Is there anything that’s actually promising?

seamyb

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I have my own personal experiment ongoing and I believe it has the potential to be promising. I think either I make myself better eventually, or just end up making myself worse.

Any time I inhale a biofilm buster or spray it into my sinuses I get a severe crash. At this point I have sprayed many things up there and inhaled many others in an attempt to clear a hypothesised mould/fungal/MARCONS infection in my sinuses and lungs. Only those substances which are known to disrupt biofilm have caused a crash and I am taking this to be a herx reaction, or at the very least evidence that whatever is hiding in biofilm in my airways is the cause of my illness.

The last was from inhaling diffused essential oils. I'm working on getting back to baseline before I try it again, a lot slower, and even trying to work out how to get back to baseline quicker. But hopefully in a few months I'll be posting a recovery story and a significant number are also cured by it. Otherwise I'll be posting about my newly acquired severity. The fun of a PwME.
 
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MODERATOR'S NOTE: SEVERAL POSTS IN THIS THREAD HAVE BEEN DELETED FOR GOING OFF TOPIC. PLEASE TRY TO KEEP THIS THREAD FOCUSED ON A DISCUSSION OF PROMISING RESEARCH AND TREATMENTS.

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Wishful

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To answer the question the thread title posed, see this new thread: https://forums.phoenixrising.me/thr...ce-of-a-cure-for-me-cfs-and-long-covid.85356/

Sure it's preliminary, but if it proves true, it's a major breakthrough in understanding ME and it offers a simple treatment. The proposed treatment isn't 100% effective, but it might at least offer a significant improvement in quality of life while we wait for further developments.

Even if it's only 25% effective on 65% of PWME (I made those numbers up), it would at least turn ME from "it's probably psychosomatic" to general acceptance of it being a real disease with a real physical cause. I think that would make ME a bit less of a nightmare for a lot of people.

A nail for the coffin of GET/CBT? ;)

Even if this hypothesis and treatment don't work out, it still shows that there is hope for a treatment to show up at any time.
 

roller

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1 german med bc007. it eliminates antibodies, i understand. or auto-antibodies?
2 new tuberculosis vaccine vpm???, has broad and beneficial effect on immune system
3 biontech multiple sclerosis vaccine, in a few years, will shut down inflammation

1 removing needless/harmful autoantibodies... perhaps similar to rituximab or plasmapheresis ?
does it matter, where all these auto-anti-whatever-bodies came from?
guinea pigs will tell...

2 perhaps good, perhaps doom ?

3 that inflammation is surely in the way, and makes you retarded. having some clear days, before developing something else ugly...?

there is nothing.
 

Rlman

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To answer the question the thread title posed, see this new thread: https://forums.phoenixrising.me/thr...ce-of-a-cure-for-me-cfs-and-long-covid.85356/

Sure it's preliminary, but if it proves true, it's a major breakthrough in understanding ME and it offers a simple treatment. The proposed treatment isn't 100% effective, but it might at least offer a significant improvement in quality of life while we wait for further developments.

Even if it's only 25% effective on 65% of PWME (I made those numbers up), it would at least turn ME from "it's probably psychosomatic" to general acceptance of it being a real disease with a real physical cause. I think that would make ME a bit less of a nightmare for a lot of people.

A nail for the coffin of GET/CBT? ;)

Even if this hypothesis and treatment don't work out, it still shows that there is hope for a treatment to show up at any time.
This link not working
 

Wishful

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Rvanson

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I will try to answer this:
Yes, there is sth promising. Because we begin to understand the pathomechanism of ME.

But to say it very briefly: it all comes down to the question if we have enough money to do drug trials. Jarred Younger did an excellent talk at the overall disappointing IACFS/ME (many of you will know that I like this guy): He said now is the momentum to start drug trials. Because of the LC research. He has a table of quite promising chemicals and existing drugs he wants to study now (can't share due to copyright issues - sorry, lawyer). So, what is interesting: There is a TLR 3 agonist (CQ-07001) he wants to study that might work like Ampligen.

This is the second thing: The FDA approval for Ampligen... Let's hope it'll come.
Ampligen should have been made available to ME/CFS sufferers a long time ago. It has close to a 70 percent rate
on making ME sufferers feel MUCH better, and in many cases totally well again.It's not a cure, as it has to be taken over and over again, but I would be willing to take it in a heartbeat after 26 years of this illness.
 
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