Solve Mecfs Initiative Inc

“The finance committee is responsible for reviewing the organizations form 990 and providing comments prior to it being submitted to the internal revenue service. All members of the board of directors receive a copy of the reviewed form 990 prior to its submission to the irs, but are not required to provide comments.”

“The organizations form 990 and annual report are available on its website www.solvecfs.org. The 990 is also available on guidestar. Upon request the organization will make available copies of its audited financial statements, form 1023, governing by-laws and conflicts of interest policy.”

“Employees of the organization undergo periodic performance and compensation reviews. Compensation level is determined upon performance, market and the financial position of the organization. The president performs all reviews except for the position of president whichis done by members of the professional staff recruiting and compensation committee. Thiscommittee is comprised of the executive committee of the board. To ensure salary compensation is comparable to similar organizations, the committee consults with published salary surveys,.”

“This is marked no since there were no other officers in the organization to which this applies”

“Directors are required to sign annual conflicts of interest forms, notify the organization of any conflicts of interest and recuse themselves from discussing or voting on any matters which are a conflict for them.”

“During the year ended june 30, 2020, smci determined that it had improperly reconciled and accounted for the balance in its primary checking account as of june 30, 2019. The correction of this error decreased cash and net assets without donor restriction as of june 30, 2019 by 65,682.”

“The most important accomplishment of the year was the launch of the testing version of the You ME Registry. It was developed with input from members of the community and experts over the past couple of years. You ME collects health information from people living with ME/CFS and controls. The registry platform includes a web-based user portal that allows for easy data entry, while protecting participant privacy. After a person with ME/ CFS or someone without the disease a control registers on the website, they can complete surveys that capture their health history, quality of life, other diagnoses, treatments and outcomes.”

“They can also use a tracking smartphone application app to capture their daily experience with the disease. The You ME registry is the first of its kind to be used specifically for ME/CFS and will provide an unparalleled research platform. This database may identify triggers or causes of the diseases, subgroups of patients and ultimately may be used to develop diagnostics and treatments. In Fall 2019, Solve M.E. announced it would fund seven studies in 2020 through the Ramsay program, welcoming over 30 investigators and collaborators, including a number of early career stage scientists. Over half of these research teams included a Principal Investigator PI leading an ME/CFS study for the first time. A Ramsay Network teleconference was hosted with presentations from National Institutes of Health NIH. The results of studies that received support from the Ramsay Grant Program were published in prestigious scientific journals. Bhupesh Prusty, PhD, Robert Naviaux, MD, PhD and an international team published findings in”

“ImmunoHorizons that Human Herpesvirus 6 HHV-6 could be driving cellular energy production problems in at least some people with ME/CFS. Carmen Scheibenbogen, MD, PHD published a genetic association study that suggests an association between autoimmunity genetic risk variants and people with infectious onset ME/CFS in Frontiers in Immunology. Published ME/CFS Research Two grant applications were submitted through the Congressionally Directed Medical Research Program CDMRP to use the registry data for research and to study the emerging COVID-19 crisis. This funding mechanism was made available for ME/CFS research as a result of our advocacy work.”

“Solve ME announced a partnership with the University of California, Los Angeles UCLA Iris Cantor Womens Health Center to issue an ME/CFS specific funding announcement through their Annual Health Pilot Program. They have a demonstrated record obtaining large NIH grans as follow on to the pilot projects. Approximately 27 million return on investment for 1 million invested.”

“Solve M.E. Chief Scientific Officer Dr. Sadie Whittaker presented on the YOU M.E. Registry at the 6th Annual Science Conference held by the UK CFS/M.E. Research Collaborative CMRC.”

“As part of our ongoing efforts to increase funding for ME/CFS at the federal level, Solve M.E. added five national coalition and advocacy partnerships designed to accelerate our strategies to appropriate funds for ME/CFS medical research. As part of our expanded advocacy impact, Solve M.E. worked with our ME/CFS constituents to deliver 5,031 online messages to Congress. Together with expanded coalitions and communication programs, Solve M.E. worked to influence congressional appropriations actions and educate regarding paid family leave and telehealth legislation and Coronavirus legislation including dedicated relief for federally funded research.”

“The 4th Annual ME/CFS Advocacy week and Advocacy Day was moved to a virtual platform due to the coronavirus outbreak. 318 registered ME/CFS patient, caregivers, and supporters attended a record 245 meetings with members of U.S. Congress and their staff. In addition to sharing their personal experiences with ME/CFS, participants called on Congress to increase funding for biomedical research programs targeting COVID-19 patients who develop ME/CFS.”

“Through Solve MEs new online action toolkit, 111 people took action on Twitter and the custom ME/CFS awareness GIF was viewed 109,846 times. As part of the weeks activities, Solve M.E. hosted the second annual EmPOWER M.E. patient education roundtable. This years there was How to Navigate Disability Insurance with ME/CFS. The webinar roundtable was livestreamed and is now available on the Solve M.E YouTube channel. This years event also featured online office hours afterwards where two EmPOWER M.E panelists answered specific questions regarding disability claims and other issues.”

“Following advocacy educational presentations, community mobilization, and constituent meetings, several legislators took action to support people with ME/CFS, including Senator Ed Markey and Congressman Jamie Raskin”

“Solve M.E. launched the inaugural cohort of the Community Advisory Council CAC with 14 community members and advocates from across the United States and Canada. The CAC is a volunteer working group that provides guidance and recommendations on numerous Solve M.E. programs. It serves as an inclusive partner platform to facilitate the input, dialogue, and collaborations with representatives of the ME/CFS community.”

“In its first year, members of the CAC worked with Solve M.E. staff on issues related to ME/CFS advocacy, education, and engagement and were available to review applications for funding through the EmPOWER M.E. micro grant program.”

“Expansion of Solve M.E.s advocacy education program continued by creating and staging 6 in-person and online medical and community education presentations designed to train the ME/CFS community on contacting representatives and effective modes of communicating key ME/CFS issues. Solve M.E. also created a new page on its website, COVID-19 and the ME/CFS Community, to provide updates. information and resources during the pandemic.”