How Can We Help Ron Davis?

[Jesse2233]

There are a lot of good organizations, researchers, and doctors in this field, but in my mind, and in the minds of many others here, Ron Davis and OMF are probably best positioned to find a cure.

Ron has the vision / gravitas / experience / creativity / interdisciplanary team / institutional backing / personal narrative and publicity. And most importantly he's already made extraordinary progress.

Yes we can and should continue to donate and get others to donate

But my question is what else can we do?

There is so much knowledge here from such a highly intelligent and diverse skill set (in many cases with a lot of free time).

And more existentially, we all want to get better, and likely feel a certain powerlessness in that quest. Contributing in meaningful ways, for those who are able, could be the best medicine (palliative and curative).

So... Are there ways to organize volunteer efforts? Is there low hanging fruit in terms of administration or research? And is there a preexsting model for community support of research?

I don't have any answers. But I think these are questions worth posing

@Ben Howell @Janet Dafoe (Rose49)

 

[Alvin2]

Right now i don't think there is much we can do. They are figuring out what the disease mechanism is, and except for bringing their attention to research they may not know about i think we are mostly spectators at this point. Of course donations will help them fund the research.

That said if they determine whats causing the block it could be a watershed development, and if its source is identified we will be able to explain ME/CFS for the first time. It would probably also make for a biomarker test that can be developed and distributed to every blood lab.

The assay they are working on should identify any drug that can change/damage/denature the block causing molecule(s), but if we know what it is and figure out where it comes from we can work on treating something further upstream which may lead to the cause of ME/CFS and maybe the final cure. Hence I think once we find out the block causing molecule(s) we will be able to make a much larger contribution than we can now by putting our knowledge and experience to use working on hitting it with something that will improve this condition.

I am wondering if they are only using FDA approved drugs or are they also trying botanicals/vitamins/supplements/GRAS ingredients etc. While i have avoided herbs because they are not as well researched as most drugs you never know what can make the difference and many treatments originate as isolates from plants. Many doctors consider "alternative medicine" as a joke (and they are often correct) but if something unexpected affects the block then it needs to be found no matter where it is.

 

[Jesse2233]

Right now i don't think there is much we can do. They are figuring out what the disease mechanism is, and except for bringing their attention to research they may not know about i think we are mostly spectators at this point. Of course donations will help them fund the research.

I hear that and understand there's an exploratory process going on. And I agree we should continue to donate all that we can. But I can't help wonder what else this vast reservoir of suspendended genius could contribute

 

[Comet]

Why not email the OMF and ask what they need @Jesse2233? I think they were looking for tweeters to help get the message out. I've been too sick to even help with this. They may have other things they need help with, I don't know.

 

[Ben H]

There are a lot of good organizations, researchers, and doctors in this field, but in my mind, and in the minds of many others here, Ron Davis and OMF are probably best positioned to find a cure.

Ron has the vision / gravitas / experience / creativity / interdisciplanary team / institutional backing / personal narrative and publicity. And most importantly he's already made extraordinary progress.

Yes we can and should continue to donate and get others to donate

But my question is what else can we do?

There is so much knowledge here from such a highly intelligent and diverse skill set (in many cases with a lot of free time).

And more existentially, we all want to get better, and likely feel a certain powerlessness in that quest. Contributing in meaningful ways, for those who are able, could be the best medicine (palliative and curative).

So... Are there ways to organize volunteer efforts? Is there low hanging fruit in terms of administration or research? And is there a preexsting model for community support of research?

I don't have any answers. But I think these are questions worth posing

@Ben Howell @Janet Dafoe (Rose49)

Thanks so much @Jesse2233 for this thread!

So the rate limiting step for Prof. Davis is funding. We all know this. So first is if you believe in the research then try to fund it (which i know you and many many others are, thankyou so much!). The operations need to scale up and that unfortunately needs funding.

Another way is to increase exposure for raising the funds. Family and friends, fun runs for healthy folk, I know some people do crafts and make jewellery to sell and donate to OMF.

Supporting and advocating for research and against proposed cuts is huge too. Its different in the US to over here, but I know people have been speaking with their local representatives. Janet knows much more about this.

Participate in the Q and A with Prof. Davis and help raise awareness of OMF and SGTC (Stanford Genome Technology Centre) to all your family, friends. Like the videos on YouTube, share them on social media. I find social media extremely uncomfortable now and infact use to call twitter 'twatter' but I have learned to use it as a powerful tool (despite still finding many parts of it uncomfortable).

Sign up to the OMF newsletters

Send OMF an email if you would like to help, as you rightly say there are many of us with skills that could be put to use!

I hate to go on about funds but it really comes down to that, and methods that fundamentally increase that, and awareness for OMF.

Sorry my answer is not great, cognitively very foggy but hopefully makes some sense.


B

 

[Alvin2]

Another way is to increase exposure for raising the funds. Family and friends, fun runs for healthy folk, I know some people do crafts and make jewellery to sell and donate to OMF.

How are the funds spent, in one of the videos Dr Davis said he needs talent but he needs to guarantee a job for so long, and i noticed an 800k donation recently. Are donations used as they are received or do they say we have this much, lets hire someone and know we can pay them for several years?

Send OMF an email if you would like to help, as you rightly say there are many of us with skills that could be put to use!

I would like to help but i have shaky periods of functioning plus my ability would not be as good as a real research fellow and i have cognitive impairments, would that kind of talent actually be helpful?
And i have no social media ability

 

[Research 1st]

In my opinion here is how I think we should help Ron Davis.

1) A company allows the public to buy an experimental assay on the understanding this is not FDA approved and is for 'research only'. The data is given to Ron, for free by this company. E.g. Ron learns that of X tests sent in with patients diagnosed with CFS, 41% have abnormal tests which correlates with a 'heterogenous' disorder, diagnosed by faith of the clinician, not a screening biomarker.

2) Patients sign a consent form, and agree to buy the assay at an inflated price, because the price helps fund future research, rather than make a company rich. This way, every assay sold, helps you help yourself long term.

3) Agree that you fill in a detailed patient questionnaire when sending in the blood sample, so your data can be stored on a Ron Davis et al, data bank. With this data, the group will be able to rapidly see what data correlates with 'CFS' co-morbidities that we know we have, but CDC NIH are in denial of:

For example: If 23,412 people worldwide purchase the experimental assay and send back blood we may learn that the patients report a multitude of complex and possible familial illnesses go alongside ME CFS:

30% have Arthritis within 20 years
2% have Epilepsy within 1 year
18% have Partial Seizures
5% have Ehler's Danos syndrome
14% have Asthma
3% have Anaphalaxis and have been hospitalised
76% have Allergies
13% have Cancer
29% have Dysautonomia when offered a TILT test.
11% have Diabetes within 10 years
25% have a blood relative with Autism
4% have a blood relative with MS
62% have Migraine
9% have a parent or grand parent with Dementia
56% have Borrelia or a related co infection using non government approved assays
14% had a Live Oral Polio Vaccine
12% had a genetic parent with multiple miscarriages before they were born.
30% have a genetic parent with ME CFS
15% have a genetic parents with Autoimmune disease

Then compare what the patients report to the positive/negative findings of the experimental CFS assay.
E.g was there a correlation between a very abnormal test and higher rates of Allergy? Or POTS? etc.

All of this data would be most valuable and also help accelerate research because it could lead to validating the disease sooner, as serious.

If millions of dollars can be raised through experimental not for profit assay purchases, I see no problem with the ethics of this, if the company who makes the assay is independent from Ron's group.

Lastly, I would use Kickstarter, and advertise all over social media to help raise funds via the experimental tests:

E.g. Donate 40,000 to fund construction of a garden of remembrance for patients.
E.g. Donate 25,000 and fund design of a statue in your name, in a garden of remembrance for patients.
E.g. Donate 2,000 and get 4 tests, and your name on a stone in a garden of remembrance for patients.
E.g. Donate 1,000 and get 2 tests and a signed photograph etc.
E.g. Donate 600 and get 1 test, a prototype circuit board (Ron's 1st gen bits he doesn't need),and a pen.

Etc

Personally I think patients are so impoverished due to not being able to work, they can and will only raise money for research, if it benefits them directly. For this, you need an experimental test.

 

[Murph]

@Research 1st An expensive experimental test with both personal and research benefit is a great idea, imo. Unfortunately, when that was tried by Gordon Medical recently it turned into a long thread with no shortage of people wielding their pitchforks. You'd have to proceed carefully!

 

[halcyon]

@Research 1st An expensive experimental test with both personal and research benefit is a great idea, imo. Unfortunately, when that was tried by Gordon Medical recently it turned into a long thread with no shortage of people wielding their pitchforks. You'd have to proceed carefully!

Without rehashing that whole subject, there are government regulations that cover these sorts of things so it's not super simple.

 

[Jesse2233]

Thanks so much @Jesse2233 for this thread!

So the rate limiting step for Prof. Davis is funding. We all know this. So first is if you believe in the research then try to fund it (which i know you and many many others are, thankyou so much!). The operations need to scale up and that unfortunately needs funding.

Another way is to increase exposure for raising the funds. Family and friends, fun runs for healthy folk, I know some people do crafts and make jewellery to sell and donate to OMF.

Supporting and advocating for research and against proposed cuts is huge too. Its different in the US to over here, but I know people have been speaking with their local representatives. Janet knows much more about this.

Participate in the Q and A with Prof. Davis and help raise awareness of OMF and SGTC (Stanford Genome Technology Centre) to all your family, friends. Like the videos on YouTube, share them on social media. I find social media extremely uncomfortable now and infact use to call twitter 'twatter' but I have learned to use it as a powerful tool (despite still finding many parts of it uncomfortable).

Sign up to the OMF newsletters

Send OMF an email if you would like to help, as you rightly say there are many of us with skills that could be put to use!

I hate to go on about funds but it really comes down to that, and methods that fundamentally increase that, and awareness for OMF.

Sorry my answer is not great, cognitively very foggy but hopefully makes some sense.


B

Thanks Ben! I'm with you 100 percent!

And I know everyone here is profoundly grateful for all that you do!

 

[Ben H]

How are the funds spent, in one of the videos Dr Davis said he needs talent but he needs to guarantee a job for so long, and i noticed an 800k donation recently. Are donations used as they are received or do they say we have this much, lets hire someone and know we can pay them for several years?


I would like to help but i have shaky periods of functioning plus my ability would not be as good as a real research fellow and i have cognitive impairments, would that kind of talent actually be helpful?
And i have no social media ability

@Janet Dafoe (Rose49) will be able to give you a much more concise answer than myself on this.


B