It is the intent for the many clinicians and investigators at the Harvard-affiliated Hospitals to establish an institution-wide Center of Excellence for Chronic, Complex Diseases, which includes Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Post-treatment Lyme Disease (PTLD), and Fibromyalgia (FM). The concept is that most clinicians who are participating in our Center also treat patients with PTLD, FM, as well as other related but rather uncommonly seen diseases.
These other disease possibilities to include under this same umbrella are quite reasonable as there are many clinicians and investigators at the MGH and the other Harvard-affiliated Hospitals who are also internationally recognized experts and actively involved in closely related conditions including many mitochondrial disorders. This remains an intent until sufficient resources become available to support these collaborative activities.
Expansion to include Chronic, Complex Diseases
To have a significant impact upon the healthcare environment within New England and the Northeastern region, it is our opinion that a family of highly related diseases should be included under the same umbrella as described above to support a very important resource for the entire region. As a result, the terminology of Chronic, Complex Diseases makes eminent sense. Along the same lines, this more universal descriptor more efficiently meets the needs of the clinicians’ and investigators’ who are committed to the treatment of these diseases. It will also serve as a tremendous resource for patients and their healthcare providers who have been desperately seeking clinicians who acknowledge ME/CFS as a disease and who are knowledgeable about potential effective therapies. As a Director (Tompkins) of a multi-disciplinary Center of Excellence in Burns for both adults and children for 22 years at the MGH and Shriners Hospitals for Children, there is a tremendous appreciation within this new Center for the multiple disciplines and research expertise that are necessary to be integrated for the goal of comprehensive patient care for patients with chronic, complex diseases.
The multiple clinical medical disciplines that are necessary to meet the needs of these patients with chronic, complex diseases include internal medicine, primary care, infectious disease, neurology, surgery, neurosurgery, genetics, pediatrics, rheumatology, cardiology, pulmonology, psychiatry, psychology, and possibly multiple other medical specialties. Together with these clinicians, many other healthcare professionals are also critical to the care of these patients including nurses who are knowledgeable about these complex, chronic diseases, occupational and physical therapists who have experience in this patient population, and social services staff who are familiar with the particular needs for these patient populations. For a Center of Excellence (COE) to attract and retain current and future clinicians, staff, and investigators to move this field forward, requires that investigations relevant to the field of expertise become critical. These fields of investigation include the neurosciences, metabolism, genomics, proteomics, computation, physiology, and technology as well as many others.
Patient Community Participation
In the comprehensive treatment of the ME/CFS population as well as its sister diseases of PTLD and FM, an involved patient community who are well-informed with the activities of the COE are critical to the functionality of the Center. This interaction includes the community having an opportunity to have input through feedback into the effects of both the functionality of the evaluation and treatment clinical activities as well, their participation in the clinical research activities. This means accommodation for support groups of patients and families and coordination for the interface of these support groups with the clinicians and investigators of the Center.
Plan for Implementation
The COE, as described, would be a tremendous resource and opportunity for a seriously underserved series of patient communities and it would be extraordinarily well-supported by a very large group of extremely knowledgeable and committed clinicians and investigators at the Harvard-affiliated Hospitals as well as a key cohort of longstanding critical collaborators. The COE requires very substantial philanthropic support to recruit and retain the many disciplines and support services necessary for such a unique undertaking in chronic, complex diseases.
Complete implementation of a fully functional COE would be straightforward as there are dozens of clinicians and investigators who have been working independently for decades who would welcome the opportunity to work together as a very cohesive clinical and investigational internationally-recognized Center of Excellence. The clinical site for patient evaluation and care will need to be co-localized within a comprehensive unit or facility in the Hospital environment. Additional support staff will be recruited, supported, and retained within the program. Spaces for regular interactions with the investigators will be necessary. Implementation of programs for both clinical and basic research would be initiated and supported allowing most investigators to remain within their own current facilities. Intermediate partial implementation of one or more of the individual critical components of a COE will likely be successful but in the long term sustainability of the Center, full implementation will be in the best interests of both patients and clinicians in the long run.