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**A feral Cass (they/them)** @JustGrist@disabled.social · 2 j

A feral Cass (they/them) @JustGrist@disabled.social

Anybody got good resources (web pages, studies, etc.) on ME that I can pass on to a friend who's trying to get a diagnosis? Please link them below if you do. Boosts welcome.

#LongCovid #MyalgicEncephalomyelitis #ME

**Tom Kindlon** @tomkindlon@disabled.social · 2 j

2 j

Tom Kindlon @tomkindlon@disabled.social

"Sign Up for INIM’s Nutrition Series"
https://forms.gle/yHHfg6bjFLmus8ew6

People can take part either online or in person (in Davie, FL)

Launches Friday, June 27

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #POTS @pots @mcas
1/

Neuroimmune Nutrition Series
Evidence-based nutrition strategies and practical approaches for patients diagnosed with ME/CFS, long-COVID, POTS, MCAS, and related conditions. Simple recipes to implement these principles in your daily life.

Hosted By:

Irina Rozenfeld, DNP, MSHS, MBA, MSN, APRN, ANP-BC
Annie Lin, D.C.N., CNS, LDN, IFMCP
Violetta E. Renesca, DNP, MBA, APRN, ANP-C, IFMCP
Switch accounts

Not shared

Series Format (11 Sessions)
20 Minutes: Education
30 Minutes: Cooking Experience
10 Minutes: Discussion, substitutions, sampling
Handout: QR code or printable 1-page document with recipe, food science facts, food prep tips etc.

**illmarks** @illmarks@www.illmarks.com · 3 j *

3 j *

illmarks @illmarks@www.illmarks.com

2025_6_13 I(carus) scheduled two phone calls on the same day

https://www.illmarks.com/2025_6_13-icarus-scheduled-two-phone-calls-on-the-same-day/

On a manilla bookmark, the human figure is traced in dark dark blue and has vibrant purple wings which are melting and dripping. some of the drippy ooze is on their body, including in their brainspace. The figure has eyes which are tightly shut and mouth in a tight frown.the dripping is rendered with undulating lines and is the location of the most contrast, drawing the eye down past the figure's legs.

#bodyHorror #cfw #chronicIllness

**Tom Kindlon** @tomkindlon@disabled.social · 5 j

5 j

Tom Kindlon @tomkindlon@disabled.social

Recap for Bateman Horne Center Support Group: Love Relationships and Illness May 20, 2025

https://batemanhornecenter.org/wp-content/uploads/2025/06/20250520-Support-Group-Recap.pdf

Hashtags:
#chronicillness #Spoonielife #chroniclife @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @chronicillness
@spoonies
@disability @longcovid
#LongCovid #PASC @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #dysautonomia @dysautonomia #chronicpain @chronicpain #POTS @pots

**Tom Kindlon** @tomkindlon@disabled.social · 6 j

6 j

Tom Kindlon @tomkindlon@disabled.social

via @me_valentijn

"Healthcare colleagues call pediatricians [in the Netherlands] to order over exhaustion disease ME/CFS" (& the recommendation to use CBT)

Google English translation
https://nos-nl.translate.goog/artikel/2571765-zorgcollega-s-roepen-kinderartsen-tot-de-orde-over-uitputtingsziekte-me-cvs?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp&_x_tr_hist=true

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

NOS News
•
today, 17:47
Healthcare colleagues call pediatricians to order over exhaustion disease ME/CFS
Share this article
Sander Zurhake

Health Care Editor

More than a hundred doctors, psychologists and other healthcare providers are calling on pediatricians and behavioral therapists in an open letter to acknowledge that the therapies they recommend for people with the chronic exhaustion disease ME/CFS do not help but actually make them sicker. "It is time for recognition. For nuance. For humanity."

The letter writers believe that the Dutch Association for Pediatrics and the Association for Behavioral and Cognitive Therapies should adjust the treatment guidelines for patients with ME/CFS based on current science. It has happened that children have physically collapsed, ended up in a wheelchair or were bedridden for the rest of their lives. Some have subsequently chosen euthanasia as adults.

Recently, NOS reports revealed that in the Netherlands, children with ME/CFS are still dealing with this risky treatment: Cognitive behavioral therapy. This treatment teaches children to ignore warning signals when the body indicates to take it easy, for example because an effort is becoming too great.

**Tom Kindlon** @tomkindlon@disabled.social · 6 j

6 j

Tom Kindlon @tomkindlon@disabled.social

From: Frederique Murphy

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

Life with ME: bring ME out of the shadows!
BRING
Me into the light to
Experience its warmth, and
OUT (of the)
So I stop feeling I'm
Held hostage in my own body, A bandoned by almost everyone, Delaying endlessly my dreams, Oppressed by debilitating symptoms, Watching everybody life go forth, So I start brightly living again!
#bringMEoutoftheshadows #MEawareness #MEawarenessmonth

A répondu dans un fil de discussion

**Tom Kindlon** @tomkindlon@disabled.social · 19 juin

19 juin

Tom Kindlon @tomkindlon@disabled.social

“Neuroimaging studies have revealed differences in the brain activity and structure of people with ME/CFS, including poor blood flow and lower levels of neurotransmitters (chemical messengers in the nervous system).”

#MEcfs #PwME #MyalgicEncephalomyelitis
@mecfs

**Tom Kindlon** @tomkindlon@disabled.social · 19 juin

19 juin

Tom Kindlon @tomkindlon@disabled.social

Sympathetic article by an Australian biomedical researcher, Sarah Annesley:

"It’s not just ‘chronic fatigue’: ME/CFS is much more than being tired"

https://theconversation.com/its-not-just-chronic-fatigue-me-cfs-is-much-more-than-being-tired-258803

This site is quite influential: you need to be an academic to write on it

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

**Tom Kindlon** @tomkindlon@disabled.social · 16 juin

16 juin

Tom Kindlon @tomkindlon@disabled.social

From @meresearchuk

A study has highlighted the importance of “feeling heard, valued, and believed” by health professionals – whether consultations are conducted remotely or in person.

Read more: https://tinyurl.com/4m8fx9ks

#MECFS #MyalgicEncephalomyelitis @mecfs

"Feeling heard, valued, and believed was at the crux of every [healthcare] encounter whether conducted remotely or face to face". ' s Leach H et. al., BJGP Open. (2025) hall% RESEARCH I IK INFORM. INFLUENCE. INVEST. SCO36942

**Tom Kindlon** @tomkindlon@disabled.social · 15 juin

15 juin

Tom Kindlon @tomkindlon@disabled.social

Creatine and Post-Viral Fatigue Syndrome: Can a Gym Supplement Support Brain Recovery?

https://propstmetabolichealth.substack.com/p/creatine-and-post-viral-fatigue-syndrome

Comment: I've been taking 12 g/day of Creatine for many months now (with a break every 6 weeks).
This may be contributing to me feeling better.

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

Creatine and Post-Viral Fatigue Syndrome: Can a Gym Supplement Support Brain Recovery?
David Propst
Jun 07, 2025
A month ago, I shared a post exploring the potential of creatine in managing post-viral fatigue. Just yesterday, an updated peer-reviewed study was published and it adds important new insights.

Published in the Journal of the International Society of Sports Nutrition, the paper dives deeper into creatine’s role in energy metabolism, cognitive recovery, and long COVID–related fatigue.

Let’s break down what’s new, what it confirms, and what it means for anyone navigating post-viral fatigue.

**Tom Kindlon** @tomkindlon@disabled.social · 15 juin

15 juin

Tom Kindlon @tomkindlon@disabled.social

Seeing the Invisible: Illuminating brain function in ME/CFS & #LongCovid

https://youtu.be/3-54JAgZ2x8

Dr Chris Armstrong & his team at OMF’s Melbourne ME/ #CFS Collaboration are investigating the link between neuroinflammation, cerebral blood flow, & dysregulated hormones in #MECFS, #POTS, & Long #COVID

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME @pots #PwLC #PASC #postcovid @longcovid
#CovidBrain
#COVID19 #SARSCoV2 #CovidIsNotOver #auscovid19 @auscovid19

YouTubeIlluminating Brain Function in ME/CFS and Long COVIDPar Open Medicine Foundation - OMF

Suite du fil

**Tom Kindlon** @tomkindlon@disabled.social · 14 juin

14 juin

Tom Kindlon @tomkindlon@disabled.social

2/
Exploring barriers and facilitators to effective self-management inindividuals with ME/CFS :an Interpretative Phenomenological Analysis

https://www.tandfonline.com/doi/full/10.1080/23311908.2025.2517870

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

**Tom Kindlon** @tomkindlon@disabled.social · 14 juin

14 juin

Tom Kindlon @tomkindlon@disabled.social

New UK qualitative research:
"there is an urgent need to reduce the reliance on extensive self-advocacy which may help to alleviate this burden by making healthcare systems and support structures more responsive, accessible and patient-centred"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

**Tom Kindlon** @tomkindlon@disabled.social · 13 juin

13 juin

Tom Kindlon @tomkindlon@disabled.social

"Emergency departments aren’t trained for Long COVID [& ME/CFS] — and patients are paying the price" by @thesicktimes

https://thesicktimes.org/2025/06/02/emergency-departments-arent-trained-for-long-covid-and-patients-are-paying-the-price/

Among other things, recommends more medical education for healthcare staff in emergency rooms & elsewhere, plus better access to telehealth

Emergency departments aren’t trained for Long COVID — and patients are paying the price
Written by

Lauren May

–

June 2, 2025
Graphic showing a red cross with a large crack running through its center, against a backdrop with small white coronavirus particles on an orange background
Miles Griffis / The Sick Times

**Tom Kindlon** @tomkindlon@disabled.social · 13 juin

13 juin

Tom Kindlon @tomkindlon@disabled.social

I thought this was good (as I'd expect from Oonagh & #ThereForME team):

"The importance of understanding rest: How my experience of rest as an athlete clashed with my experience of rest as a patient"

https://www.thereforme.uk/p/the-importance-of-understanding-rest

Suite du fil

**Tom Kindlon** @tomkindlon@disabled.social · 11 juin

11 juin

Tom Kindlon @tomkindlon@disabled.social

3/
For those with light sensitivity

#PostExertionalMalaise #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs @longcovid #longcovid

Table 4. Symptoms made worse due to physical or cognitive exertion (N = 1534). % (n) "Yes" % (n) at "2" Threshold 99.4 (1525) 98.0 (1504) 98.9 (1517) 98.3 (1508) Items 1. Reduced stamina and/or functional capacity 2. Physical fatigue 3. Cognitive exhaustion 4. Problems thinking 5. Unrefreshing sleep 6. Muscle pain 7. Insomnia 8. Muscle weakness/instability 9. Temperature dysregulation 10. Flu-like symptoms 11. Aches all over your body 12. Physically fatigued while mentally wired 13. Dizziness 14. Gastro-intestinal problems 15. Headaches 16. Ataxia 17. Increased heart rate/heart palpitations 18. Weak or stiff neck 19. Joint pain 20. Problems with speech 21. Sore throats 22. Muscle twitching 23. Night sweats and chills 24. Sore eyes 25. Nerve pain 26. Sore lymph nodes 27. Nausea 28. Tinnitus 29. Trouble breathing 30. Neurological symptoms 31. Excessive sleep 32. Loss of appetite 33. Migraines 34. Cardiac pain and/or arrhythmia 35. Brain twangs 36. Severe burning sensation all over skin 37. Paralysis/inability to move 38. Premenstrual symptoms 39. Decreased heart rate
Sav

**Tom Kindlon** @tomkindlon@disabled.social · 11 juin

11 juin

Tom Kindlon @tomkindlon@disabled.social

Mind in the mist: the interplay between fatigue, information processing and brain fog

https://www.tandfonline.com/doi/full/10.1080/21641846.2025.2513194

Image is from the latest Science for ME weekly update

Fatigue: Biomedicine, Health & Behavior
Mind in the mist: the interplay between fatigue, information processing and brain fog — Tarek A.-Z. K. Gaber
Editorial from a neuro-rehabilitationist perspective. "In this short paper we tried to highlight the strong and well established link between energy and information as understood by the laws of physics and subsequently, the potential for this link to shed light on the high prevalence of cognitive difficulties in patients suffering from chronic fatigue such as patients with ME/CFS, long Covid, multiple sclerosis, etc."

**Tom Kindlon** @tomkindlon@disabled.social · 10 juin

10 juin

Tom Kindlon @tomkindlon@disabled.social

From meresearchuk

Findings from a study published in the ‘Virology journal’ provide evidence of a causal connection between immune cells and post viral fatigue syndrome.
Read more: https://bit.ly/3ZbLbil
#MECFS #MyalgicEncephalomyelitis @mecfs

Findings indicate "compelling evidence of a probable causal link" between immune cells and post viral fatigue syndrome (PVFS) - an umbrella term which includes ME/CFS, fibromyalgia, and long COVID. Immune cells ®.• Post viral fatigue syndrome „_ Wang et al., Virology Journal (2025) 41114 INFORM. INFLUENCE. INVEST. SCO36942 RESEARCH UK

**Tom Kindlon** @tomkindlon@disabled.social · 10 juin

10 juin

Tom Kindlon @tomkindlon@disabled.social

Given all talk re: Post Exertional Malaise/Post Exertional Symptom Exacerbation in #LongCovid:

Here is "Symptoms made worse due to physical or cognitive exertion" in #MyalgicEncephalomyelitis & #ChronicFatigueSyndrome

Also shows all the range of ME / #CFS
symptoms

#MECFS @mecfs @longcovid
1/

**Tom Kindlon** @tomkindlon@disabled.social · 10 juin

10 juin

Tom Kindlon @tomkindlon@disabled.social

Extracellular vesicle proteomics uncovers energy metabolism, complement system, and endoplasmic reticulum stress response dysregulation postexercise in males with ME/CFS

https://onlinelibrary.wiley.com/doi/10.1002/ctm2.70346

Image is from Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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