Jeez, what a fabulous piece of writing, and so so so important, you have absolutely summed up the thoughts and feelings that I have been working through recently after 30 years of ME.
This is a f*cking phenomenal deconstruction of the insidious mind body BS that has pervaded our care over the last 40 years. Hats off to you, brilliantly and empathetically written.
That was a difficult and hard read. Informative, personal. I feel quite emotional about it. I only hope that your narrative becomes talked about and listened to. Those of us with chronic conditions need the understanding and empathy you show. We need acknowledgement and concrete way forward from the medical profession.
I agree with your comments, unfortunately I do feel that Miranda may have created a step back in attitudes to M.E./ CFS and Long Covid. I am very disappointed.
She has such a huge following, I have enjoyed her sit coms,but after 27 years of chronic health, and all that goes with it, the roller coaster ride of being seen by a,b,c only to realise that you have spent money that you don't have and are still experiencing ridiculous comments from any NHS team you come across in my desperation to " be well, be heard, be seen".
Only now to have spent the last 9 years mostly in bed and post covid a lot of friends on their new found release after lock down have not returned to see me or get in contact.
Fortunately I know who my real friends are, my goodness, they are worth so much to me.
Feeling disgruntled.
Many blessings to you.
May we all be seen. Be heard. Believed. Healed. Cured.
I went to post this on a UK-based LC support group started by a yoga teacher who offers a Rest Repair and Recover program. I’ve read a number of “success” stories, but for as many success stories that are posted there are also people crying out “why isn’t this working for me?” and “what am I doing wrong?” Needless to say, my post was rejected based on the number of people proactively using this approach to recovery on the site.
I hope she read the entire post, because while I thought some of the writer’s tone was a patronizing, I believe there was something really important to be taken away from this piece. Mind-body, yoga, meditation, spending time in nature, being mindful can all become parts of a tool kit for coping with this horribly debilitating condition, but they are by no means a cure. We need to be reminded that there is nothing we said, did or thought that caused our condition.
Thank you for your reassuring words. I am " blaming " myself at the moment as my mental health is suffering due to my physical limitations, also childhood trauma C- PTSD, but know reading your comment brought me a message if acceptance and peace. Thank you.
I don't want to suffer, it's NOT MY fault. Blessings 🙏 💖
You have so eloquently expressed what I struggle to explain to those around me. Your article will be shared to all the helpful folk trying to recommend this book, thank you 😊
This is brilliant, thank you for wading through the book so we don't have to, and for being so clear on why it is so damaging for those of us living with ME/CFS every day. I hope she gets to read it!
Wow! This so eloquently echoes how so many of us feel. On the one hand, from a human perspective, I feel for Miranda. Nobody should be gaslit and/ignored by the medical profession- it is something all (or at least most) people with M.E. have experienced at some point. I also wouldn’t wish M.E (or other chronic illnesses) onto anyone! I’m 14 years into my own M.E journey from hell, & have often said replicating the symptoms would be a very effective method of torture!
I have chosen not to read (or listen to) Miranda’s book. I have already read & heard enough, via snippets shared on social media & Miranda’s video posts, to know I really don’t want to endure another ‘pseudoscience is the answer’ experience! My energy resources are too limited & valuable to waste.
I hope Miranda read this, & I hope she starts to truly understand why many people are angry; more are disappointed; & most are worried about the consequences for those who choose to take an experimental journey down the same rabbit hole, but who will be severely harmed in the long term as a result.
This was really really spectacular. It really hit on all the things we’re told about any of these illnesses, and of course reinforced by “society”, friends, and loved ones parroting this crap at us. It just feels like a leap backwards.
That being said, I could go for hanging out with the Goblin King. I could meet worms, fireys, talking doors, Ludo, Sir Didymus, False Alarms…it would be so fun.
Jeez, what a fabulous piece of writing, and so so so important, you have absolutely summed up the thoughts and feelings that I have been working through recently after 30 years of ME.
Agreed! This was excellent and I believe will help many patients (and hopefully inspire others to think about how they talk about ME).
This is a f*cking phenomenal deconstruction of the insidious mind body BS that has pervaded our care over the last 40 years. Hats off to you, brilliantly and empathetically written.
Brilliant. Thank you so much. 🙏🏻
That was a difficult and hard read. Informative, personal. I feel quite emotional about it. I only hope that your narrative becomes talked about and listened to. Those of us with chronic conditions need the understanding and empathy you show. We need acknowledgement and concrete way forward from the medical profession.
I agree with your comments, unfortunately I do feel that Miranda may have created a step back in attitudes to M.E./ CFS and Long Covid. I am very disappointed.
She has such a huge following, I have enjoyed her sit coms,but after 27 years of chronic health, and all that goes with it, the roller coaster ride of being seen by a,b,c only to realise that you have spent money that you don't have and are still experiencing ridiculous comments from any NHS team you come across in my desperation to " be well, be heard, be seen".
Only now to have spent the last 9 years mostly in bed and post covid a lot of friends on their new found release after lock down have not returned to see me or get in contact.
Fortunately I know who my real friends are, my goodness, they are worth so much to me.
Feeling disgruntled.
Many blessings to you.
May we all be seen. Be heard. Believed. Healed. Cured.
🙏💙
I went to post this on a UK-based LC support group started by a yoga teacher who offers a Rest Repair and Recover program. I’ve read a number of “success” stories, but for as many success stories that are posted there are also people crying out “why isn’t this working for me?” and “what am I doing wrong?” Needless to say, my post was rejected based on the number of people proactively using this approach to recovery on the site.
I hope she read the entire post, because while I thought some of the writer’s tone was a patronizing, I believe there was something really important to be taken away from this piece. Mind-body, yoga, meditation, spending time in nature, being mindful can all become parts of a tool kit for coping with this horribly debilitating condition, but they are by no means a cure. We need to be reminded that there is nothing we said, did or thought that caused our condition.
Thank you for your reassuring words. I am " blaming " myself at the moment as my mental health is suffering due to my physical limitations, also childhood trauma C- PTSD, but know reading your comment brought me a message if acceptance and peace. Thank you.
I don't want to suffer, it's NOT MY fault. Blessings 🙏 💖
Thank you for your efforts of laying out the issues with the approach offered. ME is a biological disease like so many others waiting for a cure.
My litmus test is if the suggestions to "cure" ME would look ludicrous if suggested for cancer, it is not worth considering.
As we learn more about the biology, including the likelihood of ongoing viral assault, these kind of "blame the patient" attitudes should stop.
Aiming for a better future...
You have so eloquently expressed what I struggle to explain to those around me. Your article will be shared to all the helpful folk trying to recommend this book, thank you 😊
Thank you for writing this, well done.
Thank you for this. Terribly important for so many people. Much appreciated…
This is absolutely brilliant 💐💗👏💗 Thank you so much. I hope it gets a really wide circulation.
What a beautiful, respectful, wise response!! ❤️
This is brilliant, thank you for wading through the book so we don't have to, and for being so clear on why it is so damaging for those of us living with ME/CFS every day. I hope she gets to read it!
Wow! This so eloquently echoes how so many of us feel. On the one hand, from a human perspective, I feel for Miranda. Nobody should be gaslit and/ignored by the medical profession- it is something all (or at least most) people with M.E. have experienced at some point. I also wouldn’t wish M.E (or other chronic illnesses) onto anyone! I’m 14 years into my own M.E journey from hell, & have often said replicating the symptoms would be a very effective method of torture!
I have chosen not to read (or listen to) Miranda’s book. I have already read & heard enough, via snippets shared on social media & Miranda’s video posts, to know I really don’t want to endure another ‘pseudoscience is the answer’ experience! My energy resources are too limited & valuable to waste.
I hope Miranda read this, & I hope she starts to truly understand why many people are angry; more are disappointed; & most are worried about the consequences for those who choose to take an experimental journey down the same rabbit hole, but who will be severely harmed in the long term as a result.
What an astonishing disservice Miranda is doing to the community.
Thank you so much for countering it with this letter.
A man with M.E. Who’d have thunk it?!
This was really really spectacular. It really hit on all the things we’re told about any of these illnesses, and of course reinforced by “society”, friends, and loved ones parroting this crap at us. It just feels like a leap backwards.
That being said, I could go for hanging out with the Goblin King. I could meet worms, fireys, talking doors, Ludo, Sir Didymus, False Alarms…it would be so fun.
Thankyou just Thankyou