it seems ron davis may have a new potential treatment

[Martin aka paused||M.E.]

We all need positive information @perrier and others.

Regarding @Whit I won't comment it too much bec I see our conversations to be very personal and trustful but what I can tell you is that he is energized because of Abilify. No reason to question his statements on how he is feeling.

And I can repeat what he said earlier in public posts: There is still hope for this drug. And Ron has more in the pipeline.

Scientific findings aren't sth you just throw out in detail to the public. It can harm publication. It's stupid but unfortunately a fact.

Additionally, it became obvious in Whitney's case why Ron and his colleagues didn't tell us about this drug atm.

IMO Ron is more open on scientific findings than anyone else I have seen so far (I have two other diseases and there you won't get information before the results of a study are published).

I believe that is what we were told, and for "idiotic" reasons (the grants were rejected).

Afaik the argument was in the past that Ron is personally involved bc of his son being ill and as a chairman not able to make objective decisions, at least that's what he told us years ago.
No one here has any idea regarding the nano-needle.

I will forward this criticism again to OMF. They also very much appreciate being looped in. But they can't decide whether a finding will be disclosed or not - that's up to the scientists. Don't forget: its a foundation! It's not the Job of a foundation to communicate scientific findings.
And I'm very sure Ron and his colleagues are much more experienced in what they can share and what could harm further progress.

Summa summarum: It's not easy at all, no it's heartbreaking and unbearable for everyone, especially for the more severe patients. I know what I'm talking about.

But we are all in the same boat. And the researchers decided to investigate an underfunded and unpopular disease. They could always step back. But they stay with us to help us. Let us not forget this.

 

[Badpack]

Im sick for 7 years now. Cant say anything OMF did improved my life in any way since then. Even the contraire. Their messages sparked misplaced hope for a long time. So not sure if i own anyone anything. And vice versa. Just hoping that Long covid now can bring us some real research and news in the future.

 

[wabi-sabi]

But we are all in the same boat. And the researchers decided to investigate an underfunded and unpopular disease. They could always step back. But they stay with us to help us. Let us not forget this.

Thank you @Martin aka paused||M.E. for this eloquent and thoughtful post.

I am very disturbed by what I see as people maligning or casting aspersions on the people who are trying to help us most and help us the most selflessly. I know we are all tired of being sick and that can make a person do funny things. But I really don't understand this reaction to attack our best defenders. I am asking everyone to stop this meanness now.

 

[5vforest]

I don't understand. I "liked" both Martin's posts and Badpack. I don't think there's anything wrong with criticizing OMF or any other organization, as long as you choose your words respectfully and focus on the organization and not any of the individuals involved. I'm sure they can handle the criticism; Martin even mentioned he even forwards it to them as "they appreciate being looped in." I would bet that it helps them as an organization to know how their messaging is being received by patients, and why some patients are frustrated with them.

 

[bensmith]

I want to echo 5 as well, i can sympathize with both “sides”

 

[BrightCandle]

I think the OMF has underestimated the importance of a solid diagnostic test and its value to patients. It would finally bring legitimisation to the disease, a genuine blood marker showing a dysfunction would finally bring research funding in increasing quantities. I would love for them to find a cure and diagnosis via drug application is pretty common by GPs but a diagnostic test is the best route to disease recognition. Recognition invariably leads to research funding. Failing to fund the nanoneedle is I think an error that will cost time.

 

[Rufous McKinney]

Afaik the argument was in the past that Ron is personally involved bc of his son being ill and as a chairman not able to make objective decisions, at least that's what he told us years ago.

I assume that the Stanford OMF group are trying to address issues raised in their intial grant applications, so they can be resubmitted at some point in the future.

Hopefully somebody will have a break thru, somewhere, which helps all of us.

 

[Rufous McKinney]

Failing to fund the nanoneedle is I think an error that will cost time.

I don't think the nannoneedle is a diagnostic- its for testing things that might correct the plasma signal.

There are many many potential diagnostics, but whose going to pursue verifying non deforming red blood cells? Whose going to look at numerous OTHER illnesses, which might also come with non deforming red blood cells?

So now they are describing needing some diagnostic for long haul. Wonder what will happen with that?

 

[Rufous McKinney]

So now they are describing needing some diagnostic for long haul. Wonder what will happen with that?

So this is actually exciting news:

https://www.ama-assn.org/press-cent...-better-diagnose-and-treat-long-haul-covid-19

AMA NEW POLICY on POST VIRAL ILLNESSES and SEQUELAE

Media Contact:
Kelly Jakubek
ph: (312) 464-4443
kelly.jakubek@ama-assn.org

 

[Badpack]

I don't think the nannoneedle is a diagnostic- its for testing things that might correct the plasma signal.

There are many many potential diagnostics, but whose going to pursue verifying non deforming red blood cells? Whose going to look at numerous OTHER illnesses, which might also come with non deforming red blood cells?

So now they are describing needing some diagnostic for long haul. Wonder what will happen with that?

Well MAYBE then dont call it that ? A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

https://www.pnas.org/content/116/21/10250

They acted like it was the holy grail. And to this day they haven't even cross tested 1 single other disease to see if it is even Cfs specific ( Or, what is more plausible tbh. they did, and saw it was true for many diseases and put it under the rug to still apply for grands )

 

[Rufous McKinney]

A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Ok, I see they call it both things there..sorry I'm not authorized to read that paper today....

Does it discuss testing other illnesses for comparison?

 

[Badpack]

Ok, I see they call it both things there..sorry I'm not authorized to read that paper today....

Does it discuss testing other illnesses for comparison?

Nop. They never did. In all those years. Not even once it came to their mind to maybe see if its possible that they maybe found a dud which comes up in many many other diseases. Isn't that crazy ? Wouldn't it be the very first thing anyone else would do to confirm the specificity for Cfs ? Its like finding c reactive protein for the first time and claiming its Cfs specific without even looking further. And every question about the future of the nano needle changed over time like i showed till it ended in a lol we never kept working on it for the last 3 years. Thats why i am still baffled by some statements i read here sometimes.

 

[Rufous McKinney]

Wouldn't it be the very first thing anyone else would do to confirm the specificity for Cfs

Its like a variety of symptoms we face. About 11% of the population have IBS....at least some of that type of thing gets diagnosed (altho technically I have no such diagnosis, myself). A much smaller percent have ME including IBS issues.

How do these forms of IBS vary? Whats different between the groups? Why do so many NOT Have profound fatigue and brain issues?

 

[WantedAlive]

I think the OMF has underestimated the importance of a solid diagnostic test and its value to patients.

Actually. it was OMF who first realised the importance of a solid diagnostic test that could be mass produced cheap enough to be used by every GP worldwide. It is the NIH who deserve the criticism here for turning down OMF's grant application last year for the nanoneedle, for another ridiculous reason along the likes of "if we don't have any understanding of how to treat the disease, why would we want to diagnose it better".

Folks please, lack of funding is our blockade to our progress, not the researchers. Members need direct their frustration to the right target. OMF are doing a stellar job within the resources they have available. ME/CFS is an incredibly complex disease, there's simply too much to study and not enough money. It's understandable that certain projects will get reprioritised when there's inadequate resource, and you can be sure there'll be good reason for it that we're not aware of yet. We're unbelievably lucky to have a such titan in the science world as Ron Davis researching ME/CFS, it has transformed the narrative around this disease since 10 years ago.

There are 20m people with this disease? A donation of just $1 each a year would fund OMF and I'm sure we'd see the nanoneedle and a whole lot of other progress a lot quicker. Let's not look a gift horse in the mouth, instead let's work together to help those who are trying to help us.

 

[Rufous McKinney]

A donation of just $1 each a year would fund OMF and I'm sure we'd see the nanoneedle and a whole lot of other progress a lot quicker. Let's not look a gift horse in the mouth, instead let's work together to help those who are trying to help us.

I send money to OMF monthly, and will continue to do so.

So we have $1.15 B in the NIH PASC initiative to do studies related to long haul.....

It might be tough to get $$ out of this program for diagnosis of ME. I'm thinking....

 

[Helen]

Actually. it was OMF who first realised the importance of a solid diagnostic test that could be mass produced cheap enough to be used by every GP worldwide.

I remember that too but I always wondered if that is the goal, why aren´t private or institunional investors financing the research and product development like in similar cases. I find it a bit odd that patients should fund research, that later on could be commercialized. Maybe I have got it all wrong in this case, but could it be that NIH has objections to the nano-needle project of this reason?

 

[Abrin]

But we are all in the same boat. And the researchers decided to investigate an underfunded and unpopular disease. They could always step back. But they stay with us to help us. Let us not forget this.

I know that I never, ever forget this part.

I really don't think people who didn't get sick 'in the before times' pre-OMF can truly understand how bleak the landscape used to be when it came to research.

 

[Badpack]

newest treatment would be weeks to month away.

Seems like it died of just like the nano needle.

 

[dylemmaz]

Seems like it died of just like the nano needle.

no, whitney just had the opposite reaction that was intended. said the science is almost certainly more complex than originally thought but they are learning a lot from his reaction. does not mean that this is dead because the process is being delayed. this is incredibly complex science and while i had hopes ron would get it right on the first try, it should not be unexpected that he didn’t!!

i am very hopeful, even more so hopeful now. because whitney had a very strong reaction. ron must be hitting something right, just a bit off. he will get it right at some point, i’m very confident

nanoneedle also isn’t dead. funding just hard to acquire because grants get denied for very dumb reasons

 

[perrier]

no, whitney just had the opposite reaction that was intended. said the science is almost certainly more complex than originally thought but they are learning a lot from his reaction. does not mean that this is dead because the process is being delayed. this is incredibly complex science and while i had hopes ron would get it right on the first try, it should not be unexpected that he didn’t!!

i am very hopeful, even more so hopeful now. because whitney had a very strong reaction. ron must be hitting something right, just a bit off. he will get it right at some point, i’m very confident

nanoneedle also isn’t dead. funding just hard to acquire because grants get denied for very dumb reasons

What I find hard ( in addition to lack of treatment) is the fact that there still doesn’t seem to be understanding/consensus on what is actually the reason for such a systemic disruption. Lots of theories but no consensus so that makes it hard to treat does it not? So far it’s been addressing symptoms and that has really been half baked. The greatest scientific minds around want big bucks and that is also an issue isn’t it? I really need some encouragement. Komaroff did not do it for me smart as he is. I really need some good news. Does OMF think they know what has gone wrong in the bodies of ME patients? I know the trap theory is still active. Is there anything else we ought to know. Thanks.