I know there are some scientists doing research into brain inflammation in ME. Jarred Younger is one of them. I remember seeing some articles saying scientists were looking for drugs that could target the brain inflammation in ME. Might have been someone else (Klimas maybe?) looking at it separately to Younger. Anyway my question is, what's the likely time-frame for them finding a treatment for the inflammation? Is next couple of years too much to hope? (In terms of availability as well!)
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Brain inflammation research?
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andyguitar
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There is a lot of reseach into brain inflammation in general as it (inflammation) is considered to be a key part of many common disorders ie Dementia. There are already drugs to treat the suspected brain inflammation in ME. Steroids for instance, including Dexamethasone. There is a fairly new drug called Kineret which has been used for inflammation following Stroke. Looks promising and it would be interesting to see if any of the ME/CFS researchers look into it. So If ME is partly due to brain inflammation the drugs to treat it are already available.
My feeling is that treatment for ME won't be as simple as an existing antiinflammatory drug. Steroids seem to trigger remission in ME patients, but only for one or two courses of the drug, and then they stop working. Something in ME seems to adjust to such treatments. I think a more likely treatment will target whatever it is that is trying to keep us in this inflammatory state.
While that 'other target' isn't obvious at present, I do think there's a reasonable chance of discovering the cause in the next few years. If that can be treated with existing approved drugs, then we could get relief quickly.
While that 'other target' isn't obvious at present, I do think there's a reasonable chance of discovering the cause in the next few years. If that can be treated with existing approved drugs, then we could get relief quickly.
andyguitar
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It seems to be (at least for some) a feature of this illness- a treatment works for a while then the effect wears off. But the effect of Branched Chain Amino Acids seems to be something that does endure.
ljimbo423
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I agree. I've been taking BCAA's for almost a year now and they are just as effective now as they were when I started them.
Yes, I've encountered several 'works great for a while, then stops working forever after' treatments. Pesky ME seems to be very adaptive. BCAAs don't work reliably for me. They were effective at blocking (or delaying and spreading out) the increased transport of tryptophan into my brain after eating simple carbs, but I solved that by avoiding simple carbs. BCAAs seemed to provide some relief from an increase in symptoms a while back, but I'm not sure. I have only two treatments that still work reliably for me: cumin, and iodine or T2. Reliable and effective for me, but no one else has reported significant benefits from them.
andyguitar
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Hmm... may as well say it. I suspect the main benefit is that they displace Tryptophan.
MonkeyMan
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It was approved in 2001.
andyguitar
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Approval in the uk was for RA. Approved for a few other uses in 2018. Trial for stroke was last year.
MonkeyMan
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It was approved for RA in the US in 2001, and in Europe in March 2002.
https://www.accessdata.fda.gov/drugsatfda_docs/nda/2001/103950-0_Kineret_Approv.PDF
https://www.amgen.com/media/news-re...or-antagonist-represents-new-way-to-treat-ra/
andyguitar
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Sorry @Soon only just seen your question. What usually happens is that for a drug to be prescribed for an illness it has to be subject to a clinical trial to test that it is effective and safe. At the moment I am not aware of any trial for this drug as a treatment for me/cfs.
In some medical systems, doctors can prescribe a drug that is approved for other diseases, as an experimental treatment. My doctors were willing to prescribe LDN, minocycline, and several other drugs for my disorder, even though my doctor didn't know what I actually had, just that it was some sort of chronic inflammation disorder. Ask your doctor whether he's willing to prescribe it for you.
exactly! I wonder why this is...
I think 'adapting to maintain the ME state' is a big clue to ME, but I think it's quite likely that the cause of ME will be stumbled upon some other way, and then there'll be a lot of head slapping as researchers say: "Oh, it's so obvious. Why didn't I see that before?" 
ljimbo423
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I wonder if it might be a set point that consistently reestablishes itself and will continue to until the cause of all the dysfunctions, the immune system and mito dysfunction, brain inflammation and high levels of oxidative stress etc. is found and treated.
I think if the immune system dysfunction could be significantly muted or dampened down. That could open the door to supplements and drugs working better.
My feeling is the immune system dysfunction is what is causing all the others, including the brain inflammation. Even the immune system seems able to adapt to drugs or supps that work. So that wouldn't be a complete answer.
For me, it keeps coming back to getting to whatever is causing the immune system dysfunction and treating or preventing that. I feel like that's the only way to permanently stop all the other dysfunctions and the illness itself.
I think if the immune system dysfunction could be significantly muted or dampened down. That could open the door to supplements and drugs working better.
My feeling is the immune system dysfunction is what is causing all the others, including the brain inflammation. Even the immune system seems able to adapt to drugs or supps that work. So that wouldn't be a complete answer.
For me, it keeps coming back to getting to whatever is causing the immune system dysfunction and treating or preventing that. I feel like that's the only way to permanently stop all the other dysfunctions and the illness itself.
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Rufous McKinney
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It costs Thousands of $$ it appears....like 28 syringes are 4-5000$.
I see insurance won't pay for that and I can't pay for that. But Amgen is doing well?
I agree, but it's not as simple as taking an immunosuppressant. I've tried several that had no effect on my symptoms. It might be necessary to suppress one cytokine and support another. Maybe it's necessary to do both of those things and modify the HPA axis in a particular way.
I was able to trigger temporary remissions in the first few years, so it isn't impossible to do it. I expect it would take more effort to trigger remission now. It might take several drugs, supplements, and whatever else to 'set the foundation' for something else to trigger remission.