Lmst

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"Chronic living therapy Therapist perspective: Dan Wyke. An interview with counsellor and person with ME, Dan Wyke"

https://chroniclivingtherapy.com/dan-wyke-interview/

Screenshot is from the latest Science for ME weekly update

#MEcfs #CFS
@mecfs @longcovid @chronicillness @spoonies

Chronic living therapy Therapist perspective: Dan Wyke
And interview with counsellor and person with ME, Dan Wyke. "The harm caused by gaslighting by medical professionals is real and profound. It’s immensely hard for patients to live in a world that doesn’t want to acknowledge the reality of individuals’ illness and suffering. Not only can it lead to dangerous neglect but it can also cause patients to question their own sense of reality."
Interview l Thread

Documentary: Doctors as Patients

https://youtu.be/J0ywwLIfH_w?si=hZv0mzlGtnLzpwim

Screenshot is from the latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#LymeDisease #lyme

Documentary Doctors as Patients
A moving, honest and thought provoking documentary interviewing five medical doctors with post-acute infection-associated syndromes like ME, Long Covid and chronic Lyme. They talk about their experiences, what they were taught about these illnesses as students and what they have learned as patients. Directed by Anil van der Zee. The documentary is in Dutch and has English subtitles.
Documentary l Thread

Our latest News in Brief post has headlines and links to further reading for #MECFS, #LongCovid, and related news, advocacy and research for the week of April 28 - May 4

Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research

https://www.s4me.info/threads/news-in-brief-may-2025.43985/#post-606748

@mecfs

📰 Hier findest Du täglich Informationen zu #Klima & #Wissenschaft auf Deutsch. Mit Deiner Unterstützung kann ich das weiterhin kostenlose tun. Ich möchte helfen, #Sprachbarrieren zu überbrücken und möglichst viele Meldungen mit Bezug zur #Forschung bereitstellen.

Werde Unterstützer-Mitglied: https://steadyhq.com/klimacrew 👥

oder hilf' mit einer Einzelspende: https://ko-fi.com/tinoeberl 💶

#Klimawandel #Klimaschutz #Science #Klimakommunikation #Infektionsschutz #LongCovid #PostCovid #MECFS #Endometriose

#MECFS: Plakate für #Liegenddemos in allen teilnehmenden Städten zum 12. Mai (tw. andere Daten) findet ihr hier:
https://drive.google.com/drive/folders/1TwZCK3X4yARKVL5QPfwBMQcAUxU88qqN

Screenshot der Übersicht der 28 Demoplakate + der Vorlage.

Just planted some seeds and I have the Stardew Valley winter soundtrack stuck in my head for some reason.

Today's list:
Purple peacock beans
Shungiku
Phacelia tanacetifolia
Purple Alyssum
Lacinato and purple kale starts

Already planted, red currant, Kobutakana mustard, potted sweet woodruff, potted mojito mint, potted garlic chives.

This is my "unruly bed", planted away from everything else with some buried pots to help prevent escapees. The mint especially gets a double pot which works well for preventing root spread, but i designed this bed with the expectation that things might take over. I'm actually hopeful the mustard and shungiku might, because who doesn't need more stir fry greens?

Second bed full built and planted. Took months of tiny little steps, but I did it!

#garden #gardening #mecfs #growYourOwn

2/
"ME/CFS and LC share symptomatic, reduced aerobic capacity at peak exercise, which is driven by preload insufficiency and impaired systemic O2 extraction"

#MEcfs #LongCovid
@mecfs @longcovid

New from Systrom team (US):

Exercise Pathophysiology in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID: Commonalities Detected by Invasive Cardiopulmonary Exercise Testing

https://www.atsjournals.org/doi/abs/10.1164/ajrccm.2025.211.Abstracts.A7881

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

1/

NIH - RECOVER Research Review (R3) Webinar

"Understanding Metformin Use and Long COVID and ME/CFS following COVID-19 Infection: Insights from Two Studies"
Tuesday, May 13 at Noon ET

https://recovercovid.org/r3-seminar-series

Register:
https://rtiorg.zoom.us/webinar/register/WN_TSbklxuVTOODL9MuV6DUHA#/registration

#LongCovid #MEcfs @longcovid @mecfs

NZ National Ethics Advisory Committee publishes Finding Balance:Ethical Principles for Epidemics & Pandemics"

https://neac.health.govt.nz/publications-and-resources/neac-publications/finding-balance/

"Analyses of pandemic response strategies should fully consider the long-term health impacts of both the disease & delayed health service delivery”

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
@covid19 #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 #CovidIsNotOver #mecfs @mecfs #novid

(Not a recommendation)
Submission from RACGP:
The Royal Australian College of General Practitioners submitted a response to the NHMRC scoping survey for the development of clinical practice guidelines for ME/CFS.

https://www.racgp.org.au/getmedia/c729cc55-8d02-4244-bfa6-da42c0eb9cf1/RACGP-Submission-CFS-ME-scoping-30-April-2025.pdf.aspx

#MEcfs #CFS @mecfs

Hey spoonies with #longCOVID and/or #MECFS, I have been referred to a long covid clinic where they work with the CATS (Cognitive Activation Theory of Stress), overview here: https://pubmed.ncbi.nlm.nih.gov/20359586/
Does anybody have experience with this? I'm getting a bit nervous but willing to try almost anything after almost three years. I had an intake chat to give my history and the nurse suggested I could read up on this theory if I want (I'm a researcher, not in medicine/psych, but wanted to know their approach). In person appointment next week...
@longcovid @mecfs

🧵
From Chronic Living Therapy e-newsletter:

"Round up of articles spotted online in March/April 2025 that focus on the experiences of people with ‘psychologised’ or hard to diagnose health conditions."

https://chroniclivingtherapy.com/1-elsewhere-web/

@chronicillness
@spoonies @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM
#chronicillness #chroniclife #spoonie

1/

Spotted in the news / online

Read any articles or research of interest to therapists and counsellors? Please share them with us! We've rounded recent ones up up and added them to our website.

Here's what we have from March and April 2025:

Physiology for Psychology by Emily Cochrane of POTSUK on how this physiological condition gets misinterpreted and treated as 'anxiety'.

#ThereforME published a piece by Ella Barnard who is lost for words trying to describe the reality of ME/CFS.

The Smithsonian published an excellent article about how mental illness has become a scapegoat diagnosis for many women with serious physical health problems.

And a fantastic piece of research from Australia looking at young people with ME/CFS and exploring how they face challenges building independence and forming their own identities when their paths diverge so much from those of their peers. Can't recommend this one enough!

Read our roundup of March/April publications: https://chroniclivingtherapy.com/1-elsewhere-web/

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May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this this image.

Day #4
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

ME is also known as Chronic Fatigue Syndrome in some countries REPEATED INFECTIONS HEADACHES FEVER Myalgic CHRONIC SORE THROAT MEMORY PROBLEMS encephalomyelitis INSOMNIA PAIN dozens of everchanging symptoms on a daily basis www.facebook.com/ MEAwarenessPics PLEASE JOIN US! ALLERGIES AND INTOLERANCES SENSORY OVER-LOAD BLURRED Vision HEART PALPITATIONS BRAINFOG MUSCLE WEAKNESS DIZZINESS PROBLEMS DIGESTIVE

4/

(2 minutes)
"What is ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)?" By @brokenbattery

https://www.youtube.com/watch?v=X6f4zCe2ZtA

You can help by liking and/or reposting this short video

#MEcfs #CFS
Day 4
@mecfs

It took a week of 9hr sleeps and rest, but I managed to get my energy levels back to an OK position. A week to restore after a stressful pre-shoot sleep and then long day. #MECFS is not fun.

https://pete.news/hellocomputer/learning-to-pace-myself/

Science for ME: News in Brief
28 Apr - 4 May 2025

This week's research articles, media items, advocacy and other news relating to #MECFS and #LongCovid
@mecfs

https://www.s4me.info/threads/news-in-brief-may-2025.43985/#post-606748

Today I emptied my closet and lugged five boxes downstairs. That's all the packing work I can do today, anything physical is just wiping me out, I think it's the subconscious stress of the house move sucking up my energy.

Yesterday I did no packing, having to do the weekly food shop without a car was exhausting and I slept for a good chunk of the afternoon.

I'm so glad I'm off work now, I couldn't do this and my job.

8 days to get everything ready for the removal company.

#mecfs

Vielen lieben Dank an @sarahbosetti und ihr Team dass Sie aus den, vermutlich hunderttausend, Kommentaren eine Laudatio mit einer #mecfs Betroffenen gefischt haben 🙏
https://www.youtube.com/watch?v=qVH6a5hrNx4

Ich selbst als Betroffener hab mich sehr darüber gefreut dass diese Erkrankung erwähnt wurde, da doch noch viele nicht wissen dass so etwas existiert.
Auch super passend zu dem kommenden #mecfsawareness Tag am 12. Mai an dem Deutschlandweit wieder #liegenddemos veranstaltet werden.

Morning from my night nurse, Pepper. She knows when I'm struggling and snuggles up and purrs. #catsofmastodon #mecfs #spoonies

#MEcfs

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