Anil, onwijs bedankt voor het maken van deze sterke video, voor dit kwetsbare inkijkje en voor het geven van je energie hieraan. En ook voor het laten zien van de mooie en talentvolle persoon die je bent. Ondanks alles straal je zoveel compassie en levenslust uit. De dingen die je maakt zijn zo waardevol! We zijn vereerd dat je deze video voor #NietHersteld wilde maken! 💙
Hoi Anil, ik ben onder de indruk van je sterke geest, ik zag nu pas dit interview. Zelf anderhalf jaar ziek, maar je inspireert denk ik veel mensen die met hetzelfde worstelen. Ik hoop zo datvje inmiddels wel wat kan lezen. Om maar iets te noemen van alle dingen die je moet missen. Het is hartverscheurend wat een leed deze ziekte veroorzaakt.
i have long covid since january 2022. i contribute my courage and will to live to people with ME. i've so much to learn from everyone's experiences and i'm grateful someone retweeted your tweet about this video on twitter which i got to watch it full today. it makes me happy to know you used to do ballet! i wanted to do that since i was a kid. i imagine making this video was so much work. i hope you're resting very well after! i'm grateful for your existence. 💙
Anil, wat ben je een held voor ons ! Wat heb je dit mooi in beeld gebracht en je verhaal goed verwoord. Enorm knap dat je dit met je weinige energie hebt kunnen doen..
So agree with you- fatigue is not even close to the right word for my experience of ME. "Fatigue" suggests to me the experience of being tired or having aching muscles. Resting normally fatigued muscles and brain is in some ways pleasurable- put on the TV, make a cup of tea, take a warm bath, let your mind wander. I imagine people unfamiliar with it believe that ME is qualitatively similar to that, only quantitatively different. Perhaps the limits are lower and the recovery longer? That is not at all what ME feels like in my experience. There is intense, active, prolonged suffering. My fight/flight system is engaged as though a tiger had that very moment burst on to the path in front of me, and that feeling can be drawn out for days, weeks, making sleep nearly impossible. Muscles feel poisoned, feeble, filled with lactate for days longer than a normal workout. Clear thought is gone- working memory slips and skitters, ideas do not form, words come out as grunts. What is required during PEM cannot be described as rest. Doing nothing is not restful while in a state of malaise. From the outside, we are lying still and inert. Internally there is a conscious, active process of tolerating what is almost intolerable, for an unknowable amount of time. Relaxation and pleasure are physically impossible. Effort is required at every moment. The suffering insists upon your conscious mind and must be purposefully accepted, because there is not enough energy available to engage in any activity that might distract. You may have been a calm, resilient, logical person before the crash was upon you, but you quickly realise how much of that version of yourself was contingent on a functioning nervous system. It remains, but it is an excellent driver in charge of a car with cut brakes, smashed windscreen, cracked axles, a wheel careening into the bushes. And despite that, we persist. We are condemned to be present, confused but fully conscious. We love, yearn, mourn as intensely as ever. There is no anaesthetic, no sleep, no way to dull the experience. If you had asked me to imagine what hell might feel like before I had experienced ME, it would not have been close. In that hell we learn what is left of value to each of us when almost everything is taken. I wish for a day when we are all able to emerge from our hells and share those lessons with louder voices than we can muster inside them. In the meantime I celebrate and appreciate what you do share, Anil.
As I always say: " chronically fatigued? I honestly wish it was that..." Not to diminish the experience of people who are in fact fatigued, but it's something so totally different.
Anil, je boodschap grijpt aan en komt absoluut binnen. De kracht en balans (nu even niet als danser) die je uitstraalt is een krachtige motivatie voor patient, maar zeker ook voor de niet-patient, zoals ik. Ik hoop dat ik de steun van de ME wereld ga krijgen om van significante betekenis voor jullie te kunnen gaan zijn. Respect!
"...er zijn mensen die ernstiger ziek zijn dan ik..." Dat kan bijna niet, denk ik dan, maar helaas is het wel waar. Ik heb veel respect en bewondering voor je inzet! 💪🏼
This account by you is absolutely riveting. So glad about the latest improvements for you and astounded at your courage and effort in presenting the real situation for severe ME to the public. Heartbreaking that this disease is so misunderstood and not given the attention, education and research it deserves. And the children...omg 😢 Remote hugs for you and your assistant there (Grigor) ❤ Will share your story.
Thank you very much for this video. I really hope that your work will allow the health staff to understand what you are going through. My partner also has this disease. But not so severely. And it’s a real sundhine in my life. I’m sending you a lot of good vibes.
Thank you for letting us in to your life to teach us about severe M.E. Anil. This video must have taken so much of your energy to create and I'm very touched that you made it for Severe M.E. Day. Hopefully before 2026! Lots of love from NYC ❤️
That's an amazing interview. Thank you for this. I wish this disease would be called something like Malignant Neuro Immune Disease, not CFS. In my country there is no such diagnoses as M.E even, or Long Covid. I am always neglected and gaslighted. Only one neurologist suggested herpes neuro infection but along with "psychosomatic" disorder. It's unbearable.
🙏🏻🙏🏻🙏🏻🙏🏻 dankjewel Anil, prachtig maar zo ontluisterend. Jeetje. Goed dat je dit deelt met de wereld. En dat gevoel van onrechtvaardigheid, zo herkenbaar. Ook mijn drijfveer om te blijven vechten en te blijven delen. 💪🏻
Lieve Anil,wat zit ik toch te zeuren over mijn energieniveau dat tussen de 50 en 90 procent schommelt.dit komt door mijn autisme, depressieve aanleg, motorische achterstand,etc,etc.ik kan werken,sporten, recreatieve dingen doen,maar wel lichte bezigheden,niet te lang achter elkaar en met rustmomenten.
Lieve Anil, thanks for sharing all of this in your sincere, humble, raw words. Beautiful human being you are, and i am grateful for the people around you supporting you. Soft hugs from London
Anil, onwijs bedankt voor het maken van deze sterke video, voor dit kwetsbare inkijkje en voor het geven van je energie hieraan. En ook voor het laten zien van de mooie en talentvolle persoon die je bent. Ondanks alles straal je zoveel compassie en levenslust uit. De dingen die je maakt zijn zo waardevol! We zijn vereerd dat je deze video voor #NietHersteld wilde maken!
💙
Hoi Anil, ik ben onder de indruk van je sterke geest, ik zag nu pas dit interview.
Zelf anderhalf jaar ziek, maar je inspireert denk ik veel mensen die met hetzelfde worstelen.
Ik hoop zo datvje inmiddels wel wat kan lezen. Om maar iets te noemen van alle dingen die je moet missen.
Het is hartverscheurend wat een leed deze ziekte veroorzaakt.
i have long covid since january 2022. i contribute my courage and will to live to people with ME. i've so much to learn from everyone's experiences and i'm grateful someone retweeted your tweet about this video on twitter which i got to watch it full today.
it makes me happy to know you used to do ballet! i wanted to do that since i was a kid.
i imagine making this video was so much work. i hope you're resting very well after! i'm grateful for your existence. 💙
Anil, wat ben je een held voor ons !
Wat heb je dit mooi in beeld gebracht en je verhaal goed verwoord. Enorm knap dat je dit met je weinige energie hebt kunnen doen..
So agree with you- fatigue is not even close to the right word for my experience of ME.
"Fatigue" suggests to me the experience of being tired or having aching muscles. Resting normally fatigued muscles and brain is in some ways pleasurable- put on the TV, make a cup of tea, take a warm bath, let your mind wander.
I imagine people unfamiliar with it believe that ME is qualitatively similar to that, only quantitatively different. Perhaps the limits are lower and the recovery longer?
That is not at all what ME feels like in my experience. There is intense, active, prolonged suffering. My fight/flight system is engaged as though a tiger had that very moment burst on to the path in front of me, and that feeling can be drawn out for days, weeks, making sleep nearly impossible. Muscles feel poisoned, feeble, filled with lactate for days longer than a normal workout. Clear thought is gone- working memory slips and skitters, ideas do not form, words come out as grunts.
What is required during PEM cannot be described as rest. Doing nothing is not restful while in a state of malaise. From the outside, we are lying still and inert. Internally there is a conscious, active process of tolerating what is almost intolerable, for an unknowable amount of time. Relaxation and pleasure are physically impossible. Effort is required at every moment. The suffering insists upon your conscious mind and must be purposefully accepted, because there is not enough energy available to engage in any activity that might distract.
You may have been a calm, resilient, logical person before the crash was upon you, but you quickly realise how much of that version of yourself was contingent on a functioning nervous system. It remains, but it is an excellent driver in charge of a car with cut brakes, smashed windscreen, cracked axles, a wheel careening into the bushes.
And despite that, we persist. We are condemned to be present, confused but fully conscious. We love, yearn, mourn as intensely as ever. There is no anaesthetic, no sleep, no way to dull the experience.
If you had asked me to imagine what hell might feel like before I had experienced ME, it would not have been close. In that hell we learn what is left of value to each of us when almost everything is taken.
I wish for a day when we are all able to emerge from our hells and share those lessons with louder voices than we can muster inside them. In the meantime I celebrate and appreciate what you do share, Anil.
As I always say: " chronically fatigued? I honestly wish it was that..." Not to diminish the experience of people who are in fact fatigued, but it's something so totally different.
I feel exactly the same as you! Constantly wired, not resting ever, no normal thought, etc
Anil, je boodschap grijpt aan en komt absoluut binnen. De kracht en balans (nu even niet als danser) die je uitstraalt is een krachtige motivatie voor patient, maar zeker ook voor de niet-patient, zoals ik. Ik hoop dat ik de steun van de ME wereld ga krijgen om van significante betekenis voor jullie te kunnen gaan zijn. Respect!
"...er zijn mensen die ernstiger ziek zijn dan ik..." Dat kan bijna niet, denk ik dan, maar helaas is het wel waar. Ik heb veel respect en bewondering voor je inzet! 💪🏼
Thank you so much for your contributions to the scientific conversation and to raising public awareness Anil. Very grateful ❤️
This account by you is absolutely riveting. So glad about the latest improvements for you and astounded at your courage and effort in presenting the real situation for severe ME to the public. Heartbreaking that this disease is so misunderstood and not given the attention, education and research it deserves. And the children...omg 😢 Remote hugs for you and your assistant there (Grigor) ❤ Will share your story.
Thank you very much for this video. I really hope that your work will allow the health staff to understand what you are going through. My partner also has this disease. But not so severely. And it’s a real sundhine in my life. I’m sending you a lot of good vibes.
This is really extraordinary and critically important, like all of your videos. So impressed and grateful for this.
Thank you Anil. I'm grateful. 💚
Thank you for letting us in to your life to teach us about severe M.E. Anil. This video must have taken so much of your energy to create and I'm very touched that you made it for Severe M.E. Day. Hopefully before 2026!
Lots of love from NYC ❤️
Liefde ❤ voor jou….veel liefde
Thank you Anil for another wonderful video that can be shared to educate others. Sending you much love and good wishes from me in Australia. 💕
Great interview thank you
Dankjewel Anil .. 💙
Blessings 🙏🏻
That's an amazing interview. Thank you for this. I wish this disease would be called something like Malignant Neuro Immune Disease, not CFS. In my country there is no such diagnoses as M.E even, or Long Covid. I am always neglected and gaslighted. Only one neurologist suggested herpes neuro infection but along with "psychosomatic" disorder. It's unbearable.
🙏🏻🙏🏻🙏🏻🙏🏻 dankjewel Anil, prachtig maar zo ontluisterend. Jeetje. Goed dat je dit deelt met de wereld. En dat gevoel van onrechtvaardigheid, zo herkenbaar. Ook mijn drijfveer om te blijven vechten en te blijven delen. 💪🏻
Bedankt voor het delen ❤
Lieve Anil,wat zit ik toch te zeuren over mijn energieniveau dat tussen de 50 en 90 procent schommelt.dit komt door mijn autisme, depressieve aanleg, motorische achterstand,etc,etc.ik kan werken,sporten, recreatieve dingen doen,maar wel lichte bezigheden,niet te lang achter elkaar en met rustmomenten.
Wauw! Dankjewel voor je verhaal! Heel goed om te delen! Veel sterkte!❤
Thank you!🙏💙
Lieve Anil, thanks for sharing all of this in your sincere, humble, raw words. Beautiful human being you are, and i am grateful for the people around you supporting you. Soft hugs from London
Thank you so much Anil 🩵
💜💙