Is there any positive upcoming news???

[MonkeyMan]

Ron Davis is providing almost monthly video updates. It is true that progress over the last year has been a bit disappointing, but he is providing regular updates at least.

@JES Where are these updates that you speak of?

 

[JES]

@JES Where are these updates that you speak of?

On the OMF YT channel. Ok, maybe I overestimated a bit by monthly updates, but at least the last update video from Ron Davis was September 26th, so less than a month ago. It's worth watching, as he gets his message and current research challenges across rather well IMO.

 

[borko2100]

I think the 'something in the blood' hypothesis is the most promising one. If the cells are only dysfunctional in vivo, then this would throw off a lot ex vivo tests on cellular function. This could explain why research has been so slow and inconclusive so far.

 

[Mary]

MODERATOR'S NOTE: THE TOPIC OF THIS THREAD AS STATED IN THE TITLE IS UPCOMING POSITIVE NEWS. WE'VE HAD TO DELETE SEVERAL POSTS IN THIS THREAD FOR BEING OFF-TOPIC. PLEASE STICK TO THE TOPIC AT HAND IN FUTURE POSTS. IF YOU WANT TO DISCUSS RESEARCH FUNDING, PATIENT ADVOCACY OR OTHER ISSUES, PLEASE DO SO IN A SEPARATE THREAD.

 

[bthompsonjr1993]

@bctjr1993 What about you? Seems we have the clamp device with the TRMP3 receptor being able to distinguish between ME and other diseases - and then we have the nano needle marking the whole thing around the metabolic trap hypothesis? But so far the nano needle hasn't been able to rule out other conditions?

And then we have people getting better with the cranial cervical instability surgery. It gets pretty overwhelming to me when I try to connect the dots. So in that sense it is kind of wait five minutes and check again.

We don't need the nanoneedle to distinguish from other diseases. What we need is merely something to PROVE to the doctors that we ARE sick and it is not in our heads. But to hear that the clamp device is able to distinguish between Me and other diseases is just icing on the cake! Yes, that surgery is a great hope, and huge news for us.

And I agree, it is hard to keep track of all the positive developments! When I first got this disease just 5 years ago and I searched online for promising research, there was virtually nothing. All that would come up was articles debating if MECFS is a real disease. Those days are gone. I never imagined that in just 5 years there would be so many promising projects that I can't even keep track of them. Off the top of my brain fogged head I can think of:

-Metabolic trap which Ron Davis himself says "is probably correct", and you have to put a TON of weight on that statement, because Ron would never say that to us if he wasn't truly convinced of that. In which case they are looking at many options to reverse it. One of those options is hyperbaric oxygen therapy, which @Jesse2233 says has brought him from very sick to now working full time, and the people I have personally spoken to who have done it have said it has helped them. Then the other option they mentioned is gene editing, which they made sounds like it wouldn't be that difficult for them.
-The nanoneedle, which can both prove we are sick, and allow drug after drug to be trialed without having to use them on patients first.
-SS 31. A mitochondrial agent, a new type of drug, that was shown to make CFS patient blood behave like healthy blood in the nanoneedle.
-Copaxone, which effectively treated Rachel Riggs CFS, and also made CFS patient blood behave like healthy blood in the nanoneedle.
-The cortene trial, which seems to be showing encouraging results, and is advancing to the next phase.
-The CCI scans available to see if we have this problem, and the knowledge that if we do have it, a surgery can likely fix us.
-The Norwegian Cyclo trials. They seem to be indicating that the initial results are positive, we now wait and see how larger trials play out.

Just remember this, every day for the rest of your life we will know more about CFS that we do today. And this is true with every day that passes. Thanks to Ron's coordination, everything now builds on itself. Research in one area of CFS will inform all areas, and vice versa. We will figure this out. I refuse to despair about today when tomorrow holds so much promise. This is going to be a beautiful story.

 

[LongMacc]

I am optimistic too and after replaying what Ron Davis has said, I have become more aware of the serious conviction he must have IF he is to say such a thing, especially given his context as such an esteemed scientist at one of the top institutions in the world.

Personally, if Dr Phair's trap hypothesis is shown as consistent, I am interested at not only the implications it has on ME/CFS but a range of other chronic Illnesses. I'm paraphrasing here but Ron's stated during the symposium that chronic illness patients "... simply do not get better" - saying this surrounding the trap hypothesis explanation - was quite eye opening.

Hope this gets solved soon. It'd be a hell of a story.

 

[Marylib]

I was speaking to a young biology grad student the other day and telling him about all of these developments. He was very excited to hear about them, and the fact that all this is getting him interested in this field of research is very encouraging to me. He rushed off to do a google search for the research papers that have been published in the last couple of years.

 

[Nordman]

. While digging some old stuff, I found this piece of news, where Lipkin gives a time frame of 3-5 years to solve ME/CFS. The article was written in late 2015, so I assume he'll have a solution for us in let's see... one year.

I've seen this paper 2015 yet and been waiting since then. Meanwhile they have had an unpleasant lawsuit at Columbia University between 2 leading research members of this program: Ian Lipkin and Mandy Hornig. This for sure didn't accelatera the research process, unfortunately, I do not expect the result on 2020 anymore

 

[Hopeful2021]

We don't need the nanoneedle to distinguish from other diseases. What we need is merely something to PROVE to the doctors that we ARE sick and it is not in our heads. But to hear that the clamp device is able to distinguish between Me and other diseases is just icing on the cake! Yes, that surgery is a great hope, and huge news for us.

And I agree, it is hard to keep track of all the positive developments! When I first got this disease just 5 years ago and I searched online for promising research, there was virtually nothing. All that would come up was articles debating if MECFS is a real disease. Those days are gone. I never imagined that in just 5 years there would be so many promising projects that I can't even keep track of them. Off the top of my brain fogged head I can think of:

-Metabolic trap which Ron Davis himself says "is probably correct", and you have to put a TON of weight on that statement, because Ron would never say that to us if he wasn't truly convinced of that. In which case they are looking at many options to reverse it. One of those options is hyperbaric oxygen therapy, which @Jesse2233 says has brought him from very sick to now working full time, and the people I have personally spoken to who have done it have said it has helped them. Then the other option they mentioned is gene editing, which they made sounds like it wouldn't be that difficult for them.
-The nanoneedle, which can both prove we are sick, and allow drug after drug to be trialed without having to use them on patients first.
-SS 31. A mitochondrial agent, a new type of drug, that was shown to make CFS patient blood behave like healthy blood in the nanoneedle.
-Copaxone, which effectively treated Rachel Riggs CFS, and also made CFS patient blood behave like healthy blood in the nanoneedle.
-The cortene trial, which seems to be showing encouraging results, and is advancing to the next phase.
-The CCI scans available to see if we have this problem, and the knowledge that if we do have it, a surgery can likely fix us.
-The Norwegian Cyclo trials. They seem to be indicating that the initial results are positive, we now wait and see how larger trials play out.

Just remember this, every day for the rest of your life we will know more about CFS that we do today. And this is true with every day that passes. Thanks to Ron's coordination, everything now builds on itself. Research in one area of CFS will inform all areas, and vice versa. We will figure this out. I refuse to despair about today when tomorrow holds so much promise. This is going to be a beautiful story.

@Jesse2233
That's so interesting. I heard from another woman who said 6 months (3 hard shell at a clinic) and 3 months at home every day also cured her.
Is Jesse2233 still a member here? It would be interesting to hear how long he had treatments for.

If I had known 3 months continuous treatment was the threshold for a huge amount of healing, I would have done three months.

It would have been a hardship in many ways, but I do wish I had access to this information about time years ago. The brain can so quickly decline and I would have had liked to saved myself from many excruciating severe episodes.

thanks

 

[gbells]

@Jesse2233
That's so interesting. I heard from another woman who said 6 months (3 hard shell at a clinic) and 3 months at home every day also cured her.
Is Jesse2233 still a member here? It would be interesting to hear how long he had treatments for.

If I had known 3 months continuous treatment was the threshold for a huge amount of healing, I would have done three months.

It would have been a hardship in many ways, but I do wish I had access to this information about time years ago. The brain can so quickly decline and I would have had liked to saved myself from many excruciating severe episodes.

thanks

So far they can't gene edit more than an embryo (or in vitro for stem cells) except to change a few cells they can directly contact. It's a good idea conceptually though. Imagine getting a transfusion that could remove and negate a virus.

 

[frozenborderline]

There is no hopeful news, in my opinion. I do understand the psychological need for it, but I think false hope can be more damaging than no hope.

The brief summary is that our existing research is retreading ground from the 80s, moving at a glacial pace, and hasn't even uncoveredd the etiology, let alone been able to get at therapeutic drugs or interventions.

And there is no activist movement that is making demands to congress for anything more than crumbs. the solve me/cfs project asked for 15 million, which is a tiny amount.

Nothing to get excited about here. If we continue at this pace, no cure for at least 40 years.

Im not trying to be a buzzkill. I would love to be proven wrong here

 

[bthompsonjr1993]

So far they can't gene edit more than an embryo (or in vitro for stem cells) except to change a few cells they can directly contact. It's a good idea conceptually though. Imagine getting a transfusion that could remove and negate a virus.

I actually went back and re-watched the video from OMF, and I misinterpreted it. It wasn't gene editing, it was using molecule screens to cause IDO1 to start eating up our built up tryptophan. You can find what I'm talking about in this video if you watch from 25:50 to the end of the video:

 

[bthompsonjr1993]

@Jesse2233
That's so interesting. I heard from another woman who said 6 months (3 hard shell at a clinic) and 3 months at home every day also cured her.
Is Jesse2233 still a member here? It would be interesting to hear how long he had treatments for.

If I had known 3 months continuous treatment was the threshold for a huge amount of healing, I would have done three months.

It would have been a hardship in many ways, but I do wish I had access to this information about time years ago. The brain can so quickly decline and I would have had liked to saved myself from many excruciating severe episodes.

thanks

Wow, that is awesome. I have heard from an extremely low amount of people who have actually tried HBOT consistently for an extended period of time, but I have never heard someone says they did that and didn't benefit.

 

[gbells]

I actually went back and re-watched the video from OMF, and I misinterpreted it. It wasn't gene editing, it was using molecule screens to cause IDO1 to start eating up our built up tryptophan. You can find what I'm talking about in this video if you watch from 25:50 to the end of the video:

Prime gene editing is a big advance over Crispr because they can gene edit in later stages and adults. However the current state of the tech is that they can only do about 140 base pairs. A virus is about 14,000 base pairs so we are a ways off before that is going to happen.

 

[MonkeyMan]

Resurrecting this thread because, on one hand, I'm feeling despondent that so many of the researchers who used to give me hope for a breakthrough treatment (Ron Davis, Jarred Younger, Bhupesh Prusty, to name a few) have gone silent in the past year or two.

On the other hand, it's possible that something emerging from long-COVID research may swoop in and save the day.

What do you all think?

 

[Hopeful1976]

I lost hope too. I had such belief in Davis and Phair, but too many years have passed now. They should have found something significant by now. Nothing changes from year to year. The same requests for money; yet no further forward literally whatsoever. It is so sad.

 

[borko2100]

The metabolic trap theory was quite plausible. Namely, it could explain the fluctuation in severity and the possibility of permanent worsening after crashes, most other theories don't account for this important phenomenon. Unfortunately, it seems like the theory might be a dead end, it seems like no progress is being made at all on it.

 

[Rufous McKinney]

(Ron Davis, Jarred Younger, Bhupesh Prusty, to name a few) have gone silent in the past year or two.

On the other hand, it's possible that something emerging from long-COVID research may swoop in and save the day.

What do you all think?

@raghav ..........can you facilitate any updates from Dr. Prusty?

 

[elvira]

Haven’t they been silent because the pandemic paused all work? I really hope they are moving along now and will come with some updates But I do have hope in long covid giving us answers.

 

[Rufous McKinney]

Haven’t they been silent because the pandemic paused all work? I really hope they are moving along now and will come with some updates But I do have hope in long covid giving us answers.

Seems like major research updates are currently warranted. Like the statement Stanford won't let us see patients.

is this still the case?

Is the Chinese company still "unable to make the nannoneedle device".


I"m not complaining, I actually just sent them more money.

But whats going on right now: isn't clear at ALL.

I feel like we should have a much better understanding of who is doing what. And who got grants for what.

Oh now I"m mad......