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Very difficult listen 💔 ❤️‍🩹 my heart goes out to the woman first interviewed Also I have to say I was a bit disappointed that “everyone” kept focusing on her ME being the main block around her finding out the real detailed info on her cancer, especially since it was so related to female reproductive health and how it is gatekept and systematically fails people born female. To me it was very almost beyond obvious that the assumptions around her “probably not wanting her ovaries” out to the point of not even bringing it up is fundamentally based in sexism and the concept that women should want to keep their reproductive organs because they “might want to get pregnant (or pregnant again)” which is held as more important by our medical systems than the health of the people with the organs. Anyways couldn’t help but have a lil desperation rant, confused as to why the other woman didn’t say anything 😢😢

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Thank you all so much. So much unnecessary suffering we go through. The medical 'profession' is beyond belief!

3 lovely faces:) Thank you.

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Funniest book (about a serious subject) that I read in 2024. I recommend it!

Beautifully expressing the paradox of the inner human experience of suffering and emerged/emerging limitations woven in with awareness of the vastness, power and awesomeness of such an extraordinary Universe. Thank you, Rachel and Dov for reciting

The lightning process made me crash, so did Mickel therapy

Absolutely love this idea, I’d love to get involved. Thank you both!

Thank you, Dan and Dov, for the time and energy you put into the podcast. I feel much less alone and relate to all that you discuss. It's like joining some friends for a chat over a cuppa. Please may I ask.... where can I purchase trapdoor pants? I've downloaded the 'find my stool' app 😂 Thank you also for the silliness. It appeals to my sense of humour.

I’d like to pick out my own fking apple….. I need a tshirt with that on it

Jeremy photo'd me at home in Bristol here in the UK earlier this year. He was a pleasure to have visit. He was great with our stressy dog, sensitive about my fading energy levels and the images made look great too! I can't wait to see more of this project. Afaik he's still open to volunteers, so might be worth dropping a line if you're curious.

Can people with ME (not Long Covid) join the choir?

Thanks Merel and Dan!!! 💙

Really interesting and many relatable bits n pieces. I think these social digital spaces are like our noticeboards where we can converse in what feels like one way but we know it’s not because it will be seen when the other person is ready/able to see it. So we become very good at delayed gratification ❤ as a usually outgoing bubbly individual I am totally changed bcos of M.E. and social deconditionintg is a definate thing! I say if I’m unable to be who I know I am, then who am I anymore? I feel lost due to this but I know the full me, sparkling me is still there, it just rarely gets a chance to shine anymore anyway, thank you, you’ve been great ‘company’ as usual and actually the stuff other people and friends (when we get the odd intermittent chat on the phone ) talk about are often things totally unrelatable for me because they have families, jobs, busy lives so it’s mostly ‘on the surface stuff’ so not that interesting for me. Not being able to relate because you aren’t in that world of productivity makes it hard to find common ground sometimes. I like to think of ourselves as philosophers in life because we constantly end up having to observe and feedback/analyse. Deep and meaningfuls are far more interesting to me, so thank you 😊 the observations we can make of others on the ‘other side’ is fascinating.🎉

Really moving song writing and so beautifully sung and accompanied. Each one tugs the heart strings. The peril of this being that - for me - I can only listen once in a while, or I feel a bit too sad and angry. So glad we have such skilled people helping raise awareness about ME so compellingly!

My ME has blessed me with a foul mouth and sharp sense of gallows humor.

Thanks for this episode. I really enjoyed it. I used the word alien to describe how I felt looking at 'mundane' life through the windows of a taxi last week on the way to a hospital appointment. I also relate to Dov's experience of not having the energy to speak to a neighbour if you go outside. It's such a conundrum! But at the same time, craving the interaction. Living with ME requires continuous cost-benefit analysis.

A brilliant and important episode Dov and Dan, thank you!

Episode suggestion - you could interview someone who got ill at a younger age. This is what happened to me and it really disrupted my life. Didn’t go to high school but I did take classes off and on at the local community college. I feel like in some ways people get stuck psychologically at the age they got sick

On what I call Rip VanWinkle moments - I had a 6 month period where I felt much better so I tried to make some friends. When I went to gatherings, everyone was taking pictures all the time! (I don't like being in pics.) I had no idea how big that change was!

Important topic! Thank you for covering this.

Hello from the military, guys! ➕ Still finding time to watch you)

Could you do a video on finding a meaning in life please (or something around that topic)? I really struggle to rebuild meaning and purpose. I know this is different for everyone and is a very broad topic but I'm sure there will be lots of thoughts people have in common? 😊 I'd love to hear what makes other people feel like their life is worth living for. (sorry if this sounds very dark 😅)

ive been housebound for 20 years, i have know idea what the outside world is like anymore.. my wife laughs when i try to guess prices of things nowadays... i so miss ust meeting friends and doing things without having to think how it will make me feel... love your chats

This was an amazing interview. What you have both been through was so relatable. Thank you so much for this platform. I'm subscribing. God bless.

Cancerfatig here-manyFAR2FAMILIARPOINTS(daSOCIETALINCOMPREHNSNsmfho:((((-ta4pod!!

Great episode and beautiful song. Thanks!

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Lisanne needs a RUclips channel! She has a talent and loads of talented singers have gone professional after being discovered on RUclips (e.g. Justin Bieber, Gabrielle Aplin etc.)

It's also nice to see a fellow young person. It makes me feel less alone as too often I feel old and like my daily life experience is more relatable to someone a lot older (someone in their 70s who's ill and tired all the time) despite in fact being only in my 20s 😪😅 When I'm fairly functional (midday or so) and I could go out to a club or something to enrich my life from time to time, I can only ever find retirees so it's hard to find young people to relate to and form friendships with...

Nice song, thank you for sharing - it's soothing to hear our pain expressed so well and in such a beautiful voice 💔🤗

Words can’t even express how difficult it is to be a single parent with a chronic illness. I too am like Rebecca. I enjoyed this talk so much because she validates everything I have felt and am feeling everyday. I cried with her during this talk and will also work at more mindfulness and letting go. Thank you Rebecca for sharing and you will always be in my heart and thoughts as we go through this together. ❤Lisa

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Thanks Dan and Oonagh! 💙💙💙Oonagh thanks for sharing your story and for all the work you do learning and helping folks (patients and medical people) learn about long covid. Hearing you describe what it was like going back to London-ooph 💔 (It’s been 10+ years since I’ve been to NY and I miss it and wonder what it would be like to go back, for some reason my mind goes to winter in Central Park, but the memories also seem to belong to an entirely different world, almost like another planet.) Sounds really painful watching people’s baselines etc improve after chemo/radiation while you’re still dealing with all the crushing fatigue… Such a difference when medical people are intellectually curious! And so frustrating and exhausting when not only do they have no long covid/ME knowledge but they don’t care to… Love pacing as the “holy grail”!

What a great guest. Thank you for your very well expressed story Oonagh. I have to say the words ‘brain retraining’ make me cringe, but if anyone has ever received sincere and lasting benefit I will shut up. And Daniel, the best host and interviewer out there. And I mean that!

The misinformation is still so prevalent, you would think it would be a bit better in terms of awareness. I was baffled that even the doctor I saw in the Long Covid clinic at the Montreal Jewish Hospital (which I had been on the waiting list for 2 years to get in), was terrible with this too. He talked to me for all of 10 minutes, scoffed at me wanting to lie down as I am severe and bedbound, and insisted the only treatment was rehab/physio, so essentially GET. I was so ill I couldnt speak much, so my mom spoke for me. She asked if in his opinion I had Long Covid or MECFS. He said, theyre the same thing. So basically what this told me is he knew nothing about the NICE guidelines. We told him I got worse with exertion, he just replied “well if you want to get better you need to do rehab”. And said there would be no follow ups. He did say maybe I have Cushings because of my shape and obesity (thanks I guess), and ordered a blood test for that. Really poor experience, and I left angrier than ever.

Hello guys! I think about it as different seasons in life, and also what I did or thought in the previous seasons doesn't matter that much 🙂 Hang in there!

I’m dealing with this right now. Not diagnosed, although I have repeatedly shown my doctor that I meet all of the diagnostic criteria. Cutoff of long term disability, so I have had no income since March. The insurance company thinks I should be able to work full time. Now I have to fight my employer, which involves having actual “hearings” where I will be questioned about my condition. Waiting to hear about three other potential sources of disability support, but without a diagnosis of ME (I do have a FM diagnosis), it’s possible I will be denied. My doctor keeps pushing graded exercise on me. 😢

Bless all these activists fighting for people too sick to fight a medical system that has wronged us. I feel especially empathic for young people suffering. I was 38 , and have had it 30 years. It's so brutal and debilitating, very hard to imagine unless you have it. I'm flat in bed trying to muster the strength to shower. It may not happen today. We take our health for granted until we lose it.

I’m so excited to read Sally’s books with my son. He is 10 years old and loves football as well. I just ordered both her books on Amazon. Thank you so much! ❤Lisa

Squiggle has such great energy. I love discord. It’s such an easy way to communicate with so many people around the world. Daniel would you ever be interested in making a discord server for so we can all chat and share information? I think it would help a lot of people stay connected. ❤Lisa

I've just stumbled across your channel, searching for shared experiences. I'm so glad that I found you, Post-Exertional Mayonnaise (I haven't looked up your actual name yet 😂). Thank you both 🙏 This is exactly the sort of community I wanted to find. I'm struggling badly with the grief cycle. 6 years ill. Nearly two years housebound with ME and now POTS. I look forward to viewing your content 🥰 Ginny (I think I might be using my old business account 🤔) 😅😶‍🌫️

Not the biggest fan of Speight. Think he acts like a 'controlled opposition' agent. I do not like him. Weir is better. There are many in the community, who come out extremely badly of whole saga, when you follow their behavior and things they have stated. Alot of charlatans professing to have knowledge they don't and others like Speight, who professes greater ignorance, than he really does have, he hung with Spurr. Charles Shepherd (pretends to have ME, he had Zoster Encephalitis, flat out lying), Action for ME supporting pace, Ron Davis, Jen Brea (her greatest achievement was MEPedia, she has stated hEDS is ME at points, crazy). Science for ME forum isnt about ME, the dude who runs it fell ill on account of measles. I will never like Speight.

Can we put the box on wheels so we can see the world together? ❤Lisa

“IT’s A MIRACLE!!” Bahahahaha I agree with you completely on individual baselines. I struggle with that weekly trying to find some consistency in my weekly routine. I can have a “good day” which consists of maybe getting all my dishes in the dishwasher, folding a load of laundry and taking a shower. Thats a good day for me. So I try to work off of that. But then the next day If I have to go grocery shopping I will remove the shower from that day. I have many breaks. On bad days I’m completely bed bound. I get so overstimulated and overwhelmed by noise and outside stimulation that I’m completely house bound. I desire to go out, I desire to do things, I desire to be with people but the anxiety that comes with knowing how long it’s going to take for me to repair is not worth it. That can be incredibly depressing. But being bed bound for days trying to raise a 10 year old on my own is more devastating than missing a party or canceling an appointment or pushing myself trying to have some sort of spontaneity in my life. On weekends all I can do is feed my son. I don’t do anything else. The stimulus from him being home and having to be connected all the time is too exhausting for me to do anything else. And when Monday comes I rest and kind of regroup and then work off of that baseline again. But like you said it can change and even a tiny fluctuation can cause such catastrophic effects. I really enjoyed this episode. I look forward to these quiet times at night when my son is asleep and the house is dark. And I can lay and listen and feel like a had a great conversation with a friend that understands completely how I feel with no judgment or shame. I roared about your butt stool suppository!! I was actually trying to go for a short walk at my parents house the other day. They have 12 acres out in the country, wooded and trailed. I was wishing I had an inflatable bed that I could just pull a ripcord on a little pouch attached to my keychain. Everytime I got tired I could just pull that cord and whoosh a bed pops out with fresh sheets and pillow and I could lay for awhile under the trees. The hard part is how the heck do I get it back in the pouch? Hahahahaha thanks again for all your support! -Lisa ❤

Bahahahaha this is fantastic. For some reason this reminds me of a morning I had a couple years ago. I was exhausted. I had an appointment I needed to get to. I was already running very behind. I had laid out my clothes on the bed prior to a shower. I had slacks, a blouse and a light sweater. After getting dressed and finishing up in my room I thought to myself well what the hell is on my back? I happened to glance at my reflection in the mirror and my clothes hanger was sticking out of the top of my sweater. I stood there laughing so hard I thought I might pee. You could see the perfect outline of the hanger in between my shirt and my sweater. I should have left it there then maybe my doctor would have listened to me a bit better about my brain fog issues. -Lisa ❤

Glad this is resonating--let's raise some hell. Good wishes all around!

I love this poem! It makes me cry because I understand and it makes me feel less alone because you understand.