The Center of Excellence

According to the National Drug Authority, there are approximately 300,000-500,000 people living with fibro in Uganda as of 2021 (nda.or.ug). Fibromyalgia (fibro) is a chronic condition that impacts the nervous system, causing widespread pain, central fatigue, problems with memory (fibro fog), and other mental and emotional distress complications. Due to the lack of research on the condition itself, there is also a lack of treatment options, education on how to live with the condition. 

In many people with fibro, the pain can be so severe that it stops them from performing even simple tasks. This activity reduction leads to deconditioning and an overall downward spiral of despair and ill health. Many patients with fibromyalgia have to apply for disability because they cannot work. Others with fibromyalgia are fortunate to suffer from only mild discomfort and stiffness. The fatigue often associated with fibro is also varied from person to person oscillating between hypersomnia and insomnia.

The problem we intend to address is limited access. At this time there are little to no resources that specifically address the needs of the fibro community in Uganda. 

What is it?

The Virtual Coordinated Care Program will be a dual-capacity model implemented in Uganda in order to increase access to Fibromyalgia resources and treatment. 

What does it do? 

First, it establishes the Ugandan Fibro Ambassadors through Nakayenga who will serve as an onsite point of contact and translator. Second, it will establish 4 cohorts that will engage in direct and peer-to-peer support.

What processes and technology does it use? 

Participants will utilize zoom technology and google applications to identify and engage with case managers to goal setting that they have for themselves within three months, six months, and five years timelines. During their tenure in the program, they will meet weekly for case management, attend weekly cognitive, behavioral, and social-emotional groups, and nutritional webinars. 

The Center of Excellence will impact the 300,000-500,000 people in Uganda living with fibromyalgia. In addition, there will be a communal aspect to care as volunteers will be needed to assist with running groups and dietitians for nutritional webinars. This population is currently underserved as there is little known about fibromyalgia, including how to aptly diagnose and treat the condition. The COE seeks to also provide education for the medical field about the condition as it manifests in participants and key symptoms and occurrences to aid research and future understandings of the condition.

President and founder of the Fibromyalgia Care Society of America Milly Velez has over 25 years of working in the social services field. Diagnosed with fibro in 2007, she has dedicated time and energy to providing resources and fibro education since 2015.

Nakayega Miria is committed to bringing adequate fibro care to the fibro community in Uganda. She contracted an orthopedic surgeon for a private study of fibro. Based on his findings, there needs to be more research done on folks living with fibromyalgia to correct misdiagnoses and underdiagnosis.  

The Center of Excellence Program has already proven to instill in participants with better eating habits, incorporating more body movement, and mindfulness practices that have led to better pain management. The teams have the passion, dedication, and wherewithal to not only bring this program to fruition, but also ensure its longevity. 

Solve not only provides financial assistance but resources to ensure the success and maintenance of our Solve Solution. While the $10,000 would provide us with the financial ability to provide laptops and access to video software, Solve can also provide advice, mentorship, and means to make and maintain connections in Uganda. The COE also seeks to take data from the participants to educate the medical community about fibromyalgia manifestations in participants as well as compile a list of doctors who are competent in the diagnosing and treatment of fibromyalgia. 

From the comfort of the participants' homes, they can meet with each other, their case managers, and receive nutritional education. The COE provides the participants with empowerment workshops where they learn interventions that decrease the fibro fog and pain as each group is designed to target social-emotional, cognitive, or behavioral aspects.

Because the program is virtual, Nakeya can gain assistance from the COE team in America, lessening the time between the process of technical assistance and the implementation of the program. In addition, COE-Uganda can have access to US speakers and facilitators.

Traditionally Fibromyalgia has been cared for solely by the medical community. Our solution is unique as it involves an individual, whole body, whole-person approach to care using technology which makes it accessible for people living with fibromyalgia.

Our impact goals for the year are as follows:

1. To build a strong team that will be committed to creating awareness about the disorder

2. To create awareness about fibromyalgia in at least 20% of the general population 

3. To graduate four cohorts that report a decrease in fibromyalgia pain 

4. To create a standard data system for those with the fibromyalgia condition 

5. To retain funders to support the program

Our impact goals for the next five years are as follows.

1. To at least have created awareness in 80% of the general population.

2. To build a resource and treatment center for fibromyalgia in Uganda. This center will specialize in treating and providing information about fibromyalgia conditions.

3. To have a well-trained group of health workers that will specialize in treating fibromyalgia.

4. To have a well-detailed treatment prescribed for the condition.

5. To have a standard procedure for diagnosing fibromyalgia in Uganda.

6. To publish at least five research papers on fibromyalgia within the country.

For individual measurements of success, the COE has a seven-page document called “Journey Map” where we plot the course of the participants’ journey within the program. This map is completed by case managers and participants to collect demographic information and outline their goals for the next three months, six months, and five years. The goals follow the S.M.A.R.T. process-specific, measurable, achievable, relevant, and time-based. Included are risk and protective factors as well. 

We believe in a holistic approach. When participants start the program they will complete a 7-page document collecting demographic information and naming three months, six months, and five-year goals.

The short-term goal is that by joining groups and implementing various interventions (eating, meditating, encouraging better eating habits, yoga)participants will start to notice differences in mood and lowering/increased management of fibromyalgia pain. 

The long-term goal is that participants are able to utilize the tools learned from the cognitive, social-emotional, and behavior groups and nutrition webinars to maintain the management of fibromyalgia pain.

The core technology we will be using are laptops with integrated cameras as well as Zoom or any other video-based platform. In addition, we will utilize Docuware “document management software providing repository and workflow automation functions, also referred to as enterprise content management or more recently content services(docuwear.com).” With this system, we are able to automatically populate documentation, follow-up appointments, meeting attendance, appointment reminders, and case management notes. Docuware provides technology-based efficiency in program documentation and management.

Our staff consists of one Latina woman of color living with fibromyalgia and two gender non-confirmation people of color. Currently, our staff all fall under middle, lower, and working class.

In addition, as we grow, we will make a concerted effort to bring men's voices to the table as men living with fibromyalgia are often not visible in fibromyalgia spaces and discussions. 

Our model consists of a four-pillar program: a holistic approach, case management, nutrition, and aftercare via a virtual landscape. 

Clinical with a Holistic Approach

• Weekly Empowerment Groups

• Clinical Telehealth 1:1 sessions, driven by a Treatment Plan

• Psychotherapeutic Group & Peer to Peer Mentor Support

Case Management

This pillar is critical to supporting clients with reaching short, mid, and long term goals including securing items they need to reach such goals. The Case Manager helps meet needs such as housing, food scarcity, disability benefits, identification documents, health insurance, navigating the medical system, education, employment, spiritual wellness, utilities support, legal assistance, etc. 

Nutrition

Since Nutrition is an essential part of leading a healthy and well-adjusted life, the participants will be provided with webinars conducted by dietitians explaining the importance of an anti-inflammatory diet and showcasing easy meals for folks living with fibro to cook (as it can become overwhelming with inflammation in the hands and feet).

Aftercare

This pillar is one of support, assigned to an ‘Aftercare Specialist’ who follows up with a caseload of clients who have completed the program. The specialist is driven by a Program Design Framework that allows them to continue supporting clients as they practice the skills attained in the Program Phase; also addressing any adversities that arise.

In addition to providing technical assistance, the team at FCSA also plans to identify sustainable grants and donations for the virtual coordinated care program in Uganda.

Our plan is to work collaboratively in identifying local and federal funding in Uganda and in the United States to assist with financial sustainability.