Martin @pausedME Twitter profile

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Martin

@pausedME

1 year

5 1/2 years in bed. There is hope. For every single patient. Stay strong! #MECFS #SevereME #mecfsfighter

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Martin

@pausedME

10 months

Bin zurzeit im Krankenhaus. Hab mit Neurologen, Chirurgen und Gastroenterologen gesprochen. KEINER kannte ME/CFS. „Noch nie gehört“. Wie kann das sein? Bei der medialen Aufmerksamkeit auch in medizinischen Kreisen. Pures Desinteresse. Ich bin geschockt. #MECFS

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Martin

@pausedME

2 years

Announcement The new ME/CFS Research Foundation will initiate and fund biomedical research into ME/CFS and Long COVID, starting today! Biomedical research is one of the most important building blocks for solving #MECFS and #LongCovid . More information:

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Martin

@pausedME

2 years

#MECFS #chronicallyill 3 years in which my feet haven't touched the ground. Days of pacing. Be brave. 5 seconds on my feet. Now rest. The body has to rest. But my mind is calm. I can and will win this battle. Someday.

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Martin

@pausedME

3 years

I'm bedridden for almost four years now. While my #friends and former #colleagues post #party and #holiday pictures on social media I can only post this. That is my #world , that is my #reality , that is my “ #life ”. Somewhere between dead and alive. Thanks to #MECFS . I need help.

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Martin

@pausedME

2 years

Heute haben wir die Dreharbeiten zu einer Folge von #37Grad für das #ZDF beendet, einer erfolgreichen deutschen Dokureihe mit den höchsten Einschaltquoten in D. Diese Folge dreht sich ausschließlich um #MECFS und die Menschen, die daran leiden. Danke an das liebe Team!

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Martin

@pausedME

1 year

No words can describe the pain of loss I feel today. I am tired. I'm tired of people with power destroying the dreams of thousands that they don't even understand. I'm tired of lying in bed as a supplicant trying everything to humanize our situation. #MECFSAwarenessDay #mecfs

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Martin

@pausedME

2 years

What a day. With Eckart von Hirschhausen. Great man. Maybe the one who helps us to become visible? #MECFS #LongCovid #pwME #MyalgicEncephalomyelitis

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Martin

@pausedME

2 years

I am 33. I am very ill. I have lost everything. I have no therapy. I have to suffer daily. I have nowhere to run. I've been bedridden for almost 5 years I am disappointed. What do you all think ME/CFS patients have to do now? #MECFS #pwME

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Martin

@pausedME

3 years

We just wanted to reach out to the #pwME #LongCovid #chronicallyill and #Disabledpeople who are alone and desperate and tell you that you're perfect as you are. You are wonderful and loveable. Don't lose hope. There is always hope. We found each other when I was already severe.❤️

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Martin

@pausedME

2 years

I'm desperate to verbalise what severe #MECFS means. Maybe spoken words have more impact? #pwME #chronicillness #bedridden

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Martin

@pausedME

2 years

Continue to spreading awareness of #MECFS on German television. #pwME #severeME #chronicillness

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Martin

@pausedME

1 year

Liebe Community, ich brauche eure Hilfe! (Bitte teilt den Aufruf, wenn ihr mögt) Zuerst: Ich bin wirklich sehr berührt von den Worten vieler bezüglich meiner „Leistung“ und meiner Person. Mein nächstes Twitter-Projekt wäre es, meine Reichweite zu erhöhen durch mehr

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Martin

@pausedME

4 months

It can get better. But for many it does NOT. I thought for 2 1/2 years when I was artificially fed that my life is over. My thoughts are with my very severe #pwME fellows. Please, never give up! #MECFS

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Martin

@pausedME

3 years

Australian research team found RBC #clotting during a crash in #MECFS patients. Now it comes: blood looked normal at baseline (and healthy controls). It's an ongoing study but pic is shared with permission as this might be interesting @resiapretorius @doctorasadkhan

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Martin

@pausedME

2 years

My life has been stolen from me due to #MECFS . Despite going through hell, I still learned a bit of biochemistry, marketing, and medicine. Wow... But I can’t be what I am good at: a lawyer because of this f @cking disease. This is brutal and needs to be taken MUCH more seriously

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Martin

@pausedME

2 years

I'm so physically ill that I'm mostly alone. But thanks to the community of #pwME and helpers, I feel seen. I just wanted to thank all of you for bringing light to this horrible ride. #MECFS will be solved. If we support each other, the scientists, it will happen!

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Martin

@pausedME

2 years

I had a long interview for the largest German television station (ARD) on Thursday about #MECFS . I was only talking about the dramatic conditions; no nonsense with physio etc., but in bed with a stomach tube. I also discussed the suicide rate. Without publicity, no help!

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Martin

@pausedME

2 years

23 years old. Rest in piece. #MECFS

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Martin

@pausedME

3 years

Yesterday, I made it into the wheelchair after six months in bed bc I felt it would be possible to use the bathroom again. It was three minutes. Enough to set me back. Now I can't talk or eat again, everything, the whole improvement, is taken away from #ME .That's life as a #pwME

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Martin

@pausedME

2 years

2018: I want my life back 2019: I can’t do this anymore 2020: I want a non-disabled life 2021: I want just healthy life 2022: I want any life without #MECFS

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Martin

@pausedME

7 months

It’s a long way to the top if you wanna Rock n’ Roll. First attempt to get back on my feet.

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Martin

@pausedME

2 years

My drug just stopped working. Just like Abilify last year. Then it all collapses and you’re back in hell with very #severe #MECFS again. This trial and error has to stop. We immediately need the proper funding to find out the cause and get #treatments to stop the #suffering !

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Martin

@pausedME

3 years

I will not live long because I am too seriously ill with #MECFS ... so I dedicate the rest of my life to ME/CFS and related diseases. Today I laid the first stone for a #NGO to support research into these diseases. Highly qualified members are on board. Contacts with #celebs

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Martin

@pausedME

2 years

When I was very ill (bedridden) but could use my phone again in 2020, I made so many friends in the #MECFS community all over the world. I had more, closer contact than with my buddies. Now I don't. I have closer contact with my buddies again. Because they are dead.

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Martin

@pausedME

1 year

Am 04.04. spreche ich über mein Leben, meine Liebe und meine Arbeit als Aktivist. Es geht in dieser 37 Grad Sendung um #MECFS .

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Martin

@pausedME

3 years

There were times when my friends said “when you're healthy again we will...” Then after year's they said “if you get better we could...”. Now they don't say anything like this anymore. They live their lives and don't expect me to take part in it again. Hurts so much #MECFS #pwME

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Martin

@pausedME

3 years

Almost four years of complete care and in bed 24/7. Tears are my constant companion. Today is another day when I don't think I'll ever be happy again. #ME ( #MECFS ) stole my life. And there is only one thing that could comfort me: a treatment. But there is none. #chronicillness

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Martin

@pausedME

2 years

To the brave warriors living with severe ME/CFS: I stand with you. 2023 may be a challenge, but together we will rise to meet it. New organizations are emerging and research is being done to find solutions and bring hope. Hang on, because it will be worth it. #MECFS #Hope #future

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Martin

@pausedME

2 years

Posts über #MECFS nehmen zu. Politiker:innen wie @GoeringEckardt fangen an, sich für unser Leid zu interessieren. Ich habe aber nach wie vor das Gefühl, dass der Staat im Sinne der Forschungsförderung und des Gesundheitsschutzes seiner Aufgabe nicht hier gerecht wird.

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Martin

@pausedME

1 year

I often wish I could wake up and it was all just a bad dream. Then I would get up, take a shower, give my beauty a kiss and go to work. As a lawyer. Not anything else. And I would never have experienced all this humiliation. Just a bad dream. #MECFS #pwME #sad

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Martin

@pausedME

2 years

#MECFS can break you. It is so unbelievable hard. Your body becomes your enemy. Like a weapon to torture you. Only suffering. When I’m awake. In my dreams. No breaks. I am so damn tired of this disease.

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Martin

@pausedME

3 years

Germany reached 50.000 signatures and #MECFS will get an official hearing in the German Bundestag

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Martin

@pausedME

2 years

I feel like dying #MECFS #severeme

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Martin

@pausedME

1 year

Programmempfehlung: @ZDF Sendung: 37Grad Pauline, Barbara und ich werden jeweils portraitiert, um die unterschiedlichen Gesichter der Krankheit #MECFS zu zeigen. In der @ZDF Mediathek bereits verfügbar, ansonsten um 22:15 im linearen TV. Mit dem Zweiten liegt man besser

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Martin

@pausedME

2 years

#MECFS We have to solve P.E.M. NOW! No waisting of time on other symptoms. No P.E.M. = opportunities back! Please focus on that. Focus on what works for many like Lorazepam, BC007 and Aripriprazol. Why does it work? We need more money to study these chemicals!

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Martin

@pausedME

2 years

Please help me FLOOD #Twitter with news about #MECFS #LongCovid and #PostVax . Write how much you are suffering and that we need #help and tag a decision maker. „We suffer. We are abandoned. We have no therapy. We disappear. PLEASE HELP“ Hashtag: #CryForME @GoeringEckardt

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Martin

@pausedME

2 years

@ #pwME Which treatments/drugs help you with #energy and #PEM ? Please only share the name of the drug. #MECFS #LongCovid Please share this post to get many comments. Helpful for all of us I think.

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Martin

@pausedME

3 years

Had a great talk with @doctorasadkhan on the (theoretical) aetiology of #MECFS and #LongCovid . We both will do everything we can to improve the lives of those who are suffering from these devastating illnesses.

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Martin

@pausedME

3 years

#pwME I had a call with my doc. She told me I have severe #epithelial damages under the fluorescence microscope. Furthermore a severe form of #EBV reactivation. You know what I think what can cause this: #Enteroviruses . #MECFS

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Martin

@pausedME

3 years

#love and #friendship for one year. I can’t leave my bed. I have a feeding tube. I’m suffering every day. I have #severe #MECFS . But I have an infinite amount of #love My life is ambivalent. But it's valuable. Just like any other life. Another face of #Disability

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Martin

@pausedME

3 years

Dreaming of a #life I don’t have. I can’t leave my bed. Feeding tube. Feeling like a flu plus hangover plus near from dying. Brain feels like it explodes. That’s severe #MECFS We need hope. #BC007 is hope. Show compassion. Help us at

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Martin

@pausedME

3 years

Bedridden since February 2018. Tube fed. Can't speak, walk, eat, drink, watch TV or leave my bed. No treatments available, insurance doesn't cover anything. Poverty, desperation, ruined family. That's very severe #MECFS #meawarenesshour

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Martin

@pausedME

2 years

After five years in bed I got now #diagnosed with a new #comorbidity #OSTEOPOROSIS #MECFS destroys my being, my existence as a person, from the inside. That is a story to tell. Gym. Music. Law. Strong. Gifted. Brilliant. No, that's not narcissistic. That's what is lost.

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Martin

@pausedME

3 years

#pwME Our suffering due to #mecfs seem pointless. But it makes a lot of us better people. We have become more empathetic, grateful, more human, more mindful. As soon as we can live our potentials again, we will hopefully make the world a better place. Never give up your ambitions

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Martin

@pausedME

2 years

I will come back! It will take time, but I will. THANK YOU for all your lovely messages! I never give up. Always #fighting . #MyalgicEncephalomyelitis #MECFS

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Martin

@pausedME

2 years

You don't have to play at the top in life. But when you've been down with #MECFS for years and life is constantly kicking you, you're already wondering how things are going to continue. How to proceed? I lie and lie and lie... How long should I wait? How long can I wait? Tears

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Martin

@pausedME

1 year

The chairmen. We are the head of a new nonprofit marketing agency for #MECFS and #LongCovid NPO and researchers. With gifted artists and professionals, we want to compete with commercial #Marketing . And donate our services and products. Like to join? : DM! Volunteer! ! !

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Martin

@pausedME

2 years

It is frustrating that #MECFS and #LongCovid #research is barely progressing due to a lack of money. Yet there is promising basic research. But #therapies seem so far away. Patients and their families have often lost everything. We need help! Now!

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Martin

@pausedME

2 years

Just had a call with my dear friend @FarazFallahi ❤️ The future is not written yet. The pencil is in our hands again. We are weak. We are broken. We are disillusioned. But we are still there. We won't give up! #MECFS #pwME #severeme #BMG

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Martin

@pausedME

3 years

My friends can live and celebrate, go out, have fun. I see their pictures and stories and n social media. I lie in bed and look at the blue sky with tears in my eyes. Severe #mecfs is unbearable!

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Martin

@pausedME

2 years

ME/CFS patients suffer from a severe, physical disease. 60% are unable to work. Until now, there has been hardly any public research funding in Germany for this disease. Ten million euros are not enough! WE NEED PUBLIC FUNDING! Everywhere! 🌍🌎🌏 #MECFS #CFS #Funding

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Martin

@pausedME

2 years

Special day: My lady moves from #Hamburg to my little town. But we can’t live under the same roof. Because then she would have to pay for my health insurance etc and I would lose care allowance and governmental support. We would live below the poverty line. #MECFS ruins love.

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Martin

@pausedME

2 years

If someone has to offer #remotework for a bedridden patient with #MECFS , whose legal career has ended as a highly qualified lawyer in the field of media law, who is motivated and flexible in what he does and also would retrain, please get in touch with me! #jobsearch #RemoteJob

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Martin

@pausedME

1 year

On #InternationalWomens Day2023, we must acknowledge that women with chronic illnesses are still being psychologized instead of receiving proper medical care and support. It's time to stop downplaying their pain and suffering and give them the help they deserve. #WD2023

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Martin

@pausedME

1 year

#MECFS Neuigkeiten: Der International Women's Club (IWC) mit über 500 Mitgliedern strebt in seiner diesjährigen Spendenaktion an, die ME/CFS Forschung mit einem signifikanten Geldbetrag zu fördern. Prof. @C_Scheibenbogen skizzierte auch die aktuellen ME/CFS Forschungsprojekte.

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Martin

@pausedME

2 years

Viel Aufruhr in der #MECFS und #LongCovid Community. In der medialen Berichterstattung ging einiges unter. Das ist aber ein Problem mangelnder journalistischer Sorgfalt. Die Aktivisten hingegen haben eine Arbeit geleistet, die hohe Anerkennung verdient. 🧵

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Martin

@pausedME

2 months

Jeder fünfte Tod geht bei #MECFS auf einen Suizid zurück. Dabei fällt @neurostingl auf, dass Patienten nicht depressiv, sondern abwägend über einen Freitod nachdenken. Der Grund ist sehr viel höher bei Stigmatisierung, etwa durch Ärzte. Redebedarf!

Erhöhtes Suizidrisiko bei Long Covid und ME/CFS

Long Covid und das chronische Fatigue-Syndrom führen bei Betroffenen oft zu existenzieller Not. Um darauf aufmerksam zu machen, haben Patienten vom Krankenbett aus eine Digitalkonferenz organisiert....

www.nzz.ch

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Martin

@pausedME

2 years

Happy Christmas 🎄 It's the time when my heart goes out to the very #severeme patients. #MECFS ruins everything and Christmas is when many of us suffer mentally because there is a thick wall between our families and friends who celebrate Christmas and us. Don't give up! #pwME

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Martin

@pausedME

3 years

#pwME I'm on my way to the very severe end of #MyalgicEncephalomyelitis again bec I prepared some paperwork for a doctor's appointment to get some help. It's time for the world to understand what inhuman suffering this disease means. I would prefer to die over being #verysevere

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Martin

@pausedME

3 years

There is so much horror in this world; starving, killing, the pandemic and the climate. However, there is still #love . For me as a #MECFS patient, a #disabled person, I rely on love like air. If we lose it, the humanity, the world will break apart - not just for the weak.

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Martin

@pausedME

2 years

There are many projects now in the pipeline for the #MECFS community. I plan podcasts, short films, TV interviews, music, flyers and much more. Few things are already in the production process. Spoiler: Many top researchers plus high quality films never seen before. Excited

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Martin

@pausedME

2 years

I believe in what I do. Regardless of whether my work is appreciated or I receive insults. #MECFS and #LongCovid will be cured in the end. Full stop.

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Martin

@pausedME

3 years

#pwME : No work, no sport, no music, no food, no friends, no television, no books, no therapy, no money, no Christmas, no birthday, no prospect of recovery: No desire to vegetate with #MyalgicEncephalomyelitis . Please don't look away. Help us to live again! #MECFS

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Martin

@pausedME

2 years

Millions of lonely #MECFS souls suffering in the darkness. But what if #pwME united #worldwide ?! Post the same stories about our #suffering ? Milder patients raise their voices. Millions of voices. Sometimes it takes the courage of a few to change the world for millions.

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Martin

@pausedME

3 years

I'm bedridden for 3 1/2 years. Tube fed. My life is lost. If I got the advice to pace myself and not to overdo instead of GET and what could possibly happen to me and my family if I did - I would have never taken the risk. #NICEguidelines #publishtheguidelines #StopTheHarm

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Martin

@pausedME

1 year

I've heard that many people don't know what I do and can't place me. I am the one who works hard in the background to ensure that enough money flows into important #research . I'll only tell you this much: Now is the right time to be optimistic! #MECFS #LongCovid #PostCovid

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Martin

@pausedME

3 years

I'm very sad to read in the newspaper that one doctor from our #MECFS bubble has written in a a basic textbook for medical students that illnesses like #MyalgicEncephalomyelitis are “mood disorders” and one should not pathologize them, would be imaginary. Sick now, he is ashamed.

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Martin

@pausedME

1 year

Crash. Many seem to think, that I can work like a machine. That's not the case. I have to be very careful. Today I did too much. Now I'm suffering the gruesome and inhumane torture of #PEM . I'm sorry. I would love to do much more. But I'm one of you. Thru and thru! #Pace #MECFS

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Martin

@pausedME

3 months

Moderating @SabineHermisson at the @U2Fight_World conference. Such a deeply touching presentation. Much support for you, Sabine! #MECFS

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Martin

@pausedME

2 years

Folks, I can't hear it anymore: “If you don't work on the fight or flight response/diet/yoga, it's your fault that you don't recover”. Besides the fact that there is no scientific proof for these religions, do you think I haven't done anything in the past years? #mecfs #pwME

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Martin

@pausedME

2 years

@FarazFallahi Sehr schlechter Zustand. Lunge macht Quatsch. Brauche 24/7 O2 aktuell und selbst damit kommen wir auf gerade mal 91%. Keine Energie mehr … Fünf Millionen brutale Symptome wie starkes Grippegefühl und Dysautonomie. Liebe Grüße und danke für eure lieben Kommentare 🖖🏼

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Martin

@pausedME

2 years

So many great people are working in the background to initiate and support research and care for #LongCovid and #MECFS patients. So much energy invested in all of us; in our future lives. I feel nothing but #gratitude ! And #hope !

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Martin

@pausedME

3 years

I would recommend that everyone with #MECFS and #LongCovid tries Low Dose Abilify (0.25-2mg/day). Left pic: July 2020, very severe ME, fully bedridden, no communication etc. Right pic: October 2020: Working full time (10hrs/day) without #PEM . Unfortunately it stopped working.

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Martin

@pausedME

2 years

Had a great talk with @DrAnnaNZ and Dr Payne on platelets, autoantibodies, clots and the cause of #PEM related diseases. I hopefully will connect more researchers from all over the world in the upcoming podcast for my new big project. Let’s talk about #MECFS and #LongCovid !

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Martin

@pausedME

1 year

Das ist historisch. Danke @FarazFallahi , mein Freund, mein Vorbild in vielen Dingen. Danke @GoeringEckardt , dass du tust, was du tust. Du kannst dir kaum vorstellen, welchen Symbolcharakter das hat. Und welche Möglichkeiten sich allmählich ergeben. Geschichte schreiben: Wir!

Der Horizontale

@derhorizontale

1 year

Als Aktivist für #ChronischeKrankheiten , der 100% bettlägerig ist, arbeite ich in der Regel immer remote. Aber heute gab es eine tolle Ausnahme, denn @GoeringEckardt war bei mir zu Besuch. Ich hab mich sehr gefreut sie endlich mal persönlich kennen lernen zu dürfen. Wir haben uns

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Martin

@pausedME

4 months

Worte können nicht beschreiben, wie sehr ich es spüre: Die Luft, Sonne, der Wind. Alles, was schwer Betroffene mit #MECFS nicht erleben können. Sie müssen liegen. Im Dunkeln. Immer. Auch ich werde es morgen spüren. #PEMistnichtverhandelbar .

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Martin

@pausedME

2 years

Es ist eine #Zeitenwende für #MECFS in Deutschland: Die #CDUCSU - Fraktion hat eine #Bundestagsdebatte angestoßen, @NichtGenesen haben vor dem #Bundestag mit der #Feldbettenaktion auf uns aufmerksam gemacht und die #Tagesschau berichtete. Lasst uns nun gemeinsam gesund werden!

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Martin

@pausedME

2 years

German speaking #MECFS #bloggers / #doctors / #influencers / #journalists / #vloggers and everyone on a professional level reporting about this illness: Please contact me. There is a big project coming up where we need your help please. 🍀 Change the lives for millions.

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Martin

@pausedME

2 years

#sundayvibes are something for people who can work and live their lives. For severe #MECFS patients it doesn't matter which day is. Because every day is a #nightmare . When will freedom, health, dreams and reuniting with family and friends - the door to life be unlocked?

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Martin

@pausedME

3 months

I've now been diagnosed with a deadly #myopathy on top of #MECFS . What comes next? How can one deal with it?

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Martin

@pausedME

2 years

I'm happy that I discovered if by accident and now it seems that hypoglycemia may play a role in at least a subset of #MECFS

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Martin

@pausedME

2 years

To answer many questions that have reached me: Of course I have a hard #crash and feel very very bad. I stood for 5 seconds because I just had to. Now I have to bear the consequences. That’s #MECFS . I would do it again. Never give up. Fight!

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Martin

@pausedME

3 years

I WANT MY LIFE BACK! #MECFS

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Martin

@pausedME

2 years

Too much suffering is carried by #MECFS patients every day. Too little money is available to solve this problem. Let's finally get this out of the way. Together, as a united #community . Investing in #research means investing in the #future !

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Martin

@pausedME

3 years

We will face many challenges in #2022 as #mecfs patients and #chronicillnesswarrior and #disabled people. May this year give us more answers than questions. #Hope

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Martin

@pausedME

3 years

#pwME I'm suffering from severe #MyalgicEncephalomyelitis . While others recover after a crash, I never. I'm was mild from 2013-2017. I December 2016 I took #Ciprofloxacin : all my #ME symptoms worsened. I was #floxed . It took half a year until I became moderate. Thread /1

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Martin

@pausedME

3 years

I had a very interesting, insightful but also exhausting day. I had an hour-long conversation with Dr William Weir on the aetiology of #MECFS . We both discussed our views on the pathomechanism, I enjoyed that a lot. Furthermore I met Dr Jaeger and my friend @doctorasadkhan 1/2

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Martin

@pausedME

2 years

ME until 2017 A story that is worth telling. Of a life that ended but without dying. In silence. Abandoned. In pain. When #MECFS strikes. You'll better be loved and a family guy. Because otherwise, you're alone. No one wants you, and no one cares. Brutal. But real.

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Martin

@pausedME

3 years

As long as I can I'll fight for us I'll do. My last #breath will be dedicated to you and my dear fiancé. Stay strong. We are very (!) well connected. I will keep you up to date.

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Martin

@pausedME

11 months

Wenn du einen heftigen Crash hast: Du kannst so viel Unterstützung haben, wie das Familienglück es hergibt und wenn man es hat, macht es vieles sehr viel leichter und erträglicher. Aber am Ende bist du mit dem Teufel alleine. Und dem ist gleich, wer dich alles liebt. #MECFS #PEM

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Martin

@pausedME

3 years

When we talk about #MyalgicEncephalomyelitis we must also talk about the very severely affected #pwME . In this state, life can no longer be described as such and it becomes clear why the term " #ChronicFatigueSyndrome " is stigmatizing, misleading and completely unacceptable.

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Martin

@pausedME

1 year

Our fox 💛 psychotherapeutic cuddling. Does anyone live with animals as soul savers? #MECFS #pwME #chronicillness

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Martin

@pausedME

9 months

Danke an Eva Schläfer. Diese Darstellung von #MECFS ist schmerzhaft realistisch und ich kann nur empfehlen, auch die Erklärungsansätze bezüglich Gaslighting Ernst zu nehmen - denn das passiert jeden Tag. Wir brauchen Forschung!

Vom Leben ausgeschlossen

ME/CFS-Patienten sind arm dran. Die Krankheit: kaum erforscht. Medikamente: nicht zugelassen. Die Ärzte: oft ahnungslos. Doch langsam verändert sich die Lage.

zeitung.faz.net

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Martin

@pausedME

2 years

I just thought I could produce music again … my passion, the thing I loved the most ❤️ A few hours later... Well, #mecfs turned this fun upside down: Another crash, more days ahead of me where I have to fight even more. But the will to take my life back hasn't died yet! #pwME

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Martin

@pausedME

3 years

Burned out from being my own doctor looking for solutions to improve my health. There is just no medical care for #MECFS -patients. #pwme

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Martin

@pausedME

3 years

🆘 We #pwME have to fight every day. Especially when you are severely ill. I have tried so many things over the years. Now I'm in a crash again just from seeing close friends, talking. No quality of life left. 100% bedridden. Thoughts about giving up. That's very severe #MECFS 🆘

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Martin

@pausedME

2 years

I had a wonderful talk with two excellent #MECFS researchers: @microbeminded2 , aka Amy Proal ( @polybioRF ) and @fereshtehjahan1 , aka Fereshteh Jahanbani ( @Stanford ). Thank you both very much for your precious time. It was a pleasure. The podcast will be available tomorrow!

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Martin

@pausedME

9 months

Wenn Wissen macht ist, was ist dann erst Glauben? Ich frage, weil wir #MECFS und #LongCovid -Patienten noch so viele wissenschaftliche Erkenntnisse vorlegen können; es wird immer aus derselben Ecke „keine #Biomarker “ geschrien, deren ganze „Wissenschaft“ keine Biomarker ¿braucht?

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Martin

@pausedME

3 months

Dankbar trotz #MECFS . Wir haben großes Vertrauen in unsere Forscher:innen. Es wird für uns alle eine bessere Welt geben. Hoffnung niemals aufgeben!

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