Lightnews — Scholar-powered news

MEActMaryland @meactmaryland.bsky.social · 3d

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

3

Reposted by MEActMaryland

Tom Kindlon @tomkindlon.bsky.social · 8d

🧵
"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

1/

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 …

2 17 30

Reposted by MEActMaryland

Holly L (First Grace28 at the other place) she/her @hollyl.bsky.social · 7d

Yes and yes! Hope you can join tomorrow!

#pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #disability

#MEAction Network @meactnet.bsky.social · 8d

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

1 2

MEActMaryland @meactmaryland.bsky.social · 8d

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

It's ME(Jaime) @exceedhergrasp1.bsky.social · 11d

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!

#MEAction Network @meactnet.bsky.social · 22d

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!

1 4 5

Reposted by MEActMaryland

Litsa Dremousis @litsadremousis.bsky.social · 10d

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❤️

#MEAction Network @meactnet.bsky.social · 12d

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!

26 42

Reposted by MEActMaryland

The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 12d

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

3 3

Reposted by MEActMaryland

#MEAction Network @meactnet.bsky.social · 12d

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

15 38

Reposted by MEActMaryland

Amy N-K @aankphd.bsky.social · 13d

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

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"

3 15

MEActMaryland @meactmaryland.bsky.social · 13d

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...

3 3

Reposted by MEActMaryland

#MEAction Network @meactnet.bsky.social · 20d

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

22 34

Reposted by MEActMaryland

#MEAction Network @meactnet.bsky.social · 19d

"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."

1 1 7

MEActMaryland @meactmaryland.bsky.social · 18d

THIS. So much this.

#MEAction Network @meactnet.bsky.social · 19d

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

1

Reposted by MEActMaryland

#MEAction Network @meactnet.bsky.social · 26d

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

2 9 26

Reposted by MEActMaryland

Long Covid Collective @longcovidcollect.bsky.social · 20d

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

1 6

MEActMaryland @meactmaryland.bsky.social · 23d

Low power mode is -unfortunately- super relatable over here right now!

#ChronicIllness #NEISVoid

#MEAction Network @meactnet.bsky.social · 23d

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

1 5

MEActMaryland @meactmaryland.bsky.social · 24d

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

7 9

MEActMaryland @meactmaryland.bsky.social · 24d

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

1 2

MEActMaryland @meactmaryland.bsky.social · 24d

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

1

Reposted by MEActMaryland

Tom Kindlon @tomkindlon.bsky.social · 24d

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

3 9

Reposted by MEActMaryland

Tom Kindlon @tomkindlon.bsky.social · 24d

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

1 4 11

Reposted by MEActMaryland

Jenny Lou @jenny-lou.bsky.social · 25d

#mecfs #MyastheniaGravis #chronicfatiguesyndrome #me #cfs

1 1 1

MEActMaryland @meactmaryland.bsky.social · 26d

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!

#MEAction Network @meactnet.bsky.social · 26d

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

3 5

MEActMaryland @meactmaryland.bsky.social · 26d

Also share your stories via email & over social media with your elected reps!

MEActMaryland @meactmaryland.bsky.social · 26d

#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

#MEAction Network @meactnet.bsky.social · 27d

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

1 5 9

Reposted by MEActMaryland

#MEAction Network @meactnet.bsky.social · 29d

RECOVER-TLC 2nd annual workshop goals:

- Update community

- Solicit community feedback on key aspects of TLC- intervention selections, protocol concepts/design, collaborations.

-Continue to highlight opportunities for additional clinical trials

#LongCovid #RecoverTLC #pwME

Photo of screen showing goals of workshop. Update community on yearly progress made in RECOVER-TLC. Solicit community feedback on key aspects of TLC- intervention selections, protocol concepts/design, collaborations. Continue to highlight opportunities for additional clinical trials based on what is known about agent mechanism of action, symptom burden and available interventions

3 7