Nick @_nekonick_

34 🇳🇱｜Before 20 yrs. of ME｜animals｜nature｜traveling｜history & historic buildings｜interior design & plants｜TV shows & movies｜cultures & languages｜food｜ The Netherlands Joined May 2013

Tweets

421
Followers

130
Following

240
Likes

3K

Nick @_nekonick_

2 years ago

Met stomheid geslagen na gesprek met de verzekeringsarts 🤯 Er werd gevraagd of er in mijn mobiel gekeken mag worden om zo te bepalen wat ik zoal doe op een dag 🤯 Gelukkig was de advocate erbij! Bizar.. #pwME #UWV

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POTS Person @PotsPerson

3 years ago

Ahhhh Christmas. The angst of managing Christmas when you're 33, live alone, and have been disabled for 18 months by a disease society and your family would rather deny. It's certainly going to be character building.

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Nick @_nekonick_

4 years ago

gofund.me/bcc104b6 #pwME #crowdfunding #mecfs

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Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke

4 years ago

Imagine having an illness which is so badly neglected by the medical profession that committing suicide feels like your best option. #MECFS #pwME #MyalgicEncephalomyelitis #MedTwitter #MedEd

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Nick @_nekonick_

4 years ago

Should I take Pfizer? Called GP who doesn't know me. Half medical records missing (asthma, 70% lung function etc.). Stopped taking annual flu shot (reaction ME etc.). After a heated discussion and unusual route, I can get a shot June 4. Advice? #pwME #ForgottenPatient

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Nick @_nekonick_

4 years ago

Tips/advice? 24th migraine attack in 3 weeks' time. Tried so much in 18 years.. Amitriptyline stopped working #pwME #migraine

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Ellie✨ @ellieology_

4 years ago

In all honesty, I don’t know how much longer I can do this. #MyalgicEncephalomyelitis is the cruelest way to exist; no one deserves this living hell. Takes everything. It feels like we’re screaming for help - please, help #endmecfs2021 #pwme #mecfs (too sick to do it Weds🤦🏻‍♀️)

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Anil van der Zee © @AnilvanderZee

4 years ago

"#MEcfs can be triggered by COVID-19 in adolescents and young adults. Further work is needed to determine the pathogenesis of ME/CFS after COVID-19 and optimal methods of treating these patients." #pwme #longCOVID #MEresearch frontiersin.org/articles/10.33…

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ME Centraal @MECentraal

5 years ago

Scientists reveal mechanism that causes irritable bowel syndrome (note: many ME-patients also suffer from IBS, often considered to be a MUS- or SOLK-condition). bit.ly/3p8QWZS "With these new insights, we provide further evidence that we are dealing with a real disease”

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Cort Johnson @CortJohnson

5 years ago

A COVID-19 Long Hauler Case Report Points To ME/CFS, Autoimmunity – and IVIG Treatment #MECFS #COVID10 #Longhauler #IVIG healthrising.org/blog/2020/10/3…

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Nick @_nekonick_

5 years ago

Severe crash after attending my best friend's wedding as her best man and visiting my boyfriend. I feel so extremely grateful to the people that still see #ME and didn't choose to leave. All I wanted was to get a small taste and experience of regular life. #pwme #MyalgicE

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Malte @BoeckmannMalte

5 years ago

I’m too weak to have another person in the room with me for longer then a few minutes.. What kind of a ridiculous symptom is that even? Get your s**t together, body!! #MECFS #MyalgicE

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Nick @_nekonick_

5 years ago

Rare and special day! Felt kind of okay today! Barber ✔ Tried on the outfit I bought for my best friend's wedding at city hall ✔! Hopefully I can fulfill the role of best man next year at her wedding ceremony ♡ Appreciate this day after recovering for almost 1 year #MyalgicE

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Steungroep ME @SteungroepME

5 years ago

KASSA as zaterdag item over ME‼ Het TV-programma Kassa besteed hier aandacht aan, met onder andere een reportage over een ME-patiënte en met Ynske Jansen van de Steungroep ME en Arbeidsongeschiktheid in de studio. 👉Zaterdag 19 september 19.15 uur NPO 1.

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Nick @_nekonick_

5 years ago

I hope my Twitter friends are hanging on in there 💙 I disappeared from social media for quite some time, but hoping to pick it up soon. Still recovering from a severe crash making me paralyzed. The police breached a window after friends and family were worried. #ME #MyalgicE

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Tedros Adhanom Ghebreyesus @DrTedros

5 years ago

Thanks. I will be in touch.

Janet Dafoe @JanetDafoe

5 years ago

Thanks. I will be in touch.

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Rens Raemakers @RensRaemakers

6 years ago

ME/CVS is een ernstige en vaak onbegrepen ziekte. De minister zet nu goede stappen, maar D66 heeft nog enkele vragen. Wij willen: 💙 Echte erkenning, binnen de hele overheid 💙 Snelle uitvoering van een onderzoeksagenda 💙 Zorg die werkt en geen schade toebrengt #ME #MECVS #zorg