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Dutch | life derailed due to #IBD & #MECFS | sofa bound | on Twitter to raise awareness for post infectious diseases | one of the #MillionsMissing
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Pinned Tweet
As a psychologist, I feel ashamed.
This article was placed in a professional journal about cognitive behavioural therapy (CBT).
The truth is, if I had read this before I got sick myself with
#MECFS
, I would have believed it. This is what we are taught.
#LongCovid
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Lauren passed away at 1.55 pm.
“May tender memories soften your grief. May fond recollection bring you relief. And may you find comfort and peace in the thought of the joy that knowing your loved one brought” - Helen Steiner Rice
💔
#DagLieveLauren
#ReMEmberLauren
#MECFS
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1K
I want to thank everyone for the overwhelming attention following Lauren's passing yesterday. She is already deeply missed. However, she herself was saddened by the fact that the attention became so massive only because she announced that she was going to die.
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For a long time, tuberculosis was seen as a disease specific for “sensitive, artistic people”. This symbolic approach of the disease immediately disappeared when the Mycobacterium tuberculosis was discovered by Robert Koch in 1882. 👇🏼
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He’s flabbergasted about how this neglect has been going on for decades and he wants to help the
#MECFS
community. We don’t know in what way he’s going to do this yet, but at least there’s one more doctor that believes us in this fight 💙
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A 🧵 about
#MECFS
and emotion regulation.
Before I got sick I worked as a child psychologist. During my studies (I studied neuropsychology and medical psychology) and my work I learned a lot about how to regulate emotions and what different coping mechanisms people use 👇🏼
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🧵 about how I was hiding my disease for years.
Loneliness in
#MECFS
is of a different kind. It’s not about having no family or friends wanting to come visit. It’s more like you’re living on a totally different planet then your fellow human beings, unable to connect 👇🏼
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What doctors, psychologists and psychiatrists don’t understand is that people with
#MECFS
and
#LongCovid
have normal emotional responses to a very abnormal situation. Not the other way around.
We should NOT call these responses a disorder of any kind.
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Loneliness in ME/CFS is a different kind. Family, friends, people, are often willing to help and support. But my illness doesn’t allow me to see people. Doesn’t allow me to talk to them. I don’t have the energy.
Is there a word for that?
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Having surgery while having
#MECFS
as well is the weirdest thing. This was my 7th surgery for an abcess/fistula. The nurse asked me “do you have any other conditions besides abcesses and fistulas?” Well… I didn’t know what to say so I just said “something like post covid or” 👇🏼
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and talking to you guys is my coping mechanism for today.
Thank you for listening 💙
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Why is it, that when you’re sick and you’re not getting better, people automatically assume you must be doing something wrong.
Nobody says “I see you’re trying so hard”.
While we’re trying so hard.
#MECFS
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I showed him all the literature about
#MECFS
and
#LongCovid
, he watched Unrest and another German documentary about
#MECFS
. He talked to other doctors who consider
#MECFS
as a serious illness. And now, after all these months, he finally believes me 👇🏼
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Another 🧶 about my dad being a GP and me having
#MECFS
.
These last weeks I’ve been struggling with my anger a lot. Especially with my anger towards doctors. My dad being a GP and me having a disease that is not understood by the current health care system is 👇🏼
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Behind this before-and-after photo lies the unyielding reality of
#severeME
- a debilitating condition that can silently steal your health and vitality. The contrast in appearance reflects my hidden battles.
#severeMEday
#MECFS
#pwME
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She believed that the attention should be directed towards the living. And towards the suffering that the living people with
#MECFS
endure. Unfortunately, that's not reason enough for the media to pay attention to us. And that needs to change.
#DagLieveLauren
#reMEmberLauren
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Having a post-infectious disease is like living in a parallel universe. Once you’re in it, you’re in it. And you see it clearly. But healthy people cannot see it. And how do we connect these two worlds? It seems like an impossible task.
#MECFS
#Longcovid
#Lyme
#QVS
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It’s such a mindfuck and almost impossible not to get mental health problems while already having
#MECFS
.
Does anybody understand how difficult this is?
We should get an award for still being alive. It makes me so angry…👇🏼
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A family member about PEM: “so you are well and get sick and after a few days you’re well again”?
No. We are sick and PEM makes us sicker. We are never well.
#MECFS
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I wonder how people with severe
#MECFS
and
#LongCovid
keep going. Physically I’m ready to die. Mentally I keep thinking “maybe tomorrow will be better”. Only to conclude everyday again that it wasn’t better and my quality of life will never be ok.
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🧵 about how people with good intentions can still hurt you.
This week I got two messages. One was from my aunt. I’ve told her many times that I’m sick and not depressed. That I don’t have the energy to attend to birthday parties. She still thinks she needs to ‘cheer me up’ 👇🏼
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A 🧵 about having
#MECFS
and anger.
I don’t know if there are any fellow sufferers who recognize the following. When you experience loss, in whatever way, it comes with grief. But I have a hard time feeling grief because I’m so, so angry 👇🏼
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talking to my friends, exercising, dancing and walking. All of these things are no longer possible. And when you’re dealing with
#MECFS
, it’s not only the physical part that is taken away from you. On top of that you get to deal with tons of grief because of everything 👇🏼
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were about me having “psychosomatic symptoms”. I think you guys can understand the rage I felt at that time. Now, six months have passed. I’m finally not crashing anymore and my body came to rest. I had a lot of conversations with my dad 👇🏼
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you have lost. You get to deal with anger, because you have a disease that has been and still is neglected by the current health care system. A lot of people have to deal with medical PTSD. You lose friends and family members because people don’t understand what we are going 👇🏼
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The empty feeling when you’re just laying around and your only purpose is to not make your life worse than it already is.
#MECFS
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We have a fb group in Belgium and The Netherlands for
#MECFS
and euthanasia. Only people who are in the process of euthanasia or think about it are allowed into this group (we strictly select people). It already has 54 members. This topic should get more attention.
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People working in health care (doctors, psychologists, psychiatrists) have no idea what kind of power they have writing about you in your medical file. It can be so traumatic to read things about yourself that simply aren’t true.
#MECFS
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Do people realize how traumatic it is that when you have a post-infectious disease, you have to find out yourself how severe your illness is and that you’ll probably never recover? It’s like worse than a death sentence and no doctor delivers the news.
#MECFS
#LongCovid
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Tuberculosis was and is a bacterial infection and had nothing to do with a patients personality. And even more important; it could be cured. 👇🏼
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People often say “it must be so difficult to let go of all of your future plans” because of being chronically ill. And it is difficult.
But what they don’t understand is that it’s even more difficult to survive this specific day. Or even the next hour.
#MECFS
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I feel guilt and shame for not recovering. But I shouldn’t. It’s not my fault and it’s not your fault either. It’s the disease’s fault. And it’s the doctors fault, for not listening to us and blaming us for being sick.
#medicalgaslighting
#MECFS
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In 2009, I traveled across the world for 8 months. My world was so big, as big as this tree. In 2019 I got sick with
#MECFS
and other medical issues. Now, my world is the smallest it has ever been. I cannot see the world anymore, and the world cannot see me.
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One of the things I hate the most about the cognitive problems in
#MECFS
is the decision-making problems. Like, I cannot even decide what to eat for breakfast. I just cán’t. Advice, anyone?
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Nowadays it’s still normal to link somatic symptoms to a psychological cause. Disease is your own individual problem and it comes with guilt and shame if you don’t recover quickly. 👇🏼
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Are there more people with
#MECFS
and
#LongCovid
that, besides the physical symptoms, experience mental health problems during
#PEM
? Feelings of depression, emptiness and sometimes even suicidal thoughts?
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If they were more open minded and would listen to
#MECFS
patients, there would be more curiosity and more research. But doctors aren’t trained this way. You are either sick, which is proved by tests, or your symptoms are psychosomatic 👇🏼
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if my tests say there is nothing wrong with you, your symptoms have to be psychosomatic. I think there is a huge grey area here, which they completely deny. This is because doctors aren’t God. And they don’t know every single detail about the human body yet.👇🏼
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And then, my dad doesn’t know what to belief anymore either. This is what
#medicalgaslighting
is about. People start to question themselves. The funny thing is that doctors keep talking about the connection between body and mind. While their vision is: 👇🏼
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will be fine. Just try harder’.
Dear people who mean well: if you don’t understand the situation someone else is in, think about what message you want to send them. Most often, it’s best to just be there for someone and listen. Don’t give any advices 👇🏼
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I didn’t realize I was suffering from
#MECFS
until I completely crashed after going to a physical therapist for 3 months while being already severe and homebound, almost bedbound. I cannot explain in words what happened after that and how that crash made me feel 👇🏼
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One fine day,
#MECFS
will be acknowledged for the disease it is. People will be shocked when they hear that you suffer from this illness. You will be treated with respect by doctors. People will send flowers and cards because they empathize. People will support you and praise 👇🏼
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How do we reach doctors on Twitter? (
#MedTwitter
?)
Doctors, when your patient experiences PEM (post-exertional malaise) DO NOT advice them to exercise. Advice them to take rest, pace and find their baseline of energy. After that, take babysteps. That is the only way
#MECFS
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because I had other medical issues and I had to undergo a lot of surgeries. Doctors
#gaslighted
me and told me all my other symptoms like extreme fatigue and cognitive problems were all in my head and I was just “deconditioned” because of my other medical issues 👇🏼
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Doctors, people with
#MECFS
and
#LongCovid
committing suicide because they are so sick and feel so neglected by the medical community and society, is that “secondary gain” as well?
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TW suicide
🧵 about post-infectious diseases and suicide.
When I was still working as a child psychologist I saw a lot of people who had suicidal thoughts or did a suicide attempt because of psychological issues. Never in my life did I think there was a disease that could 👇🏼
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But you can say there are more healthy coping mechanisms than others. For example exercise versus alcohol. But, when you have
#MECFS
everything that has to do with coping mechanisms becomes more difficult. My coping mechanisms to deal with stuff in life were 👇🏼
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I experienced adrenaline rushes 24/7 and wasn’t able to sleep anymore. I couldn’t look at my phone. I wasn’t able to speak to anyone. I took benzo’s to knock myself out because I didn’t know what else to do. And because of that
#PEM
, I tried to kill myself 👇🏼
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What many people don’t know is that Lauren (
@dutchlauren
) did everything in her power (and energy) to make a difference for the ME community. Her blog and her article have been the two most visible things. But what not everyone knows is that she donated her brain to the
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and ended up on the ICU, on a ventilator. It was total horror. After that I moved to my parents, still in an unbearable crash. And I had to explain to my dad what was going on. By then I had figured out that I was suffering from
#MECFS
👇🏼
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Coping mechanisms before
#MECFS
: exercising, walking, dancing, talking to friends. I can’t do any of them anymore due to a complete lack of energy.
Doctors: you have to see a psychiatrist.
Psychiatrist: you have no coping mechanisms.
Me: true. Because I’m not able to USE them.
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When I was still young and naive I thought that when you get sick, there is a model of a decision tree. You have disease X or Y and there’s treatment A, B or C. You either live or die.
Never in my life I imagined there was a disease that has no decision tree whatsoever.
#MECFS
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If there ever is a treatment for
#MECFS
and we can start living again instead of just surviving, how will we deal with the collective (healthcare) trauma? I can't imagine my life ever being the same again, now that I know how the world can treat people.
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The highlight of my day is when my mother brings me food. Those are my anchor points. And I’m so happy when it’s time to go to sleep again. Because sleeping means not feeling the hopelessness of this situation anymore. I miss my friends. And I miss being involved in their lives.
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Is there any literature on life expectancy when having
#MECFS
? Because I really hope I won’t have to sit this one out until I’m 90 years old.
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a very complicated situation. I am struggling and my dad is struggling as well. He’s trying to help me by getting second opinions by doctors he knows from his medical connections. But then, I get
#gaslighted
once again and the doctor explains to us about 👇🏼
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“the connection between body and mind” and how my symptoms are originally psychosomatic. The doctor said that I have to accept my situation. Only when I accept it, and stop looking for medical explanations, healing will be possible 👇🏼
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I know I should be very happy with this improvement. But the thing is; now that my survival mode is off and I have a little bit of headspace for anything else than just surviving, I look around and I see the damage this disease has done. I’m left with an empty, hollow feeling. 👇🏼
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Is that what they mean with using the “biopsychosocial” model, which is such a popular term nowadays? I have my doubts…
Meanwhile, I still love my dad. Whether he is a GP or not ❤️
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I’m sharing this one again because it’s so important for people to realize it’s not a choice to be one of the
#MillionsMissing
. It just happens. It’s a disease.
#MyalgicEncephalomyelitis
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The grief of what I’ve lost over the years starts now. I lost control over my body, my mental health, I lost my job, my friends, the ability to take care of myself. To wash and feed myself. To move around freely. I lost joy. I lost my whole me. This disease took everything.👇🏼
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But how do I explain I cannot leave my house or be in the presence of another human being for longer than 30-45 minutes? She thinks I have no friends anymore. But the thing is, there are to many friends. I’m simply not able to see them. That’s loneliness of a different kind. 👇🏼
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to deal with difficult emotions. I also learned a lot about what can go wrong when you’re not capable to regulate your emotions in a “good” way. Actually I don’t want to say there’s a good way or a bad way to do this, because everyone has different coping mechanisms 👇🏼
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I’ve been posting a lot lately about doctors and
#MedicalGaslighting
but today I met a doctor who said “there is definitely something wrong with your immune system, we just don’t know what it is yet”.
Thank you 🙏🏼
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People with post-infectious diseases don’t try to kill themselves because they are depressed or going through a psychotic episode. They do it because the physical suffering is unbearable. That is something very different from suicidal thoughts because of psychological issues. 👇🏼
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Sometimes it hits me, what if I do get better? There’s no life to get back to anymore.
#MECFS
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But when it comes to friendships, you need some common ground. But what if, after years of being ill, there is no common ground anymore? How do I prevent my precious friendships to disappear simply because I live in a parallel universe where we cannot reach each other anymore? 👇🏼
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as well. Also, very kind, and she meant well. But the thing is, people who mean well can still hurt you big time. My aunt reminds me of everything I cannot do anymore by sending me all those videos. The other message says ‘maybe you should think more positively and everything 👇🏼
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But in feb I moved to my parents, I started taking several medications and did nothing else than rest. I wasn’t even able to do anything else.
I’m starting to feel better. My body calmed down. I moved to a new apartment and I’m able to take care of myself again in babysteps👇🏼
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#MECFS
patients have a collective trauma when it comes to doctors. We have been neglected and gaslighted for decades now and it still continues. People with
#LongCovid
(often) experience the same amount of neglect. The thing I find most disturbing in this trauma we all 👇🏼
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I wish a doctor told me I suffered from
#MECFS
sooner, so that I could have started pacing sooner. Now, the consequence is that my illness became severe and I have to live with my parents, unable to care for myself at age 36 👇🏼
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I just didn’t know how to handle the visits because nobody told me I suffered from
#MECFS
. Loneliness in this disease is about not having the energy to see your family and friends and engage with their lives. Because your own life swallows all the energy you have left 👇🏼
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The most painful thing about
#medicalgaslighting
and
#medicalPTSS
is self-doubt. Am I imagining my disease? Aren’t they right? My own former colleagues (psychologists) think
#MECFS
is a psychosomatic disorder.
…. aren’t they right? I hate this feeling.
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be so physically unbearable that people would try to kill themselves because of it. But it does exist: post-infectious diseases. And I tried to kill myself as well. Because I was sent to a physical therapist and got the worst
#PEM
crash of my life after that, for months. 👇🏼
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Either way, nobody should feel ashamed about having those thoughts or feel ashamed after they attempted suicide. And that’s why I don’t want to feel ashamed anymore when I say “I’m a person who tried to kill herself”.
#MECFS
#Longcovid
#Lyme
#QFS
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I’m angry with doctors, with post-infectious diseases that are stigmatized and psychologized, I’m angry with people misunderstanding this illness, I’m angry about why this happens to me. I’m angry at life. And the problem with this anger is, is that it blocks my grief 👇🏼
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chronic fatigue syndrome or whatever”. She didn’t understand what I was saying but she did say “I can see you’re very tired”.
Then they had to insert my IV. The anesthesiologist said “you look very pale, are you ok?”. I said that I looked like this for 4 years already, so 👇🏼
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Dear ME community, this thread is from a dear friend who needs our help. Does anybody know what to do? It’s a post from
@NeleHelena
and I’m posting this for her because she’s not able to respond right now. Please RT if you can 💙
#MedTwitter
#pwME
👇🏼
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Yesterday, I confided in a close friend that I find it difficult to maintain all the friendships I had before I got sick. I felt guilty admitting that I barely have the energy to call or make plans anymore. I'm not sure what reaction I was expecting, but my friend started 👇🏼
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Personal 🧵 about my medical history. I just have to say all this once. It’s about the importance of getting a
#MECFS
diagnosis in time. And about
#medicalGaslighting
.
In 2019 my infections started with an abces and a fistula. I had to wait for three months.. 👇🏼
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#MECFS
and
#longcovid
are a non-stop cycle of hope and disappointment. As humans, we possess an insatiable lust for life, so we choose to endure years of suffering with the faintest glimmer of hope for improvement, rather than surrendering.
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But when they asked if I was ok (I often looked very tired and pale) I would always say “sure”. Only to crash for days or weeks after the visit. The loneliness I feel is not about people not wanting to be there. Luckily I have friends who care and want to come visit 👇🏼
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