Anil van der Zee ©
@AnilvanderZee
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Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissing
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Joined June 2011
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Pinned Tweet
1) Having
#severeME
and being homebound often feels like a prison. You're locked up in your home and your body, away from society, your loved ones, from the life you desperately yearn to live.
Most years, I see maybe one or two people, and many years I
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1) Professor
@VirusesImmunity
about Long-Covid being a functional disorder:
"What we're saying is that
#LongCovid
at least,
what we're able to already obtain data from patients is that we can explain 94% with accuracy, 94% accuracy long COVID just by looking at the
I was really pleased to talk today with Yale's Akiko Iwasaki, a professor of immunobiology and a leading long Covid investigator.
@VirusesImmunity
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"Study finds CAR T-cell treatment sends lupus into remission, raising hopes it could be used to treat diseases such multiple sclerosis."
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1) Since I've been living isolated from the world since 2013, and from 2015, one visitor per year has not been uncommon. I've decided to film my current life with M.E.
Not that my days are that exciting, but I often get questions about how I get by. How
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1) "Now, researchers have identified a protein that’s present at unusually high levels in the muscles of people with
#MECFS
and that disrupts cells’ ability to generate energy. The findings, reported today in the Proceedings of the National Academy of
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My doctor told me I'd probably recover from my CMV infection in about 3 weeks. We're now 15 years and counting and I'm still one of the
#MillionsMissing
#MEawarenessmonth
#pwme
#myalgicE
#severeME
#photophobia
#hyperacusis
#POTS
#art2cureME
#canyouseeMEnow
#zorgbetervoorME
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This bit gave me tears in my eyes. Psychiatrist &
#longcovid
patient
@MolmansTom
telling it like it is on Dutch nat. TV. Explaining about not taking people with PAISes seriously. Harmful treatments. Psychologizing & that we have a lot of catching up to do with biomed research.
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Melissa with a severe form of
#LongCovid
on Dutch national TV.
It starts with her from a year ago and then a year later and how much she deteriorated.
A glimpse of how severe
#longCOVID
can get and this is far from the worst unfortunately. (Eng subs)
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My old ballet teacher wrote me. She saw
@unrestfilm
. After years of explaining she finally understood how I must feel. Her prodigy who suddenly stopped dancing. Today it clicked
Unrest might not b winning an Oscar but man did it win over a lot of ❤️s. TY
@jenbrea
& ur team.
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He's just a cat.
My life saving cat.
Due to M.E. I've been living completely isolated from the world for the past 7 years. I'm not sure that without my furry BFF I would've been able to handle it. A short (cuddle) video about mr Grigor & me with M.E.
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I try not to think too much about it, but there's no denying that time keeps ticking. I'm 45 & it'll run out. 17 years imprisoned by ME. So many things I still want to do, but science is moving slowly. Will
#severeME
be my end or will I actually still fully live?
#MEawarenesshour
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My skin color 👉 name-calling
#BlackLivesMatter
My sexual preference 👉 verbal & physical abuse
#LGBTQlivesmatter
🏳️🌈
Being a ME-patient 👉 ridiculed & disbelieved by medical professionals
#pwMElivesmatter
✌️
Despite the ignorance I'm still damn
#proud2Bme
💪
#MEawarenesshour
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🧵 Some feel that
#pwme
(&
#longCOVID
) are faking their condition or that they're making it all up. That it's deconditioning, kinesiofobia & lets not forget the secondary gains!
This is me still in my dancing years. I felt alive, invincible & on top of the world. I adored my job
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Fatigue in illness doesn't go away when resting, a holiday or a few good nights of sleep. It's part of the disease & it'll only disappear once ur not longer ill. I therefore never talk about fatigue, but about feeling ill & I defo never use the name (chronic) f-word (syndrome).
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Exciting Dutch article:
"Scientists in Amsterdam have now found an enzyme that could be the culprit (of
#LongCovid
). “I thought, wow, this could be really important.”
Only in vitro, small study, but...
@ahandvanish
@loscharlos
@EricTopol
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1) I remember at the beginning of having ME, watching a documentary about (very)
#severeME
, being moderately Ill felt so lucky not having to live in the dark as they did. Hidden away from society. 15 years later I ended up being one of them. That's why we urgently need better
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We've lost another beautiful soul today. May you rest in peace dear Lauren. 😢❤️
Today is also the birthday Céline Corsius who passed away 18-09-2023.
With the passing of Lauren we've lost 4 beautiful women with severe ME in the NL on a short period of time...
#zorgbetervoorME
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1) "The suspect protein in this case, called WASF3, had been linked to chronic fatigue syndrome before, in a 2011 meta-analysis that no one had followed up on. A study of the woman's blood supported suspicions that symptoms of extreme fatigue were linked
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I've felt heartbroken today. We all know how hard it is to suffer from ME, but watching
#LongCovidKids
who r just as debilitated as we've seen
#KidswithME
for decades it breaks my 💔. Like what the fuck has the scientific & med world been doing that we let kids suffer this way?
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1) OMG!!! 🧵
This morning I laughed and cried both of joy and sadness. All combined. I never cry! I have been such a fan of
@GrigorDimitrov
for years. Unfortunately, I have never been able to watch Grigor play in person, and for many years I was too ill to watch videos
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This is so amazing & exciting to see this in depth research into PEM. Suffering from it for 17 years & not being taken seriously as a prof. athlete, it quite emotional to see this work coming from the Netherlands. Congrats to the team for their incredible work! TY
@RobWust
❤️🇳🇱
The study by
@RobWust
and team about muscle abnormalities in post-exertional malais in Long Covid is now published in Nature Communications:
#LongCovid
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Since moving to my new house I'm not crashing non stop from the noise of my neighbours. It means that I'm a bit more stable and have some more energy to spare. After quite a few trial and errors, and organizing it well, I finally managed to quickly take a picture while sitting
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OMFG. In the Netherlands the NKCV (our 🇳🇱 PACE-trial friends) has been ordered by the Advertisement Code Commission to change their misleading text about CBT being safe. This really made my day. Who's next?
Original:
English:
.
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I never thought that as a ballet dancer I had to go dig through scientific papers to understand why the science has been saying so much utter bullshit about my disease & me. This wasn't & still isn't my job. To those scientist who this may concern: why don't you do your job...?!?
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A short talk about ME, post-exertional malaise and not being listened to. This video was mainly created so I could play around a bit with video editing for beginners. :-)
#pwME
#PEM
#PESE
#LongCovid
#Science
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Waiting
Hoping
Disappearing
Vegetating
Shrinking
Waning
Deteriorating
Wasting
Decaying
Suffering
Agonizing
Breaking
Collapsing
Sinking
Neglecting
Abandoning
Disappearing
Losing
Living?
#severeME
#MEawarenesshour
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This is how
#severeME
can get. This is what happens when you don't properly research a disease and let people suffer in agony as a "living death" for years. Generations after generations. It's time for change!!!
TY so much Krista for sharing your story.
#pwme
#millionsmissing
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My body feels broken by M.E. much like my trust has been broken by the medical & scientific world. Fortunately things are slowly changing, but even if we find a cure, there will still be a long way to go before I emotionally will feel healed.
#MEawarenessday
#millionsmissing
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Doctor: Don’t confuse your Google search with my 6y at medical school.
Me: Don’t confuse the 1-hour lecture you had on (chronic) fatigue (syndrome) with my 13y of living with ME that is NOT characterized by chronic fatigue but by a form of exertion intolerance.
#MEawarenesshour
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“If we had treated
#MECFS
seriously, we might have had a treatment for
#LongCovid
" — Dr Deborah Birx with
@ChrisCuomo
With subtitles and fixed the audio a little bit.
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.
@RobWust
about his research into post-exertional malaise in
#LongCovid
(and hopefully ME):
“It is still a little too early to reveal the contents of this, but we think we have big news."
#longCOVID
#pwme
#PEM
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I wish that everyone would stop talking about "choosing" to die by either suicide or assisted suicide. If u don't see life as an option anymore then death is not a choice. You can choose when options are available. The med. & scientific world has left some
#pwME
no other option.
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Made an
#MEawareness
sweater. I do however think that it might send out the wrong message during a date or the right one depending on what you're after of course. We all know that small talk is terribly exhausting for us peeps with ME. So I guess it's actually multifunctional!👌
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"They don’t believe that the autonomic nervous system is behaving poorly in
#MECFS
and
#longCOVID
at all; instead, they believe its simply trying to compensate for problems in the small blood vessels that feed our tissues."
.
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The
#verysevereME
version. Unfortunately spot on...
#pwme
#myalgicE
#millionsmissing
#severeME
#photophobia
#hyperacusis
#POTS
#orthostaticintolerance
(Tap for full image)
My illness took away my life bits by bits until my whole world was no bigger than the square of my bed.
I’m one of 17-24 millions with ME…
#pwME
#MEawarenesshour
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Before ME these legs moved me & an audience.
After ME these legs left me motionless, unnoticed & hidden away from society as a whole.
My body imprisons me. Redefining that inner dancer with this disease ain't easy. It'll always feel like a sorry fraction of what it used to be.
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Due to years of gaslighting, harmful brainwash psych treatments & medical neglect. After almost 15 years of illness with severe disability & great losses on all aspects of life. It still happens 2 me that @ times I think I'm making this shitty disease all up...
#MEawarenesshour
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Big news! A party in the Netherlands!!!
ALL 3 AMENDMENTS HAVE BEEN ACCEPTED!! 👍🙏
🙌 Amendment for outpatient clinics.
🙌 Amendment €4.4 million extra for
#pwME
research.
🙌 Amendment for additional resources for healthcare workers
#longCOVID
.
#PAIS
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Some say that ME is an invisible illness, but that's only when you do not look beyond the person in front of you.
Ask them what their lives looked like before they became ill and you'll see the real, and the losses caused by, M.E.
#canyouseeMEnow
#MEawarenesshour
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1) The results made it clear that exercise was indeed causing
#MECFS
patients’ guts to leak – spilling gut bacteria and food contents into the blood. One side of the immune system – the antibodies – leapt into action. Another side – the early
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1) KEY FACTS:
The study shows that
#longCovid
patients have clear immune and hormonal differences from patients who don’t have the condition.
The researchers analyzed 271 patients from Mount Sinai Hospital, Mount Sinai Union Square and the Yale School
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What would you be if didn't have ME?
Me:
- Choreographer
- Ballet and Improvisation teacher
- Portrait and wildlife photographer
- Filmmaker
- Slut
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The years of religiously neglecting, gaslighting & silencing people with ME has clearly been counterproductive.
With no effective treatments for the millions of people with
#LongCovid
people urgently need to see & hear ME. Speak about & especially learn from (people with) ME.
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1) When I die many of my healthy friends and colleagues will write how I was plagued and hampered by my disease. Some might even see this as a failed career, but you never stop being who you are. Even when you're ill you remain the same person and artist.
Plus they might have no
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1) "A new study reveals how brain inflammation from infections and neurodegenerative diseases causes muscle weakness by releasing the IL-6 protein. Researchers found that IL-6 travels from the brain to muscles, reducing their energy production & function.
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I bought myself a present. It's thé CBT treatment protocol for chronic fatigue syndrome. I'll finally be able to cure myself! 😂
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This is
#mylastnormalphoto
.
13 years ago. The weekend just before I became ill. I was already feeling a bit under the weather. Not really in an energetic saturday's night party mood. Strange how I still remember this night.
Do you remember the days before you became ill?
#pwme
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I didn't prepare much for
#SevereMEDay
, so I recorded this rather unprepared.
I rant about graded activity/GET & how these treatments can cause more harm, adding more people to the severe M.E. category.
There is some swearing & an angry cat. Be warned.
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Lots of things go well in healthcare but with ME things can often go awfully wrong as well. Even to the point of people dying. We now see the same happening with Millie.
#DontLetMEDie
Ignorance, neglect and abuse shouldn't be part of Health Care.
Please
#BringMillieHome
#pwme
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The worst part of ME is not the suffering due to the disease perse, but that the 24/7 onslaught of disabling symptoms, the immense disability for years, the social isolation, iatrogenic harms, abuse, neglect, the deaths could've been prevented decades ago.
#MEawarenesshour
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When I still danced I was unaware of how my "endless" physical capabilities could be taken away from me.
I knew my career could end in a heartbeat, but I was unaware how movement would become my greatest foe.
I'm aware of the unaware. Making u aware of ME.
#MEawarenesshour
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You know someone is full of shit when they write the following:
"Yet despite years of well-funded research..."
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2) immunological factors alone. So to me that
says that this disease is driven by, you know, something, or immune response to the infection or something else that's triggered by the infection, and we don't need to invoke other hypotheses to explain it.
And that's why, you know,
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Interesting article by
@EdYoung
. For me fatigue is also the wrong description. It's an energy impairment that in my view is not the same as fatigue. I was fatigued after a day of dancing. Which I did 6 days a week. Imo ME has nothing to do with fatigue.
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1) It was a very special experience for me to be able to speak so extensively about
#severeME
. About what having severe M.E. means. How it’s affecting me on a daily basis. How I became severe. What people with severe M.E. need. What needs to be done better and how I cope with
🎥 𝗘𝗲𝗻 𝗶𝗻𝘁𝗲𝗿𝘃𝗶𝗲𝘄 𝗺𝗲𝘁
@AnilvanderZee
In de video beantwoord Anil vragen over het leven met
#SevereME
. Hoe het is om ernstige ME te hebben, hoe hij ermee omgaat, het volhoudt & wat er nodig is. Rauw, eerlijk en met veel compassie.
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Yesterday was the gaypride. A tradition for me to visit with my friends, but haven't been able to do so for years. I hope it will happen one day again although some of my friends aren't with us anymore. Somethings you'll just never get back anymore. Including parts of myself...
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PEM is NOT a normal reaction 2 exertion because of being deconditioned. It's BS
Also my 1st signs of ME/POTS started a few weeks prior to my viral infection
As a prof. ballet dancer I had ballet buns of steel. I was definitely not deconditioned
Just sayin 🙄
#MEawarenesshour
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I've always feared
#HIV
/
#AIDS
& always been inspired by
#ACTUP
.
Stunned by the passivity in regards to HIV/AIDS &
#ME
& now
#LongCovid
despite the immense suffering.
Check out my blog about activism, fighting back, love & revolutionizing medicine.
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It touches me to see this. We've worked so hard to get
#PEM
on the map as hallmark symptom of ME as there has always been this misguided focus on "fatigue". Great to see a whole new generation getting aqainted with PEM & even working on finding solutions for it. Great job! ❤️🙏😉
Our BSc students are presenting their results about
#PEM
in
#longcovid
and
#mecfs
. Lots of work, and giving us another 🧩 pieces to understanding PEM. We now check their data, and will add more results before writing this up for a follow-up publication. Great work guys!
@VU_FGB
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When some random person on a dating app writes you that they saw you in
#UniteToFight2024
. Mkay! 😉
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When you lose someone close to you, but due to M.E. you can't pay ur respect in person. You do not just lose that person, and a very last memory you could've created together. It's also a reminder of that you've lost just another part of many of ur former self.
#MEawarenesshour
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Ill for 17 years. Home/sofa-bound for 11 years. Chiefly bedbound since 8 years. Looking at my old me it's hard to believe that this was me. It's hard to believe how many suffered the same fate before and after ME. How many more lives are we planning to waste?
#MEawarenesshour
.
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OMFG! CBT/GET promoter Elise van de Putte. Author of the Dutch PACE-trial called FITNET admits that she harmed about 30 to 40 % of the patients with "
#CFS
".
Obviously this is a huge underestimation & she's still promoting CBT/GET eventhough it goes against scientific advances...
De zorg voor kinderen is professioneler geworden, ziet kinderarts Elise van de Putte (66). Maar ze stelt óók vast dat ouders geen duidelijke kaders meer bieden. „Je ziet de wildste taferelen in je spreekkamer.”
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Happy to learn that Swiss neurologists have initiated a task force to tackle
#longcovid
and ME.
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"I wish I was wrong"
This is such an amazing interview with Swiss neurologist Maja Strasser about
#longCOVID
. Really worth the read.
"I'm treating every patient as if they were my best friend"
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Today my BFF and carer had a muscle biopsy to join the ME PEM study by
@RobWust
et al.
I've been advocating for PEM so long that, although I'm not able to join the study personally, I'm super excited to somehow be part of it. Together with the findings of the
#longCOVID
study,
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I tell my GP that I have dry skin on my scalp and that it could also be related to the fact that I can't really wash my hair.
My GP prescribes me a freaking (medical) shampoo to wash my hair every day...
She's doesn't get
#severeME
nor does she really listen to me/M.E...SMH
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I miss dancing.
I miss moving without it making it me more ill.
I miss being on stage.
I miss that
#XTC
.
I miss feeling free.
I miss feeling alive.
I miss being me without the ME.
If I would've been faking, I would not have chosen this damn disease ME.
#MEawarenesshour
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It always shocks me when I meet a random person who either themselves or a loved one suffers from ME and lives in the most dire circumstances that you wouldn't even wish on your worst enemy. How many more people in my neighborhood are going through the same thing, hidden away
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My skin is hungry.
It's hungry for a touch. A tender moment. That feeling of being held, in love & admiration.
Lips touching. Eyes swiftly meeting. The heavy breathing. The complexity of smells.
9 years of isolation.
My skin is hungry.
My skin is starving.
#MEawarenessmonth
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1) "I always have in the back of my mind – how can these insights from
#longCovid
help people with
#MECFS
& other post-acute phases of infections, like post Lyme disease? I’m so excited about receiving this new award because it shows that long Covid and
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What I'm reading in this article is how we've neglected patients with post-acute infectious conditions for decades & that we now have nothing to offer to any of them incl. millions of people with
#LongCovid
. The scientific & medical world should be very ashamed of themselves.
Patients with long covid are travelling to private clinics in Cyprus, Germany, and Switzerland for blood filtering apheresis and anticoagulation drugs. Yet experts question if these treatments should be offered without sufficient evidence.
@madlendavies
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Ohhhh
@oonagh_cousins
. Thank you, thank you, thank you. We need to have elite athletes to explain about PEM, "fatigue" and so on. We are the ones that know our bodies the best. Well done!!!
#UniteToFight2024
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I'm 45 today. Holy c...!!!! 👇
1) Since I've been living isolated from the world since 2013, and from 2015, one visitor per year has not been uncommon. I've decided to film my current life with M.E.
Not that my days are that exciting, but I often get questions about how I get by. How
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Too crashy to write something useful, but sending all my love to everyone with
#LongCovid
on
#LongCovidAwarenessDay
.
Let's "stand" together to fight for change.
Big hug to you all!
👨🏾😻
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Where r all the patients who r cured by the
#PACEtrial
. They would b screaming it of the roof right? Twitter, Facebook...
#pwme
#mecfs
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From Denmark. Everyone voted yes!!!
This is groundbreaking! All parties agree on the amendment to separate ME from Functional Somatic Syndrom (Funktionel lidelse by Per Fink)
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I shared the short film also on my personal Facebook page. There were only 2 of my non ME community friends that responsed. On my Anil about ME FB page only 1. I find it hard not to make some bitchy comment about it. Clearly difficult to get stories told outside of the bubble.
1) Having
#severeME
and being homebound often feels like a prison. You're locked up in your home and your body, away from society, your loved ones, from the life you desperately yearn to live.
Most years, I see maybe one or two people, and many years I
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Great article. As a former athlete I would love to see an article about elite athletes with ME as well. The void I fell in having no MDs/researchers showing any interest in why I became more ill after exertion has been heartbreaking. My life didn't matter.
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I'm not in bed because I'm tired. I'm in bed because of my orthostatic intolerance
I am however frikkin tired of having 2 educate an entire healthcare system that ME = not about being tired but about being ill
Man, I'm so tired of a HCS making me feel tired!!
#MEawarenesshour
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Grigor has had allergies for a while now. Changing food helps a bit but doesn't fix it completely. Sucks for him of course, but what surprises me the most are the long ass emails the vet sends to help us out instead of the one liners I get from my MDs. Imma bit jealous of my cat!
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Some days I just really miss that feeling of my favorite thing in the ballet class: turning.
I hope that if I ever recover I will still be young enough to do a few turns in the kitchen...
#pwme
#myalgicE
#millionsmissing
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1) More than 40 doctors and scientists from five academic centers will jointly search for the cause of
#LongCovid
with private funding. They no longer want to wait for the announced government subsidies and have put together four research groups, which
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I'm amazed by what they're organizing to raise awareness & funds for
#LongCOVID
and
#pwme
. Takes courage to show yourself this vulnerable. Can't imagine how much energy this is taking. Also impressed she's not afraid to say she also developed ME. Important for awareness as well!
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It's a balancing act for me. The attention for
#longCOVID
is necessary. Mostly I see the positives. It will help us all, but some moments I just want to scream! That's me. That's M.E. and why didn't you see M.E. and care about M.E./me before?!? We're still being neglected...
imagine having been bedbound with
#MECFS
for many years. No help, just gaslighting and neglect. But somehow you are still here. Then one day a pandemic hits and suddenly there are millions of people struggling with the exact same thing as you have been.
1/2
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“I contracted a post-viral condition in 2019,” she said. “I’m OK now, but I saw first-hand that medicine does not always have answers to the consequences of even minor viruses.”
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I agree with them. We will not be silenced and I (and I'm hoping we?) definitely won't shut up!!!
Let's keep pushing. Let's be loud!!!!!!
#MEawarenessmonth
#MEawarenessday
#millionsmissing
#MEsuperheroes
#pwme
#myalgicE
#severeME
#photophobia
#hyperacusis
#spoonie
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After 8 years not really being able to I've been sunbathing quite a bit these last couple of weeks. Today I'm crashing. Grigor prefers to stay with me in the dark eventhough he could enjoy the sun some more. That why I survived these years. I was never alone! 😻
#canyouseeMEow
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"Our data suggest that SARS-CoV-2 induces vagus nerve inflammation followed by autonomic dysfunction which contributes to critical disease courses and might contribute to dysautonomia observed in long COVID."
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I know many of u r in the same position or worse than I am during Christmas. This is the 5th year in a row alone. It never gets old
Let's keep fighting & let's keep kicking
#MyaglicE
in the (Christmas) balls so we'll hopefully b in a better position next year
Merry Christmas 🤙
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Post exertional malaise, as seen in ME, is not solely caused by distress.
Activities that are considered eustress like having a friend come over, enjoying a bit of sun or having a good laugh can make me equally as ill even.
#MEawarenesshour
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2) do I eat, clean, go to the toilet, etc. Both from my non-ME friends, people from the patient community and medical professionals. It might give a unique insight into what the disease forces you to do. I've tried not to hold back on any details, including the private ones, and
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