I want to introduce you to Kelly Louise Smith-May. Kelly is a 39-year-old British mum of four crowdfunding her own death. This is because Kelly is suffering unbearably with long covid. I came across Kelly’s story when the official go fund me account on twitter sent me a link to
Heart breaking and yet I fully understand. I am 34 years with myalgic encephalomyelitis. I have been severe to moderate. One of the cruelest parts of this disease is not knowing what the future holds. If medical professionals knew the facts they could at least give realistic expectations. Some research shows that around year 3 to 5 the immune system may change and symptoms may improve. Some have gone into remission. We don't know who or why because there has been lack of research.
I got it in 2004 after having mono, but not realizing I had mono I kept trying to just push through. Anyway, after I completely crashed and couldn’t do anything for like 3/4 of a year I sort of got back to normal. I lived in normal life for years. Unfortunately a car accident (and the stress that came with a sudden injury like that) brought it all back in full force.
I didn’t know what was happening at the time, it took me another seven years to actually get a diagnosis. That period of remission was wonderful though. I accomplished a whole bunch of goals I had for my life.
I cry for young people who get this. I was 39 before it took me down for good.
I can’t believe our government thinks this is a viable path.
I would recommend Dr. Tania Dempsey, who's an expert on Long COVID and chronic illness. Please get in touch with her before giving up. She won't give up on any patient. Best of luck.
Heartbreaking. I feel like I've been dealing with 'mild' ME symptoms since I was a teen. After doing all kinds of tests the closest my doctor would diagnose me with was "chronic daytime sleepiness". I'm lucky I managed to get through school and have a stable job, though I doubt anyone realizes I spend 90% of my day fighting through the fog just to get some work done. Every day I fear someone at work will realize just how impaired I am and my stable job will be gone. Praying something changes so it doesnt have to be like this anymore
Long Covid is caused by the SARS2 spike protein persisting in the body for years.
It causes inflammation, immune deficiency, accelerated aging and painful damage in all organs including the brain.
Conventional tests won't show the microclots, a primary problem in Long Covid causing so much damage, a flow cytoometry test will do that.
There is help at CovidLongHaulers.com for Long Covid and Long Vaxx patients (is she vaccinated? some vaxxed patients experience Long Covid from the spike protein of the vaxx)
They test for spike protein in the immune cells, and treat patients with a cocktail of AIDS drugs. Because the SARS2 spike protein contains inserts of HIV genes, COVID has a similar pathology to AIDs, and responds to AIDS therapies. For more on this see my research on X @Janiesaysyay.
It is a shame but that is what the health care industry in the west has come to. They don't know how to fix long covid and they have given up. "Let them die" they say. We have other patients we can make money from. It's all about the money or lack thereof. No one cares anymore except the dying and the families left behind.
I feel so sad for her, reading this makes me feel so grateful I was never that severe. It’s ridiculous they won’t let her try low dose abilify. I might not still be here if I hadn’t started low dose naltrexone in 2020. I was only able to sleep in segments of a few hour awake, a few hours asleep, totally fatigued and feeling concussed when I was awake. 0.5 mg LDN changed my life overnight. They need to let her TRY whatever may help.
Thank you for writing this article and sharing Kelly’s story. I am 39 years old as well and have had Long Covid since summer of 2022 with similar neurological symptoms, physical limitations, as well as anxiety/depression. In my own limited way, I can certainly understand and completely respect Kelly’s decision and experience.
I wanted to throw this out there, in case it might be of help, that a lot of my neurological function (including the light and noise sensitivity, sitting and walking) improved as a result of two therapies: Vision Therapy that was overseen by a neuro-optometrist and Vestibular therapy.
Sorry to hear you are suffering Lisa. Thank you for the suggestion. I have managed to put Kelly and her husband in touch with a very good long covid specialist so am hopeful some progress will start to be made
Ketogenic diet, zero carb, no veggies and fruit and other nonsense; ruminant meat and bone bnroth and old-tyme goodies. MCT oil and ketones, ketones, ketones, to combat systemic inflammation.
Check online for information; you don't have to trust me!
Heart breaking and yet I fully understand. I am 34 years with myalgic encephalomyelitis. I have been severe to moderate. One of the cruelest parts of this disease is not knowing what the future holds. If medical professionals knew the facts they could at least give realistic expectations. Some research shows that around year 3 to 5 the immune system may change and symptoms may improve. Some have gone into remission. We don't know who or why because there has been lack of research.
But for those of us with ME the chances of being normal again are slim. But experts wrote a guide to help drs be realistic about managing. See ME IC Primer link here https://drive.google.com/file/d/1OLvCfM3HAZ4Yn_UELRWLXV8c3BTmwgnR/view
I got it in 2004 after having mono, but not realizing I had mono I kept trying to just push through. Anyway, after I completely crashed and couldn’t do anything for like 3/4 of a year I sort of got back to normal. I lived in normal life for years. Unfortunately a car accident (and the stress that came with a sudden injury like that) brought it all back in full force.
I didn’t know what was happening at the time, it took me another seven years to actually get a diagnosis. That period of remission was wonderful though. I accomplished a whole bunch of goals I had for my life.
I cry for young people who get this. I was 39 before it took me down for good.
I can’t believe our government thinks this is a viable path.
Heart-wrenching, Nate. But one of the millions of LC stories needing to be told. I also wish Kelly peace.
I would recommend Dr. Tania Dempsey, who's an expert on Long COVID and chronic illness. Please get in touch with her before giving up. She won't give up on any patient. Best of luck.
www.drtaniadempsey.com
Thanks Ruth. I've had a few offers and have forwarded them to Kelly.
Heartbreaking. I feel like I've been dealing with 'mild' ME symptoms since I was a teen. After doing all kinds of tests the closest my doctor would diagnose me with was "chronic daytime sleepiness". I'm lucky I managed to get through school and have a stable job, though I doubt anyone realizes I spend 90% of my day fighting through the fog just to get some work done. Every day I fear someone at work will realize just how impaired I am and my stable job will be gone. Praying something changes so it doesnt have to be like this anymore
Thank you for sharing. Something needs to change
Horrible and sad but an understandable decision.
Long Covid is caused by the SARS2 spike protein persisting in the body for years.
It causes inflammation, immune deficiency, accelerated aging and painful damage in all organs including the brain.
Conventional tests won't show the microclots, a primary problem in Long Covid causing so much damage, a flow cytoometry test will do that.
There is help at CovidLongHaulers.com for Long Covid and Long Vaxx patients (is she vaccinated? some vaxxed patients experience Long Covid from the spike protein of the vaxx)
They test for spike protein in the immune cells, and treat patients with a cocktail of AIDS drugs. Because the SARS2 spike protein contains inserts of HIV genes, COVID has a similar pathology to AIDs, and responds to AIDS therapies. For more on this see my research on X @Janiesaysyay.
It is a shame but that is what the health care industry in the west has come to. They don't know how to fix long covid and they have given up. "Let them die" they say. We have other patients we can make money from. It's all about the money or lack thereof. No one cares anymore except the dying and the families left behind.
I feel so sad for her, reading this makes me feel so grateful I was never that severe. It’s ridiculous they won’t let her try low dose abilify. I might not still be here if I hadn’t started low dose naltrexone in 2020. I was only able to sleep in segments of a few hour awake, a few hours asleep, totally fatigued and feeling concussed when I was awake. 0.5 mg LDN changed my life overnight. They need to let her TRY whatever may help.
Thank you for writing this article and sharing Kelly’s story. I am 39 years old as well and have had Long Covid since summer of 2022 with similar neurological symptoms, physical limitations, as well as anxiety/depression. In my own limited way, I can certainly understand and completely respect Kelly’s decision and experience.
I wanted to throw this out there, in case it might be of help, that a lot of my neurological function (including the light and noise sensitivity, sitting and walking) improved as a result of two therapies: Vision Therapy that was overseen by a neuro-optometrist and Vestibular therapy.
Sorry to hear you are suffering Lisa. Thank you for the suggestion. I have managed to put Kelly and her husband in touch with a very good long covid specialist so am hopeful some progress will start to be made
Ketogenic diet, zero carb, no veggies and fruit and other nonsense; ruminant meat and bone bnroth and old-tyme goodies. MCT oil and ketones, ketones, ketones, to combat systemic inflammation.
Check online for information; you don't have to trust me!