#chronicillnesses — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #chronicillnesses, aggregated by home.social.
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Hi, I’m Rook. I’m a 30-something nerdy #trans vixen.
I’ve been doing #WebDevelopment, #programming, and #database stuff since I was a kit, and I'm still loving it.
Currently, I am recovering from #AutisticBurnout and dealing with multiple #ChronicIllnesses.
Previously, I worked with complex #automation and #robotics systems in #HealthCare, doing a mix of #UserSupport, #SystemAdmin, and #DataAnalysis.
At home, I’m constantly tinkering with #SmartHome projects using #HomeAssistant, building my own #electronics, and battling my #3DPrinting hardware.
I also enjoy running around as a big, silly #fox in the #Furry fandom. #Fursuiter
I’m #ActuallyAutistic, #AuDHD, and #ADHD. I’m a proud #transgender member of the #LGBTQIA #queer community,
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3/
Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:
• Insufficient preparation for chronic illness
• Common and serious diseases are neglected in medical training
• Psychosomatic illness
• Inability to accept uncertainty#MedicalGaslighting #Gaslighting #MedMastodon
@longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses -
3/
Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:
• Insufficient preparation for chronic illness
• Common and serious diseases are neglected in medical training
• Psychosomatic illness
• Inability to accept uncertainty#MedicalGaslighting #Gaslighting #MedMastodon
@longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses -
3/
Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:
• Insufficient preparation for chronic illness
• Common and serious diseases are neglected in medical training
• Psychosomatic illness
• Inability to accept uncertainty#MedicalGaslighting #Gaslighting #MedMastodon
@longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses -
3/
Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:
• Insufficient preparation for chronic illness
• Common and serious diseases are neglected in medical training
• Psychosomatic illness
• Inability to accept uncertainty#MedicalGaslighting #Gaslighting #MedMastodon
@longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses -
3/
Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:
• Insufficient preparation for chronic illness
• Common and serious diseases are neglected in medical training
• Psychosomatic illness
• Inability to accept uncertainty#MedicalGaslighting #Gaslighting #MedMastodon
@longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses -
🧵
"How medical training promotes medical gaslighting" by K. Johnstonehttps://mecfs.substack.com/p/how-medical-training-promotes-medical
This is not illness specific.
#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll1/
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🧵
"How medical training promotes medical gaslighting" by K. Johnstonehttps://mecfs.substack.com/p/how-medical-training-promotes-medical
This is not illness specific.
#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll1/
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🧵
"How medical training promotes medical gaslighting" by K. Johnstonehttps://mecfs.substack.com/p/how-medical-training-promotes-medical
This is not illness specific.
#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll1/
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🧵
"How medical training promotes medical gaslighting" by K. Johnstonehttps://mecfs.substack.com/p/how-medical-training-promotes-medical
This is not illness specific.
#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll1/
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🧵
"How medical training promotes medical gaslighting" by K. Johnstonehttps://mecfs.substack.com/p/how-medical-training-promotes-medical
This is not illness specific.
#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll1/
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"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone
https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful
#MedicalGaslighting #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone
https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful
#MedicalGaslighting #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone
https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful
#MedicalGaslighting #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone
https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful
#MedicalGaslighting #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone
https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful
#MedicalGaslighting #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
News Release 9-Mar-2026
Telemedicine remains popular, but who uses it varies widely
https://www.eurekalert.org/news-releases/1119321
“Telemedicine is no longer just a pandemic workaround—it has become a routine part of care delivery,”
#chronicillness #Spoonie #ChronicallyIll #ChronicIllnesses #Spoonies
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News Release 9-Mar-2026
Telemedicine remains popular, but who uses it varies widely
https://www.eurekalert.org/news-releases/1119321
“Telemedicine is no longer just a pandemic workaround—it has become a routine part of care delivery,”
#chronicillness #Spoonie #ChronicallyIll #ChronicIllnesses #Spoonies
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Years of scapegoating rhetoric has led to ‘envy & resentment’ of those with blue badges, research finds
Note: blue badge = UK name for disabled parking permit
Screenshot from AMMES March 2026 Newsletter
#Disabled #Disability #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots -
Scientists Find a Deficiency in This Vitamin Increases Inflammation
Study: Low Vitamin D May Increase Inflammation Elena Noviello – Getty Images Low vitamin D levels may contribute to chronic inflammation, according to a s…
#dining #cooking #diet #food #Nutrition ##inflammation #chronicillnesses #chronicinflammation #Jackienewgent #nutrition #vitamind #VitaminDdeficiency #vitaminDlevels
https://www.diningandcooking.com/2540588/scientists-find-a-deficiency-in-this-vitamin-increases-inflammation/ -
Scientists Find a Deficiency in This Vitamin Increases Inflammation https://www.diningandcooking.com/2540588/scientists-find-a-deficiency-in-this-vitamin-increases-inflammation/ ##inflammation #ChronicIllnesses #ChronicInflammation #JackieNewgent #nutrition #VitaminD #VitaminDDeficiency #VitaminDLevels
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"What do you do?", "had a busy day?" And similar questions are those I dread. I rarely have to meet acquaintances now, thankfully.
But even the grocery drivers can ask that. It's friendly, it's conversational, it's shallow (in an appropriate way, not derogatory).
Even "how are you?" Is a greeting, not a question people want an honest answer to.
This writer thinks "what do you live for?" would be better.
#chronicpain #ChronicIllnesses #chronicillness
https://whatapain.co.uk/what-do-you-do -
"Rather than holding onto the idea that the only life worth living is one without disease, consider expanding your definition of hope to include connection, purpose, & meaning under any circumstances"
From:
Recap: Support group: Coping with Depression & Emotional Overload
https://batemanhornecenter.org/wp-content/uploads/2026/02/20260217-Support-Group-Recap.pdf#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
🧵
"The Quiet Art of Extending a Life: Notes on Assistive Tools, Capacity, and the Dignity of Support"https://onelifelivedwell.substack.com/p/the-quiet-art-of-extending-a-life
Another thoughtful post from this OT who specialises in ME/CFS & long Covid
She calls such devices "capacity extenders".
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots
#Disabled
#Disability1/
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🧵
Another thoughtful blog post from this blogger:"Some people feel validated by an FND diagnosis; we should treat these people with respect, understanding and compassion (even if we think they're wrong). It’s complicated!" by K. Johnstone
https://mecfs.substack.com/p/some-people-feel-validated-by-an
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll1/
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"Somatic symptom disorder: Why your doctor doesn't believe you're really sick: SSD is a mainly-female condition which medicine treats as real and common, but which has no solid scientific basis"https://mecfs.substack.com/p/somatic-symptom-disorder-why-your
I have been impressed by this blogger.
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll1/
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The Emotional Toll of Chronic Illness: Naming the Invisible Grief | Grief is the New Normal
https://www.youtube.com/watch?v=pgqi2W9dmLc
From February 2026 Massachusetts ME/CFS & FM Association newsletter
https://massme.monkeypod.io/mailcoach/webview/campaign/05601954-e0f2-44eb-af44-5aca96c2b253
Comment: I haven't watched it myself so far
#chronicillness #chroniclife #Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots #Fibromyalgia #Fibro #FMS #FM -
How can we manage our wellbeing when interacting with others online?
https://www.actionforme.org.uk/resource/behind-the-screen/
"In this article, we start a conversation about life online, with some reflections on how to manage our wellbeing in this environment."
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #LongCovid #chronicillness @mecfs #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie -
A topic of interest to some in #chronicillness community who could benefit from home visits
News Release
Primary care home visits for older adults declined after payment policy changes & COVID-19 in Ontario
https://www.eurekalert.org/news-releases/1114111https://www.annfammed.org/content/24/1/44
#Homebound #Housebound #SevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disabled
#Disability -
Short blog post by K. Johnstone:
"'You'd get better if you just....' is bullying and we don't deserve it."
https://substack.com/@mecfs/note/c-203079885
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses #LongCovid @longcovid #ChronicPain -
"Creativity and chronic illness" (from the Chronic Living Therapy newsletter)
https://chroniclivingtherapy.com/creativity-chronic-illness/Features:
- Ballet dancer, @anilvanderzee
- Red Tree and ME – international collaborative art project
- Jeremy Jeffs, Photography project
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #TheRedTreeandME1/
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2/
Table of contents for a free 36 page-bookletAlso at the link are the AARP HomeFit Guide worksheets
https://www.aarp.org/livable-communities/housing/info-2020/homefit-worksheets.html
#Disability #Spoonie #ChronicIllnesses #Spoonies
#ChronicallyIll -
I saw this 36-page booklet recommended for people with disabilities & chronic illnesses as well as older people but haven't read.
https://www.aarp.org/livable-communities/housing/info-2020/homefit-guide-download.html
Not sure whether it is mainly of use to those in the US or whether it is pretty international?
#Disabled #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disability1/
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"When Home Becomes a Healing Space" by an OT who specialises in ME/CFS & long Covid.
https://onelifelivedwell.substack.com/p/when-home-becomes-a-healing-space
This particular article is pretty general & suitable for people with lots of chronic illnesses
#chronicillness #Spoonie #MEcfs #LongCovid #ChronicIllnesses #Spoonies @longcovid @mecfs #POTS @pots
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Image is from an email from Institute for Neuro-Immune Medicine Center for Collaborative Research
Links from image:
https://www.cards2warriors.org/
https://www.cards2warriors.org/happy-mail#chronicillness #illness #Illhealth #ChronicIllnesses #Spoonies #Spoonie #ChronicallyIll
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Many with ME/CFS and other chronic illnesses may be able to relate some if not many of these
This was posted as a comment on my FB page today, but I'm not sure who created it originally.
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 @mecfs
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #chronicillness #hiddenillness #invisibleillness
#ChronicIllnesses #Spoonies #Spoonie #POTS @pots #Fibromyalgia #Fibro #FMS #FM -
"Reimagining You: Finding identity, meaning, and purpose when life doesn’t look the way it used to"
https://onelifelivedwell.substack.com/p/reimagining-you
Blog post by a sympathetic and knowledgeable occupational therapist who specialises in ME/CFS and long Covid.
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 @mecfs
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #chronicillness #ChronicIllnesses #Spoonies #Spoonie #ChronicallyIll #Fibromyalgia #Fibro #FMS #FM #POTS @pots -
(Not ME-specific)
"Cost-of-disability payment a priority for 2026, says social protection minister"
"Dara Calleary said he wanted to see a budget proposal provided to him before the summer"
https://www.irishexaminer.com/news/politics/arid-41767685.html
#Disabled
#Disability
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
Bateman Horne Center's "'Coffee'" with a Clinician: Pacing for Holidays and Special Events"
Recording
https://www.youtube.com/watch?v=BNZ563UktawTranscript
https://batemanhornecenter.org/wp-content/uploads/2025/12/CWC-Dec-10-Transcript-edit.pdfI haven't watched it but slides seem sensible
#LongCovid @longcovid @mecfs
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #POTS @pots #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
ENG: In women with chronic pain syndromes, an excellent real-life Brazilian study of full-spectrum cannabis extracts with tailored dosages found improvements in pain relief, cognitive function, motor abilities, professional activities & ability, irritability, anxiety, melancholy, fatigue & sleep quality
ESP: En mujeres con síndrome de dolor crónico, un excelente estudio brasileño en el mundo real sobre extractos de cannabis de espectro completo (flor de cannabis, no fibras de cáñamo) y dosis personalizadas, encontró mejoras en el alivio del dolor, la función cognitiva, las habilidades motoras, las actividades y capacidades profesionales, la irritabilidad, la ansiedad, la melancolía, la fatiga y la calidad del sueño.
https://www.frontiersin.org/journals/pharmacology/articles/10.3389/fphar.2025.1538518/full
#pain #menstrual #menstrualcycle
#autoinmunes #autoinmunedisease
#ChronicIllnesses #chronicpain
#cannabis #Cannabinoids #thc
#cannabinoide #EfectoSéquito
#dolor #mujeres #saludmental
#medicalcannabis #marijuana
#cannabismedicinal #cbd -
ENG: In women with chronic pain syndromes, an excellent real-life Brazilian study of full-spectrum cannabis extracts with tailored dosages found improvements in pain relief, cognitive function, motor abilities, professional activities & ability, irritability, anxiety, melancholy, fatigue & sleep quality
ESP: En mujeres con síndrome de dolor crónico, un excelente estudio brasileño en el mundo real sobre extractos de cannabis de espectro completo (flor de cannabis, no fibras de cáñamo) y dosis personalizadas, encontró mejoras en el alivio del dolor, la función cognitiva, las habilidades motoras, las actividades y capacidades profesionales, la irritabilidad, la ansiedad, la melancolía, la fatiga y la calidad del sueño.
https://www.frontiersin.org/journals/pharmacology/articles/10.3389/fphar.2025.1538518/full
#pain #menstrual #menstrualcycle
#autoinmunes #autoinmunedisease
#ChronicIllnesses #chronicpain
#cannabis #Cannabinoids #thc
#cannabinoide #EfectoSéquito
#dolor #mujeres #saludmental
#medicalcannabis #marijuana
#cannabismedicinal #cbd -
ENG: In women with chronic pain syndromes, an excellent real-life Brazilian study of full-spectrum cannabis extracts with tailored dosages found improvements in pain relief, cognitive function, motor abilities, professional activities & ability, irritability, anxiety, melancholy, fatigue & sleep quality
ESP: En mujeres con síndrome de dolor crónico, un excelente estudio brasileño en el mundo real sobre extractos de cannabis de espectro completo (flor de cannabis, no fibras de cáñamo) y dosis personalizadas, encontró mejoras en el alivio del dolor, la función cognitiva, las habilidades motoras, las actividades y capacidades profesionales, la irritabilidad, la ansiedad, la melancolía, la fatiga y la calidad del sueño.
https://www.frontiersin.org/journals/pharmacology/articles/10.3389/fphar.2025.1538518/full
#pain #menstrual #menstrualcycle
#autoinmunes #autoinmunedisease
#ChronicIllnesses #chronicpain
#cannabis #Cannabinoids #thc
#cannabinoide #EfectoSéquito
#dolor #mujeres #saludmental
#medicalcannabis #marijuana
#cannabismedicinal #cbd -
ENG: In women with chronic pain syndromes, an excellent real-life Brazilian study of full-spectrum cannabis extracts with tailored dosages found improvements in pain relief, cognitive function, motor abilities, professional activities & ability, irritability, anxiety, melancholy, fatigue & sleep quality
ESP: En mujeres con síndrome de dolor crónico, un excelente estudio brasileño en el mundo real sobre extractos de cannabis de espectro completo (flor de cannabis, no fibras de cáñamo) y dosis personalizadas, encontró mejoras en el alivio del dolor, la función cognitiva, las habilidades motoras, las actividades y capacidades profesionales, la irritabilidad, la ansiedad, la melancolía, la fatiga y la calidad del sueño.
https://www.frontiersin.org/journals/pharmacology/articles/10.3389/fphar.2025.1538518/full
#pain #menstrual #menstrualcycle
#autoinmunes #autoinmunedisease
#ChronicIllnesses #chronicpain
#cannabis #Cannabinoids #thc
#cannabinoide #EfectoSéquito
#dolor #mujeres #saludmental
#medicalcannabis #marijuana
#cannabismedicinal #cbd -
ENG: In women with chronic pain syndromes, an excellent real-life Brazilian study of full-spectrum cannabis extracts with tailored dosages found improvements in pain relief, cognitive function, motor abilities, professional activities & ability, irritability, anxiety, melancholy, fatigue & sleep quality
ESP: En mujeres con síndrome de dolor crónico, un excelente estudio brasileño en el mundo real sobre extractos de cannabis de espectro completo (flor de cannabis, no fibras de cáñamo) y dosis personalizadas, encontró mejoras en el alivio del dolor, la función cognitiva, las habilidades motoras, las actividades y capacidades profesionales, la irritabilidad, la ansiedad, la melancolía, la fatiga y la calidad del sueño.
https://www.frontiersin.org/journals/pharmacology/articles/10.3389/fphar.2025.1538518/full
#pain #menstrual #menstrualcycle
#autoinmunes #autoinmunedisease
#ChronicIllnesses #chronicpain
#cannabis #Cannabinoids #thc
#cannabinoide #EfectoSéquito
#dolor #mujeres #saludmental
#medicalcannabis #marijuana
#cannabismedicinal #cbd -
See post #2 for a vaguely related comment from me on orthostatic intolerance
#POTS @pots #OI #OrthostaticIntolerance #chronicillness #chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid1/