The $100 million challenge

I would ask the likes of Ron Davis and colleagues to brainstorm together to suggest the best ways to spend the money to move the field forward as effectively as possible. Such people would have the best idea of what areas could be the most productive in terms of moving the understanding of ME forward and possible treatments, thus also giving legitimacy to the disease and improving the lot of patients across the board.
 
AllenJB said:
Can you be more specific. State hypotheses.
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Nope. I don't know enough.

I would have to trust the experts in these fields to come up with appropriate hypotheses to test or exploratory studies to carry out.

There is a plan to ask for funding for a GWAS (Genone Wide Association study) by some experts I trust - Prof Chris Ponting and others. And some people like Michael Van Elzakker seem to know what they are doing with brain studies.
 
It's probably not enough, take MS for example the NIH alone spends over $100M a year on research and no cure yet.

But to answer the question I'd have them keep studying the bodies of ME sufferers and healthy people after exercise until they find something different that might point to a disease process.

After some duration of exercise my energy supply just falls off a cliff, I feel like there has be some way to measure this if we could figure out where to look.
 
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I think there are genetic studies such as a GWAS study that can help identify potential disease pathways.

Also omics studies such as metabolomics studies or transcriptomics studies that take a detailed look at the metabolic processes or which celular processes are active or dormant at a given time. I wonder if such studies also would need to be done with an understanding of the patients current symptoms and recent exertion in order to give useful results. Which may mean that ways of measuring activity and symptoms become important.

In general I think we need studies that help find potential disease pathways as we still don't have an idea about mechanisms.
 
Trish said:
Treatments that some doctors use but haven't been properly tested.
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Very much this. I don't understand why more research isn't in off-label and even for brand drugs that were developed for certain illnesses. Cymbalta is not a drug that works on Fibromyalgia. It is mainly for depression with pain and that is why psychiatrists most often were the doctors that prescribed this drug. Basically, people misdiagnosed with depression and pain were misdiagnosed with Fibro. They fixed that little problem by having psychiatrists prescribe it. Unfortunately, real Fibro patients also see psychiatrists and they would then prescribe this drug to them. For me, it caused more pain and worsened my cognition. I believe it also made my ME/CFS worse. I believe my PEM was more often and worsened as this drug drove biological mechanisms that was as if I was exerting myself continuously.

For instance, smoking marijuana is thought of as a treatment for pain, diminishing nausea, and helpful for sleep. But, little to no research on efficacy and safeness.

For example, smoking pot is widely supposed to diminish the nausea associated with chemotherapy. But, the panel pointed out, “there are no good-quality randomized trials investigating this option.” We have evidence for marijuana as a treatment for pain, but “very little is known about the efficacy, dose, routes of administration, or side effects of commonly used and commercially available cannabis products in the United States.” The caveats continue. Is it good for epilepsy? “Insufficient evidence.” Tourette’s syndrome? Limited evidence. A.L.S., Huntington’s, and Parkinson’s? Insufficient evidence. Irritable-bowel syndrome? Insufficient evidence. Dementia and glaucoma? Probably not. Anxiety? Maybe. Depression? Probably not.

Then come Chapters 5 through 13, the heart of the report, which concern marijuana’s potential risks. The haze of uncertainty continues. Does the use of cannabis increase the likelihood of fatal car accidents? Yes. By how much? Unclear. Does it affect motivation and cognition? Hard to say, but probably. Does it affect employment prospects? Probably. Will it impair academic achievement? Limited evidence. This goes on for pages.
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Is Marijuana As Safe As We Think? via The New Yorker by Malcolm Gladwell, Jan 7, 2019


I think neurological and immune system research are my other top requests. Think of all the immune system diseases we have, be it genetic, environmental (as in toxins) or acquired (like Lyme and ME/CFS) that involve the immune system. They really need to work on MS, Parkinson's, and the top three dementia; Alzheimer's, Lewy Body, and vascular.

However, $100 million wouldn't get us far for all I want; more of a jump start. More like a billion to really dig in.
 
Prospective studies with intensive blood and tissue sampling. E.g. tracking people who get glandular fever or Q fever to try to differentiate those who develop ME/CFS from those who don't. There must be some clues in cytokine and metabolite changes.

More studies on mitochondrial function in a range of cell types e.g. using the Seahorse machine, to confirm or disprove Paul Fisher's team's findings about Complex 5.

YES!! about trials of drugs that clinicians are currently using. Clinicians should be pushing for blinded studies on any treatment that they think helps some patients. We need to be crossing off things that medical systems and patients spend money on that don't really help. And perhaps identifying something that does.
 
Longitudinal studies to capture and extensively test a large number of "high confidence" ME patients early in the disease and follow them. Some percentage of the patients will improve, some will got into remission, and some will feel they have "recovered." Compare their earlier results with their results during and after improvement to see what changes may have occured.

For instance, it would be interesting to see if nanoneedle results or blood cell deformability changed in a "recovered" person.
 
Futuristic!! We really need a piece of portable headgear that is like an fMRI
that we can wear at home.
 
I would like RD to explain his "accidental discovery" concerning a patient whose blood was tested on the nanoneedle. Did he follow up on this? What medications is she taking? Why wasn't she called back or asked to return to the genome centre for further testing? Seems significant, no?

 
Ron Davis explained it pretty well, I think. Replicate the model used by the genome project. You fund long-term at something to the order of $10M/y (ideally way more but this is the minimum figure he used) to build a research center focused on solving the problem with many different specialists and resources in an open, collaborative process. You have coordination and leadership, flowing from a wide base of opinions and seeded projects that all align with the same goal.

The main reason why we have seen nothing but failure is because there is no plan, no leadership, no strategy, no focus. It just relies on random chance, that someone may be interested in the topic and may have the expertise necessary and may have the focus and grit to pursue a problem that nearly everyone in the field thinks is a waste of time and may actually have a minimal understanding of the problem and may have the talent and skills necessary to pull off a funding proposition that actually convinces people who are apathetic about solving the problem.

It's basically a version of the Drake equation, where several different things have to align in order to find the perfect set of conditions. They ALL have to align. That's almost impossible when you have a problem most in the field don't even find worth solving. Failure has been a choice and continues to be. Might as well use the lottery as a personal income strategy for all that it should work.

This is what the OMF is doing right now. They just lack the funding to pull it off but this is the right approach. Waiting for the perfect conditions to align on merely attempting to solve one tiny slice of the problem and expecting good outcomes is frankly exaggerated levels of foolishness. It's rarely the grit and talent of individuals that solve big problems. Sustained teamwork and collaboration is what does it. You have to bring in a range of talent and opinions, different angles of attack and honest efforts at picking apart the real problems without being lost on fools' errands.

Major parts of the failure has been the presence of people who are aggressively motivated at not solving the problem, because they believe they have it figured out. This is what we have in the present context, with people responding to funding proposals with ridiculous reasons simply because they personally believe it is a waste of time. It's almost impossible to succeed with the omnipresence of saboteurs. Once you eliminate those and can have focus and strategy you can begin working on hard problems.

Technically this is what the NIH project is supposed to be but it does not appear particularly focused and seems inept at leveraging collaboration. It works in silos that do not appear to have a common goal. That they chose to pass over Davis' team as a center of excellence says a lot about their inability to understand the power of collaborative work. They still have a few of the elements in the equation, but we need all of them.
 
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