@_ColeMcCormick It is one thing to believe this logically. It's entirely another to believe innately. Endless days of suffering makes it quite difficult to remember on a moment to moment basis
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Mac Harper
894 posts
Mac Harper
@ArtoriusAQ
Severe ME/CFS Patient, just trying to remain sane.
Eagar, AZ Katılım Şubat 2017
66 Takip Edilen20 Takipçiler
Why are you stuck in sadness when you know deep down everything you experience is happening for you and not against you?
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Mac Harper retweetledi
RIP Luigi🕯️
Christina Koch@CK65375
TW assisted suicide / #MEcfs Text from the Instagram Post: hannahst_98: Heute, am 11. Juli 2026 ist Luigi De Re von uns gegangen. Er bat mich folgende Nachricht zu übermitteln: „ME/CFS kills, so it did with me. I opted for this solution cause symptoms were unbearable and treatments did not work. My quality of life was far away from my normal. It deteriorated in a way I could not stand it anymore. My life was not like it used to be anymore. The message has to spread and more awareness and research has to be done to stop this disease from taking more lives or making them unbearable. Let’s spread the word and let people know why I made this choice. Remind people that ME/CFS kills! May there be a cure for this disorder in the future. May people with this condition heal in the near future. May those who had to die because of ME/CFS rest in peace. May my death be a voice for the unheard. Luigi, 24 years old“ Sein Tod soll nicht umsonst gewesen sein! Unsere Krankheit braucht mehr Forschung, Hilfe und Anerkennung, so war auch Luigis Wunsch! Ruhe in Frieden lieber Luigi instagram.com/p/DaqG3HIiFp1/…
Indonesia
Mac Harper retweetledi
I’m tired of never feeling like I have enough energy. Never able to be myself because of it. Feeling like my soul is spread out over a barren landscape without enough nourishment to survive; To support life.
I’m tired of how this forces constant restraint, constant planning and deliberation over every thought, movement and action. There is no spontaneity in this life. I want to simply act. I want thought to flow into action like water over a tropical paradise.
The way life is supposed to be felt.
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#mecfs #LongCovid #ChronicIllness #pwME #spoonie
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Mac Harper retweetledi
We Need Your Help
Imagine starving to death and being allergic to all food. And everyday trying to decide between starvation and a deathly allergic reaction. ME/CFS is like an allergy to energy expenditure. Imagine everyday trying to decide between doing something that makes you feel alive or deathly sickness. The more you do, the less alive you feel. And the less you do, the less alive you feel. And the more you do, the less you are physically capable of doing. That is ME/CFS. Everyday. For decades.
But if you don’t have ME/CFS, and are not allergic to life itself, you could decide right now to help us. And it won’t cost you anything but an extra work day, or one less toy or luxury, or some other small sacrifice in an otherwise life full of blessings and opportunity. Which I would not want to take away for a second. But a small sacrifice from you would go a long way towards helping people living in absolute hell.
Go here to donate to ME/CFS research:
whitneydafoe.com/donate
Learn more about ME/CFS here:
whitneydafoe.com/mecfs/whatisme…
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#mecfs #mecfsawarenessday #mecfsawarenessday2026 #chronicillness #pwME #spoonie
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Mac Harper retweetledi
in honor of James Strazza who died this week from very severe ME i want to share a blogpost by him and his mother Galen, which has accompanied me for the last years and helped me in more ways than i could say.
rest easy James 🤍
Gwyn@gw411954
@menschenklang @einfacheinemehr Ein ehrliches Gspräch zwischen James Strazza (Betroffener) & seiner Mutter über ME, das Ausmass des Leidens & darüber, wie er dem 'Lied der Sirenen' widersteht. Es macht das Ausmass der Schmerzen deutlich, zeigt die inneren Prozesse auf - wundervoll. galenwarden.com/post/severe-me…
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Mac Harper retweetledi
Imagining but never doing
Dreaming but never experiencing
Longing but never feeling
Seeing but never touching
Believing but never receiving
Envisioning but never achieving
Driven but never accomplishing
⠀⠀⠀⠀Loving but always being alone.
The experience of living with ME/CFS.
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💙 Whitney
— Add your own line to this poem in the comments below 👇 🙏 💙
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#mecfsawarenessday #mecfs #LongCovid #ChronicIllness #Spoonie #pwME #mecfsawarenessday2026
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During his search for the Name of Names, Galbatorix discovered ever-more-powerful names for the ancient language. Because of that, he was able to enchant weapons sufficient to pierce many common wards. This is also how the Ra'zac's dagger was able to wound Brom. Ditto Murtagh's arrows and Durza.
Lil Mdawgg@LMdawgg
@paolini just started re-reading Eragon again and was wondering how the Urgals arrows got through Faolin and Glenwing's wards during the ambush?
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Mac Harper retweetledi
💭
Don't do anything to trigger PEM
Don't do anything to trigger PEM
Don't do anything to trigger PEM
Don't do anything to trigger PEM
Don't do anything to trigger PEM
Don't do anything to trigger PEM
Don't do anything to trigger PEM
*Does something* 🤦
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It's not like the Patriots have ever been involved in a cheating scandal before right?
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@chydorina Insurance contacted me and will not continue to cover it if I don't do a bunch of hoop jumping. The overall benefit/side effects for me is not worth the extra aggravation of fighting the insurance company.
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@chydorina After about a month, mixed results. Pain was usually, but not always reduced by 1-2 points vs normal the morning after I took the tonmya. (Scale of 1-10). However, orthostatic issues increased about in equal measure. So a clear trade off. 1 of 2
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Any indications that the new Tonix fibromyalgia treatment (Tonmya - cyclobenzaprine hydrochloride) might also help w/pain in MECFS?
Anyone have experience with Tonmya and both a MECFS and Fibromyalgia dx?
Brain Inflammation Collaborative@BrainInflCollab
Fibromyalgia is a chronic disorder characterized by widespread: - musculoskeletal pain - sleep disturbances - cognitive issues - fatigue There are ~10 million adults in the United States with fibromyalgia. This is the first new fibromyalgia treatment approved in over 15 years...🧵
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Humana Medicare Advantage has been a complete disaster in Michigan for me. Would not reccomend, should have switched while I had a chance.
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Mac Harper retweetledi
ME/CFS shows the highest impact on family members’ and partners' quality of life among conditions so far studied using the FROM-16 questionnaire
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Mac Harper retweetledi
Living just one more day with #MECFS is the saddest, most horrifying thing I could imagine. But I’m going to do it. I’m going to wake up tomorrow and let another day slide past me without living it. And I’m going to get up the next day and do it again. Acceptance, letting go, courage, crying, cursing, righteous anger, pulling out what’s left of my hair, whatever it takes to get through one more day and closer to that day when we get real treatments and a cure. It breaks my heart every single day, but I can live with a broken heart. I need to feel freedom again.
#pwME #ChronicIllness
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Mac Harper retweetledi
@winwithmelanin @ThePOTSPostman That sucks. Mine are a couple years old and haven't had any problems, perhaps I just got super lucky. Course, I can only manage to do one load of laundry every few weeks so perhaps that's why they survived haha
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@ArtoriusAQ @ThePOTSPostman Mine fell to pieces, they did the job but didn't last.
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Calling all dog owners!
Does anyone know a product that will trap dog hair in the washing machine or dryer?
My dog sheds too much, it’s getting a bit crazy.
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@ThePOTSPostman @ArtoriusAQ Don't use on dryer setting
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