#OMFScienceWednesday - Plans forward for ME/CFS Collaborative Research Center at Stanford

[Kalliope]

Update from OMF on ME/CFS Collaborative Research Center in this week's #OMFScienceWednesday.

The Stanford research team got back to work this week and this is among their plans:

• A major priority is publishing the results the team has generated so far, including the potential diagnostic platform, and the big data studies in severely ill patients and families;
• Establishing a biobank of samples where standardized analyses have been performed, that can be shared across all project teams;
• Brainstorming on each of the individual projects (T cells and molecular immunology, extended big data study in families, diagnostic and drug screening technology)
• Methods for data sharing and open communication with the patient community.

 

[Sasha]

I hope this will also show up soon on their blog:

https://www.omf.ngo/science-wednesday/

For those who don't have a FB account.

 

[Kitty]

Thanks for this – I can't read any posts at all on Facebook. It seems to have developed digital ME lately, and it's having one of its 'No posts to show' afternoons.

 

[MErmaid]

I appreciate all the legit researchers who study ME. But I would also appreciate seeing some timelines and milestones. If researchers are asking people to commit to making donations, then I feel it’s appropriate for the researchers to make commitments.

It seems there is a strong need for Project Management skills. What I also see is a lack of accountability. I am not singling out any particular researcher; it’s my overall impression of how ME research is managed.

In HiTech, engineers make the impossible possible. It’s what we have all come to expect. So what is the bottleneck in medical scientific research? Why does it take so long to find solutions? Is it the poor funding model? Is it the slow process of publishing papers? Is it ego? Is their a lack of collaboration? Just curious why we all have to tolerate the snails pace of getting treatments.

I am not convinced that throwing $200M per year will fix this. It’s seems the process needs to be cleaned up and streamlined first. And why aren’t the PwME involved in the decision making? If research is being funded by my tax dollars, then I want a say in how the money is managed. I really don’t think anyone has a clue, so why not ask us, the expert patients.

I feel that PwME need to get better organized, a grass roots effort, because I am tired of the lack of progress. I think we can do better on our own, to figure this out, and pull in the doctors/researchers that we feel have the best answers.

 

[Indigophoton]

In HiTech, engineers make the impossible possible. It’s what we have all come to expect. So what is the bottleneck in medical scientific research? Why does it take so long to find solutions?

Money and other resources (time, number of quality researchers etc) must be part of the answer.

But engineers are mostly solving well-defined, concrete problems to reach a well-defined, concrete objective.

Research in the sort of instance you are asking about involves finding unknowns, and probably unknown unknowns.

For engineers, this might be akin to needing to invent an entirely novel technology.

To discover something new is much harder than to build something, and doesn't readily fit into schedules and plans.

Some of the best discoveries are accidental, or serendipitous, or result from someone paying attention to something that everyone else ignores or overlooks, or that, on the face of it, doesn't look like anything. Progress in research isn't necessarily linear.

Generally, discoveries can't really be timetabled, unless you've already got a pretty good idea of what you're looking for (when the limiting factors might then just be resource-based).

 

[Barry]

I appreciate all the legit researchers who study ME. But I would also appreciate seeing some timelines and milestones. If researchers are asking people to commit to making donations, then I feel it’s appropriate for the researchers to make commitments.

I agree to a point, but also feel that research, especially for ME, is inevitably a journey into the unknown. So it would be unrealistic to have a waterfall project management approach, where every stage cascades on time into the next stage - lucky if it works in engineering often or not. Maybe something more like an Agile approach, you have staged phases, but what is achievable within each and following phases adapts to how things actually go.

 

[MErmaid]

I agree to a point, but also feel that research, especially for ME, is inevitably a journey into the unknown. So it would be unrealistic to have a waterfall project management approach, where every stage cascades on time into the next stage - lucky if it works in engineering often or not. Maybe something more like an Agile approach, you have staged phases, but what is achievable within each and following phases adapts to how things actually go.

Research IS a journey into the unknown, no matter if it’s chip design or medicine. Yes, the Agile approach makes more sense.

 

[MErmaid]

Money and other resources (time, number of quality researchers etc) must be part of the answer.

So we don’t have enough quality researchers?

But engineers are mostly solving well-defined, concrete problems to reach a well-defined, concrete objective.

I disagree, the iPhone and iPad were not clearly defined 30 years ago. For ME, the concrete objective are FDA approved drugs.

Research in the sort of instance you are asking about involves finding unknowns, and probably unknown unknowns.

You are saying the human body is a complete unknown? Are there not already thousands of published papers? Why would anyone choose to reinvent the wheel each time they were faced to solve a problem?

For engineers, this might be akin to needing to invent an entirely novel technology.

Exactly, engineers are smart enough to use existing data. They don’t waste time and money reinventing the wheel.

To discover something new is much harder than to build something, and doesn't readily fit into schedules and plans.

The human body is not new, really. People have discovered a lot about it already.

Some of the best discoveries are accidental, or serendipitous, or result from someone paying attention to something that everyone else ignores or overlooks, or that, on the face of it, doesn't look like anything. Progress in research isn't necessarily linear.

Why do you think there has not been progress made? Didn’t Ron Davis recently say he had a women come into his lab, that took lots of drugs, that he considered to be an “ accidental discovery”?

Generally, discoveries can't really be timetabled, unless you've already got a pretty good idea of what you're looking for (when the limiting factors might then just be resource-based).

Agree. That is where the problem lies. They don’t seem to understand what they are looking at, and lack the frame of reference to see it, even if it’s right before their own eyes.

 

[Skycloud]

I feel that PwME need to get better organized, a grass roots effort, because I am tired of the lack of progress. I think we can do better on our own, to figure this out, and pull in the doctors/researchers that we feel have the best answers.

I have some sympathy for view MErmaid but we may have different ideas about how to go about this and what direction to take before we even begin to get started. I don't know that we could do better
(we couldn't include me)

 

[MErmaid]

I have some sympathy for view MErmaid but we may have different ideas about how to go about this and what direction to take before we even begin to get started. I don't know that we could do better
(we couldn't include me)

I just finished up some research, and now have my first Pharma identified, I plan to contact. Wish me luck!!!

 

[Skycloud]

@MErmaid - good luck!!

 

[Indigophoton]

I disagree, the iPhone and iPad were not clearly defined 30 years ago. For ME, the concrete objective are FDA approved drugs.

I'm not sure of the relevance of thirty years ago, in this context, but the idea of building a phone that would also play music was a very concrete objective, and touchscreen phones, computer software, apps, and ipods all already existed, to draw upon, so the iphone was arguably a development, or application, of existing technologies rather than a novel technology.

Yet it still took Apple two and a half years to build, with their very best engineers on the job. (The novelty of the iphone was in its ease of use, which was what was game-changing).

Drugs for ME are indeed concrete, but I was referring to the need to pin down the biology, and find out what is wrong. Otherwise, we can only find drugs serendipitously or accidentally or unexpectedly (like Fluge and Mella did with rituximab, for example), or through guesswork, or trial and error (trying every possible drug, as Ron Davis apparently would like to do with his nanoneedle).

Although a serendipitous or other discovery may very well be the source of a breakthrough, by its very nature this sort of thing can't be scheduled or project managed.

Yu are saying the human body is a complete unknown? Are there not already thousands of published papers? Why would anyone choose to reinvent the wheel each time they were faced to solve a problem?

No, the biology of ME is unknown.

Discovering the biology means finding complete unknowns, as things stand now: we don't know enough to be sure of the best place to look, nor the best thing(s) to be looking for. So this is not very amenable to scheduling either.

Why do you think there has not been progress made?

I'm not sure what you mean: I didn't say I think there has been no progress made.

In my reply to your original post, I was just explaining, in answer to your original question, that scientific/medical discovery and engineering are very different types of endeavor, so can't necessarily be managed in the same way.

They don’t seem to understand what they are looking at, and lack the frame of reference to see it, even if it’s right before their own eyes.

I'm not sure what you mean here either. What are they looking at that they don't understand?

 

[MErmaid]

@MErmaid - good luck!!

Thanks so much for the encouragement!!

 

[MErmaid]

I'm not sure of the relevance of thirty years ago, in this context, but the idea of building a phone that would also play music was a very concrete objective, and touchscreen phones, computer software, apps, and ipods all already existed, to draw upon, so the iphone was arguably a development, or application, of existing technologies rather than a novel technology.

Yet it still took Apple two and a half years to build, with their very best engineers on the job. (The novelty of the iphone was in its ease of use, which was what was game-changing).

Drugs for ME are indeed concrete, but I was referring to the need to pin down the biology, and find out what is wrong. Otherwise, we can only find drugs serendipitously or accidentally or unexpectedly (like Fluge and Mella did with rituximab, for example), or through guesswork, or trial and error (trying every possible drug, as Ron Davis apparently would like to do with his nanoneedle).

Although a serendipitous or other discovery may very well be the source of a breakthrough, by its very nature this sort of thing can't be scheduled or project managed.



No, the biology of ME is unknown.

Discovering the biology means finding complete unknowns, as things stand now: we don't know enough to be sure of the best place to look, nor the best thing(s) to be looking for. So this is not very amenable to scheduling either.



I'm not sure what you mean: I didn't say I think there has been no progress made.

In my reply to your original post, I was just explaining, in answer to your original question, that scientific/medical discovery and engineering are very different types of endeavor, so can't necessarily be managed in the same way.



I'm not sure what you mean here either. What are they looking at that they don't understand?

I am choosing to take action, because simply posting to this thread will not get drugs into the FDA pipeline. If you have a better idea, feel free to pursue it, and I will cheer you on.

 

[Sunshine3]

I just finished up some research, and now have my first Pharma identified, I plan to contact. Wish me luck!!!

Good luck Mermaid!! Rooting for you and fair play to you for trying for us.

 

[Indigophoton]

I am choosing to take action, because simply posting to this thread will not get drugs into the FDA pipeline. If you have a better idea, feel free to pursue it, and I will cheer you on.

@MErmaid, I am quite puzzled; I feel we are somehow talking about different things, or at cross purposes, and not quite connecting.

I certainly don't intend to make you feel unsupported in your goals.

I looked to see if you had done an intro post (which, if you have, I would have read a while back but ME-forgotten) to see if I could get more of a sense of where you were coming from, and found your new thread on getting Pharma involved.

From that I see you have a plan in mind for something you want to do to push progress. So I will follow the discussion on that thread, to find out, when you are able to reply to Jonathan, what you have in mind.

 

[Sly Saint]

From OMF:

Linda Tannenbaum Worldwide Tour Talk
As a part of the 2017 End ME/CFS Worldwide Tour, Linda Tannenbaum,

CEO/President, spoke in six European countries and seven U.S. cities. Each visit included a presentation, Q & A session, and personal meet and greet. On the tour, Linda had the honor of meeting hundreds of patients, parents and caregivers. Each has a unique story and truly inspires us.

Linda's talks were about the groundbreaking research OMF is supporting, as well as the research of several of our collaborators. Several of her talks were recorded along the way and we thank all of our team OMF volunteers for doing so. Linda's recent talk in New York City was recorded, edited and is presented here. Thank you to fellow parent, Stephen Appelbaum, for helping OMF on behalf of his daughter Carly Appelbaum Goldberg. Volunteers like Stephen are helping OMF to spread our message of hope. We thank you all.

Linda's presentation is now available for you to view. We invite you to watch Linda's talk to learn more about the research OMF is funding and facilitating and the impact we are having on open and collaborative global research.
Through the Worldwide Tour, the OMF family has grown bigger and stronger. We are now sharing hope with people in over 100 countries! We look forward to meeting more of you in 2018.
Click here to watch the full recording."