So impossibly hard to make any kind of meaningful comment here. Words just aren’t enough. The suffering that all of you endure is something I have but a small insight into. And I know from our personal experience that emotions of Grief, sorrow, anger can drag you down to dark dark places. You are all such beautiful amazing humans. I can but hope that all of your suffering some how comes to an end. Send our love to Sophia. She like her mother is a remarkable young woman who deserves a life. ❤️
Thank you so much for sharing and I am so very sorry to hear about Sophia. Our daughter has been bed bound with severe, and at times very severe ME for 10 years with a decline in her health before this for a few years. There is such a lack of knowledge and misunderstanding regarding the condition. As a nurse by background (retired due to caring role now), I have been horrified by the lack of care and research into this condition. I’m so grateful that this cause is being taken up and grateful for you for sharing Sophia’s story, as others experiences, however terrible, let us as carers and sufferers know that we are not alone. So thank you again and I wish the very best for Sophia.
Thank you to Karen, Sophia’s mum, for sharing a very personal experience.
I lie here selfishly hoping this doesn’t become my reality I am ashamed to say.
I have severe ME, I am bed bound, but able to get up to the bathroom most of the time. I know how much my life has changed in particular these past two years, and especially the past months as a result of trying to get a diagnosis & treatment for severe stomach pain with or without eating.
MCAS is most likely the culprit and possibly MALS from a compressed coeliac artery. Waiting for another consultation, private obviously.
I was admitted to hospital mid October last year for gut rest and as a preventative measure from malnutrition.
The 7 gastroenterologists I saw in my 16 day stay would not comply with my GP’s request. They saw a woman who still had a healthy BMI. Despite showing them photographic evidence of my reactions to their prescribed diet their final diagnosis was severe constipation. MCAS was never discussed.
My first thought whilst reading your story was why is Sophia not receiving parental nutrition via a PEG or TPN?
This would be the obvious course of action to ensure Sophia got adequate nutrition.
I then have to remind myself of the young women last year who struggled and still do, to get tube fed including my own experience which is very far from Sophia’s.
It is evident that the subject of nutrition amongst the severe and very severe needs to be addressed with urgency. It needs to be dealt with before the patient becomes dangerously underweight and malnourished. It needs to be dealt with before the patient can no longer be transferred to hospital as I suspect is Sophia’s predicament.
Hence, preventative measures must be looked at rather than reacting to a crisis which is seldom done anyhow as Maeve Boothby O’Neills inquest revealed.
I had always thought if my ME gets to the stage where I can’t physically eat for whatever reason that I’d refuse a feeding tube. Never did I think one wouldn’t be offered.
To Karen & Sophia I send you my love, thoughts & prayers for the ability to continue breathing in the most courageous way you both have done thus far 💙
Thank you so much, Karen, for sharing this glimpse into Sophia's lived experience of Very Severe ME. Such a long time to be dealing with this with no treatment pathway and so much misunderstanding. Hoping that in 2025 we will see the start of significant change for people with Severe and Very Severe ME. This group in particular have been excluded from research, advocacy and journalism. Thank you to #ThereForME and allies for all you are doing to highlight this and to fight for change.
Utterly terrifying and devastating. I'm so very sorry that you are both going through such hardship and pain. Thank you for the clear and concise description of this terrible disease 🙌
I am so sorry that you are going through this, I have moderate ME and I simply can't imagine how terrifying and painful it must be for Sophia, and for you. Thank you for sharing your story, and for Sophia's sake, and all those who are dealing with Severe and Very Severe ME especially, I hope we can find a cure, or at least a reliable treatment soon.
Waiting for confirmation here if I have ME or not. Waiting list is about 18 months GP said. I started with mild symptoms 17 years ago. Went to severe briefly last year after ended up in ICU with anaphylactic reaction to anaesthetic. Back to moderate now based on classifications read. No one believed me about the fatigue being debilitating and no GP believes my experience of chronic fatigue either. I try to not let anxiety take over as a real concern that might end up in this situation whatever it is that I do or do not get diagnosed with. Such care and consideration you show your daughter is heartwarming to hear.
Thank you & Sophia for sharing your story....it's absolutely devastating & I'm so sorry this is happening. Hoping that a treatment is found soon so that we can get back to our lives before ME.
it's into detail a deja-vu of how I took care of my wife. It is pure hell and unimaginable to anyone who has not seen or experienced this in the slightest degree.
That's why it's so important to share these experiences and to continue to do so.
Kindly convey my love and best wishes to Karen (the name of my wife as well...) and Sophia 🙏
I'm glad that you found the fortitude to write about this. It's so important that many stories of how people have to live are shared so that the perception of ME can be changed.
I am bereft reading this, but it pales in comparison I’m sure to what you and Sophia feel. Thank you for sharing the daily realities of very severe ME. It’s important that people see and understand this.
Thanks so much for posting this peak into Sophia’s life with very severe ME. It is devastating & a Richter scale of difference from other ME experiences.
This is why we fight so hard for research funding & recognition.
Thank you for sharing this. This story is beautifully and heartbreakingly told, and much needed. These extreme experiences need to understood. It also puts things in perspective for those of us with moderate ME.
So impossibly hard to make any kind of meaningful comment here. Words just aren’t enough. The suffering that all of you endure is something I have but a small insight into. And I know from our personal experience that emotions of Grief, sorrow, anger can drag you down to dark dark places. You are all such beautiful amazing humans. I can but hope that all of your suffering some how comes to an end. Send our love to Sophia. She like her mother is a remarkable young woman who deserves a life. ❤️
Thank you so much for sharing and I am so very sorry to hear about Sophia. Our daughter has been bed bound with severe, and at times very severe ME for 10 years with a decline in her health before this for a few years. There is such a lack of knowledge and misunderstanding regarding the condition. As a nurse by background (retired due to caring role now), I have been horrified by the lack of care and research into this condition. I’m so grateful that this cause is being taken up and grateful for you for sharing Sophia’s story, as others experiences, however terrible, let us as carers and sufferers know that we are not alone. So thank you again and I wish the very best for Sophia.
Thank you to Karen, Sophia’s mum, for sharing a very personal experience.
I lie here selfishly hoping this doesn’t become my reality I am ashamed to say.
I have severe ME, I am bed bound, but able to get up to the bathroom most of the time. I know how much my life has changed in particular these past two years, and especially the past months as a result of trying to get a diagnosis & treatment for severe stomach pain with or without eating.
MCAS is most likely the culprit and possibly MALS from a compressed coeliac artery. Waiting for another consultation, private obviously.
I was admitted to hospital mid October last year for gut rest and as a preventative measure from malnutrition.
The 7 gastroenterologists I saw in my 16 day stay would not comply with my GP’s request. They saw a woman who still had a healthy BMI. Despite showing them photographic evidence of my reactions to their prescribed diet their final diagnosis was severe constipation. MCAS was never discussed.
My first thought whilst reading your story was why is Sophia not receiving parental nutrition via a PEG or TPN?
This would be the obvious course of action to ensure Sophia got adequate nutrition.
I then have to remind myself of the young women last year who struggled and still do, to get tube fed including my own experience which is very far from Sophia’s.
It is evident that the subject of nutrition amongst the severe and very severe needs to be addressed with urgency. It needs to be dealt with before the patient becomes dangerously underweight and malnourished. It needs to be dealt with before the patient can no longer be transferred to hospital as I suspect is Sophia’s predicament.
Hence, preventative measures must be looked at rather than reacting to a crisis which is seldom done anyhow as Maeve Boothby O’Neills inquest revealed.
I had always thought if my ME gets to the stage where I can’t physically eat for whatever reason that I’d refuse a feeding tube. Never did I think one wouldn’t be offered.
To Karen & Sophia I send you my love, thoughts & prayers for the ability to continue breathing in the most courageous way you both have done thus far 💙
Thank you so much, Karen, for sharing this glimpse into Sophia's lived experience of Very Severe ME. Such a long time to be dealing with this with no treatment pathway and so much misunderstanding. Hoping that in 2025 we will see the start of significant change for people with Severe and Very Severe ME. This group in particular have been excluded from research, advocacy and journalism. Thank you to #ThereForME and allies for all you are doing to highlight this and to fight for change.
Utterly terrifying and devastating. I'm so very sorry that you are both going through such hardship and pain. Thank you for the clear and concise description of this terrible disease 🙌
I am so sorry that you are going through this, I have moderate ME and I simply can't imagine how terrifying and painful it must be for Sophia, and for you. Thank you for sharing your story, and for Sophia's sake, and all those who are dealing with Severe and Very Severe ME especially, I hope we can find a cure, or at least a reliable treatment soon.
One of the #millionsmissing … If ME/CFS were solved, we would know so much more about every disease and recovery process.
Thank you for sharing this and giving much needed insight to the deeper extent of this devastating disease.
Waiting for confirmation here if I have ME or not. Waiting list is about 18 months GP said. I started with mild symptoms 17 years ago. Went to severe briefly last year after ended up in ICU with anaphylactic reaction to anaesthetic. Back to moderate now based on classifications read. No one believed me about the fatigue being debilitating and no GP believes my experience of chronic fatigue either. I try to not let anxiety take over as a real concern that might end up in this situation whatever it is that I do or do not get diagnosed with. Such care and consideration you show your daughter is heartwarming to hear.
Thank you & Sophia for sharing your story....it's absolutely devastating & I'm so sorry this is happening. Hoping that a treatment is found soon so that we can get back to our lives before ME.
it's into detail a deja-vu of how I took care of my wife. It is pure hell and unimaginable to anyone who has not seen or experienced this in the slightest degree.
That's why it's so important to share these experiences and to continue to do so.
Kindly convey my love and best wishes to Karen (the name of my wife as well...) and Sophia 🙏
I'm glad that you found the fortitude to write about this. It's so important that many stories of how people have to live are shared so that the perception of ME can be changed.
I am bereft reading this, but it pales in comparison I’m sure to what you and Sophia feel. Thank you for sharing the daily realities of very severe ME. It’s important that people see and understand this.
Thanks so much for posting this peak into Sophia’s life with very severe ME. It is devastating & a Richter scale of difference from other ME experiences.
This is why we fight so hard for research funding & recognition.
Thank you for sharing this. This story is beautifully and heartbreakingly told, and much needed. These extreme experiences need to understood. It also puts things in perspective for those of us with moderate ME.
My heart goes out to both of you! You are both heroines!