Open Medicine Foundation (OMF)

Why?

 

Well personally I don't think any charity should be giving out salaries that high.

 

So, broadly, there are two models used by ME charities (and likely charities in general). One is where a charity will rely on volunteers who donate their time, while the other model is to have employees.

Both have pros and cons, the first means that more money raised goes to funding the activities of the charities, but volunteers may have other commitments that might come before their charity work, while the second means that obviously money is spent on wages but the focus of those employees is reliably on the charities activities for the time they are contracted to.

Given that both models have the potential to work well, my personal way of assessing a charity would be to look at what it achieves and deciding whether or not I'm 'happy' with what it achieves balanced against the money it receives.

 

Thanks, I mean more in terms of the size of the salaries though?

Personally I don't think anyone working for any charity should be earning a 6 figure salary.

 

A quick Google suggests that 6 figure salaries in the UK aren't uncommon although are above the average, I didn't spot anything about US charities though in my quick look.

 

Also wages in the USA are much higher on average than in the UK (about a third higher).

https://en.m.wikipedia.org/wiki/List_of_countries_by_average_wage

 

I have previously been quite shocked to hear about large "standard" US salaries amongst non-low-wage/etc earners, including of recent college graduates. Some of these salaries are running very high, especially in the geographical area relevant here.

 

Hopefully we will hear something from this…..little leaks….


https://twitter.com/user/status/1435621279898345473

 

Hopefully we can get the agenda

https://twitter.com/user/status/1435064049272868864

 

It sounds astronomical in the UK, but average graduate salaries are up to three times higher in the US. There are numerous reasons for this, but significant differences include no free-at-point-of-use healthcare, housing costs in major population centres being higher than in many parts of the UK, and a less comprehensive/more conditional social security system.

To compare them properly you'd need to strip out the healthcare and costs that we don't have in the UK, balanced against things that tend to cost less in the US – and also consider what a charitable employer would need to pay to recruit staff with the right expertise in the open market. I don't think it's straightforward, especially in a federal system with potentially large differences between individual states.

 

https://twitter.com/user/status/1436563524394774532

 

Thanks for posting Jaybee, but has anything leaked? I have not been able to find anything, except what Jaime posted.

 

Maybe someone active on Twitter could prompt @JaimeS for a short update since she doesn’t post here much anymore. Also to split hairs, this was an event of the Stanford MECFS Collaborative Research Center not necessarily OMF per se.

 

Because it was a closed meeting with information that has not been made public, Jaime has said that she can’t disclose any details. No one can. It was a chance for invited researchers to bounce ideas off of each other, rather than to report solid research results.

 

https://twitter.com/user/status/1436581279235854344


https://twitter.com/user/status/1436581281538527238


https://twitter.com/user/status/1436592816281452544


Disclaimer: I don’t know if she is talking on behalf of OMF here or only as a caretaker.

I am severe myself, have been for years. And I know how big a difference it feels for me and my closest one to cheer for some more life quality. But I have always felt that it is 100% correct for scales not to show such nuances, as it makes no difference in the big picture. I am no more able to take care of myself. I am no more able to do any “normal” things like going to a dentist, to have a routine check up at a hospital, or to spend time with friends and family and so on. I am actually thankful for my doc who is still impatient on my behalf, even if me and my closest one are in high five-mode when there at times is some more life quality but not improvement as such.

I don’t se anything constructive coming out of this, other than her husband’s research team being able to report more positive results?

I am also reminded of a non-ME related talk a couple of years ago where a Statistics Professor used the inconsistent use of tables in ME-research as an example of research not able to show comparable results. To be taken seriously, we need more use of standardized forms, not less.

 

Agenda

https://twitter.com/user/status/1438946046391037954

 

Attendees at this meeting. Vinod Khosla was there, which is good. The KDM guy was there, which is strange, isn’t he is of somewhat sketchy repute? Surprised that Fluge wasn’t there.

 

I decided a while ago I only get hopeful about things I can read. It's always hopeful behind the scenes and a few years away.

 

Well that makes it 5 years since OMF started regularly spreading messages of hope.

Open Medicine Foundation (OMF)

 

we still don't know what the 'mystery molecule' is.