it seems ron davis may have a new potential treatment

[Rufous McKinney]

Hey, I was the same. Not at Harvard but a German U.

I did 45 years of hard core science with mild ME. Got the top grades in really hard classes like Endocrinology and Zoology and many Ologies.

Now I do diddly squat, with Moderate Bad ME (got worse 2018, possibly a second viral exposure)

 

[Rufous McKinney]

I think it's a downstream effect... But I can't know of course

agree, likely downstream. Still worth working on reducing the effects.

I should check in on What the heck is Younger doing?

 

[Rufous McKinney]

Googling Reports:

Can steroids help brain inflammation?

It is an immune suppressor that also reduces inflammation. “Dexamethasone is really the only steroid that can effectively decrease inflammatory reactions in the brain to help our patients,” he said. Some patients receive dexamethasone to prevent inflammation in the brain and remain on the medicine indefinitely.

Cortisone does nothing for me though I've been diagnosed with brain inflammation

Ever tried the above?

I am more interested in herbal routes for achieving lowered brain inflammation. My chinese herbs do help with some of this.

 

[Martin aka paused||M.E.]

Googling Reports:

Can steroids help brain inflammation?

It is an immune suppressor that also reduces inflammation. “Dexamethasone is really the only steroid that can effectively decrease inflammatory reactions in the brain to help our patients,” he said. Some patients receive dexamethasone to prevent inflammation in the brain and remain on the medicine indefinitely.



Ever tried the above?

I am more interested in herbal routes for achieving lowered brain inflammation. My chinese herbs do help with some of this.

Unfortunately not. And I don't have an expert in Chinese herbs

 

[Rufous McKinney]

And I don't have an expert in Chinese herbs

I understand- nobody "has one". I do, because I found him 17 years ago. Or I should say, my brother in law heard him lecture at a book store.

For every 10 acupuncturists, you might find one expert herbalist.

After my initial consultation, it costs me around- well there has been inflation. $80 a month is now around $140.

I tend to under consume the tea as well. So it lasts me longer than a month.

I'm willing to pay and grateful I can, so that I feel less miserable. Again: not a cure (I have cured some acute sympotms)

(FYI I have never tried an antiviral CTM protocol...they do exist...perhaps I should do that)

 

[Whit]

It’s not possible to be certain with science. But 10 years is not realistic. I feel confident it will happen much sooner.

I’m not going to spill any more beans to explain why but this particular treatment will likely be available much sooner than that. Under a year. But it has been complicated by how poorly I reacted to the test. Ron now wants to figure out a way to test patients that won’t make them worse for a month+ like it did to me.

There are also multiple other very interesting treatments Ron is working on.

And remember that when we talk about a cure, the way Ron is working on this so open mindedly and collecting so much information he could stumble across a cure. The chances of that happening have gone through the roof since he and others started working on ME/CFS compared to the previous 40 years.

So keep your hopes up. <3

 

[Riley]

I can't speak for anyone else but as someone who has been following ME/CFS research for decades upon decades now I have no problem admitting that the Abilify thing definitely surprised me.

I have a close friend who was extremely severe for years and has now had a truly miraculous response to Abilify, and I still am having trouble processing it.

 

[Rufous McKinney]

the way Ron is working on this so open mindedly and collecting

We are poised to see great leaps- very soon.

Your optimism is exactly where we need to focus.

I'm grateful we seem to be making much MORE forward progress. Papers coming out about every month.

Its more than hope...we must persevere.

 

[Rufous McKinney]

How long till the patient community has access to this proposed treatment that @Whit is on?

I look forward to this day...when we all can feel better.

Reminder: we still need viable DIAGNOSTICS (funding does exist now to further that in the $1.13B NIH Grants)

We need to understand the subtypes- as we work towards it all. Otherwise any time they try to further experiments, we get sometimes our mixed bag results.

Its pretty obvious we have some subtypes. Then there are our similar illness friends. I think we must view this within that larger framework.

 

[Breagjam]

It’s not possible to be certain with science. But 10 years is not realistic. I feel confident it will happen much sooner.

I’m not going to spill any more beans to explain why but this particular treatment will likely be available much sooner than that. Under a year. But it has been complicated by how poorly I reacted to the test. Ron now wants to figure out a way to test patients that won’t make them worse for a month+ like it did to me.

There are also multiple other very interesting treatments Ron is working on.

And remember that when we talk about a cure, the way Ron is working on this so open mindedly and collecting so much information he could stumble across a cure. The chances of that happening have gone through the roof since he and others started working on ME/CFS compared to the previous 40 years.

So keep your hopes up. <3

I’m endlessly thankful to you and your family, Whitney!

 

[MonkeyMan]

It’s not possible to be certain with science. But 10 years is not realistic. I feel confident it will happen much sooner.

I’m not going to spill any more beans to explain why but this particular treatment will likely be available much sooner than that. Under a year. But it has been complicated by how poorly I reacted to the test. Ron now wants to figure out a way to test patients that won’t make them worse for a month+ like it did to me.

There are also multiple other very interesting treatments Ron is working on.

And remember that when we talk about a cure, the way Ron is working on this so open mindedly and collecting so much information he could stumble across a cure. The chances of that happening have gone through the roof since he and others started working on ME/CFS compared to the previous 40 years.

So keep your hopes up. <3

Dear Whit, I just want to say how much this means to me. That you've endured years of severe ME/CFS and are now doing better is incredibly inspiring, and the Herculean efforts of your dad (and mom) to find real answers to this devastating illness are equally jaw-dropping. There are times when I've started to lose hope (and out of frustration posted things on this board that I probably shouldn't have), but thanks to you I'm feeling optimistic again. And hope is what keeps me going.

Thank you!!!

 

[Breagjam]

I have a close friend who was extremely severe for years and has now had a truly miraculous response to Abilify, and I still am having trouble processing it.

I like the Churchill quote, it’s relatable!

 

[Rufous McKinney]

So I'm guessing were over a year away from knowing the treatment but more like three years from having a doctor feel comfortable writing an off label prescription for this treatment.

oh: I wandered over to the NIH grant pages tied to our Initiative.

Oh: its just awful there- to try to figure out any of that is just- looks like a morasse


There was some grant that opened and closed last winter: tied to long haul covid, testing existing drugs. That grant window closed.

So who got awarded grants from that program? How many PHDs are needed to answer that question?

In an other location, I found a reseach study confirming NIH underfunds female applicants by to the tune of, on average, $40,000 less compared with males.

Isn't that nice?

 

[Strawberry]

I’m not going to spill any more beans to explain why but this particular treatment will likely be available much sooner than that. Under a year.

Your optimism is contagious. And we all hope the under a year part is correct. My only issue with it is that while your early years and my early years sound exact, I’ve slowly deteriorated to moderate, while you have become very severe. So will it also help me?

Anyway, I truly hope this helps you regain your life back. I’m not asking for a response, best of luck with this treatment. You know we are all your cheering squad. Even if this is the only cheers we can muster.

 

[Rufous McKinney]

But that's exactly the reason why Ron won't uncover which drug it is. Because he knows we would kill for it without knowing if it's safe.

my doctor has two of us, ME victims, both older.....

his other patient Loves the Modafinil- then crashes. She begs for it, never wants to give it up.

I took it, it gave me a headache, made me clean the floor when I should not clean the floor.

My doctor is mad at me over my not liking his Pill.

I think the concept "crashing after the modafinl" does not sound like a good plan.

 

[Alvin2]

my doctor has two of us, ME victims, both older.....

his other patient Loves the Modafinil- then crashes. She begs for it, never wants to give it up.

I took it, it gave me a headache, made me clean the floor when I should not clean the floor.

My doctor is mad at me over my not liking his Pill.

I think the concept "crashing after the modafinl" does not sound like a good plan.

The modafinil headache is a known entity

 

[bread.]

It’s not possible to be certain with science. But 10 years is not realistic. I feel confident it will happen much sooner.

I’m not going to spill any more beans to explain why but this particular treatment will likely be available much sooner than that. Under a year. But it has been complicated by how poorly I reacted to the test. Ron now wants to figure out a way to test patients that won’t make them worse for a month+ like it did to me.

There are also multiple other very interesting treatments Ron is working on.

And remember that when we talk about a cure, the way Ron is working on this so open mindedly and collecting so much information he could stumble across a cure. The chances of that happening have gone through the roof since he and others started working on ME/CFS compared to the previous 40 years.

So keep your hopes up. <3

Hi Whitney,

thank you for chiming in.

I am a very severe patient, 100% completely flat for 3 years myself. I am one of the patients that are on the very brink, still getting slowly worse and have not seen a doctor in a very long while.

Can you share how much of an improvement with the new trial you think you are having? Maybe if it is connected with inflammation in the arterial system? This would help me in my forthcoming decisions that I have to makeand I believe would not put anyoneat all in danger?

If you can and will not share any of this, fair enough, hope you understand I am asking.

All the best,

 

[Marylib]

Let's not forget the possibility of collaborative efforts. Look at all the people Invest in ME Research Charity have been able to bring together. Look at ME Research UK marching on year after year. Look at what Mary Dimmock has been able to do, Lady Mar, and so many others. Maybe no one has found a one-size-fits-all treatment yet, but so much can happen by serendipity, inspiration and luck. No one will complain if someone stumbles upon an existing medication or a bag of fortified granola that helps even 25% of those who are suffering without giving them intolerable side effects. Or maybe one treatment will help just the men, or just the women, or just the children or just the ones in intractable pain who can no longer get access to their morphine. For those who are new to this as patients, get your ducks in a row while you can and remember that all activity has its costs. Get smart or find someone smart. Get emotionally resilent through the latent power within you or find someone who can help you wake up that power. Even if you could put all the bureaucrats in the world who have access to the public purse in one room and force them to watch Voices from the Shadows on endless replay maybe only one would get it, but one person might be enough. Stay alive long enough to see what happens next. If dystopian literature is not your bag, use your imagination.

 

[Marylib]

Googling Reports:

Can steroids help brain inflammation?

It is an immune suppressor that also reduces inflammation. “Dexamethasone is really the only steroid that can effectively decrease inflammatory reactions in the brain to help our patients,” he said. Some patients receive dexamethasone to prevent inflammation in the brain and remain on the medicine indefinitely.



Ever tried the above?

I am more interested in herbal routes for achieving lowered brain inflammation. My chinese herbs do help with some of this.

CBD Cannabis, when used wisely and prudently - possibly transdermally, can help some with what feels like neuroinflammation - not being able to see inside anyone's brain means this may be guesswork on my part, but that is an herbal remedy that can help alleviate symptoms. Which Chinese herbs have helped you, @Rufous McKinney? And as far as modafinil goes, that stuff feels like poison to me.

 

[Rufous McKinney]

CBD Cannabis, when used wisely and prudently - possibly transdermally, can help some with what feels like neuroinflammation - not being able to see inside anyone's brain means this may be guesswork on my part, but that is an herbal remedy that can help alleviate symptoms.

I agree- Cannabis has anti inflammatory properties and directly reduces it in my brain and my eyes which suffer greatly otherwise. Also some type of anti histamine qualities.

I use topical ointments to great effect....also.

My eyes are a mess, which leads to the brain.