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#meawareness

0 posts0 participants0 posts today
Public
Anna

This article is about me:
t.co/f1vB5pXoK6

This isn’t even the half of it. They’re planning a 3 part series, energy allowing & also playing it by ear.

People helping is most important. More than money. I need an #advocate & safe place to live most. Please consider.🙏

There’s links in the article but a summary:

Crowdfund: buymeacoffee.com/halcionandon

Also:
People with Australian bank accounts can use beem.com.au to pay @halcionandon. Fee free & anonymous

Please #boost & thanks for reading. Help not expected but appreciated💜

#MutualAid #DomesticAbuse #Auspol #MECFS #MEAwareness

@disabilityjustice @mutualaid
@neisvoid
@mecfs
@chronicillness
@socialwork
@longcovid

Canary · Australia's state and services are trapping a woman living with severe ME/CFS in domestic abuseWoman living with severe ME/CFS in Australia trapped in a cycle of violence from domestic abusers to the punitive state & medical services.
Continued thread
Public
Jackie

So this is what I have 'planned' today:

📖 Read my true crime magazine
🐕 Take the dog for a stroll in the sunshine
🧘‍♀️ Guided relaxation
🎨 Do some foil scratch art
📚 Read my non-fiction book
📺 Watch a documentary

Tomorrow will be more of the same, plus I'll be visiting my dad because I haven't seen him since Friday, and hopefully meeting up with my daughter in her lunchbreak to walk our dogs together 💙

#MEcfs #MEawareness #EnergyLimitingConditions #chronicillness
#invisibleillness

Public
Tom Kindlon

This is one of 2 trailers for the #Notjustfatigue 15-minute documentary on ME/CFS

Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue notjustfatigue.org which hosts the full 15-minute video

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

Public *
Anna

This article is about me:
t.co/f1vB5pXoK6

This isn’t even the half of it. They’re planning a 3 part series, energy allowing & also playing it by ear.

People helping is most important. More than money. I need an #advocate & safe place to live most. Please consider.🙏

There’s links in the article but a summary:

Crowdfund: buymeacoffee.com/halcionandon

Also:
People with Australian bank accounts can use beem.com.au to pay @halcionandon. Fee free & anonymous

Please #boost & thanks for reading. Help not expected but appreciated💜

#MutualAid #DomesticAbuse #Auspol #MECFS #MEAwareness

@disabilityjustice @mutualaid
@neisvoid
@mecfs
@chronicillness
@socialwork
@longcovid

Canary · Australia's state and services are trapping a woman living with severe ME/CFS in domestic abuseWoman living with severe ME/CFS in Australia trapped in a cycle of violence from domestic abusers to the punitive state & medical services.
Continued thread
Public
Tom Kindlon

2/

“Living with chronic fatigue syndrome (CFS) is like being erased. It rubs out what my brain and body can do, turning me into a reduced version of myself.”

“Having CFS is like being a dormant seed, waiting for just enough energy to come alive.”

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME #EndMECFS #SystemicExertionIntoleranceDisease
#MEawareness #livingwithME #CanYouSeeMENow

Continued thread
Public
Mi Go (teno)

"Anyone can help by learning about ME/CFS, for example here: me-pedia.org, or over on Sammy's Instagram: instagram.com/m.e_and_more, by supporting research and advocacy organizations like instagram.com/openmedf and instagram.com/meactnet, and engaging with our content to help get as many survey participants as possible!

#ChronicFatigueSyndrome #MyalgicEncephalomyelitisAwareness #MECFSAwareness #CFSAwareness #MEAwareness #LongCovid #LongCovidAwareness

5/5

me-pedia.orgMEpedia
Public
K

ME/CFS explained for carers.
«ME/CFS is a complex and disabling disease that affects many systems of the body. These include, but are not limited to, the brain, muscles, digestive, immune and cardiac systems.» «It is not something that they did wrong or a psychological illness.»
emerge.org.au/me-cfs-explained

#MEAwareness #MillionsMissing #SEID #SpoonieLife

From: @tomkindlon
disabled.social/@tomkindlon/11

Public *
AvonLovesBlake

ME/CFS is a severe neurological disease. Most cases of ME/CFS are triggered by infection, often a virus. Before the pandemic, there were millions of people in the US living with ME/CFS.

When the pandemic began, disability advocates warned government officials that millions more would develop ME/CFS and other infection-associated chronic illnesses due to COVID.

Now, half of the Long COVID community meets the diagnostic criteria for ME/CFS. This more than quadrupled the number of people living with ME/CFS in the US.

The main symptom people with ME/CFS and Long COVID experience is post-exertional malaise (PEM). This means even small acts of physical or cognitive effort can make their symptoms worse.

25% of people with ME are housebound or bedbound, and only ~13% are able to work full-time. People with severe ME are often forced to exist in their beds in isolation for years.

People with ME/CFS and Long COVID demand:

A warp speed response
Patients to lead the charge
Societal and economic support
Our lives

#Fatigue
#ChronicFatigue
#CFS
#ME
#MEAwareness
#MillionsMissing
#LongCovid
#MECFS
#PwME

Alt text of the infograph: ME/CFS is a severe neurological disease. Most cases of ME/CFS are triggered by infection, often a virus. Before the pandemic, there were millions of people in the US living with ME/CFS. When the pandemic began, disability advocates warned government officials that millions more would develop ME/CFS and other infection-associated chronic illnesses due to COVID. Now, half of the Long COVID community meets the diagnostic criteria for ME/CFS. This more than quadrupled the number of people living with ME/CFS in the US. The main symptom people with ME/CFS and Long COVID experience is post-exertional malaise (PEM). This means even small acts of physical or cognitive effort can make their symptoms worse. 25% of people with ME are housebound or bedbound, and only ~13% are able to work full-time. People with severe ME are often forced to exist in their beds in isolation for years. People with ME/CFS and Long COVID demand: A warp speed response Patients to lead the charge Societal and economic support Our lives
Public
ahimsa

"Even a gentle exercise program could cause lasting harm to patients with ME/CFS or long Covid"

"If exercise is medicine, you should treat it like medicine. You should understand what the contraindications are, who might have adverse effects of the medicine, and how to dose the medicine effectively for each person.” – David Putrino

mecfs-med-ed.org/2023/05/07/ev

#MEcfs #LongCovid #Exercise #MEAwareness

@mecfs

ME/CFS Medical Education CampaignEven a gentle exercise program could cause lasting harm to patients with ME/CFS or long CovidBy Katie Johnstone
Public *
ahimsa

Blog post from ME patient Anil van der Zee:

"M.E. Matters"

"My life is just one of many millions worldwide that are suffering. They’re suffering in silence.

You often can’t see it on the outside, especially not on those who have a milder form of the disease.

Those like me who are severe are hidden away from society. At home, often in darkened rooms. With earmuffs, earplugs, and shades."

anilvanderzee.com/m-e-matters/

#MEcfs #PwME #MEAwareness #MillionsMissing

@mecfs

I’m saddened by all those people who are missing from life, especially for the children and people who became ill as a child and are now in the wintertimes of their lives. Not just because of the disease. Disease is an unfortunate aspect of life, but the fact that it has taken this long to take this disease (more) seriously. To take the patient community seriously. Although some progress has been made in recent years, to this day the patient community continues to be subjected to disbelief and dismissal, which impedes the much-needed progress in science and healthcare that should have been made decades ago.
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