In an effort to move the ME/CFS field toward translational studies and clinical trials, the National Institute of Neurological Disorders and Stroke (NINDS) ME/CFS Research Roadmap was approved this week by the NANDS Council.
Read the full Report of the ME/CFS Research Roadmap Working Group of Council here.
Solve applauds this news because the Research Roadmap for ME/CFS, developed by NINDS is a huge win for all of us.
The approval of the Roadmap signals continued progress in understanding and tackling ME/CFS, and we’re hopeful that NINDS will keep pushing forward, prioritizing and funding the essential research areas to lead us to clinical trials and, eventually, effective treatments. However, we will need to continue advocating at the congressional level to ensure this positive progress is accompanied by the amount of funding necessary to make an impact on the scale needed by our community.
Overall, the Research Roadmap functions as a report delineating what should be studied next. The Roadmap approval provides advocates with a solid rationale to ask for increased funding when speaking with our congressional members, letting them know that the NIH has a plan, but it needs their support to make the plan actionable.
Solve leadership advocated for our community by participating in the ME/CFS Research Roadmap Working Group and helped develop the research priorities outlined in it. Solve also submitted public comments on the Roadmap ahead of its approval, calling for the continued inclusion of patient perspectives in future research.
For a history of the ME/CFS Research Roadmap and Solve’s involvement in the Research Roadmap Working Group, click here.
Here’s how this news positively impacts our ME/CFS community:
- Better Understanding of ME/CFS: The roadmap’s focus on chronic infections, immune system issues, nervous system abnormalities, and metabolic problems will help us understand ME/CFS better. This holistic approach is crucial for getting a complete picture of the disease.
- Improved Diagnosis: Identifying biomarkers and objective diagnostic markers means earlier and more accurate diagnoses, helping you get the right care sooner.
- Personalized Treatments: Emphasizing individualized care and precision medicine means treatments tailored to your specific needs, improving your quality of life.
- Your Voice Matters: The roadmap highlights the importance of including people with lived experience (PWLE) in research and decision-making processes, ensuring that the research is centered around what truly matters to you.
Solve is committed to supporting these initiatives by:
- Advocating for More Funding: We’ll continue to push for the financial support needed to make the roadmap’s recommendations a reality, ensuring that vital research gets the resources it needs.
- Facilitating Connections: We’ll work to bring together researchers, clinicians, and patients to foster the collaboration emphasized in the roadmap.
- Raising Awareness: We’ll educate the public, healthcare providers, and policymakers about the roadmap and its potential to transform lives.
- Supporting Your Involvement: We’ll make sure your voices are heard and integrated into the research process, reinforcing the patient-centered approach of the roadmap.
The approval of the Roadmap will improve our ability to understand, diagnose, and treat ME/CFS, ultimately improving the lives of everyone affected by this condition. We’re proud to have played a role in another victory for our community!
