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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Pursuing ME/CFS breakthroughs during May Awareness

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Hi guys,


Dear Friends,

What will it take to find a cure? We know that there is a lot to do!

As our #MayMomentum campaign nears its end, we thank all of our supporters that have helped us fund research that has already led to possibilities of a diagnostic tool and testing of potential treatments.

Your contributions are funding 3 Collaborative Research Centers and many interested researchers are ready to include ME/CFS in their research if funded.
We continue to push for more clinicians to be trained properly and available to see patients. We need to scale up our efforts!

Yes, we need your help! I encourage you to donate today to our #MayMomentum campaign and help us continue this urgent effort during May awareness month.
On our #MayMomentum page you will find convenient and creative ways to help you fundraise.

Our social media posts this month had a total reach of more than 359,000 people; we added more than 4,724 social media fans and connected with many new donors and subscribers; and many long-time community members have donated and launched their own fundraisers to increase this research.

With your help, world-class OMF-funded researchers can change the lives of people suffering with ME/CFS. Take advantage during #MayMomentum to make a contribution. Your support this month will help us achieve even more extensive and deeper research by the end of 2019.

Thank you for being a part of OMF’s community -- we are all in this together for a cure!

With hope for all,
Linda Tannenbaum
Founder & CEO/President




www.omf.ngo
 

Sing

Senior Member
Messages
1,782
Location
New England
Linda, and OMF, are doing such a great job! I contribute as and when I can. I do expect, that at some point, public and institutional sources of funding will enter more into these research efforts, and help, but at the present it is still mostly up to individual donors. My understanding is that until we get a biomarker for this illness, or biomarkers (plural) for subsets of it, and a more clearly defined illness, the big sources of funding don’t want to get involved.

But there is another route which is publicity—the more we can make our plight known, the more public awareness grows, the more pressure those public sources of funding will feel. After all, their official purpose is to act in the public interest—not just as subordinates to whatever the big corporate interests want to get the government to pay for, so that the private corporate interests will get the profits from the sales of drugs and other treatments. This is the crime of how we have been treated, as I look at it.

However, there is one clear benefit I see too: Our own informed researchers and clinicians, like those who are part of the Open Medicine Institute, are trying to understand this illness as accurately as possible, and are working to relieve its suffering and limitations. « Our people », working intelligently and ethically to help us, provide a better quality of inquiry and help to us than interests whose primary aim is profits, as in the case of big corporations, or an individual whose primary aim might be professional prestige. I hope that down the line, those who are working hard for us in this long exploratory period will gain the profit and prestige their work has earned—and not the latecomers who only enter when they see a clear path to those rewards. And rewards there will be, because this is a common illness, which greatly impairs the lives of many. But, however we gain the discoveries and treatments we need, we will be appreciative.

Still, let’s pitch in now, as best we are able, to help our pioneers!
 
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