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Breaking News OMF Funded Study: COVID-19 and ME/CFS

raghav

Senior Member
Messages
809
Location
India
I am posting the gist of the OMF newsletter that I got on 19th. Has this been posted already ?

Against the backdrop of COVID-19, Open Medicine Foundation (OMF) remains focused on finding the answers needed to win the fight against ME/CFS and other chronic, complex diseases. Today, because of the pandemic, an opportunity exists to increase the understanding of ME/CFS.

OMF is proud to announce a multi-year collaborative effort to unlock the triggering mechanisms of ME/CFS revealed through the study of post-COVID-19 patients. At the heart of this effort is the leveraging of the strategic relationship between our four Collaborative Research Center (CRC) Directors.

In the coming months, we will share details about the study and its progress. We will also continue to expand our efforts to raise the significant funding required to conduct this international study and to sustain the over thirty research and treatment projects currently underway at the four, OMF-funded CRCs.


The following overview was prepared by our CRC Directors, led by Ronald W. Davis, PhD. We hope that after learning more, you will choose to give today,
and support this transformative undertaking:

Conversion of COVID-19 patients to people with ME/CFS

"We are proud to announce the initiation of a study of patients with COVID-19 to monitor the course of their disease and its sequelae (the medical term for chronic conditions after an illness) to ascertain whether they convert to ME/CFS and if it occurs, to study the molecular transformation.

This will involve the collection of body fluid samples at frequent intervals, continuous health monitoring via wearables, and symptom data recorded at many separate time points over two years. The expected outcome is that some will develop ME/CFS, as many other viruses serve as triggers for the disease.

The COVID-19 pandemic is an unprecedented opportunity to study the biological factors that may determine or predict the development of ME/CFS.

In a significant percentage of patients, severe viral infection preceded their development of ME/CFS. In this current COVID-19 pandemic, it seems likely that COVID-19 may also be a trigger, and that many people will develop ME/CFS.

It is thought that up to 11% of patients who had severe infections from Epstein-Barr virus (EBV), Q fever (Coxiella burnetii), or Ross River virus (RRV), and others, develop ME/CFS. Other studies following SARS and MERS suggest an even higher proportion (50%) develop ME/CFS or Fibromyalgia.

After COVID-19 patients recover from the acute phase of their disease, they may be at significant risk for a prolonged period of post-viral fatigue, which may last six months or more before returning to their previous normal state. However, for some patients, their fatigue may fail to resolve or become even more profound over these initial six months and continue indefinitely, converting to ME/CFS.

A detailed genomic, metabolic, and proteomic analysis over time will likely provide tremendous insights to understand how to identify those pathways that can be useful to predict, diagnose, or treat ME/CFS.

The world is intensely focused on COVID-19 at the moment. The likely conversion of thousands of patients to a disease that causes life-long suffering provides a unique opportunity for the world to finally pay appropriate attention to ME/CFS."


Can we have detailed information on the 30 research and treatment projects which are currently underway ? Why is OMF so tight lipped ? If OMF gives us this info it will help boost our sagging morale and also help in generating funds for these projects.
 

MonkeyMan

Senior Member
Messages
405
Can we have detailed information on the 30 research and treatment projects which are currently underway ? Why is OMF so tight lipped ? If OMF gives us this info it will help boost our sagging morale and also help in generating funds for these projects.

Agree 100%. So fed up with the lack of updates on current research, while at the same time always getting the same generic "will likely provide tremendous insights to understand how to identify those pathways that can be useful to predict, diagnose, or treat ME/CFS" empty verbiage from the OMF.
 

Rufous McKinney

Senior Member
Messages
13,182
We will also continue to expand our efforts to raise the significant funding required to conduct this international study and to sustain the over thirty research and treatment projects currently underway at the four, OMF-funded CRCs.

This suggests they don't yet have the significant funding required,

They make no mention of any existing grants so I assume they don't have any.

They must be confident they can use their existing leverage to obtain more money thru direct fundraising.

I wonder how they intend to deal with the inherent bias in the system- we have in the US at least an adminstration which does not support having data. Its better to have no data. So getting any public funding looks problematic.

so identifying folks who got COVID and are then becoming ME victims, that same logic suggests it would be a mistake to acknowledge any long term repercussions from viral illnesses.
 

Rufous McKinney

Senior Member
Messages
13,182
Here is another new comment from OMF on a treatment study they will be announcing in the very near future (spring 2020)



During #MayMomentum, we have announced the Mestinon treatment trial and the groundbreaking study on the projected emergence of ME/CFS in post-COVID patients. Next week, we will end our campaign with the announcement of another treatment trial that builds on our researchers' previous work and demonstrates the value of your investment of time.
 

Waverunner

Senior Member
Messages
1,079
During #MayMomentum, we have announced the Mestinon treatment trial and the groundbreaking study on the projected emergence of ME/CFS in post-COVID patients. Next week, we will end our campaign with the announcement of another treatment trial that builds on our researchers' previous work and demonstrates the value of your investment of time.

In 90% of cases where scientists use the word "groundbreaking", it's the opposite.
 

Rufous McKinney

Senior Member
Messages
13,182
I think it would be potentially groundbreaking, in that we've never looked into BECOMING an ME victim.

Of course, results are first needed.

Now wondering why nobody ever tried to do this with Mononucleosis which is so common.
 

Janet Dafoe

Board Member
Messages
867
Whitney’s Facebook post on May 21:

Last time on Ativan I was told that many of you are frustrated with the speed of the progress Superman and his team are making especially regarding the Nano Needle that will hopefully be a diagnostic tool for ME/CFS using just a single drop of blood. I thought I would give you an update - since he’s my father I am privy to some inside top secret info.

The Nano Needle is being developed by Rahim Esfandyarpour who moved to the University of California as an assistant professor in Electrical Engineering. He has recruited new graduate students to work on the project which will speed things up considerably.

However, it has unfortunately seen some delays.

For one thing it’s an extremely complicated device with specific requirements. Superman doesn’t do sub-par.

It has to be inexpensive to manufacture and sell so that all laboratories will have them even Labcorp. This is very smart and generous. Ronald could easily patent the design and make a lot of money off of it. But he wants it to be available to as many people as possible. When it is ready, people are going to be coming out of the woodwork getting diagnosed with ME/CFS. The current guesstimates of both diagnosed and un-diagnosed patients are way under the reality and this way anyone will be able to see if they have ME/CFS with a simple doctor visit. (Dear God it’s hard to imagine this after what I and I’m sure most of you went through to get diagnosed).

But this device won’t just diagnose patients, Ronald has ideas to use it to test drug treatments by adding the drug to the blood sample and seeing how it reacts in the device. This would open the door wide open to fast and unrestricted drug experimentation and speed up the search for a cure in a huge way. He has in fact already found three drugs that show improvement in the blood. One is a drug typically used to treat MS. ME/CFS patients have benefited from it in the past but they become allergic, so Ron is working on a way to prevent the allergic reaction but still provide the benefit. This means the Nano Needle has already led to significant progress even as an unfinished device. Ron will be conducting clinical trials on these drugs and then give you a more detailed update himself on what drugs they are and how successful they turned out to be. He urges people not to try them before we know more because that could cause serious problems and delay the progress he’s making.

Right now the Nano Needle can only do one test per sample. They know that 50 ME/CFS patients’ blood reacted in the Nano Needle and 50 healthy people’s blood did not. Which proves that ME/CFS is a real illness - something is wrong (this is already huge). But Ronald’s team need to make sure it only reacts to CFS patients among other things. So they are working on a version with an array so they can do a lot of tests at the same time with blood samples from patients with all different illnesses.

For one thing, it is difficult to get access to these blood samples because patients with other illnesses tend to not care about solving ME/CFS (or even know about it). But it will happen, I promise.

They have made these new Nano Needles and designed a new circuit board that can do many samples at the same time. This board design was sent to both China and US manufacturers to fabricate. Unfortunately they have both been shut down because of the pandemic. They don’t know when it will be available but hopefully soon.

They also reduced the size of the device from the equivalent of a desktop computer to about the size of an iPhone. Again, this is about cost and availability. Ronald W. Davis doesn’t do sub-par.

Team Superman is working on many other projects though. I will try to tell you about some of them and some things they’ve already done in future posts.

Ron will also do a video update in the future which will of course contain more technical detail about their progress but this has been delayed by the shelter in place quarantine. We don’t want to take any risks exposing Ronald.

I’ve also been told how many of you leave comments in different places around social media asking if Ronald is looking into this or that. A lot of people seem obsessed with mycotoxins. Of course he has looked into mycotoxins (In me as well as in ME/CFS in general) Ron says the current tests are not very sensitive or accurate and may give false results which isn’t useful. He is working on and collaborating with others to develop a more sensitive and accurate test and will then start checking patients. It’s probably best to save your energy with regard to posting these questions all over, the answer is always yes, he’s looking into it or has already or is solving a problem so that he is able to do good experiments about it. Ron is very open minded. In fact it goes beyond that. It doesn’t matter what he thinks or feels about something, he follows the science. And he’s damn good at it.

I also would remind you that he puts more energy into keeping you all informed than any other researcher would. Most don’t bother informing the patient population because it doesn’t help the research. But with this particular illness there’s so much suffering and even suicide, he dedicates a fair amount of time to it. Which, keep in mind, takes away from time spent researching.

I can tell you with 100% certainty how devoted Ron is to ending ME/CFS. It’s all he thinks about day and night. While doing other things he’s running problems and ideas through the back of his mind. Even now during the pandemic he’s on conference calls literally all day. On my Ativan days he almost always says "I have to go to sleep now I have work to do tomorrow". And this is the one time a month he gets to see me.

He hates the suffering this illness causes, but he is in his element right now. This is how his whole being is meant to function. A tough problem no one can figure out and he whittles away at it and breaks it down turning a vague problem into a step by step scientific process that simply follows the truth wherever it leads.

Waitin For Superman

#MayMomentum #waitinforsuperman

Learn more about Ronald Davis’ research at the Open Medicine Foundation website https://www.omf.ngo/

Here’s a quick link to donate to the Open Medicine Foundation to support Ronald Davis’s research: https://www.omf.ngo/ways-to-donate/
 

MonkeyMan

Senior Member
Messages
405
Dear Janet and Whitney,

Words cannot begin to express my gratitude for the update that you provided above. It is like suddenly there is light shining in a room that has been dark for a long, long time. Thank you so much!!

Personally I don't think the onus should be on Superman, or on either of you, to have to provide the updates. I believe Superman should devote his time and energy to the research, 100%. Instead, the onus to keep patients informed should be on the OMF, and they frankly are not living up to the task. On the OMF website, for almost every study listed, next to "Updates and Potential" it says "Coming soon ..." as it has for years. No one at OMF seems to care. Obviously the OMF people are busy fundraising, but at a minimum they should have someone who is responsible for providing regular, detailed updates on the research they are funding.

God bless and be safe.