A geneticist’s biggest challenge: Curing his own son

[jaybee00]

https://www.aljazeera.com/features/2021/1/2/a-geneticists-biggest-challenge-curing-his-own-son

Good article.

 

[Sushi]

Nice that it appeared in aljazeera—it was picked up by the Apple newsfeed.

 

[Reading_Steiner]

quite a long page.. I picked this part out though " Davis has developed four diagnostic tools he is currently testing and believes he will soon be able to announce a breakthrough in confirming biomarkers. "

 

[bensmith]

@Reading_Steiner biomarkers being different kinds of cfs or just a daignostic for cfs? That why there are 4?

 

[raghav]

With Davis’s help, the Open Medicine Foundation, which leads the largest non-profit effort to diagnose, treat and prevent ME/CFS and related chronic, complex diseases, raised more than $18m in 2019 and was on track to raise another $20m in 2020

Is this number correct ?

 

[Possibly James May]

@raghav,

They haven't posted their 2020 990 yet, but for 2019 it's no where near 18 million. The Open Medicine Foundation's 2019 990 shows in the gross receipts (all money received from their accounting year) section they brought in $4,286,613. The highest donation year was in 2018 with $8,908,795. The only way I can get near the 18 million number is if I add the gross receipts from 2016-19 together and that gives you $17,480,258.

 

[bensmith]

@Possibly James May this is so depressing my god.

 

[raghav]

@Possibly James May I think it is an error on the part of the journalist. Maybe that is what Janet wanted corrected in the article. From my calculation using OMF website posted info upto 2019 it was 20 million. In 2020 around october it mentioned 28 million. After that they received the 1 million for covid and me/cfs connection study and then they had 1.4 million from triple tuesday. So for 2020 it must be a little above 10 million from their data. But your data will be more accurate. Lets see what they post. They are updating OMF website quite frequently of late which is a good sign.

 

[Possibly James May]

@raghav,

Unfortunately, the OMF came no where near $10 million. On February 17th they posted on Twitter they raised $4.5 million in 2020 (also posted it on the OMF's official website).

 

[bensmith]

Hard to have hope for me personally. 4.5 million hurts : (

 

[gbells]

Hard to have hope for me personally. 4.5 million hurts : (

Lobby congress for a $200 million research budget instead of the current paltry $15 million. It won't change until ME patients and supporters demand it. Look at the hundreds of millions of dollars being wasted on longevity research for billionaires. It's all a question of priorities. ME patients are being screwed.

 

[jaybee00]

IP policies are usually set by the universities. The percent of royalties that the university takes has no chilling effect on research.

https://www.sciencedirect.com/science/article/pii/S0144818819302522

Even if OMF took a large percentage of the royalties from patents, that would be a good way to fund more research.

 

[bensmith]

Do you have any more specifics, i can still write letters.

Just wrote a letter to my senator but im in oklahoma so thats not good.

 

[seamyb]

"Whitney’s state is comparable to an AIDS patient about a week before his death. And that has been the case for the last six years."

Heartbreaking.

 

[lint7]

Are there ever public demonstrations or protests for CFS? Is there an ongoing awareness campaign of any kind?