Many of us tried to sound the alarm, both online and IRL, in the early months of the pandemic. We were, predictably, largely ignored. Many of us have grieved for those with Long C, even as we welcomed new members into the ME community. It’s hard to celebrate the recent exposure, interest, and revitalised research for our illness, when we know how much it costs each and every person who has LC and meets the criteria for ME, whether diagnosed or not. I am so sorry that you’re here with us, and so glad we can be there for you and each other!
This is a beautiful article about an amazing group of people who have been abandoned and left for dead. And somehow they manage to be amazing human beings despite immense suffering.
I've only just started my ME journey. I suspect I've had it for a while but had never experienced PEM properly like I did approx 6 weeks ago when my body completely crashed. Mine's probably a reactivation of Epstein Barr, and not related to Covid.
I'm sorry you're going through all this too.
As a former writer who appreciates good writing, I just wanted to say that you write beautifully.
I’m sorry you’re going through this. Thank you for the kind words. I’m in a deep PEM crash and it’s the first thing that made me smile today. Take good care and be well.
I'm so sorry you find yourself in the club that no-one ever wants to join. I've been a member for 43 years so far and until I found patient groups in the middle 2000s I honestly thought I was the only one. Now I know there are so many more than anyone knows about.
The NHS and big pharma don't give a fig about us, they never have, so it's up to us to keep trying different supplements, reusing old drugs at microdoses and anything else we can think of to try to even improve by 1%. We have to fight for research and we have to fight for each other before the system kills us off by neglect or starvation.
It's a sad state of affairs, but that's how it is. We can write from our beds, sign petitions and scream silently at the establishment or we can lie down and do nothing. Nobody except us is going to fight for us.
Thank you! I have suffered ME/CFS since I caught a virus at the age of 23 and never recovered. I'll turn 58 next week. I'm typing this from my bed. Keep writing. I have subscribed and look forward to reading more. My favorite part -- "Recognition, Not Surprise." I'm sorry you have joined this club but I'm glad you're here
Thank you for the kind words, Liz. I’m sorry you’ve been in the club for so long. I hope today has been as good as possible for you. Take good care of yourself and be well.
Fred - you took the words right out of my mouth. I can't thank you enough for this absolutely gorgeous homage to the ME/CFS community. Sending you, my fellow LC sufferer/survivor, care and strength as you continue to navigate your journey.
Thank you on behalf of my wife who does <edit> [not] DOES now</edit> have a substack account but has been living in the middle of it for 30+ years. It was initially called ’yuppie’ flu in the early 1980s. I suspect that it is only noticeable where health and welfare allows people to survive it outside of susbsistence manual economic realities. It kills quicker in less sophisticated economies.. in the real grind, not the techbro fantasy grind. I suspect Victorian ladies diagnosed with neureasthenia also had it.
I have been living with this as a serious illness which was debilitating when I was 16. I am now 76. It has often been a lonely walk through life and I am grateful for the parents who loved me unconditionally and believed me even when the doctors didn't. I am grateful for the double dose of faith, hope, and silliness that the Lord poured into me. I am extremely grateful for the resilience and persistence he has allowed me. I laughed when I read the phrase about "My Little Life". When I was a little girl -- about four or five -- I used to tell my father that "life is just too big!" I had no idea what I was talking about then, that I was foretelling a lifetime of living My Little Life in a Very Big World where others get to live what I consider "largely". I have to laugh at the way life unfolded, but I have weathered hospitalizations, multiple surgeries, various treatments, infusions, and medical trials, and a devastating divorce because my husband of 33 years decided that I was a world class fake and fraud. But I am here to say loud and proud "I live a Very Small Life and I am very proud of it and of the places where I do and can make a difference." God gives me opportunities so shine in My Little Way and those of you who recognize what it means to fully live and enriched and enriching Little Life boost me and cheer me on, giving me mercy, grace, and inspiration to Be Still and wait for tomorrow so I can hopefully put One Foot Forward, at least for that day. That cheers my heart and keeps me from self-pity and overdoing and beating up myself, and criticizing what I can't do instead of CELEBRATING what I CAN DO.
Bless you all who walk this path with me! I love the companionship and at times have truly thirsted for it, and for you. Speak up. Share your stories. Share your lives! It makes my life so much richer. God bless you.
This is so beautifully written and such a parallel to my own experiences with Long Covid and ME/CFS- the gratitude of discovering I wasn't alone; the fear and grief that the named experiences the community gave me came with no answers for any of us; the humbling awe of being welcomed into a community so rich with quiet resources, resilience, and support; the unexpected beauties in a small(er than I/we crave) life.
Thank you for acknowledging and honouring the long history of ‘small lives’ and the knowledges many of us carry and that have existed for many decades and more. There is something so valuable about acknowledging and adding to community rather than re-inscribing us as absence before long covid - ME for 41 years.
Beautifully written. Powerful message. Thank you, from someone who has been sick with ME for decades. I’ve love to be in touch directly, if you are available. Are you on x/Twitter or bluesky?
The most unexpected and fascinating thing about this situation is that no doctor or researcher ever looked into the incident that the 1988 Holmes Chronic Fatigue Syndrome was based on.
It's all about raising awareness to get donations. Nothing about actual research.
That is exactly what I was about to say. 33 years with this disease for myself, and so much suffering for so many people for so many years, all over the world. As terrible as covid and Long Covid are, at least they have brought new focus, funding and research science to figure out the causes, treatments and maybe even (one day) a cure for these terrible, energy-limiting conditions.
Many of us tried to sound the alarm, both online and IRL, in the early months of the pandemic. We were, predictably, largely ignored. Many of us have grieved for those with Long C, even as we welcomed new members into the ME community. It’s hard to celebrate the recent exposure, interest, and revitalised research for our illness, when we know how much it costs each and every person who has LC and meets the criteria for ME, whether diagnosed or not. I am so sorry that you’re here with us, and so glad we can be there for you and each other!
This is a beautiful article about an amazing group of people who have been abandoned and left for dead. And somehow they manage to be amazing human beings despite immense suffering.
I've only just started my ME journey. I suspect I've had it for a while but had never experienced PEM properly like I did approx 6 weeks ago when my body completely crashed. Mine's probably a reactivation of Epstein Barr, and not related to Covid.
I'm sorry you're going through all this too.
As a former writer who appreciates good writing, I just wanted to say that you write beautifully.
I’m sorry you’re going through this. Thank you for the kind words. I’m in a deep PEM crash and it’s the first thing that made me smile today. Take good care and be well.
I'm so sorry you find yourself in the club that no-one ever wants to join. I've been a member for 43 years so far and until I found patient groups in the middle 2000s I honestly thought I was the only one. Now I know there are so many more than anyone knows about.
The NHS and big pharma don't give a fig about us, they never have, so it's up to us to keep trying different supplements, reusing old drugs at microdoses and anything else we can think of to try to even improve by 1%. We have to fight for research and we have to fight for each other before the system kills us off by neglect or starvation.
It's a sad state of affairs, but that's how it is. We can write from our beds, sign petitions and scream silently at the establishment or we can lie down and do nothing. Nobody except us is going to fight for us.
Thank you! I have suffered ME/CFS since I caught a virus at the age of 23 and never recovered. I'll turn 58 next week. I'm typing this from my bed. Keep writing. I have subscribed and look forward to reading more. My favorite part -- "Recognition, Not Surprise." I'm sorry you have joined this club but I'm glad you're here
Thank you for the kind words, Liz. I’m sorry you’ve been in the club for so long. I hope today has been as good as possible for you. Take good care of yourself and be well.
Fred - you took the words right out of my mouth. I can't thank you enough for this absolutely gorgeous homage to the ME/CFS community. Sending you, my fellow LC sufferer/survivor, care and strength as you continue to navigate your journey.
Thank you on behalf of my wife who does <edit> [not] DOES now</edit> have a substack account but has been living in the middle of it for 30+ years. It was initially called ’yuppie’ flu in the early 1980s. I suspect that it is only noticeable where health and welfare allows people to survive it outside of susbsistence manual economic realities. It kills quicker in less sophisticated economies.. in the real grind, not the techbro fantasy grind. I suspect Victorian ladies diagnosed with neureasthenia also had it.
I have been living with this as a serious illness which was debilitating when I was 16. I am now 76. It has often been a lonely walk through life and I am grateful for the parents who loved me unconditionally and believed me even when the doctors didn't. I am grateful for the double dose of faith, hope, and silliness that the Lord poured into me. I am extremely grateful for the resilience and persistence he has allowed me. I laughed when I read the phrase about "My Little Life". When I was a little girl -- about four or five -- I used to tell my father that "life is just too big!" I had no idea what I was talking about then, that I was foretelling a lifetime of living My Little Life in a Very Big World where others get to live what I consider "largely". I have to laugh at the way life unfolded, but I have weathered hospitalizations, multiple surgeries, various treatments, infusions, and medical trials, and a devastating divorce because my husband of 33 years decided that I was a world class fake and fraud. But I am here to say loud and proud "I live a Very Small Life and I am very proud of it and of the places where I do and can make a difference." God gives me opportunities so shine in My Little Way and those of you who recognize what it means to fully live and enriched and enriching Little Life boost me and cheer me on, giving me mercy, grace, and inspiration to Be Still and wait for tomorrow so I can hopefully put One Foot Forward, at least for that day. That cheers my heart and keeps me from self-pity and overdoing and beating up myself, and criticizing what I can't do instead of CELEBRATING what I CAN DO.
Bless you all who walk this path with me! I love the companionship and at times have truly thirsted for it, and for you. Speak up. Share your stories. Share your lives! It makes my life so much richer. God bless you.
This is so beautifully written and such a parallel to my own experiences with Long Covid and ME/CFS- the gratitude of discovering I wasn't alone; the fear and grief that the named experiences the community gave me came with no answers for any of us; the humbling awe of being welcomed into a community so rich with quiet resources, resilience, and support; the unexpected beauties in a small(er than I/we crave) life.
Thank you for acknowledging and honouring the long history of ‘small lives’ and the knowledges many of us carry and that have existed for many decades and more. There is something so valuable about acknowledging and adding to community rather than re-inscribing us as absence before long covid - ME for 41 years.
Thank you for fighting the fight for so many of us before we arrived, Janet. I hope today is a good day.
Beautifully written. Powerful message. Thank you, from someone who has been sick with ME for decades. I’ve love to be in touch directly, if you are available. Are you on x/Twitter or bluesky?
Thank you. I am, @darthfoo and @darthfoo@bsky.social.
i left you a message on bluesky. you are a beautiful writer.
The most unexpected and fascinating thing about this situation is that no doctor or researcher ever looked into the incident that the 1988 Holmes Chronic Fatigue Syndrome was based on.
It's all about raising awareness to get donations. Nothing about actual research.
That is exactly what I was about to say. 33 years with this disease for myself, and so much suffering for so many people for so many years, all over the world. As terrible as covid and Long Covid are, at least they have brought new focus, funding and research science to figure out the causes, treatments and maybe even (one day) a cure for these terrible, energy-limiting conditions.