I was able to read some of the live tweeting from the conference, and have seen other news on facebook. Here are my thoughts on possible treatments for subsets of ME/CFS (I found it interesting that there is an ongoing trial, apparently, with IVIG and plasmapharesis, which I think could offer a functional cure to some cases, and I use IVIG myself in low doses--it can be surprisingly helpful, not necessarily in the doses required for other refractory auotimmune diseases).
1) For autoantibodies directed against/affecting CNS: IVIG and plasmapharesis. See Sarah Mancuso's The Two Kinds of Decay for her recovery from a severe variant of Guillain-Barre where those two treatments plus steroids put her in remission for the last seven years or maye longer, she has a kid now. I've said for a while I think some cases can be framed as similar to Guillain-Barre, but CNS not peripheral nervous system. I don't know the results of the trial, but I was pleased to see there is one. I personally would take this approach over any immunosuppressant therapy, even though more trouble to the patient, it doesn't suppress arms of the immune system.
2) What about glutamate toxicity? If you know the story of Howard Bloom, he was bedridden with severe CFS for years--with the typical stress response (he joked he could relapse from an episode of Golden Girls--too much stress even in the comedy). Couldn't tolerate the sound of a newspaper rustling in the next room. Etcetera. I won't go into the deets of his protocol but it was all (medically and lifestyle) to completely calm the burned out CNS--to drench them in soothing chemicals--think of a burned forest. He's totally well today. Can travel, fly, exercise, work, think. Think of small fiber neuropathy, where people are in screaming pain but it's due to sub-par function of the nerves. They are not firing properly. So they 'scream'. That might be the case in some nervous systems. So, what about ketamine in such cases? It has worked in refractory depression, where the neurons themselves need to grow out again. They've essentially (in lay terms) shrivelled from too much stress/toxicity. Has anybody with severe ME considered IV ketamine? You can find a few good articles online about how it works in severe, "suicidal", treatment resistant refractory depression.
3) Biotin/thiamine. In both MS and basal-ganglia disease, there is current ongoing research that hypoxia or virtual hypoxia in the neurons/mitcohondria is the initiating/perptuating cause. High dose biotin has had remarkable results in progressive MS, and also in genetic, basal-ganglia disease. By improving energetics in the cell. By elminating the virtual hypoxia. Other B vitamins might be considered (per the long threads on this board, topical B2, and of course, folate and B12)--but specifically, I found it interesting that Whitney Dafoe doesn't make enough biotin or has a marker for deficiency/weakness. Some ME/CFS will actually suffer inborn errors of metabolism that manifested later in life as many IEM do, neurologically and psychiatrically, due to pressure on the already weak system. These can be classified as various types, and then fairly benign treatments tried. This includees a serious re-look at Marty Pall's work, as when there is hypoxia (functional, of any kind) NO builds up. But also it necessitates considering some ME from a neurologist's perspective, as due to IEM (see Saudabray, the pioneer in this specialty of neurology)
4) Pursuant to the above, normobaric oxygen in animal studies where MS like lesions were induced, was preventive of the disease. Normobaric oxygen might help. Hyperbaric oxygen is a HORRENDOUSLY OVERLOOKED treatment--whether mild home chambers or clinic chambers--in all neuroimmune diseases. It's expensive, so people overlook it.
5) Jarred Younger--sensitized microglia/leptin. Dietary changes to get all dietary sources of leptin out, and then, what do you do when sensitized microglia activate with small triggers? Here we get into something most people overlook, which is that our environments are toxic. Indoor environments are generally toxic. So if an ME victim can't handle light, sound, a shower, what makes you think they can handle the ordinary molds, bacterial vocs, offgassing toxins of 90% of homes? What about EMF, and then light at night, noise, pollution. I know many are too sick to get out into nature, but it is tremendously helplful to those who can get to fresh air and away from all these toxins. People really don't get how that lifts load. (That includes the crap in food--our food is just in terrible shape). This alone can improve someone by 25-40%, but most people don't want to believe it because it is so disruptive and it's not easy to get to a clean nontoxic home in a relatively cleaner environment.
Thoughts?
1) For autoantibodies directed against/affecting CNS: IVIG and plasmapharesis. See Sarah Mancuso's The Two Kinds of Decay for her recovery from a severe variant of Guillain-Barre where those two treatments plus steroids put her in remission for the last seven years or maye longer, she has a kid now. I've said for a while I think some cases can be framed as similar to Guillain-Barre, but CNS not peripheral nervous system. I don't know the results of the trial, but I was pleased to see there is one. I personally would take this approach over any immunosuppressant therapy, even though more trouble to the patient, it doesn't suppress arms of the immune system.
2) What about glutamate toxicity? If you know the story of Howard Bloom, he was bedridden with severe CFS for years--with the typical stress response (he joked he could relapse from an episode of Golden Girls--too much stress even in the comedy). Couldn't tolerate the sound of a newspaper rustling in the next room. Etcetera. I won't go into the deets of his protocol but it was all (medically and lifestyle) to completely calm the burned out CNS--to drench them in soothing chemicals--think of a burned forest. He's totally well today. Can travel, fly, exercise, work, think. Think of small fiber neuropathy, where people are in screaming pain but it's due to sub-par function of the nerves. They are not firing properly. So they 'scream'. That might be the case in some nervous systems. So, what about ketamine in such cases? It has worked in refractory depression, where the neurons themselves need to grow out again. They've essentially (in lay terms) shrivelled from too much stress/toxicity. Has anybody with severe ME considered IV ketamine? You can find a few good articles online about how it works in severe, "suicidal", treatment resistant refractory depression.
3) Biotin/thiamine. In both MS and basal-ganglia disease, there is current ongoing research that hypoxia or virtual hypoxia in the neurons/mitcohondria is the initiating/perptuating cause. High dose biotin has had remarkable results in progressive MS, and also in genetic, basal-ganglia disease. By improving energetics in the cell. By elminating the virtual hypoxia. Other B vitamins might be considered (per the long threads on this board, topical B2, and of course, folate and B12)--but specifically, I found it interesting that Whitney Dafoe doesn't make enough biotin or has a marker for deficiency/weakness. Some ME/CFS will actually suffer inborn errors of metabolism that manifested later in life as many IEM do, neurologically and psychiatrically, due to pressure on the already weak system. These can be classified as various types, and then fairly benign treatments tried. This includees a serious re-look at Marty Pall's work, as when there is hypoxia (functional, of any kind) NO builds up. But also it necessitates considering some ME from a neurologist's perspective, as due to IEM (see Saudabray, the pioneer in this specialty of neurology)
4) Pursuant to the above, normobaric oxygen in animal studies where MS like lesions were induced, was preventive of the disease. Normobaric oxygen might help. Hyperbaric oxygen is a HORRENDOUSLY OVERLOOKED treatment--whether mild home chambers or clinic chambers--in all neuroimmune diseases. It's expensive, so people overlook it.
5) Jarred Younger--sensitized microglia/leptin. Dietary changes to get all dietary sources of leptin out, and then, what do you do when sensitized microglia activate with small triggers? Here we get into something most people overlook, which is that our environments are toxic. Indoor environments are generally toxic. So if an ME victim can't handle light, sound, a shower, what makes you think they can handle the ordinary molds, bacterial vocs, offgassing toxins of 90% of homes? What about EMF, and then light at night, noise, pollution. I know many are too sick to get out into nature, but it is tremendously helplful to those who can get to fresh air and away from all these toxins. People really don't get how that lifts load. (That includes the crap in food--our food is just in terrible shape). This alone can improve someone by 25-40%, but most people don't want to believe it because it is so disruptive and it's not easy to get to a clean nontoxic home in a relatively cleaner environment.
Thoughts?