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OMF’s European Tour to End ME/CFS: Day 2: Isle of Man: May 25

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Reprinted with the kind permission of Open Medicine Foundation.

Linda’s second day started with two meetings that focused on proper medical care for patients and for better school accommodations for sick children, two of the main pillars of OMF. Linda and Team OMF Isle of man met first with the team that currently treats adult ME/CFS patients, Jo Roberts OT and Jugnu Mahayana, Medical Director. The meeting went very well and both understand the disease and are very caring. This meeting was followed by another one with the Children’s team – as part of the Mental Health Division – that sees children up to 16 years of age with ME/CFS. Linda and the IOM team met with Director Kate Kirk and Dr. Proudlove and Dr. Kerry, a pediatric physiologist, and talked about what is needed. The OMF Team also discussed the possibility to refer patients to the ME clinic in Liverpool, which understands additional biological aspects of the disease. All participants spent much of their time on this discussion and listened carefully to all of our concerns for patients. Team OMF truly hopes that changes will be made and that the availability of teachers to provide accommodations for school children will improve.

After those two meetings, Linda had the pleasure of having lunch with two young patients and others before visiting Craig Morris and his wonderful parents in Port St. Mary. Craig is severely ill and homebound. Despite that, he found the strength to connect with the ME support group and together invited Linda to visit the Isle of Man and talk to their government. Linda and Craig spent some enjoyable time together talking about the success of the government meetings and in appreciation that the Minister agreed to put money towards improving ME/CFS services for patients. Linda was especially touched by Craig’s huge smile despite his disability and suffering.

Celia (Marshall, chair of the Isle of Man ME support group) and Linda were then interviewed on Manx Radio at the Isle of Man radio station. Once the short 4-minute clip of the interview is ready, OMF will make sure it is shared with all of our supporters. Linda then had an interesting private scientific meeting before going to Celia’s house. Celia was so kind as to organize a lovely dinner for the ME support group members at her home, where Linda was staying, and about 10 people were able to join. Linda went to bed late, enjoying again a full day of successful and inspiring meetings. The morning after she left on her trip to Dublin.

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