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@GlimmerInAbsnce
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MECFS 2010 - I don’t belong to the scars that they left on my soul
Joined July 2016
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If it is best for me to be ill,
give me the energy to be ill.
If it is best for me to heal,
give me the energy to heal.
If it is best for me to die,
give me the energy to die.
Thanks
@cstroeckw
you’ve always been a huge inspiration and hope for me - even when we are strangers
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Since I can no longer communicate, doctors talk to me as if I were an infant, in the same tone of voice. Sometimes they ask my girlfriend if I'm her child - I'm 6'2" and have a full beard. What is wrong with you?
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968
I wish I hated my life. I wish it sucked. I wish I could think that it was shit anyway. I loved it, I was fucking grateful and excited for what’s to come.
#MECFS
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UPDATE: reached out to a lot of experts for help - no one was answering except
@janetdafoe
. She offered to speak with my relatives immediately. We had the absolute honor to talk to
@janetdafoe
yesterday and we couldn’t be more grateful for her advice.
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328
Yesterday Lauren died of
#mecfs
through
#euthanasia
I didn't know her - what I've read of her and her friends over the last weeks has shown me what a lovely, funny young person died from this disease - it really cuts deep.
I admire her courage in how she was dealing with it.
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19
245
After 14 years, all I want is to die, and my body can't even do that. Pathetic.
50
13
226
Deteriorated over 11 yrs. Got desperate-went to a
#Lyme
Expert. She talked me into longterm Antibiotics. Lost 2.000 € and my whole life. Wish I could call her out publicly
With adequate research for
#MECFS
, this would never have happened.
#pwME
@karl_lauterbach
@starkwatzinger
18
17
207
"You are so strong", "You are the person with the most willpower I know", "I could never be as strong as you", "I admire how you deal with your situation" ... I hear that a lot - it's not true. I am a coward. I would have taken my own life if I was brave or strong enough.
#MECFS
17
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Sometimes we hide our vulnerability behind a mask because we fear that the truth will hurt more than the lie. But the greatest strength lies in being honest to the ones you love and yourself, even when it is difficult and unpleasant.
Sometimes we have to lie to protect ourselves
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153
It's time to walk the last steps alone.
Thanks to everyone for the support over the last year - I can't keep up with this platform anymore. 🖤
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151
I just feel sorry for myself for waiting all day to have a quick look at this platform at night to see if there has been a breakthrough in research.
It's always better to burn out than to fade away. I've done both - I wish I had ended it when I still could.
#MECFS
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When they all neglected and abused me I didn’t only lose them. they also took away every memory I have with them because it was only beautiful because I was healthy. I was only worth something because I could do things. Past, present, future - stolen.
#MECFS
8
19
142
🎉 HAPPY BIRTHDAY 🎉 Today’s
@AaronCa11
30th B-day! He’s the kindest person, caring for everyone in
#LongCovid
&
#MECFS
community.
Pls consider donating to his GFM campaign below and give him a follow.
Thank you for being such an amazing friend ❤️
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138
@JanetDafoe
We couldn’t be more grateful for her, Ron Davis and all the other dedicated ME/CFS researchers - you’re the hope for our community
@OpenMedF
@BhupeshPrusty
0
4
128
Is there any chance for Tobias, a very severe
#MECFS
patient to figure out whether he has Craniocervical Instability (CCI)? He can’t handle an MRI.
And if he has CCI, is there any chance to get better without undergoing surgery? In his current condition, he would not survive one
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4
85
Pretty dangerous terms in chronic illnesses are Herx or Healing Crisis. It's akin to playing Russian roulette. Sometimes, people urge you to persist, interpreting your body's response positively. Yet, it can signify a deteriorating condition, pushing you further downhill.
#MECFS
6
18
83
@JanetDafoe
thank you from the bottom of our hearts (as I am
#severeme
I couldn’t join personally but was updated afterwards) 🙏
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the ability to physically articulate your opinion without fearing the resulting backlash - because you're a healthy and independent human being - feels like the ultimate superpower once you've lost it
#MECFS
1
10
71
Why should I push myself to things that worsening my condition if you can not even push yourself to read the newest research on
#MECFS
- lazy MDs …
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11
66
Euthanasia is a really hard and long process to go through with yourself and your loved ones.
If you can't accept how she died, then that's your problem to deal with the reality of
#ME
and maybe you should for once fuck off and just keep your inappropriate opinion to yourself.
1
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59
KETOTIFEN: What is your experience with
#MECFS
#POTS
#MCAS
#longcovid
? Tobias responded well to H1 blockers (Bilastin) without any side effects. We have now started ketotifen and he feels worse. His symptoms are worse and he has less energy. Sleep has worsened significantly.
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How many possible life constellations actually lie between: turning your hobby into a profession living a happy, healthy life in a loving family, without money worries and getting
#mecfs
as a teen and slowly dying, in the worst possible way. So many pathways. Fckn lottery of life
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We are involuntarily part of history. Imagine, in a few decades, annoyed students having to learn about the biggest medical scandal and maybe interpreting one of your posts, completely bored. Word for word in a long essay.
#MECFS
#LongCovid
0
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@corona_realism
@nervensystemck
Natürlich ist er der renommierteste Experte für
#LC
und
#MECFS
- zumindest für alle, die verpasst haben, die Forschung der letzten Jahrzehnte zu lesen. Wenn Ignoranz einen Nobelpreis hätte, dann wäre er ein herausragender Gewinner in der Kategorie 'Wissenschaftlicher Stillstand'
0
1
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@TimoStrotmann
Lass sie am besten von einem Notar beglaubigen. Ich hatte das Thema jetzt erst vor Gericht - Meine war zum Glück beglaubigt.
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@AaronCa11
captured some lovely words and sent them by post. Thank you to everyone who participated; it means a lot to me! I can't write to everyone personally, but please see this message as a heartfelt thank you ❤️
#MECFS
#LongCovid
#pwME
0
3
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@NeleHelena
That sucks 💔💙 thank you! I can only have the same three people in the room and I had to get used to them for a very long time. I would be alone in the dark anyway - as I can only tolerate the presence of the three caregivers for a few minutes -
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The Abx I got in 2020 drove me to a state of massive exhaustion and deterioration, which was misdiagnosed by a… I’m not gonna say what race, what people, doctor, and what hospital… we know I can’t say that…
It was Dr. Berghoff and Dr. Frommhold in Rheinbach, Germany.
#MECFS
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@NeleHelena
but it would be nice to know that there is at least someone else in the house. I need help with pretty much everything and can't even reach for things on my own. I can only look at my phone for a few minutes a day with benzos. So unfortunately I can't chat much online 🫤💔
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@presentdayliz
@shawnmcgee
I'm a friend of Kendra's, I'm glad she's okay. That's basically what
@shawnmcgee
has been saying for days now you. Maybe you should apologise to him...this poor guy is going through hell, is this really about Kendra or are you just onlookers looking for something interesting?
3
2
22
@SabineHermisson
Thank you Sabine! He told the doctors in 2010 that he felt like his symptoms were caused by compression of the cervical spine (C1-2), but didn't know this diagnosis even existed. He also felt much worse at the sink when at the hairdressers‘ & his cervical spine was overstretched
1
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@Helen_biochem
@swastrosarah
@AaronCa11
Oh yeah, okay, I forgot, I haven't had anything like this for over a decade.... Lying on my back in utter agony 24/7 without moving - makes it much more understandable for me. Will tell my other dying friends that you're all busy with holidays, plans, kids and BBQs .... relatable
0
2
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@ME_LisaZett
@Karl_Lauterbach
@starkwatzinger
Oh no, I’m sorry! She also told me about so many success stories even though I kept expressing concerns. I think Lyme is still part of my problem but the approach to treating it has to be weighed up individually and not simply antibiotics-we just need research unfortunately ❤️🩹😔
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@tink_ina
When we got sick, there was still no information and no way to find out how to stop the deterioration of the disease. Patients who get sick now take it for granted, but that patients have sacrificed decades to provide the information on websites, no one acknowledges. So jealous
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@CovidCastaways
@Karl_Lauterbach
@starkwatzinger
I think my gut were also the biggest problem. I haven't managed to restore it until today. Mitochondrial toxicity must have played a role too. What did you do to get back to your base?
5
0
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@ClausErnst
Wow - der Umgang mit
#MECFS
Betroffenen in D. Durch die 🚦 ist schon fast ein Fall für
@amnesty_de
0
1
16
Be aware …
Deteriorated over 11 yrs. Got desperate-went to a
#Lyme
Expert. She talked me into longterm Antibiotics. Lost 2.000 € and my whole life. Wish I could call her out publicly
With adequate research for
#MECFS
, this would never have happened.
#pwME
@karl_lauterbach
@starkwatzinger
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@pausedME
@MIRAME_ARTS
Someone like Martin, who is empathetic and competent, gets back on his feet only to be torn down from within. All anyone does here is moan and complain. It's a disgrace to block real progress when someone is genuinely trying to make a difference for all of us. Thanks, Martin
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@AaronCa11
99% of mild patients are too busy whinging on this platform and watching Gossip Girl, while moderately/severely/very severely affected patients are sacrificing their lives for a advocacy effort that will only help mildly (maybe) moderately affected patients in the long run
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@curemetogether
No, he wasn't bedridden for 7 years, and it's not just about brain retraining - please read his story to get the facts right and know all the details of his recovery and medical history. It's much more complex than that - and it's still a very heterogeneous disease.
@leowmya
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Quiet space for severely affected people with
#MECFS
to bridge loneliness and sleeplessness a little. No unsolicited treatment suggestions, no endless monologues, fast talking or rants. Just chilling together.
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@presentdayliz
@shawnmcgee
He made it fairly clear from the start. Yeah, pretty pathetic. I'll keep checking with Kendra to see if she's really getting the money you collected. What boost are you even talking about … don’t get too wild
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@SurvivingCFS
We said we'd watch each other's backs! 🧡 I'm sorry I couldn't do more, I'm glad you're doing as well as you can - you deserve to get the full amount from that scammer!
@lizontheline
1
0
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@symptomodyssee
Yes, I had thought of that too, but unfortunately I can't organize it. It was already too much to post and reply to all the messages 🫠 But I can also give some bags to
@BerlinBuyers
for free and they can offer it on their store if they want to
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@ProperChels34
survive while your body punishes you for it. And still be a great friend… thanks man 💙
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0
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@AaronCa11
Thank you Aaron, you have helped me through the darkest times, it means a lot to me ❤️ but I will write this to you personally
1
0
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@annaloecher
Unfassbar und das bei vollem Bewusstsein … teilweise fast Comedy was die abliefern 😒
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0
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@leowmya
@Karl_Lauterbach
@starkwatzinger
no, fortunately not. I already knew about FQs. She still insisted on giving me gemifloxacin when I became bedridden - just imagine. I refused and forbade contact. Had 6 weeks Azithromycin/Tinidazol and afterwards 3 weeks Ceftriaxon/Minocyclin/Quensyl 👌
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@dizzydizzydazed
@AaronCa11
@SurvivingCFS
@Nnwwzz124
I don't have the energy to write much right now. The main thing is that Kendra is doing well! So it's all right, I don't take offence and see it from your point of view too
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0
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@pausedME
Thanks Martin! Please continue to educate people about how bad this disease is in its worst form. We need people like you. We need a voice. Please don't turn your back on us like others who have improved or recovered.
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0
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@cstroeckw
Tried it several times and always crashed badly. Deterioration was always permanent. Tried Inusine instead - didn’t Crash but didn’t improve either. I have very low NK-Cell activity, that’s why I took it.
0
0
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@Karl_Lauterbach
Im Alter von 30 Jahren ist das meine Realität und die vieler anderer auch
#MECFS
. Wir wollen leben - MENSCHENWÜRDIG
0
0
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@SabineHermisson
@Kaethi74
@islandmaster97
@AdrianKnispel
@DrChronically
@BrockAnnaDr
@JanetDafoe
@Karl_Lauterbach
Es scheint als wären seine Eltern vollkommen festgefahren - vor allem durch den HA. Ich kenn die Situation ja selbst. Es braucht eine/n fachkundige/n BetreuerIn - kann so jemand mittlerweile von
@Me_Hilfe_
zur Verfügung gestellt werden?
2
0
8
@sibylle_berlin
@GoeringEckardt
@linda_lobster
@UKEHamburg
Ich denke die einzige Aufgabe ist
#pwME
Als Wähler für die Grünen zu gewinnen. So viele Worte und es passiert absolut nichts - Vollkommen unglaubwürdig
2
0
9
@PutrinoLab
And now you're telling people to spend their money on breathing exercises that they can easily do and track themselves. I don't think breathing exercises are bad, on the contrary, but why rip off desperate people who don't even have access to state benefits anyway?
0
0
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@OpenMedF
Maybe you should have waited with the big announcement until tripple giving November is over. Time to move on to some other more promising foundations- for me at least.
1
0
9
@MehneMuh
@CzyIna
Den Job denn die meisten ÄrzteInnen machen ist absolut erbärmlich. Durch die aktuelle Berichterstattung kennt jede/r NICHT-MedizinerIn in meinem Umfeld die Erkrankung. Würden SteuerberaterInnen den Job machen den MedizinerInnen seit Jahren machen - wir wären alle im Gefängnis.
0
0
8
@pausedME
@FarazFallahi
@GoeringEckardt
Meine Freundin hat Betreuungsverfügung und Vorsorgevollmacht. In Betreuungsverfügung steht sogar dass unter keinen Umständen mein Vater als Betreuer eingesetzt sein soll
1
0
7
@ME_LisaZett
Super! Ich schicke euch gerne beliebig viele Samentüten zu. Ihr könnt ja selbst entscheiden, ob ihr sie für den 12. Mai verwendet oder/und für einen Kongress. Ich kann theoretisch auch noch weitere Samentüten drucken lassen, auch in unterschiedlichen Designs.
@Lisathefirst20
1
0
8
ADVICE ON IVIG for
#mecfs
? I have IgG1 and IgM deficiency, chronic infection, bad immune status - low dose IVIG preferred
But also
#sfn
#pots
#mcas
and auto antibodies- high dose IVIG preferred
So I would need both? 🤯 Any suggestions?
#severeme
#pwME
@tessfalor
@chydorina
2
0
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@SurvivingCFS
You have a lot more to say than most and I know that everyone is interested in your story. I'm sorry you had to experience that. Parts of this community are pathetic and we should exclude them as much as we can. There is absolutely no place for this behaviour- blocked them all.
1
0
7
@ThePOTSPostman
Yes, you haven't tried everything, have you? You're not open enough to try things (that are complete nonsense). Maybe you don't want to get well at all... I've heard it all. Ended up pushing me to make my condition massively worse.
1
1
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@Karl_Lauterbach
Welcher medizinische Fortschritt? Ich lebe mit
#MECFS
wie im Mittelalter.
@starkwatzinger
0
0
7
@presentdayliz
@shawnmcgee
Apparently you do … you tell me to 'fuck off,' yet here you are quoting me.
1
0
7
@starkwatzinger
@NichtGenesen
Vielen Dank! Wir brauchen massive Förderung. Wir
#mecfs
Betroffenen vegetieren in dunklen Räumen unter erbärmlichsten Bedingungen
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