Poll: When do you brutally honestly think there will be a cure for ME?

[Thebirdman333]

would a follow up opportunity develop later, after we hear of your great success and that of the other members?

Yes, there will be but it will be more expensive. The initial group gets special treatment, and it will always be the discounted price for all original members in the first buy, this was something we worked out with them in the "contract" from day 1. The first batch they are actually lossing money initially... Or at least breaking even. But it's an investment for them, so they're doing it.

 

[sometexan84]

would a follow up opportunity develop later, after we hear of your great success and that of the other members?

The actual company that has rights to this drug will be forced into allowing trial access, for ME/CFS. Of that, I am sure.

But aside from that route, yes, a follow up opportunity will 100% exist.

 

[jaybee00]

Extreme speculation.

So to answer this question, when will mecfs be cured?

Well, with IFN-L I'm fairly confident this will cure most of us, and we get it in a few weeks. So this year?

 

[crowtor]

There's a story of a long covid patient recovering after experimental treatment with BC 007. This drug apparently fixes issues with micro vessel circulation, which is known to be a factor in some ME/CFS types.

https://www.fau.eu/2021/08/27/news/research/further-patients-benefit-from-drug-against-long-covid/

 

[Thebirdman333]

Extreme speculation.

I wouldn't call it that, I would call it extreme scientific and deductive reasoning based on many things:

1) 82% positive EV vs 15% controls.
2) IFN Alpha (much weaker, not targeted at gut) sending on average 40% into temporary remission.
3) Already seeing many people improve on Gs4, which is an RdRp inhibitor.
4) Ampligen helps a lot, but has to be sustained.
5) Long COVID being helped by antivirals, like paxlovid.
6) Countless studies on the drug clearing persistent infections like rotavirus, norovirus.
7) Studies showing EV can cleave IFN signaling and production.
8) Recent studies showing genetic deficiency in IFN lambda can lead to worsened infections.
9) Studies showing weakened epithelial barrier allowing viruses to create a home in the gut.
10) Recent study showing IFN lambda was 91% effective with a SINGLE DOSE of reducing severe COVID cases and hospitalizations.

 

[Thebirdman333]

There's a story of a long covid patient recovering after experimental treatment with BC 007. This drug apparently fixes issues with micro vessel circulation, which is known to be a factor in some ME/CFS types.

https://www.fau.eu/2021/08/27/news/research/further-patients-benefit-from-drug-against-long-covid/

Unfortunately, some people will relpase.

 

[sometexan84]

Extreme speculation.

He literally said he was "confident".

That's not speculation, not a factual claim.

I too am "confident" that this is the case.

 

[Alvin2]

When do you brutally honestly think there will be a cure for ME?

The day after i'm dead.

 

[GlassCannonLife]

I wouldn't call it that, I would call it extreme scientific and deductive reasoning based on many things:

1) 82% positive EV vs 15% controls.
2) IFN Alpha (much weaker, not targeted at gut) sending on average 40% into temporary remission.
3) Already seeing many people improve on Gs4, which is an RdRp inhibitor.
4) Ampligen helps a lot, but has to be sustained.
5) Long COVID being helped by antivirals, like paxlovid.
6) Countless studies on the drug clearing persistent infections like rotavirus, norovirus.
7) Studies showing EV can cleave IFN signaling and production.
8) Recent studies showing genetic deficiency in IFN lambda can lead to worsened infections.
9) Studies showing weakened epithelial barrier allowing viruses to create a home in the gut.
10) Recent study showing IFN lambda was 91% effective with a SINGLE DOSE of reducing severe COVID cases and hospitalizations.

Fingers crossed mate.

 

[Heart Face]

Do you mean a cure or a treatment?

 

[Heart Face]

Unfortunately, some people will relpase.

I don’t think recovery can be judged until at least a year of no symptoms, so is this recovery or is this improvement at the moment? I have had many of those.

 

[Heart Face]

There isn’t a cure for HIV and millions and decades have been pumped into that.

 

[GlassCannonLife]

There isn’t a cure for HIV and millions and decades have been pumped into that.

Fair point, I meant cure as in an actual cure, but if there is a treatment that is in essence as effective as a cure then that would be good enough I guess!

 

[crowtor]

Fair point, I meant cure as in an actual cure, but if there is a treatment that is in essence as effective as a cure then that would be good enough I guess!

The word cure is extremely misleading to me, was there ever a cure to something? Is what we define as a 'cure' simply a 'single dose' treatment?

 

[Heart Face]

I’m not expecting a cure. What diseases have ever been cured?

 

[Thebirdman333]

I’m not expecting a cure. What diseases have ever been cured?

Scurvey, Hepatitis C, etc.


Also note after hep c got a cure, magically mental institutions lost 35% of their business. I really do think a lot of chronic illnesses are all viral induced. Just recently ata 188 cured an MS patient, by transplanting t cells to remove chronic ebv.

 

[Rufous McKinney]

Hepatitis C.

that has a treatment? My friend...got treated for that about ten years ago but it was, I seem to recall, a very dangerous medication, interferon or something.

I hope we can get TREATMENTS that help us function and feel better. A cure would be great, but TREATMENTS are more realistic.

Apheresis, perhaps.

 

[Rufous McKinney]

Also note after hep c got a cure, magically mental institutions lost 35% of their business. I really do think a lot of chronic illnesses are all viral induced. Just recently ata 188 cured an MS patient, by transplanting t cells to remove chronic ebv.

Oprah and Prince Harry just did a mental health feature.

Its a bit frustrating to think of folks with that power and notoriety- if they put their weigh behind comprehensive viral research: maybe we'd have very little mental illness and many fewer chronic illnesses which are so depreciating and degrading.

So Darn It.

 

[Thebirdman333]

that has a treatment? My friend...got treated for that about ten years ago but it was, I seem to recall, a very dangerous medication, interferon or something.

I hope we can get TREATMENTS that help us function and feel better. A cure would be great, but TREATMENTS are more realistic.

Apheresis, perhaps.

They used interferon alpha which is far more dangerous than other IFNS. Regardless there is treatments. And again look at MS being cured with t cell transplants. We have ampligen for a treatment althought expensive, and that's been around awhile.

Regarding HELP, I wouldn't bother. Recent community poll showed only 20% got helped by it. 40% no change. 20% got hurt by it and the other 20% couldn't tolerate.... I don't see HELP being a treatment outside of early onset long haulers, and it'll probably have to be sustained regularly as well.

[GROUP=][/GROUP]

 

[Rufous McKinney]

They use interferon alpha which is far more dangerous than other IFNS.

I know two people did the interferon alpha and both had memory loss issues..one very serious.