Open Medicine Foundation (OMF) fundraising

Jaybee00 said:
Anybody know if this is an established technique/method? Thanks
Click to expand...
So far as I am aware the creation of such cultures is a well established thing. I am unsure about brain cells though. Tissue cultures allow a lot more testing, but you do have the risk that the processes used to create them might introduce changes. It really depends on what you have done to them. Immortalising them, for example, can permanently change their nature. Once we have such a culture it can become a test bed for rapid testing of a great many things. This is extremely valuable to rapidly advance the science.
 
strategist said:
We would like to generate brain cells in culture from patients, using stem cells, so we can test the metabolic trap in these cells. If we can put these cells into a metabolic trap, we will be able to investigate methods to get them out of the trap.
Click to expand...
Does anyone know if this is an expensive process, i.e. is this going to take years to do due to its cost?
 
strategist said:
The list of projects is impressive.
  • We continue to analyze the Severely Ill Patients Study data, which is a huge job and continues to give us new insights. We are working on publications of this data.
  • We are continuously comparing all our diagnostic tests with each other and with Naviaux’s metabolomics profile in a complex “bake-off.”
  • We have ideas about new diagnostic tests that we want to develop and test.
  • We are developing a high throughput version of the nanoneedle. Once we have a high throughput device we will be able to discover what component in the blood is causing the nanoneedle signal. This component could be causing lots of the symptoms. Once it is identified, we may be able to inhibit it or remove it from the blood. We will also be able to begin testing FDA approved drugs. These projects also need funding.
  • We need funding to develop a version of the nanoneedle that could be used to diagnose patients.
  • We would like to generate brain cells in culture from patients, using stem cells, so we can test the metabolic trap in these cells. If we can put these cells into a metabolic trap, we will be able to investigate methods to get them out of the trap.
  • We want to continue developing tests for pathogens, including RNA viruses (e.g., enteroviruses), parasites and funguses.
  • We would like to expand our metal analysis to not only test hair and blood, but also measure the amount in individual cells.
  • We have discovered a number of metabolites that have never been measured before in patients that may be directly connected to major symptoms. We would like to initiate a broader metabolomic study to investigate this.
  • We are very aware that mold is a major factor in this disease for many patients. We want to investigate this. We have a lead on possible partial funding, but need more so we can hire an expert for this important project. We need support for at least two years of salary.
  • We want to test patients before and after CCI surgery in order to get an idea of what is happening at a molecular level in these patients and how it relates to ME/CFS.
Click to expand...
All with barely any institutional funding! In fact against a strong gale of resistance and hip-deep in quicksands of apathy. Although it will take years given this is trying to do the equivalent of $200M per year funding with 1/10 of that in total. Reducing funds always means lengthening the schedule when you can't drop the quality.

In hindsight that's going to be the most impressive fact in this, a problem even harder to solve than figuring out HIV and it will have largely been solved by private funds from sick people and their families. Meanwhile research institutions basically still have their feet up their noses arguing over political nonsense. Stellar work, chumps and chumpettes.

I hope this changes how medical research is funded. The current system is so utterly unable to meet the needs. But you can always count on medicine to never learn any lessons from its own mistakes so I'm not holding my breath.
 
I would assume the difficulty is in getting MECFS brain cells, not just brain cells per se.

Maybe they could induce MECFS in the cells with Cipro or the anti-cancer compounds that @RDP mentioned in other threads
 
Jonathan Edwards said:
Growing brain cells sounds completely unrealistic. I am not sure why they do not test the trap using MR spectroscopy on the brains of PWME who are ill. If the metabolite is skewed it should show up.
Click to expand...
From what I understood from watching some ME talks such as Michael VanElzakkers, at present they can only measure a limited number of metabolites with the technology used.
 
Jonathan Edwards said:
Growing brain cells sounds completely unrealistic. I am not sure why they do not test the trap using MR spectroscopy on the brains of PWME who are ill. If the metabolite is skewed it should show up.
Click to expand...
Might it not be fruitful to suggest this to the teams. The severely ill are counting the hours until their release.
 
Jonathan Edwards said:
I think the grapevine works quite well here. Most of the things I have posted on S4ME have been picked up on if they make sense.
Click to expand...
I am glad you seem certain of this Dr Edwards. I find that sometimes researchers (in any field) like to avoid distractions, even if these might be fruitful. I have seen this in my field ever so often. I am not alone to have observed that sometimes one feels there seems to be a lack of urgency (unlike in AIDS or even Cancer). After all, these sick folks are just 'resting', and everyone likes to rest. But as you know this is unrelenting torture. And the thinking is with every input, with every collaboration--things just might move along better.

PS. Let me just add, I know of one researcher who tries very directly to contribute but the big guns are just not giving the time....
 
Last edited:
Merged thread

Dr Ron Davis shares an update on research at the OMF-funded ME/CFS Collaborative Research Center at the Stanford Genome Technology Center. He shares holiday greetings and hope with the entire ME/CFS community.

 
Last edited by a moderator:
Youtube generated transcript
welcome to the end of 2019. I'd like to
give you a little quick update with
where we are I haven't given a video for
a while one of the areas I'd like to
talk about it's a possibility that there
is an infection causing some of the
problems of certainly a number of
patients believe that's the case. We've
continued to work on this problem in the
past we have developed technology to do
in a single tube what's called multiplex
assay that
essays multiple things simultaneously we
included all of the DNA viruses and many
of the parasites.
We have since developed a methodology
anything to include the RNA viruses
which is much more difficult we've also
will include more parasites sequences
and we've developed a way to do this
also with most of the bacteria we will
do a nematode that was suggested by one
of the patients that will take us awhile
to put that together because there's no
information on this particular nematode.
What's also of of interest is that
we think that we can do all of this in a
single to that site
for ten dollars or less so it may be a
very useful tool of for many of the
researchers looking at patients .We've
also updated our data needle assay we
are trying to make it into a
high-throughput device that will be very
useful for lots of different experiments
trying to identify what's in the plasma
as well as screening various drugs also
in our efforts to look at the
metabolomics of patients. We have worked
on this for quite some time
a number of metabolites that have
previously not been analyzed and they
may be of quite significant. So we will
now explore these new metabolites to see
how significant where they are this is
the work that will be done by Chris
Armstrong and Laurel Crosby and I think
with some assistance from Robert Phair.
This could lead to new information about
the patients that may be quite
significant so we are working very hard.
We continue to be limited by the amount
of funds that are available and I know
that that's we spend a difficult we
continue to write grants. We will in fact
write more grants for the March deadline.
It's very difficult to get NIH support
largely because anything that we work on
we're not necessarily expert on and so
it's very difficult to get the clip to
generate the credibility that we
actually can do the work but we will
continue to strive to do this so I hope
you have a good as possible Holliday I
will probably be more spending most of
my time working but it's been nice to
chat with you thank you very much
Click to expand...
 
write more grants for the March deadline.
It's very difficult to get NIH support
largely because anything that we work on
we're not necessarily expert on and so
it's very difficult to get the clip to
generate the credibility that we
actually can do the work
Click to expand...
My interpretation of this is that you find an interesting result in pilot work that you want to follow up on, submit an NIH grant, but the reviewers say you are not an expert so deny. We know the make-up of ME review panels is pretty bad from Jennie Spotila's blog posts. How do we get out of this?

I now understand better why Colombia and Jackson got the center grants. Jackson has top experts in microbiome and immunology on the project, and Colombia are THE experts in viruses/pathogens

But if you don't have a long term grant, you can't hire the expert to work on it!
 
wigglethemouse said:
My interpretation of this is that you find an interesting result in pilot work that you want to follow up on, submit an NIH grant, but the reviewers say you are not an expert so deny. We know the make-up of ME review panels is pretty bad from Jennie Spotila's blog posts. How do we get out of this?

I now understand better why Colombia and Jackson got the center grants. Jackson has top experts in microbiome and immunology on the project, and Colombia are THE experts in viruses/pathogens

But if you don't have a long term grant, you can't hire the expert to work on it!
Click to expand...

Seems like Chris Armstrong has found some interesting metabolites (time 2.20 to 2.50). Possibly the could make a breakthrough; however, I think Ron said in the past that you pretty much need to have done the work before NIH will fund you to do the work!
 
FMMM1 said:
Seems like Chris Armstrong has found some interesting metabolites (time 2.20 to 2.50). Possibly the could make a breakthrough; however, I think Ron said in the past that you pretty much need to have done the work before NIH will fund you to do the work!
Click to expand...
Thanks for the timestamp. They didn't say who actually found the metabolites not measured before. They did say Chris Armstrong and Laurel Crosby would be working on it, with some assistance from Robert Phair. I assume the first two do the experiments and the last one some pathway simulation or analysis.

I think this is one of the most powerful aspects of the work of this team with funding from OMF. They don't have to wait for a grant to follow-up on a lead, they have the flexibility to get stuck right in. I'm guessing most leads will turn up blank, but one day I'm hoping they or another group hits jackpot.
 
from email
A Moment of Gratitude
Today, we want to extend a special thanks to OMF Ambassador Karin Alvtegen, one of Scandinavia’s most widely read and appreciated authors.Karin’s post on her Facebook page about her ongoing battle with ME/CFS has already raised more than $4,500 for OMF to support groundbreaking ME/CFS research!

Karin%20Cropped.jpg
Karin has been sharing her ME/CFS story as part of #FlashBackFridayOMF. This series highlights the active, vibrant, successful lives patients lead before ME/CFS forces them into a more limited existence.

In 2013, Karin came down with ME/CFS and has been severely ill. She has since become an active supporter of OMF. She describes her struggle finding appropriate medical care in Sweden, and the significant impact the disease has had on her life.

Karin also observes, “There are around 20,000 of us sick with ME in Sweden, from mild to very seriously affected. Adults, young people, and children. Only a fraction of us receives adequate care and help. Please contribute to the ME research at Open Medicine Foundation.”

Although Karin can no longer write, she has the support of the entire ME/CFS community. We’d like to sincerely thank Karin for using her powerful voice to raise awareness of just how much ME/CFS patients lose to this illness and to demonstrate the importance of funding research so patients can return to their healthy lives.
We are so grateful for the work of our international team of OMF Ambassadors
like Karin Alvtegen, American actress Amy Carlson,
Scottish musician, writer and filmmaker, Stuart Murdoch,
and Canadian performer, producer, and disability advocate, Jacqueline Ko.
Together, they are leveraging their accomplishments and profiles to help OMF raise awareness of ME/CFS and attract the resources required to win this fight!
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom