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Benefits and Challenges
Dear fellow ME patients,
The ME International (ME-I) Board recently made a challenging decision to join the Long COVID Alliance. This Alliance, led by Solve ME/CFS, has a goal of making sure that ME/CFS patients are considered in the upcoming NIH Long COVID research funding awards. The US Congress appropriated $1.15 billion to the NIH for this research. At this time there are 50 organizations including ME-I who have signed this Alliance.
We are participating in this alliance BECAUSE it is important for: The ME patient population as defined by the IC Primer NOT be confused with the ME/CFS patient population.
There are valid concerns raised by the patient community since little progress has been made with respect to differentiating ME from CFS. We are aware that the decision may be viewed as diffusing our emphasis on ME. It is definitely not the case. ME-I remains committed to the position of supporting ME patients as defined by the IC Primer.
ME-I views the IC primer as a strong foundation for defining what ME is and how best to diagnose and treat it. We believe that this foundation provides a solid framework that can be built on with international patient input.
In making the decision to join the Long COVID Alliance, we considered the following benefits and challenges:
ME-I is committed to managing these challenges by:
At the end of the day, we felt it was important to have a voice at the table so we can collaboratively encourage NIH funding to be spent in a way that will benefit the ME community.
If you have questions or concerns, please email them to firstname.lastname@example.org. We look forward to your insights and will be requesting further input on ME-International social media sites.
Jim Lutey, President