Is there anything that’s actually promising?

[J.G]

Like objective evidence of brain damage! Yippee!

Only a fellow pwME could follow up the words "objective evidence of brain damage" with a "Yippee!" A potent statement of how dire our diagnostic situation is, if there ever was one!

 

[bensmith]

Its weird I’ve never lied to myself, not really. Def not like this. Just holding on to the most micro chance of help coming someday. Shits beyond wicked.

 

[wabi-sabi]

Only a fellow pwME could follow up the words "objective evidence of brain damage" with a "Yippee!"

Oh I fully embrace the irony!

 

[Wishful]

Taking a break from it for a certain length of time and restarting it could help, but probably need to keep cycling on and off.

It's certainly worth trying, but my experience with ME is that treatments might work well for the first few doses, and then they stop working and never work again. I think there are a lot of complex interactions involved in ME, and some treatments disturb the pattern in a way that temporarily reduces a symptom, but then the pattern readjusts in a way that doesn't allow the same disturbance to work again. I liken in to gravel in a funnel: if you poke it just the right place, you might cause a chain reaction that lets a piece or two drop out, but then that 'magic spot' no longer exists, and you have to search for a new spot to poke just right.

 

[Fighttolive]

At least now, I can just tell people I have long Covid and I won’t get looked at like I’m nuts. A bit more comfort in the world leaving behind many more than just us these days… a bond of you will.

 

[nryanh94]

I had to chuckle when I read this. With all due respect, "treatment 3-5 years away" has been the cliché prediction for this disease ever since ME/CFS was first identified decades ago. 3-5 years is an appealing time-frame because it doesn't sound like "decades" yet it gives plenty of time for stuff to happen.

And yet, the "3-5 year" time-frame never comes true; it just constantly slips into the future.

I get your point, but in a thread to where someone is looking for hope, why say this?

 

[Oliver3]

I get your point, but in a thread to where someone is looking for hope, why say this?

Well, Whitney did say " happy cure year this year" . When I asked him if he meant it was a hopeful pun or a potential reality, he replied " both"

 

[bensmith]

Well, Whitney did say " happy cure year this year" . When I asked him if he meant it was a hopeful pun or a potential reality, he replied " both"

that isn’t true anymore last i heard.

 

[Martin aka paused||M.E.]

Martin, if we pull our resources, we could perhaps make a compelling “fair use” argument under Section 107 of the Copyright Act

Nice one! But unfortunately, copyright is ubiquitous so in Germany, it would still be a copyright infringement if he doesn't agree.
Yeah, I miss it so much 😢 Mate, it will come back!!!

 

[Martin aka paused||M.E.]

It's certainly worth trying, but my experience with ME is that treatments might work well for the first few doses, and then they stop working and never work again.

Yeah but only with these Aha treatments that only tackle the symptoms

 

[Judee]

I had to chuckle when I read this. With all due respect, "treatment 3-5 years away" has been the cliché prediction for this disease ever since ME/CFS was first identified decades ago. 3-5 years is an appealing time-frame because it doesn't sound like "decades" yet it gives plenty of time for stuff to happen.

And yet, the "3-5 year" time-frame never comes true; it just constantly slips into the future.

We're closer to the actual 3-5 year time frame than before just because of the passage of time.

Plus, knowledge is increasing (estimated to be doubling every 12-13 months) and we have to be getting closer just because of that even if someone stumbles upon the answer by accident.

Penicillin, the x-ray machine, implantable pacemakers, quinine--these are just some of the medical discoveries made my accident.

Please don't give up anybody!!!!

 

[MonkeyMan]

Jarred Younger did an excellent talk at the overall disappointing IACFS/ME

@Martin aka paused||M.E. Hi Martin, Jarred is brilliant but I haven't seen him give a talk in years and would love to see this talk, or get a transcript. Is it available somewhere online?

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. Hi Martin, Jarred is brilliant but I haven't seen him give a talk in years and would love to see this talk, or get a transcript. Is it available somewhere online?

Not that I would be aware of

 

[perrier]

that isn’t true anymore last i heard.

HI Ben Smith, are you able to clarify a bit what you mean. Someone somewhere posted that trying out different medications on the cells did not work--but I don't have info. If there is any recent reliable news, please post. We just don't seem to know what is going on at OMF. Except the Abilify project with Dr. Bonilla. Thanks in Advance

 

[Treeman]

Ben Smith, are you able to clarify a bit what you mean. Someone somewhere posted that trying out different medications on the cells did not work--but I don't have info. If there is any recent reliable news, please post. We just don't seem to know what is going on at OMF. Except the Abilify project with Dr. Bonilla. Thanks in Advance

I read somewhere that he had an adverse reaction to some new medication (it may have been Janet Defoe's post on here) So assumed this new medication was a reference to progress this year. I think omf are keeping drug names secret so people who like to experiment don't to ensure they don't harm themselves

 

[Martin aka paused||M.E.]

I read somewhere that he had an adverse reaction to some new medication (it may have been Janet Defoe's post on here) So assumed this new medication was a reference to progress this year. I think omf are keeping drug names secret so people who like to experiment don't to ensure they don't harm themselves

Today he said it was probably an interaction with another drug

 

[Treeman]

I recently tried high dose B1. It gave me about 5/6 weeks of increased energy, less pem etc. That gave me hope, it clearly demonstrated that this illness can be tamed, cheaply, safely and with readily available substances.

There are many countries spending lots of money on LC, e.g. USA 1billion, we are in the strongest position with this illness then we've ever been.

What we need now is more and strong patience, without this we succumb to poor health. I'm keeping the faith.

 

[hapl808]

I also think we need advocacy that the money is spent on useful therapies rather than 50 varying trials of CBT or GET or some other LC therapy already known to be useless. The USA is good at spending money, but less known for spending it effectively or on the thing for which it was appropriated.

It's relatively shocking with Covid itself that we still have minimal information on effective therapeutics, and some promising therapies (budesonide, fluvoxamine, etc) have had promising initial trials but have struggled to raise money or find people willing to do larger trials. The USA has 150k Covid cases every day at the moment, but these trials struggle to enroll 1,000 people. The system needs an overhaul.

 

[Martin aka paused||M.E.]

budesonide, fluvoxamine, etc

Maraviroc + statins seem to be promising for LC

 

[bensmith]

@perrier basically what they said. Tree and martin.