe.com
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meactmaryland.bsky.social
MEActMaryland @meactmaryland.bsky.social · 27d
Bateman Horne Center's Clinical Care Guide has thoughtful word choice (of the half I am through). It's well designed & planned out. A good resource for healthcare workers or people living with illness.

batemanhornecenter.org/wp-content/u...
batemanhornecenter.org
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Reposted by MEActMaryland
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 28d
Dr. Peter Rowe was guest in a podcast for paediatricians, The Cribsiders Podcast, where he talked about Long Covid and ME/CFS in children and adolescents.

thecurbsiders.com/cribsiders-p...

#MEcfs #LongCovid #LongCovidKids #LCKids
#152: Long Story Short - The Curbsiders
Understanding Long COVID in Children and Adolescents What does Long COVID really look like in kids and teens? In this episode, we’re joined by Dr. Peter Rowe from Johns Hopkins to unpack the recogniti...
thecurbsiders.com
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Reposted by MEActMaryland
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 28d
Prof. Leonard Jason invites ME/CFS patients, their families, healthcare providers, and researchers to participate in an online survey for a research study on their perspectives on case definitions and cardinal symptoms of this illness.

redcap.is.depaul.edu/surveys/?s=P...

#MEcfs #CFS #PwME
Can we reach consensus on an ME research case definition?
redcap.is.depaul.edu
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Reposted by MEActMaryland
jenny-lou.bsky.social
Jenny Lou @jenny-lou.bsky.social · 29d
#mecfs #MyastheniaGravis #chronicfatiguesyndrome #me #cfs
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meactmaryland.bsky.social
MEActMaryland @meactmaryland.bsky.social · 29d
The new designs for #MEAction are inspired! A super talented volunteer, @hospmom.bsky.social, created most! (Woot woot Jess)

Check out the new sayings & products!
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · Sep 12
We have so many amazing new designs and items available in our store! www.bonfire.com/store/meacti...

Ready for fall? We have hoodies, sweatshirts, & joggers galore! Want a hot cuppa? We have a mug for that!

Most designs were created by volunteer @hospmom.bsky.social. Thank you, Jess!

#pwME
Text New designs in our store. Check out our brand new designs and products! https://bit.ly/MEActionStore 6 product photos. Each shirt has #MEAction under the design: 1 Teal tee Text: If you're reading this I'm pacing 2 Red hoodie with graphic of a spoons Text: I saved my spoons for this 3. Black jersey Text: Kicking ass taking naps 4. Jade zip-up hoodie with small battery showing one bar left Text: low power mode 5. Red hoodie. Text Rest is best 6 Black joggers with #MEAction heart logo
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meactmaryland.bsky.social
MEActMaryland @meactmaryland.bsky.social · Sep 12
Also share your stories via email & over social media with your elected reps!
meactmaryland.bsky.social
MEActMaryland @meactmaryland.bsky.social · Sep 12
#telehealth legislation expires (AGAIN) in the US at the end of this month (Sept 25)

If it is within your envelope, join #MEAction for a call party Wed, Sept 17th @ 3pmET/12pm PT to contact your elected officials.

Help us tell Congress how vitally important Telehealth is to our Community
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · Sep 11
Join us next week for a call party to contact our elected officials about upcoming telehealth legislation- Sept. 17th at 12 pm PT/3 pm ET. RSVP: us06web.zoom.us/meeting/regi...

Ready to take action today? Sample script: www.meactions.org/telehealth

#pwME #disability #Telehealth #LongCovid #MECFS
Welcome! You are invited to join a meeting: Community Call Party - Save Telehealth. After registering, you will receive a confirmation email about joining the meeting.
Please join us for a call party to contact our elected officials about the upcoming Telehealth legislation. On the call we will introduce ourselves, talk about the script, and make the calls with the ...
us06web.zoom.us
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