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!
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.
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!
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.