Open Medicine Foundation (OMF)

[forestglip]

An update on the Bioquest study starting at 10:43 in the video by Dr Jonas Berquist at IIMEC17. Currently open to suggestions on what markers to add - including immunoassays. @Andy might be an opportunity for @Chris Ponting to ask to include some protein targets for DecodeME vallidation.....

New newsletter about BioQuest:

"The Heart of the Matter

- OMF has now received approval from the NIH to access plasma samples collected via the Chronic Fatigue Initiative, bringing the total number of samples for our large-scale ME/CFS biomarker project (BioQuest) to 1,000.

- BioQuest is the largest biomarker study of its kind for ME/CFS, with a geographically diverse cohort, disease controls, and well-characterized patients with doctor-confirmed diagnoses.

- This project builds on a collection of studies that highlight the potential of molecular signals in the plasma to serve as biomarker signatures for ME/CFS. BioQuest will look at metabolomics, proteomics, and cytokines with in-depth analysis, including subgrouping."

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"By combining these with samples from our Collaborative Center at Uppsala, we now have samples from 400 people with ME/CFS, 400 healthy controls, and 50 each of disease controls, including multiple sclerosis, exertional malaise (burn out syndrome), clinical depression, and Long COVID. We expect to be able to start testing these samples by the end of 2025."

"The proteomics, metabolomics, and cytokine testing on these 1000 samples is the first phase of our overall biomarker project. The ultimate goal of BioQuest is to identify a biochemical signature for ME/CFS that can be conveniently evaluated through a blood test and will differentiate ME/CFS from other illnesses with similar clinical presentations."

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Follow link for full update: https://www.omf.ngo/bioquest-update/

 

[Ravn]

Anyone know what this is all about, just hustling for donations or something else?
Got this gushy email requesting a personal phone/zoom chat (not even sure how I ended up on their mailing list though it’s possible I may have donated a very small amount a very long time ago)

Email subject is “Open Medicine Foundation Australia - Gratitude Beyond Words!” but the email might actually have been sent from the US, it’s not very clear

Dear [...]

Thank you so much for choosing to be part of the OMF family. It truly means the world to us. We're incredibly grateful for your support and the trust you’ve placed in our research.

Please rest assured that we’re doing our absolute best to find answers—and ultimately, treatments or a cure—for ME/CFS and Long COVID. We've had some exciting breakthroughs recently. Dr Christopher Armstrong, based at our collaborative centre in Melbourne, is getting closer to finding answers. In case you missed it, here is a recent video update.

Of course, none of this would be possible without the incredible people who support our mission—and that includes you. It truly takes a village to create change, and we’re so grateful to have you as part of ours.

I’d love the opportunity to get to know you better and learn more about what inspired you to support the ME/CFS community. Would you be open to a brief phone or Zoom chat sometime soon?

Please don’t hesitate to reach out if you have any questions or if there’s anything I can help with—I’m always happy to be a resource.

Warmly,

 

[Simon M]

Anyone know what this is all about, just hustling for donations or something else?
Got this gushy email requesting a personal phone/zoom chat (not even sure how I ended up on their mailing list though it’s possible I may have donated a very small amount a very long time ago)

Email subject is “Open Medicine Foundation Australia - Gratitude Beyond Words!” but the email might actually have been sent from the US, it’s not very clear

That's an interesting approach, though it seems somewhat misdirected if you've only made a small donation way back. As a former fundraiser, it seems to me like a smart move to open up conversations with people you think can give in future. Maybe they will ask for money now (pretty likely), maybe they're trying to identify people With potential to give significantly more – I'm just guessing. Maybe they've even hired somebody to try out this approach, or this is just a pilot.

More generally, building real relationships with donors it's good for fundraising, and donors often like it.

 

[Trish]

I would be put off donating by such a gushy letter and invitation to chat, but I may not be typical.

I'm much more likely to donate if there is clear concise information on past, current and future projects and how funds are allocated.

 

[Braganca]

It’s just Californian. It’s how OMF have always communicated and Linda communicates personally in a similar way. I actually had emailed Vinod Khosla a while back who is based in Silicon Valley and his assistant responded in an extremely gushy manner thanking me profusely for asking him to donate to research. It almost sounded sarcastic but it’s not.. it’s just Californian! I wouldn’t take it in a negative way. I find European communications very formal having been living in NY.

 

[Simon M]

I would be put off donating by such a gushy letter and invitation to chat, but I may not be typical.

I'm much more likely to donate if there is clear concise information on past, current and future projects and how funds are allocated.

Everyone's different. But there's a lot of evidence from testing different approaches, that building relationships and talking to people elicits more donations than simply providing that information in writing.

 

[Mij]

I made a donation a few years ago too and have received letters through regular mail once in a while thanking me for my support, including a photograph taken by Whitney.

 

[Ravn]

though it seems somewhat misdirected if you've only made a small donation way back.

Misplaced indeed. Out of curiosity I checked my bank records: 2017, US$100. That’s it. Several zeros short of making me a substantial donor prospect I would have thought

I would be put off donating by such a gushy letter and invitation to chat, but I may not be typical.

You and me both. Especially since I haven’t had any emails from them since that 2017 donation (I always unsubscribe from mailing lists), so suddenly getting this after all these years is borderline creepy

It’s just Californian

My limited experience with Californians suggests you may be right. But be that as it may, in this case they appear to be specifically targeting Australasians so some level of adaptation to our local, more understated culture would be helpful to their cause. Always write for your intended audience and all that

 

[Simon M]

You and me both. Especially since I haven’t had any emails from them since that 2017 donation (I always unsubscribe from mailing lists), so suddenly getting this after all these years is borderline creepy

Yes, borderline creepy – or "culturally insensitive". If it's eight years since you last gave, this might be a specific program to reactivate old donors.

I know they suggested a "brief" phone/video call, and maybe they just want to quickly establish if you are likely to give again. I'm assuming you are in Australia, so perhaps they thought mentioning Chris Armstrong's work was the ideal way to do it. It's pure speculation from me, but this does seem quite an odd approach from them.

 

[Sean]

A tip from an Australian to the fund seekers: We don't do hustle culture here. We hate it, actually. Selling yourself so overtly and in such gushing language, as Americans tend to do, just turns us off.

We might superficially share the same basic language, but we use it very differently at times.

 

[Hutan]

A tip from an Australian to the fund seekers: We don't do hustle culture here. We hate it, actually. Selling yourself so overtly and in such gushing language, as Americans tend to do, just turns us off.

Same for New Zealanders, on average. (Edit - just acknowledging our many fine US members who don't gush either.)

Email subject is “Open Medicine Foundation Australia - Gratitude Beyond Words!” ... Please don't hesitate to reach out if you have any questions or if there's anything I can help with - I'm always happy to be a resource.

I guess it's possible that the email was written by an enthusiastic Open Medicine Foundation Australia board member - perhaps it's not written by the OMF US staff at all. Presumably the OMFA board is at least approving the messages.

I'm interested to know who the signatory is that is making themselves available to chat and be a resource? An OMF Australia board member, or do they have an employee or volunteer available to chat? If this person would like to chat, perhaps they would like to be a resource here on the forum?

 

[Ravn]

Don’t want to put the person’s name out there but the Internet informs me they’re with OMF US

I suspect OMF are monitoring our chatter here about them anyway even if they've chosen to not engage as an organisation, they can't possibly not know about us what with Chris being a regular visitor

 

[Sean]

(Edit - just acknowledging our many fine US members who don't gush either.)

Yes, some Americans, not all.

 

[Hutan]

(further to my edit - just thinking of Australia's NCNED and the 'selling oneself so overtly' - these cultural stereotypes aren't solid by any means.)