Matthaios

21yrs w/Chronic illness✨Nuanced views✨Healthily skeptical✨follow is🙅🏻‍♂️endorsement✨#MECFS #Fibro #CKD #Neurodivergent 🩵🎭

[Matthaios @Omrider]

1 yr ago I made a video for #InvisibleDisabilitiesWeek #MECFS

I thought I was in a dire situation then, If only I knew what lay ahead...

LINK👉🏽 https://t.co/ebjW6AvIQb via @YouTube

[Matthaios @Omrider]

@CureLongCovid @polybioRF @threadreaderapp unroll

[Ina • SPOTLIGHT VERY SEVERE M.E. @tink_ina]

#MEAwarenessDay 🆘

In 2011, I had just turned 18. My life was just about to start and I had such a bright future. Instead, it ended overnight when someone put a drug in my drink. I woke up in the hospital, and from that moment on, I was chronically sick. I was burdened by so many symptoms in my whole body, and I fought so hard to get through the last year of high school. I felt like I had the flu constantly and I was exhausted beyond words with 100 other symptoms.
After graduation, me and my life vanished so fast at the hands of this disease, and my doctors in Sweden told me I was just anxious or depressed. They barely ran any testing. They asked me to take a walk. My family and boyfriend didn’t believe me without a diagnosis or support from doctors. I was so young, just a teenager. I had no power and I wasn’t believed.

When I was 22 I found out that the disease I’m suffering from is called Myalgic Encephalomyelitis (me/cfs). I did not want to get that diagnosis. It was so scary reading about it on my laptop… it said that there was no cures or treatments available, that patients are on their own. I was angry and triggered, I didn’t want this.

Every doctor I went to was completely uneducated in #mecfs and either didn’t know about it - or - was repeating what psychiatrists in the UK started claiming back in the 1980s: that it was just a bullshit diagnosis, and not real. The psychiatrists’ goal at that time was to classify this life-threatening disease as psychological. They used media to make patients seem like they were clueless and couldn’t be trusted. And they succeeded. That misinformation spread worldwide, and it stuck. Doctors and society turned on patients, and the damage still shapes everything today: research, funding, public perception, policy, and how every patient is treated the second they walk into a GP’s office.

My muscles get weaker the more I move; making this disease a horror movie; a hole I get punished for trying to crawl out of. Science has now confirmed over and over again what was always known; #MyalgicEncephalomyelitis (me/cfs) is a deadly and severe neuro-immune disease, not psychological. It leaves many so sick and weak that they’re bed-bound. A living death.

Now, even more people are at risk of developing this disease.

#MECFS is an extremely severe, multi-systemic neuro-immune disease. It is dangerous, life-threatening, AND very likely curable with more research. We are 20+ million in Europe alone and 25% of us are bed-bound. We need research funding. Talk about us around the dinner table. Spread the word. Donate. Tap the hashtag and read our words, read what it’s like. Let our voices be heard, speak the name of our disease. Young adults, teens and kids are suffering the hardest, some being sent to psychiatric wards for “refusing to leave bed”. It’s a catastrophe. We are alone. And we need You to be seen and heard.💙

Thank you for reading my story today.

#chronicillness #worldmeday #longcovid #chronicillness #medicaltrauma #millionsmissing

Pictured: an old photo of me (to the left), with my best friend (to the right).

[RoxiiLee @RoxiiLee_]

In honor of May 12th M.E Awareness day !

This made me so ill to make , I ask that If you’re Healthy can you please watch the 3 minutes of this to learn about this disease and share 🙏🫶🏼
#me #MyalgicEncephalomyelitis #awarness #invisibleillness

[ThePOTSPostman @ThePOTSPostman]

Fatigue with chronic illness is nothing like ordinary tiredness, but healthy people often aren’t able to grasp that concept. It’s something that needs to be experienced in order to understand it.

However, many doctors have weighed in on what that fatigue often feels like. Here is exactly what the experts have to say.

1.Dr. Michael Goldstein:
“Fatigue is the most disabling symptom of many chronic illnesses, yet it is the least understood and often the most dismissed.”

2. Dr. Paul Cheney:
“The fatigue of chronic illness is not tiredness. It’s a profound lack of energy that affects every cell in the body and every thought in the mind.”

3. Dr. Nancy Klimas:
“If I had to choose between the cognitive loss and the fatigue in these patients, I would say the fatigue is more disabling , it’s like their batteries never charge.”

4. Dr. Lucinda Bateman:
“Chronic illness fatigue is not relieved by rest, sleep, or time off. It is relentless, unpredictable, and can strip away the ability to perform even basic tasks.”

5. Dr. Donnica Moore:
“Fatigue in chronic illness isn’t about being tired — it’s about being completely depleted. And that difference matters.”

6. Dr. Rajapaksa:
“You feel it in your bones and muscles. It’s not like you just didn’t get enough sleep last night.”

Fatigue isn’t something you can see, but it destroys us.

[Guus @guustweet]

“At this point, I might as well be a brain preserved in a jar: untethered from life, suspended in time, where thought is not just all I have, but the very thing that proves I’m still here.” 🧠🫙
#MEAwarenessMonth #WorldMEDay #MECFS #LongCovid

[Anil van der Zee © @AnilvanderZee]

A trailer of the documentary "Doctors as Patients" where five medical doctors open up about living with #IACC conditions like #pwME, #longCOVID & chronic #Lyme.

I invite you to watch and share it far and wide. Their voices have even more urgent health issue since the pandemic.

[Tobias @992tobias]

I spoke about #MECFS beyond close friends for the first time. The response was overwhelming — even major media reached out. If you haven’t seen it or feel like sharing it again, every repost helps. Thank you so much! #ChronicIllness #LongCOVID @gofundme

https://t.co/bq4bsgYkTf

[Adam @ABrokenBattery]

Clip from The Morning Show Australia
“I would wake up and count down the seconds until I could sleep again because being unconscious was the only relief.”
Lily Schubert shares her journey living with ME, a chronic illness that left her bed-bound for 6 yrs.

[Matthaios @Omrider]

I understand the fear that some may get the wrong idea about the severity & reality of MECFS from viewing a short more energetic seeming TikTok. Personally, I “present” on socials far better than my reality just on my voice strength alone.

I was mild for years, now moderate/severe, & I try to remember that we all present how ME affects us at that particular time..doing our best to advocate for all. Similarly to how I advocate for my stage 2 CKD, despite not being in renal failure yet…

I do my best to advocate for severe patients w/ ME, but can only really present my own experiences. I also factor in adrenaline that makes some appear better in a short video online than what their 24/7 reality looks like.

I think it does everyone a disservice when we get into “comparative suffering”, treating empathy as a finite resource.

Personally, I felt sharing while mild & still having the ability to speak was better than waiting until ME silenced me forever...being too fatigued to post anything or use my voice.

[Matthaios @Omrider]

Low dose SSRI helped me for about 8 months in 2021. many conditions are helped by off label use of SSRI & shouldn’t diminish the Dx of ME.

Until we have a biomarker for ME, we will have a patient population w/ various etiologies & underlying disease processes. In addition to all the genetic variables that affect the efficacy of each Tx attempted.

[Matthaios @Omrider]

@KatieKlocksin I was diagnosed there, but that was 2010 & they did nothing(AZ location). I believe they now have people who specialize in it at the MN location & probably do much more since I was there.

[Matthaios @Omrider]

I’m 1298C heterozygous, but hear mixed info on the potential impact on methylation..it is such a nuanced area of science w/ few experts to guide patients. I feel unequipped to navigate on my own… heard lots of anecdotes of folks benefitting from M.folate supplementation, but it seems so tricky to determine what dose/brand etc..beyond my broken brain’s capacity..

[Matthaios @Omrider]

I’d say go for it! I started TikTok few months ago(I’m 50), 20 yrs w/ MECFS, also went unhoused…TikTok has been the most welcoming & receptive social platform I’ve used..

I do feel awkward, I still can’t believe I’m doing it, but it is my only connection to any community. I’m also a “super yapper”, w/ no skills or energy to edit or do fancy TikToks, just long form rambles..It is my only way to advocate & spread awareness…writing is harder for me than speaking. I’ve had almost zero toxicity over there, especially compared to here. I wish you luck, the more voices on the margins the better! 🤗🩵 “omrider00” is what I use over there if ya wanna join other ME folks.

[Matthaios @Omrider]

@kirstler31 1st night deep sleep improved …I just dove into Reddit posts today, seems like most drugs, quite the variance in people’s experiences..so many variables. I’m on 25mg, but some people do better on the 50mg it seems. Screenshot below of one comment on Reddit..

[Matthaios @Omrider]

@TomKindlon Love that 👏🏼👏🏼

[Los Angeles Times @latimes]

Editorial: To understand homelessness, listen to homeless people. Here's what I learned (via @latimesopinion ) https://t.co/DMbQGqppmE

[Matthaios @Omrider]

@MGTmecfs Winning is just being able to do daily survival w/ this horrific disease…recovery is something I no longer expect after 2 decades, but certainly believe it is possible for younger folks out there.

[Always Keep Learning @AlwaysKeepL]

12 sentences emotionally intelligent people use under pressure

[Tiny Buddha @tinybuddha]

"Becoming less reactive is a huge part of growth and decreasing stress. If you let everything get you worked up, you're damaging your mind, body, and spirit."