Thank you for making this available! The schedule for these classes never works for me!

It's truly a terrible disease. I've had CFS for a year. I've lost my future, my friends, and my education. I'm very sad and lying in bed. Even though I'm 20 years old, I feel very weak and can't do anything. This disease has destroyed my life. I beg the doctors to research this disease to quickly find a cure. I am very, very desperate. 😭

I've Suffered ABSOLUTE HELL Since 1987 from CFS/ME/FMA in Hull,UK!!... :( *i cAN'T SLEEP HALF THE TIME & I Feel like a 70 YEAR OLD CORPSE & have Terrible memory & cognative thinking abilities!!... :(

Still waiting 😭

Autism causes cfs fybromyalgia

Thanks so much!

And....none of this makes the news...EVER!!

The verbal abuse I endured for decades needs to be reported...but....I HAVE NO WHERE TO REPORT!! this illness has been going on since the beggining of time. I feel like I've been taken advantage of in so many ways. "They" made lots of money from me but I got zero help,zero diagnosis. There should be law suites over this total corruption on many many levels

I've lived with Severe M.E for 39 years & Very Profound Complex-PTSD for 47 years both caused by very extreme Chronic Neglience from the NHS & I brought a "In Limbo" T-shirt on Kara Spencer's page recently & today 12th May is such an extremely brutal day for me it re-traumatises me. I went to King's Mill Hospital A&E on 26th January 2024 and was subjected to more dreadfully ineptitude by the Woman who said the usual hopelessly negligent attitudes & simply didn't understand the actual prognosis for the rest of my life (I'm classed as a Housebound type). I'm pleased that Kara's family are going into the same King's Mill tomorrow to educate them #TeachMETreatME & love for her Sister & Family I'll be buying Kara's 'In Limbo' in the Summer and look forward to the 'Remember Us' song being sung by a Choir. Best Wishes David

thank you very much for a very relevant message

If only these people would have been treated earlier maybe they wouldn’t have gotten so severely disabled

💙

25 years. I had 2 non-believing GPs and it wasn't until I was almost as bad as I was at onset that I literally begged to be referred to specialist. Then I was on the waiting list for an out-of-town highly-ranked ME specialist for 2 years. I felt instant validation once the formal diagnosis was made but that feeling was short-lived when my doctor never once brought it up again and family thought I should be better.

I had tick bite fever in in South Africa in 1988 and was first diagnosed with postviral fatigue syndrome. I finally got a confirmation that it was ME in 1999, 10 years later after emigrating to England.

Aún no tengo este diagnóstico, si la sensibilidad química múltiple y la fibromialgia, No hay doctores que atiendan aunque si todos los síntomas. Asturias (España)

6 years, and during that time I got steadily worse. I hear that if you get diagnosed quickly you can stop the progression of the disease and remain more functional, but that ship sailed long ago. This is why it’s so important for medical schools to finally start teaching M.E.!

THANK YOU!

Nobody asked me to respond to this survey. It took 20 years to get my diagnosis. The first 10 years were full of verbal abuse and open hostility from self-important male doctors who thought I was lying to get their valuable attention. For the latter 10, a kind but ignorant (and somewhat elderly) doctor diagnosed "nervous exhaustion". In other words, I was attention seeking but I couldn't help it. Although he still would say "what is it NOW?" and once tried to stab me with a pen to prove I was malingering. When he retired, a younger doctor who had heard of the condition had a lightbulb moment, but only after I was hospitalised 18 times in 20 months with skin infections requiring lancing and antibiotics. It's a neuro-IMMUNE condition, folks. At least in part. UK.

28 ans, ville de Québec (Canada). Conséquence, 15 ans en psychiatrie à me faire dire que c'était une dysthymie (fond dépressif), résultat, j'ai pris de nombreux médicaments non nécessaires, j'ai fait des nombreuses urgences à cause de ses médicaments. Bref, hôpitaux, spécialistes pendant tout ce temps pour RIEN. Et ta vie tourne en rond. Depuis 2017 que je sais, arrêt de tous ses médicaments. Participer à des réunions dans le bon groupe et finalement, découvrir que l'on n'est pas seul et fou. Message à tous, ne pas oublier que l'on se doit à la prochaine génération, donc on participe aux associations style AQEM et on fait bouger les choses. On ne lâche pas.

10 Years UK

32 years - Toronto, Ont., Canada

With small fiber neuropathy I've had it for years why is it super painful even most more so during the day at night where you can't sleep😢

Dx in less then a year ..in 2016.. It mostly doesn't matter though because treatments are slim and don't carry much efficacy . The only thing good about it may be that more people are taking the illness seriously .

Very cooool! at 16:34 I hear the Beethoven's monumental - String Quartet in C-sharp minor, Op. 131 1st mvt. And the beauty is that it got transformed here into a major mode, which is a genius action. Such a beautiful rendering that give voices to chronic fatigue patients. Thx for this wonderful composition!

What happened to your latest video that you published after this one? I wanted to share it with others.

Wish I lived in America, I googled Neuro inflammation as I feel mine, it brought tears to my eyes to see the link. This is what I have. Massive thank you 🙏🏽

😇✨✨ Thanks 🙏 Danken 💐🙏💫

sfn cause twitchs/fasciculation? thats my question.

Thank you very much for the meditation 😊

This was just right! Thank you to everyone who made it happen.

Thank you Martin Byrial and the brilliant conductor and musicians for this piece that is so evocative of the ME experience. My tears were streaming because I felt truly seen as rarely happens with this darn illness: the challenges, invisibility, healings and the hope. I love how the audience broke with protocol and expressed their appreciation during the piece. It was an honour to be at the ME Action Premiere and interview with Martin Bryrial afterwards. I look forward to ME Action posting the interview with Martin so others can experience his kindness and his process in creating this important piece.

Thank you!💕

Thank you so much for this beautiful concert and to ME Action for sharing it with the world ❤

There aren’t enough ways to say thank you for this. Moved to tears and uplifted with immense gratitude. ❤❤❤ This will be on loop. Thank you from all of the ME and chronic illness community. 🙏🙏🙏

This is wonderful!

Thank you. Such an incredibly beautiful thing to do for people that are really suffering and otherwise ignored and forgotten.

Beautiful!

Beautiful

Thank you so much for this ❤

Thank you for this beautiful gift. I am listening from bed and so appreciate the beauty of it all

hello. trust you are doing great

Hello, thank for this severe ME adapted practice. I'm sound sensitive and would love a version with better sound if the opportunity present itself. Unfortunately (for me) I couldn't listen to it till the end.

Is there sound ? 😮

♥️✊🏻

This is amazing. Thank you all so much!

Good news. Tried to subscribe. I take it not up and running quite yet. Thank you.

💙💜🫂