hey :) just wanted to say there’s a difference between “chronic fatigue” and ME/CFS, which is a complex neuroimmune condition that’s really stigmatized and i think labeling it as “chronic fatigue” which is a symptom of a ton of conditions vs ME/CFS sort of plays into that stigma. no hate at all!! just wanted to mention it cus it can be confusing & i think it’s very important to differentiate. “crashes” otherwise known as post exertional malaise or PEM is specific to ME/CFS and is something that people with “chronic fatigue” don’t experience, it’s solely a thing that happens in MECFS patients. (correct me if i’m wrong but i think you also have ME/CFS (i think u mentioned it before on insta) which is why i felt the need to specify in case anyone listening has fatigue as a symptom vs having diagnosed ME/CFS). sending a ton of spoons & love ❤
Yes, as someone with ME/CFS, POTS and MCAS, and who works in the capacity as an experience expert and patient representative, I'd like to support this message. And I'd like to point out why for those who don't know. ME/CFS has a decades-long history of deliberate stigmatisation, psycholisation and silencing. Just look for yourself into controversies such as the PACE trial, the case of Maeve Boothby O'Neill and CBT/GET treatment for ME. Journalist David Tuller is doing wonderful reporting on and activism around the unethical medical research and practices surrounding ME/CFS. The commonest thing is doctors trivialising the debilitating condition it as "just fatigue". Please, anyone and everyone, don't (unintentionally) contribute to the harmful narrative by calling it chronic fatigue or chronic fatigue syndrome. No criticism or hate, just a request to help the ME community get the recognition and validation it deserves and NEEDS. Because it is NOT a rare disease, due to the covid pandemic ME is very common and it is one of the most disabling illnesses out there with no diagnostics, no treatments, no cure and a poor prognosis. Most do not recover, many only get progressively worse. The quality of life of the average ME patient is worse than cancer, diabetes, MS or Parkinson's patients. And yet this condition receives very little research funding, barely any governmental support in terms of benefits or the right to access long-term care, etc. It is the same all around the world, there is no country that adequately manages ME. Yet everyday new patients fall ill with little chance of recovery. You can support us by calling it ME or ME/CFS and not chronic fatigue or chronic fatigue syndrome. ❤ Thank you for attending my TED talk 😅🫶
hi lovelies thank you so much for taking the time and care to comment all of this ❤️🩹 as I’m very new to my diagnosis, I wasn’t aware that there was a difference between saying “chronic fatigue” and ME/CFS so I first wanted to apologise for any confusion and just wanted to clarify that my doctors did diagnosis me with ME/CFS but they all consistently refer to it as just “chronic fatigue” which I think is what confused me. This made me think that you could call it that for short like me calling Endometriosis “endo” for short and Postural orthostatic tachycardia syndrome “POTS” for short. Now that I’m aware of the confusion, the stigma and the difference I will be sure to refer to it as ME/CFS from now on and in my future videos, sending you both lots of love ❣️ (I’ll pin this comment so anyone watching/reading the comments can be aware)
@@paperbacksanddaisies a lot of doctors don’t even fully understand the difference to be honest, or even really know a ton about ME/CFS which sucks but that’s what’s so great about social media honestly. i’ve learned more about it from others online than my own providers haha. i appreciate your willingness to learn too!!
i was officially diagnosed with two chronic illnesses this year and have been struggling a lot. but i stumbled upon your channel by chance and you've been such a comfort for me. thank you for making such cozy, honest videos
congrats on 2k! love your edition of Conversation with Friends! it's my last Rooney and i most definitely want to get it in the edition that you have. i think you will love Intermezzo!
Okay i definitely have to reread conversations with friends. I don’t remember the endo representation and I got my endometrioses and andometryoses (I don’t know if it’s also the English name for it 🙈) diagnosis two months ago. I’m on a special Endo birth control so that I don’t get my peroid at all but I still have symptoms 😞 Sending you love from Germany 🧡
Thank you for your answer and your tip! I feel as if I got an autograph from a star. 😊 I will pray you get well. I've been reading a book about civilisations;it says when a society is faced with a challenge, it is a response to it that undergoes a transformation into a civilisation.I assume you are confronted with a challenge, your PoTs, and that you are responding to it now via your channel in one way or another. I believe one day you morph into something like civilisation. Go on about your response!
Just found ur channel I wanna say thank u for being open about invisible illness, I'm forever grateful. I love books as well, maybe do a vid about Japanese lit? Stay save loveee❤
When you said that you're now living a much softer life because of your illness and that you've accepted where you are and moving forward accordingly. That was super helpful. It made me smile in awe, glad that you're doing this and sharing to inspire others! 🥰 If possible, tell us what you do when you have a flare/crash....what helps you?
thank you for your lovely comment 🫶🏼 I’d love to do a video on Japanese lit! I’m planning on making a video soon on recovering from a flare/crash but just remember to be gentle and kind to yourself and let yourself rest when you need ❤️🩹
yes! my first symptom I actually noticed of my POTS was vertigo, but this was only in summer when symptoms are worse, the whole room would be spinning even laying down
I too loved The Hobbit ... I did not move on to The Lord Of The Rings books ... seemed too fanciful for me. I thnk you would like The Wind In The Willows but do see if you can get one with the BEST illustrations which are by Ernest Shepard ... you will want to live there ... popping around every once in a while to have tea with Mr Badger ...
How could I forget to mention The Wind in the Willows and Winnie the Pooh also illustrated by Ernest Shepard !! I would live in those books in a heartbeat
