Thanks for sharing this experience. I have moderate MECFS and aware of how a) 'lucky' I am to be so and b) know that others aren't. NHS must do better!
Absolutely spot on. And the other nightmare I've experienced during hospital stays over the past few years, is that they're putting severe dementia patients on the wards along with everyone else. My last stay was especially hellish and the elderly ladies, both in the late stages of dementia, screamed, shouted, howled, & swore, 24/7. My nervous system was overwhelmed and symptoms went wild, and when I told the nursing staff that I was struggling, they wanted to give me more and more meds to try and calm my symptoms, when what I needed was absolute quiet. Even headphones didn't help. I complained because other patients on the wards I was on were crying out and begging these ladies to keep quiet, and so the cacophony of noise was crazy. I was very, very ill, but discharged myself out of fear of being put into a full-blown relapse. 😕😢😠
While I am well aware that there is no ‘cure’ or approved treatment for ME/CFS, it still concerns me deeply that no mitigating medications or therapies are being offered by the NHS. There are certain practices like massage (e.g. Perrin method) which can help, IV saline, and drugs like mast-cell stabilisers, circulatory signalling drugs, and muscle-strength drugs which can help. Why? ME/CFS is at least in part a disorder of fluid dynamics, and the only recourse for a patient with no meaningful medical help is to lie still, which further exacerbates the stagnation of blood and lymph, which are already compromised due to collagen damage from the immune system overreaction at the time of the initial infection, trauma, or other ‘index event’ which triggered the ME. Put simply, the tubes in the body and brain stop working properly, and cellular waste accumulates at the same time oxygenation of the brain and muscles is compromised. In a slightly chicken-or-the-egg offshoot to this idea, Neuroscientist and Rehabilitation Innovator in Post-Viral Illness Dr David Putrino’s primary research focuses on vascular dysfunction, microclots, autonomic nervous system dysregulation, and immune activation, all of which can indirectly impact collagen-rich structures.
For example, his collaboration with the PolyBio Research Foundation investigates platelet hyperactivation and fibrin microclots, which may impair oxygen delivery and tissue repair. While this doesn’t directly target collagen, chronic hypoxia and inflammation can degrade extracellular matrix components, including collagen.
This might get to the mechanics of what is wrong, even if we do not know the molecular or genetic trigger yet.
I had an exchange with Dr Naviaux, author of papers on the CELL DANGER RESPONSE in diseases like ME/CFS all the way in San Diego, California. He said the only clinic he knew making progress with sufferers was the Centre For Complex Diseases in Mountain View, California. Their team includes physicians who are active members of the U.S. ME/CFS Clinical Coalition and contributors to consensus guidelines published in the Mayo Clinic Proceedings. The clinic focuses on uncovering immune, metabolic, and infectious contributors to chronic illness, using advanced diagnostics and tailored treatment plans that may include antivirals, immunomodulators, nutritional therapy, and lifestyle interventions. … Still, for someone stuck in the UK, the protocols offered by Dr Claire Taylor and Dr Sanjay Gupta can help to restore function over time. If their help brought enough improvement to get on a plane, I would move heaven and earth to get help abroad. Waiting for the NHS to help will do nothing, sadly. It has proved itself to be a rotten organisation from the top down.
Thank you for writing this, I appreciate it won't have been easy. It really resonates with me as a carer for my son who has extremely severe post-Covid ME/CFS. Many of the measures you list in Alice's care are ones we also have adopted. Others include sending laundry out, no microwave or vacuum cleaner use. I hope more people read this and start to gain an understanding.
I had very severe ME for a long while where I was stuck in complete silence and darkness. One of the main factors that helped me get better was figuring out that I was taking damage from airborne factors that had no smell. It wasn't until I got a device that measured VOC pollution that I started to make some progress. Many chemicals can be very sneaky and completely odorless and yet even more harmful than scented ones.
Just a heads-up, as you mentioned you are trying to shield your sister from air pollutants. I'd recommend the Atmotube, which I've found to be the most reliable and convenient.
A one week admission put me in a blacked out cabin (converted storage shed) for a year without a toilet or kitchen in my parents backyard. I wasn't eating bar forcing myself bone broth some days. I could rarely make it to the house bathroom. I fell to my hands and knees in agony holding back tears that would cause more PEM, many times praying I would not wake up. My family could not understand why I would not go back to hospital. I was down to 84lbs when I was able to start eating a little more again, no one had seen me in a long time as I managed short outings with sunglasses, ice hat, ear plugs, cane, a fancy coffee in the car with my sister once a month was life. She dropped a spoon the draining board and I burst into tears as the pain reverberates around me, her motion making me ill. She became my champion for care too. Some friends and family that seen me for minutes complimented me on my weight loss. While I nauseously smiled as their voice and body motions made me dizzy, unable to share my thoughts on how warped their minds were around health that oh yeah you're sick but atleast ya lost the weight. People have no idea the hell hospital is right now. I even had to discharged after 2 days in a mental hospital because they had a 50" flats screen on highest volume, flashing lights from it reflected in my room. I was judged harshly for not joining the "social corner." I couldn't eat in the canteen with all the clattering of trays scraping along metal bars, cutlery clinking, chewing, talking, I grabbed a banana and returned to my room. They refused to feed me in my room because of a teenage eating disorder. Only one nurse snook me in dinners. But it all could have been avoided when I first gave the psychiatrist and her assistant the health guidelines for M.E.patients at the time from M.E. Ireland sent me. The psychiatrist threw it back on the bed to me and said we're going digital. I didn't have the cognition to say put in my file that you refuse the deal with a person with severe ME.
Thanks for sharing this experience. I have moderate MECFS and aware of how a) 'lucky' I am to be so and b) know that others aren't. NHS must do better!
Absolutely spot on. And the other nightmare I've experienced during hospital stays over the past few years, is that they're putting severe dementia patients on the wards along with everyone else. My last stay was especially hellish and the elderly ladies, both in the late stages of dementia, screamed, shouted, howled, & swore, 24/7. My nervous system was overwhelmed and symptoms went wild, and when I told the nursing staff that I was struggling, they wanted to give me more and more meds to try and calm my symptoms, when what I needed was absolute quiet. Even headphones didn't help. I complained because other patients on the wards I was on were crying out and begging these ladies to keep quiet, and so the cacophony of noise was crazy. I was very, very ill, but discharged myself out of fear of being put into a full-blown relapse. 😕😢😠
While I am well aware that there is no ‘cure’ or approved treatment for ME/CFS, it still concerns me deeply that no mitigating medications or therapies are being offered by the NHS. There are certain practices like massage (e.g. Perrin method) which can help, IV saline, and drugs like mast-cell stabilisers, circulatory signalling drugs, and muscle-strength drugs which can help. Why? ME/CFS is at least in part a disorder of fluid dynamics, and the only recourse for a patient with no meaningful medical help is to lie still, which further exacerbates the stagnation of blood and lymph, which are already compromised due to collagen damage from the immune system overreaction at the time of the initial infection, trauma, or other ‘index event’ which triggered the ME. Put simply, the tubes in the body and brain stop working properly, and cellular waste accumulates at the same time oxygenation of the brain and muscles is compromised. In a slightly chicken-or-the-egg offshoot to this idea, Neuroscientist and Rehabilitation Innovator in Post-Viral Illness Dr David Putrino’s primary research focuses on vascular dysfunction, microclots, autonomic nervous system dysregulation, and immune activation, all of which can indirectly impact collagen-rich structures.
For example, his collaboration with the PolyBio Research Foundation investigates platelet hyperactivation and fibrin microclots, which may impair oxygen delivery and tissue repair. While this doesn’t directly target collagen, chronic hypoxia and inflammation can degrade extracellular matrix components, including collagen.
This might get to the mechanics of what is wrong, even if we do not know the molecular or genetic trigger yet.
I had an exchange with Dr Naviaux, author of papers on the CELL DANGER RESPONSE in diseases like ME/CFS all the way in San Diego, California. He said the only clinic he knew making progress with sufferers was the Centre For Complex Diseases in Mountain View, California. Their team includes physicians who are active members of the U.S. ME/CFS Clinical Coalition and contributors to consensus guidelines published in the Mayo Clinic Proceedings. The clinic focuses on uncovering immune, metabolic, and infectious contributors to chronic illness, using advanced diagnostics and tailored treatment plans that may include antivirals, immunomodulators, nutritional therapy, and lifestyle interventions. … Still, for someone stuck in the UK, the protocols offered by Dr Claire Taylor and Dr Sanjay Gupta can help to restore function over time. If their help brought enough improvement to get on a plane, I would move heaven and earth to get help abroad. Waiting for the NHS to help will do nothing, sadly. It has proved itself to be a rotten organisation from the top down.
Thank you for writing this, I appreciate it won't have been easy. It really resonates with me as a carer for my son who has extremely severe post-Covid ME/CFS. Many of the measures you list in Alice's care are ones we also have adopted. Others include sending laundry out, no microwave or vacuum cleaner use. I hope more people read this and start to gain an understanding.
I had very severe ME for a long while where I was stuck in complete silence and darkness. One of the main factors that helped me get better was figuring out that I was taking damage from airborne factors that had no smell. It wasn't until I got a device that measured VOC pollution that I started to make some progress. Many chemicals can be very sneaky and completely odorless and yet even more harmful than scented ones.
Just a heads-up, as you mentioned you are trying to shield your sister from air pollutants. I'd recommend the Atmotube, which I've found to be the most reliable and convenient.
A one week admission put me in a blacked out cabin (converted storage shed) for a year without a toilet or kitchen in my parents backyard. I wasn't eating bar forcing myself bone broth some days. I could rarely make it to the house bathroom. I fell to my hands and knees in agony holding back tears that would cause more PEM, many times praying I would not wake up. My family could not understand why I would not go back to hospital. I was down to 84lbs when I was able to start eating a little more again, no one had seen me in a long time as I managed short outings with sunglasses, ice hat, ear plugs, cane, a fancy coffee in the car with my sister once a month was life. She dropped a spoon the draining board and I burst into tears as the pain reverberates around me, her motion making me ill. She became my champion for care too. Some friends and family that seen me for minutes complimented me on my weight loss. While I nauseously smiled as their voice and body motions made me dizzy, unable to share my thoughts on how warped their minds were around health that oh yeah you're sick but atleast ya lost the weight. People have no idea the hell hospital is right now. I even had to discharged after 2 days in a mental hospital because they had a 50" flats screen on highest volume, flashing lights from it reflected in my room. I was judged harshly for not joining the "social corner." I couldn't eat in the canteen with all the clattering of trays scraping along metal bars, cutlery clinking, chewing, talking, I grabbed a banana and returned to my room. They refused to feed me in my room because of a teenage eating disorder. Only one nurse snook me in dinners. But it all could have been avoided when I first gave the psychiatrist and her assistant the health guidelines for M.E.patients at the time from M.E. Ireland sent me. The psychiatrist threw it back on the bed to me and said we're going digital. I didn't have the cognition to say put in my file that you refuse the deal with a person with severe ME.