Stanford experimental treatment didn’t work for Whitney

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hapl808

Senior Member
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1,711
It's not great news, but would be nice if the ME/CFS community didn't have just one serious academic researcher working on the problem. That's an unrealistic amount of pressure and expectation. Imagine if Covid had one researcher in the world working on it?

As I've said before, it would also be nice if Long Covid made the rest of the medical establishment get off their high horse and realize that the mechanisms are more complicated than they thought and it's going to take a lot of serious people and serious money to make a dent.

Or they could just recommend a psych consult and check off the appropriate insurance code for Somatic Symptom Disorder and go about their day. Sadly, that's my expectation from the medical community for most of us.

Our main hope from Long Covid is that while spending all that sweet grant money, someone might accidentally stumble across something that will help us.
 
Rufous McKinney

Rufous McKinney

Senior Member
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jaybee00 said:
Ugh. Bad news.
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thanks for posting.

I hope Whitney feels better sooner.

hapl808 said:
but would be nice if the ME/CFS community didn't have just one serious academic researcher working on the problem.
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There are a variety of researchers. Dr. Davis and Stanford are very important, but other researchers are also working on it, in a variety of countries, at other OMF facilities. in other places.

hapl808 said:
Our main hope from Long Covid is that while spending all that sweet grant money, someone might accidentally stumble across something that will help us.
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I would still like to better understand WHO is receiving ACTUAL grants for
Long Haul and ME CFS research? Prusty got something. Two.

Who is the central source of knowledge for WHO is doing WHAT WHERE and what funded it?

I continue my investigations, 5 minutes worth at a time.

All these people we've never heard of will likely be getting these long haul grants. On the one hand, somebody thinking outside the normal box, might stumble upon something. But its also concerning if our researchers AREN:T getting them.
 
roller

roller

wiggle jiggle
Messages
773
i understand, it must be an
- existing
- readily available
drug

its name isnt told, since we are idiots and would try it.
whitney calls himself "community guinea pig"... who is then? :thumbsup:
 
Riley

Riley

Senior Member
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177
I do struggle to be optimistic sometimes. I have another health condition for which I am following drug development, and there are dozens of companies spending tens upon tens of millions on it. Still they have not successfully brought a drug to market, but they are getting closer and closer. Theory after theory and drug after drug fail at various stages, but it does advance scientific knowledge. Sometimes I wonder, if that’s what it takes what chance do we have? Something incredibly serendipitous is going to have to occur which I admit is at least possible now thanks to OMF et al.
 
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lenora

Senior Member
Messages
4,605
Thanks, @godloves@trier and @Martin aka paused||M.E. Whitney, I'm sorry that you had to go through this experience and can only hope that you continue to improve day by day.

To the best of my knowledge, there are volunteer researchers working right along with Ron Davis and there is certainly research going on in other areas of the country at specific universities.

After what occurred last time, Whitney's quite right to keep the name of this drug to himself. We all know that as soon as something works, we'll hear about it. In the meantime, our thoughts should be with Whitney and his family. We've been close before....so let's not get our hopes up beyond a reasonable amount. That's not good for anyone.

Many of you are well trained, I understand that (or at least try to). It must seem that the answer is easy, but for as many years as I've had this, it has eluded us. Still, with the info available today I think results will filter through and you'll be able to get on with your lives. I sincerely hope so. Yours, Lenora.
 
frozenborderline

frozenborderline

Senior Member
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4,405
I'm very understanding of people pinning their Hopes on scientific research, but I think that we ought to all follow the lead of people like jen brea or jeff wood and try and figure out the etiology as a patient collective with help from some researchers and doctors. Putting all our eggs in a single, fragile basket that is low-funded is not a good idea


I'll admit I hold out Hopes for an FDA approved cure but I definitely don't pin all my hopes on the omf or Ron. It seems like too much to expect them to have a treatment soon. They have some great data but they're very hyper focused on one facet of the disease, the metabolic aspect. Mayne that's downstream from something.
 
frozenborderline

frozenborderline

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hapl808 said:
It's not great news, but would be nice if the ME/CFS community didn't have just one serious academic researcher working on the problem.
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There are many other serious academic researchers besides Ron. Too many to count. Michael van elzakker, maureen hanson , Susan levine, fluge and mella, etc. So I don't think the problem is on that end. problem is funding.

However I do agree we shouldn't all put our eggs in the ron davis basket and wait for a single idealized researcher to figure everything out.
 
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hapl808

Senior Member
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1,711
That's fair - I'm clearly not familiar with the various researchers at other academic institutions working on it.

I have a hard time being super optimistic on timelines, though. Many of those researchers seem to be (understandably) working on finding biomarkers or diagnostic tools. If you can't reliably diagnose a disorder, then no pharma company will chase a treatment because you can't even select a patient cohort. Lyme, CFS, GWI, CIRS, MCAS, post viral fatigue, Long Covid, etc.

I imagine there are fewer researchers who are working on actual treatments or cures, because without pharma backing I think the only possibility is a repurposed drug or protocol. The medical establishment will be unlikely to accept something like that for CFS regardless of efficacy, as the underlying disorder itself is barely accepted and mostly overlaps various psychiatric disorders.

Anyways, that's my somewhat cynical view. I've been on a mostly slow decline for a couple decades, though, so it's hard to imagine a cure is right around the corner. Up until five years ago I was able to still participate in society so I tried to just focus on what I could still do.
 
frozenborderline

frozenborderline

Senior Member
Messages
4,405
hapl808 said:
That's fair - I'm clearly not familiar with the various researchers at other academic institutions working on it.

I have a hard time being super optimistic on timelines, though. Many of those researchers seem to be (understandably) working on finding biomarkers or diagnostic tools. If you can't reliably diagnose a disorder, then no pharma company will chase a treatment because you can't even select a patient cohort. Lyme, CFS, GWI, CIRS, MCAS, post viral fatigue, Long Covid, etc.

I imagine there are fewer researchers who are working on actual treatments or cures, because without pharma backing I think the only possibility is a repurposed drug or protocol. The medical establishment will be unlikely to accept something like that for CFS regardless of efficacy, as the underlying disorder itself is barely accepted and mostly overlaps various psychiatric disorders.

Anyways, that's my somewhat cynical view. I've been on a mostly slow decline for a couple decades, though, so it's hard to imagine a cure is right around the corner. Up until five years ago I was able to still participate in society so I tried to just focus on what I could still do.
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I'm not optimistic on timelines but it's not bc of lack of smart academic researchers, it's just slow bc of lack of funding.

But I agree we can't just sit around and hope this slow trickle of funds and info will turn into something impressive. As a community I think we need to steer a lot of the research and stuff and build bases of knowledge. Since the official research is incredibly slow. Case in point, jeff and jen obtained remission years ago. And haven't had a single case study officially done on them, or anything like that
 
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