Things are happening! The chronic fatigue syndrome (ME/CFS) and post-infectious field in general is moving forward more quickly in more different ways than it ever has in the past. We can thank some far-sighted organizations for that.
The Solve ME Initiative’s soon-to-be greatly expanded Patient Registry is a great example of an organization investing in infrastructure that benefits the entire ME/CFS field. Likewise Solve ME’s focus on advocacy at the legislative level is another example of an organization doing the work necessary to move the entire field forward. Similarly, Health Rising’s Big Map Project will soon provide ways for patients from across the globe to find and communicate with each other, find (and review) doctors, and find other resources.
The Open Medicine Foundations StudyME project is another example of an organization with its eye on the ball and is moving the entire ME/CFS field forward. The StudyME project is making it easier for research studies and clinical trials to get a leg up on one of the stickiest problems they face – simply finding people to be in their studies!
That, it turns out, is not a small task. (Who knew?) Ask Dr. Klimas – who several years into her long COVID study is still trying to find participants. Nor is it an inexpensive one. Remarkably, simply finding participants for clinical trials can eat up 40% of the trial budget! Sometimes studies and trials have to resort to advertising for patients (“Are you feeling fatigued?”) (You can imagine the kind of participants those studies get.).
ME/CFS used to have a network of local organizations that could help direct patients to studies but they are long gone. What we need is an international effort that can alert any researcher to patients near her/him who are available and now with the Open Medicine Foundation’s StudyME project, we have it.
I know of at least two ME/CFS studies that failed to get completed because they failed to find enough participants. That’s a horrible thing to have happen in a field that needs every research dollar it can get its hands on.
The Open Medicine Foundation’s StudyME project is helping ensure that THAT doesn’t happen again. It will also
- cut down on costs thus allowing larger sample sizes – and more credible results
- accelerate the speed of research by getting patients to the studies more quickly
- Improve the credibility of research findings by providing high-quality, verified ME/CFS patients
- Improve research findings by allowing researchers to find the best kind of patients for their studies
- Provide an easy way for the OMF to do further surveys that highlight the challenges of living with ME and other post-infectious diseases
- Enhance collaboration between researchers
It’s a win-win for everybody. The program literally takes 5 minutes to sign up for, no medical information is required and you simply check the kinds of studies you might be interested in. As always your contact information is kept confidential: only the OMF and the researchers associated with it will have access to it.
We know the way out of this illness for the vast majority of people goes through one road and one road only – research. You can help bring that future closer by signing up for the OMF’s StudyME project. The project is open to people with ME/CFS, Long Covid, Fibromyalgia, and other post-infection illnesses as well as healthy controls (have your family/friends sign up as well.)