ADVANCING A CCSVI RESEARCH AGENDA FOCUSSED ON CARE

1. ADVANCING A CCSVI RESEARCH AGENDA FOCUSSED ON CARE Kirsty Duncan PhD

2. WHAT ARE THE GOALS FOR CARE OF PEOPLE WITH MS, AND PREVENTION OF MS IN THE NEXT GENERATION? “To help patients live with the disease"? To provide patient-centred care with choice about their treatment? To improve quality of life? To prevent progression of the disease? What, if any, frameworks exist regarding early symptoms of MS, and how are these relayed to medical students and general practitioners so that MS might be picked up at the earliest stage possible? What monitoring takes place in families with a history of MS?

3. WHAT IS THE MEDICAL PROFESSION’S CURRENT UNDERSTANDING OF A PERSON'S EXPERIENCE WITH MS? To what extent are people with MS consulted regarding how they can be better served by the medical profession, what challenges have they faced in dealing with it, and how can these be overcome? To what extent are people with MS consulted to ask about their disease so the medical profession can better understand their symptoms? What are early changes in the body, perhaps years before diagnosis, the changes that take place in the intervening years, and how long does diagnosis typically take? What do people with MS think about the medical profession’s understanding of their disease? Is there a consultative process by which people with MS can express their opinion about the medical profession’s understanding of disease? Are there symptoms the medical profession are overlooking regarding MS, and could their disease have been picked up earlier and how? What steps do they take to manage their disease, and what is effective and what is not?

4. TOWARDS A BETTER UNDERSTANDING Working Groups -e.g. medical doctors/scientists who have MS -e.g. high-performance athletes (as they know their bodies extremely well) who have MS To provide a detailed description to the medical profession what it is like to be a person with MS, and more specifically, what their symptoms are, how their disease might have been better diagnosed, and how it might be better treated?

5. WHO’S ASKING THE QUESTIONS TO IMPROVE THE QUALITY OF LIFE FOR PEOPLE WITH MS? The physician? Are general practitioners willing to keep people with MS as patients, and work through complicated symptoms? What is the average length of appointment? The neurologist/MS specialist? What does the medical exam include, and does it include testing of the symptoms patients actually experience? The interventional radiologist? What is done beyond diagnosis for CCSVI and the procedure? What, if any, follow-up is done, what changes are being recorded, and how is it being determined if the procedure is making a difference? What is being done to bridge the polarization that exists between various factions of the medical community to prevent those with MS from falling through the cracks? What recommendations are actually being given to improve quality of life?

6. IS THE MEDICAL PROFESSION ASKING THE RIGHT QUESTIONS ABOUT MS? What health problems were identified BEFORE the diagnosis of MS (e.g. in childhood, early adulthood)? What, if any, types of problems (e.g. arthritis, digestive, eye, sinus problems/headaches, thyroid problems etc.), were noticed before diagnosis, and when were changes noticed? What is the cranial-facial and neck anatomy, and were dental problems ever identified? What types of pain can be distinguished? Does changing position, experiencing weather changes, flying, or going up the stairs cause any difficulties, and if so, explain? Are lesions a good measure of disease status or is there a better predictor? How well do neurological tests identify changes in the early course of the disease, and how well do tests reflect a person's total experience with the disease? What are the best scales that measure a person's quality of life, and how do medications/procedures affect measures of quality of life? What specific actions relieve symptoms, and what changes are noticed following these actions, and for how long?

7. WHAT IS THE BEST COMBINED THERAPIES FOR CCSVI FOR PEOPLE WITH MS? What should CCSVI treatment entail, and what apparatuses should be used? Is CCSVI treatment and pharmacological agents more efficacious than just the CCSVI procedure? What pharmacological agents could be used to treat hydrocephaly, venous inflammation, and iron storage, and could these agents be added to CCSVI treatment? What pharmacological agents\procedures could be used to increase perfusion and flow from the brain? What safe apparatuses could be developed to keep treated veins open, are vein grafts possible, and if so, on whom, and when should they be used? Is CCSVI treatment more efficacious with mesenchymal- or adipose-derived stem-cell infusion than just the CCSVI procedure alone? Might shunting to normalize CSF flow be added to CCSVI treatment? What methods might be added to reduce permeability of the blood-brain barrier, including pharmacological agents and stem cells? What are the effects of chelators on iron uptake and release from the brain, and could chelation therapy be an adjunctive therapy?

8. WHAT SHOULD FOLLOW-UP CARE FOR CCSVI TREATMENT ENTAIL? What is the optimal environment for recovery? What is the impact of air travel, and its concomitant changes in oxygen and pressure, on newly treated individuals? What are the best supportive care therapies following the procedure, and which therapies have the best outcomes (e.g. brain plasticity exercises, drugs, nutrition, osteopathy, physiotherapy, speech therapy, supplements)? Might dental apparatae be fashioned to increase pressure to affect outflow from the jugulars\open-up the sutures?

9. WHAT CONSIDERATION SHOULD BE GIVEN TO PREVENTION OF CCSVI IN THE NEXT GENERATION? Do vascular issues develop in utero, during childhood, or later, and, what would be the best methods to discover circulation problems at the earliest time possible to avoid health impacts at a later date? Might vascular birthmarks and tumours be an indication of potential vascular problems? Might giving vitamin D to pregnant mothers reduce the risk of children being born with, or developing, vascular problems and other conditions and, if so, what dosage is appropriate? Do antioxidants, vitamin D and omega 3 reduce vein inflammation, and will giving these to children and adolescents reduce the risk of developing vein inflammation and venous hypertension? If so, what dosage is appropriate, and what quantity should be recommended for a child with a family history of CCSVI, vascular problems or MS, etc.? What would be the optimum time to undertake CCSVI screening/treatment to avoid health impacts at a later date?

10. CALL FOR INTERDICIPLINARY CONFERENCE An interdisciplinary conference with various sectors of the medical profession (e.g. general practitioners, interventional radiologists, neurologists, nutritionists, osteopaths, physiotherapists, speech therapists, etc.) focused on: developing patient-centred care for MS bridging gaps so no one falls through the cracks improving quality of life better learning the patients’ experience with the disease better supporting their needs developing methods that measure improvements in quality of life providing educational materials of new science for people with MS