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Kæmper hver dag for at LEVE med sygdom
#førtidspensionist #senfølger efter Borrelia og EpsteinBarr virus #mastcellesygdom #mcas #Pots #hsd #eds #lyme I❤️Pilates

[Liam's LC/ME Journey @liamsLCjourney]

Yesterday, I stepped down as CEO of my company. Not because I wanted to, but because in mid-January, I became bedbound with Stage 4 ME.

For the past three months, I've watched my team run the company I built while I just lay here, unable to live the high-impact life I was used to.

At first, I vowed to get better so I could return to even part-time work. But as I gradually and inconsistently improved over months, I became radicalized for a different cause:

Not a single person deserves to live like this. But yet we do, and and no one will save us but ourselves.

So today, I begin a new role: I will dedicate the next year of my life - 18 waking hours a day - entirely to this community.

I suppose it's time I introduce myself (I've also attached a photo of me, in bed, feeling much worse than I look):
- Out of college, I co-founded a magazine that took me around the world doing sports journalism and broadcasting.
- Over the past 7 years, I have assembled the greatest team to build and run a sports tech company from the ground up
- In the early days of the pandemic, I co-founded and led @getusppe, a team of hundreds, to deliver 17 million+ pieces of PPE to healthcare workers.
- I specialize in acting with urgency, seeing gaps, and connecting people to fill them. And most of all, in uniting and building community.

I have accomplished a ton in my 35 years on earth before I got sick, but Long COVID and ME are, by an order of magnitude, the biggest challenges I have faced.

But when there are so many gaps, there's simply no time to complain. We must roll our compression-wear up and get to work. So here is what I have planned:
- Guides and essays:
- The Severe PEM Crash Survival Guide
- What's the Deal With Brain Retraining?
- So You Have Long COVID, Now What?
- ...and so many more!
- Treatment Experience Surveys to fill the gap between random Reddit anecdotes and slow clinical trials (GLP-1 data released in two weeks)
- The first comprehensive AI analysis of all publicly posted recovery stories to look for trends and correlations
- Helping a fellow patient and test expert publish the first interactive and comprehensive testing guide for ME
- Helping a fellow patient increase the visibility of Stage 4/5 patients as the faces of ME
- Creating a network of the highest agency patients working on these conditions to mutually share information, support, and unblock each other
- Creating Long COVID and ME microgrants to fund people to work on small but impactful projects
- Incubating and raising funding for founders who want to start non-profits and companies (let five more Amaticas flourish!)
- Overall, pouring my heart out to support every single person who is interested in working for the betterment of this community (especially where others are far better than me, like science and advocacy!)

No one is going to do this work for us. Not doctors, researchers, or government. This must be patient-led.

Want to join the movement? Send me a DM, and let's figure out what we can do together. Time to get to work.

[Jeannie Di Bon @jdibon]

Sometimes I wonder how different would my life have been if I hadn’t had to wait 35 years for a diagnosis of hEDS, followed by MCAS, POTs.

For so many of us, the journey to diagnosis has been filled with dismissal, gaslighting, and trauma.

But I believe in a future where knowledge is growing, where voices are starting to be heard, and where patients don’t have to fight so hard to be believed. I’m proud to be an educator to help change this situation & improve knowledge amongst therapists and teachers of movement.

📕 If you’re a teacher, therapist or health professional, you can train with me online @ehlers.danlos and in person @polestarpilatesuk.

👉 Share your diagnosis journey below — how long did you wait?

[A @moonshadow75]

@kristianploug Nok nærmere fejlslagen inklusionsreform i folkeskolen og årelange ventetider i psykiatrien. SÅ længe var de altså heller ikke hjemme under corona🤷‍♀️🙄

[A @moonshadow75]

@JuulMona Det starter i folkeskolen. Inklusions"reformen" gavner lige præcis INGEN. De, der skal unkluderes, har brug for et helt andet tilbud. De andre får mindre ud af undervisningen, fordi der ikke er nok ressourcer til inklusionsopgaven. Overhovedet. Dernæst ventetiderne i psykiatri👎

[A @moonshadow75]

@VladVexler Thinking of you. Getting really seen by doctors is a rare and somehow healing experience. Im so glad it happened.

[A @moonshadow75]

Indeed. This was why the minute I got my pots and mcas stabilized and thereby diminished my PEM symptoms I began walking. At first just counting steps in my aprtmnt. Then going down the stairs. Then to the corner of my street. After 2 months I took my first walk never looked back

[Adam @ABrokenBattery]

#MEAwarenessMonth - Day 4

1989, Dr Simon Wessely proposes a new theory: ME patients aren't ill but are unfit and have a fear of activity. He recommends CBT to change beliefs and graded exercise to restore fitness — this model shaped decades of harmful treatment.

[Putrino Lab @PutrinoLab]

arisen. First, and most importantly: #LongCOVID (LC) and post-vaccine syndrome (PVS) both exist. Anyone claiming that all LC or even *most* LC is actually PVS is unserious and is making up nonsense that is not supported by the consensus science. I cannot stress this strongly 2/

[Whitney Dafoe @DafoeWhitney]

I started eating real food again in 2024!…I have now stopped the Peptamen food formula completely, and get all my calories from real food!...And I want to tell you because I want you to hear this story!...what will 2025 bring? #MECFS

New post on my blog:
https://t.co/rADtwkW5Bw

[Matt McGorry @MattMcGorry]

I'm SO excited to be partnering with the NYC Health Department (@nycHealthy )! 🤩

As we enter year 5 of the COV!D p@ndemic, it's important to understand how & why we must continue to protect ourselves and our communities!

Stay tuned for more from NYC Health & me! 🤗

Video Description: A white man is wearing a blue t-shirt and a gold chain and is speaking directly to the camera in a hotel room.

[A @moonshadow75]

Har det stramt med læger efterhånden. Flertallet jeg har mødt er unysgerrige, uvidende og affærdigende. Postviral sygdom er angst. Hormonforstyrrelser er angst. Det meste er angst jo🤷‍♀️ Heldigvis har jeg mødt 2-3stykker der var ordentlige læger, lyttende problemløsere.

[James Throt MBBS, MD, PhD, FRCPath @JamesThrot]

MUST WATCH:

This is what healthcare professionals really think about those of you suffering w/new health issues since SARS-CoV-2 arrived. It’s truly shocking.

I’m ashamed of my own profession.

This is intolerable.

Today, an NHS doctor on Sky News ⬇️

Guys, it’s just anxiety🧵

[A @moonshadow75]

@bitterhedensk Yessss Det er alt for fedt🧛‍♂️

[A @moonshadow75]

Does your country recognise the existence of LongCovid? What does your country say about recovery? Any timeline on it? Treatments? Im curious abot whats said publicly by doctors etc
I heard a doctor in Denmark say that LongCovid lasts from months to a few years, most get better.

[elle carnitine 🍉 @elle_carnitine]

The French health authorities have decided that, since there are so many people with Long COVID, it’s not realistic to get everyone specialist care, so it’s up to GPs to treat the disease

[A @moonshadow75]

How often is your teenager sick?

[Kathryn @kadamssl]

No wonder parents are confused.
Pediatrician on IG 👇

[A @moonshadow75]

@LarsNunne MgMidget i hvid. Og senere Alfa Romeo Giulietta (80erne)

[A @moonshadow75]

7 years ago I was in a wheelchair. Diagnosed with #ME #MyalgicEncephalomyelitis and #POTS

[AshleyStevens @The_Acumen]

Getting sick every year was not this common before the pandemic, and I will not be gaslit into not knowing my own body and medical history prior to 2020. Maybe y’all got sick multiple times a year, every year, but not me. This is not normal.

[A @moonshadow75]

@MelanieWeckert If it makes you feel worse, you might want to go way lower dose. Started at 0.0001mg (diluted in water, measured with syringe)
Am now at 2.1 mg. It took me years, but felt improvement from the start on that micro-dose. Started higher several times, wrongly concluded not for me.

[A @moonshadow75]

@agaleszek @Micha_von_B Cromolyn sodium compounded. Started very low. Low Dose Naltrexon also very slow and low. Elimination diet and antihistamines. Took years to stabilize. Patience and persistence (and lucky if it works)

[A @moonshadow75]

@IsabelRamirezRD 1 Cromolyn. 2 LDN. 3 HRT (49)
Lyme/hypermobility/EDS/postBirth-infection trigger