Talking Again In 2025

Watch my new video reading this post:

♿️ Listen to me reading this post:

I started eating again in 2024. After 11 years not eating a crumb of food or even drinking a drop of water. I got all fluids and nutrition from tubes inserted into my body. For 11 years.

In 2025 I have another big improvement to announce.

I have started ‼️ TALKING ‼️ again after 12 years of not saying a word to anyone!

What will 2026 bring❓

Talking has been truly AMAZING. A slow process, it started when I slowly started feeling like I could talk again, but my stress response was still very high about it and it was hard to breach that stress wall and say the first words to someone. I first talked to my best friend, who I am really close with, comfortable with and feel very safe with so my stress levels are lower with her. I practiced talking to her on calls and video calls for about 6 months before talking to anyone else. Then I moved on with a few more close friends. It was hardest with my parents and caregiver because of the incredibly high stress I have been through with them in the past during my sickest years - my stress response seems to still be high with them - sensing danger likely due to a PTSD response mixed with the messed up fight or flight response in ME/CFS. But I am now talking to everyone! It is sooo much easier with my caregiver to just tell her what I need instead of pantomiming every little thing for sometimes a long time until she figures it out. What a relief! And I can have conversations with friends and loved ones!

I just said goodbye to a lifelong friend who is dying and I got to talk to her on the phone and tell her how much she means to me, the impact she has had on my life, how wonderful she is; And then say goodbye. It was profoundly sad, but it meant the world to me that I got to talk to her and say goodbye at all. She is not online and does not text, so it would have been so devastating not to have that last connection with her.

I also recently had a 2 hour meeting with my parents about a new project for Ron’s lab! And I was tired afterwards, but had no PEM from it.

And talking just feels sooooo good and natural and - so human! Relating to people in a much more direct way has been incredible.

I am so happy to be able to tell you all this. 💙

I sometimes stumble a bit talking, like my mouth and tongue just aren’t as coordinated as before, but that is getting better and otherwise it is now easy and very interestingly it feels natural like I never stopped talking. Though I like to think I sound much wiser now 😊

I truly believe that none of the symptoms of ME/CFS are permanent (excluding possible damage from Covid, but keep in mind that Covid research is still very very new. 5 years after HIV was discovered, we knew almost nothing about HIV, and that’s where we are with Covid research today. Some of the current research is surely accurate, but it is true without question that there are more unknowns than knowns at this point, and we should take current research finings with a few grains of salt and certainly not lose hope because of them.

But with regards to the frequent talk and worry on social media of “permanent damage” caused by ME/CFS, throw brain scans at me all you like. The brain can re-wire, adapt, re grow, re purpose, etc and we know next to nothing about the brain. Some very specific simple test about something we know very little about is proof of nothing.

Every single doctor thought I would never get stomach function back, and I am now getting all my calories from eating real food. And no one expected me to start talking again. But here I am.

I don’t know how my stomach has started working again or how I started being able to talk again. It is most likely from Joshua Leisk’s Born Free Protocol. I started his protocol right before these changes started to happen and nothing else was changed in my medication or physical routine at that time, so I feel confident, but not certain his protocol is responsible. The Born Free protocol is very complicated though (really overwhelming for most people, myself included) but hopefully there will be better guides put together in the near future as well as training other doctors to help patients through the protocol. But please don’t just run out and start doing this protocol blindly or push yourself into it, it needs to be done right - in the right order and in the right way or you could severely harm yourself. And it is still experimental and may not be for everyone, remember to always listen to your body and do what feels right to you.

I am making a video of this post for you all to see me talking and to celebrate! You have never heard my voice before and that is totally crazy. But I am excited to change that!

I don’t completely know what I will do with video content going forward, but let me know what you would like to see in the comments, I’m definitely going to be adding videos of me - talking - to my current advocacy work. I will probably start with some very raw and honest video diary type things with just one take where I talk spontaneously and honestly about how I’m feeling and aspects of life with ME/CFS. (probably a lot of me grumbling in the morning 😊)

And I would love to make edited videos with multiple cuts and different angles showing aspects of my routine and life, but that requires setting up a tripod and a lot of editing. And it’s too much work for my state of health right now. The accounts claimed to be run by “one person” who make a video every 2 days with multiple cuts and angles and perfect color and editing are actually run by film crews, I am a filmaker and know how much work it takes to make videos like this. I say this not to attack these accounts, but because I think most people believe making these videos just takes a couple taps on a phone, but in truth it is a technical and involved process that involves a lot of artistic intent. And I want to explain why I can’t make edited reels like this full of cuts from different angles all the time - I would love to, and I could if I was healthy, (even if not every 2 days) and it would be so great for advoacy and awareness, but I don’t have a film crew and am too sick to do it on my own. And also too sick to tolerate constant film crews.

I also want to add video recordings of me reading my posts in addition to the audio versions so people with different sensitivities can still read, watch or listen to my writing.

Thank you all for all your neverending support and I’m sending all my love to all of you. 💙💙💙

Improving from severe or moderate ME/CFS is possible, and you can come back from even the deepest, darkest hole of hellish ME/CFS. I have experienced it. Now I just need to get my brain back so I can think better and get out of bed!

I started eating again in 2024.
I started talking again in 2025.
What will 2026 bring❓

Sending love to all of you out there ❤️
Whitney