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Something exciting is coming in November

Q

Quilp

Senior Member
Messages
252
"We're bubbling with excitement and are almost ready to share some big news. It’s something that will take a big step forward in our mission to end ME/CFS and Long COVID. We can't say what it is yet, but you’ll want to be the first to know. Stay tuned as we will announce it on November 1! "

This is from an email I received from the OMF - I can't take this anymore I go from one conference to another. My hope is on life support.

Best of luck everyone
 
A

Alvin2

The good news is patients don't die the bad news..
Messages
3,036
I'm guessing its something to do with WASF3, a clinical trial, tests on OMF patients and so forth.
It could also be an NIH grant for research or a new theory (or advancement of @HTester's innate immune system theory).
 
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Q

Quilp

Senior Member
Messages
252
MonkeyMan said:
I'm so done with OMF. All the hopey hype, just to get more $$$. Hope I'm wrong this time.
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Hi MonkeyMan, I very much feel the same. For me this really is the last chance saloon with the OMF. I don't like feeling this way, but after several years, of something in the blood, metabolic traps, et al, I am almost finished. It's not that I don't trust them, I do, but the road is coming to an end for so many of us. Who would have thought this after the news broke on the 8th of October 2009.
 
Q

Quilp

Senior Member
Messages
252
I don't think I can take another ''research project''. If that's where we're at I can say goodbye to hope. In 2016 the NIH launched the biggest study ever into this disease. They still haven't published the results. Given that the OMF always ask for funding in November, I guess that's that.
I cannot tell you how terribly sad that so many people that could have achieved so much, achieved so very little. A thirty year nightmare that even now I can scarcely believe. It's like all this is happening to someone else, not me.
How can anyone carry themselves into old age with this illness on their back ? Barbaric and obscene, but then I have a choice. It's a choice others have taken, and I hope to God I find the strength to take that choice too.
 
MonkeyMan

MonkeyMan

Senior Member
Messages
407
Quilp said:
I don't think I can take another ''research project''. If that's where we're at I can say goodbye to hope. In 2016 the NIH launched the biggest study ever into this disease. They still haven't published the results. Given that the OMF always ask for funding in November, I guess that's that.
I cannot tell you how terribly sad that so many people that could have achieved so much, achieved so very little. A thirty year nightmare that even now I can scarcely believe. It's like all this is happening to someone else, not me.
How can anyone carry themselves into old age with this illness on their back ? Barbaric and obscene, but then I have a choice. It's a choice others have taken, and I hope to God I find the strength to take that choice too.
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Quilp, I agree with every word you wrote. But even though the OMF and the NIH may be spinning their wheels, there is a lot else going on that keeps me going, nearly 40 years into dealing with this barbaric condition.
BC-007 may be the treatment that we're waiting for; we will know next summer.
Besides that, this January '23 blog from Cort gives me hope.
Keep the faith. We will get there one of these days, with or without the OMF and NIH.
 
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Alvin2

The good news is patients don't die the bad news..
Messages
3,036
We are excited to announce our very first clinical trial: The Life Improvement Trial (LIFT). This clinical treatment trial is a major step towards understanding and treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) more effectively.

What is The LIFT?

Conducted under the direction of David Systrom, MD, Director of our Harvard Collaboration and Jonas Bergquist, MD, PhD, OMF's Chief Medical Officer and Director of the Uppsala University Collaboration,The LIFT is a randomized, double-blind placebo trial that will investigate two particular drugs: Pyridostigmine (commonly known as Mestinon) and low-dose naltrexone (LDN) separately and together as a combination.
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Blargh :meh:
 
BrightCandle

BrightCandle

Senior Member
Messages
1,158
That is as unexciting as we can get. Two drugs that many have tried. My confidence in the OMF has dropped drastically now. Where are all the small trials they promised this year? Why can't Ron get the machines he needs? No rather than that a trial in two drugs that at best are some symptom relief for some people.
 
W

Wishful

Senior Member
Messages
5,792
Location
Alberta
Wow. Sooo exciting. Zzzzzz. :sleep:

I suppose it's not a total waste. Maybe it can provide slight improvements for some subgroup (but maybe without being able to identify if someone is in that subgroup). Alternatively, it could prevent wasting funds on further testing. A negative result could save some people some money by crossing it off their "I should try this" list.

That seems to be a trial that the manufacturers of those drugs should fund.
 
H

hapl808

Senior Member
Messages
2,150
Yeah. I mean, more trials are a good thing, but it's unfortunately that there needs to be a hype machine for funding and such. I wasn't very 'excited' in the first place, as I don't have high hopes for much anymore, but I know some people get their hopes up.

I've tried LDN several times at varying dosages. Only thing I noticed was extremely vivid dreams, but maybe it was doing something else I didn't see. I haven't used Mestinon, but tried huperzine a few times and got some potential benefits - it seemed like it didn't improve my baseline, but maybe decreased the severity of my crashes by 10%. Always hard to judge such subjective things, though. Don't think I ever took them at the same time, but I might've in the days before I tracked every supplement and medicine.

Maybe something useful will come of it. I'd really like to see more trials that measured various anti-pathogen treatments as well - antivirals, antibiotics, antifungals. Would be interesting to see doxy and acyclovir and such, but obviously there are limited resources and limited things that can be done in trials.

I still think that until this research is funded at the level of HIV, nothing will change.
 
Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,451
hapl808 said:
I've tried LDN several times at varying dosages. Only thing I noticed was extremely vivid dreams, but maybe it was doing something else I didn't see.
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I got the flu, and did not take the LDN for two whole days. By day two, all this SWELLING UP resumed.

My teeth were numb, again. It's the main symptoms LDN seems to go after: a bunch of tissue swelling in my mouth. It starts up late in the afternoon, and everything swells. That pattern repeats daily.

It would be fascinating to simply have experts be able to explain WHAT is that symptom and what would LDN be doing to address it?

But I have no idea. It's just my body. And nobody asks us, anything. About our direct experience.

I'm reminded the immunologist/allergist canceled my appointment. Refused to help me. Gosh, could you refer me to somebody who might be able to help me? NAH.

So how do we solve any of this when we have no Tools, no support?
 
MonkeyMan

MonkeyMan

Senior Member
Messages
407
BrightCandle said:
That is as unexciting as we can get. Two drugs that many have tried. My confidence in the OMF has dropped drastically now. Where are all the small trials they promised this year? Why can't Ron get the machines he needs? No rather than that a trial in two drugs that at best are some symptom relief for some people.
Click to expand...

Exactly.
 
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