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NewsTranscript
00:00Hi, I'm health reporter Sarah McCann and today I'm joined by Mikhail Van Zanten who lives
00:06with ME and Janet Sylvester from ME Action whose daughter Emma has been
00:10living with ME for 12 years to learn more about the condition and how it can
00:14impact your everyday life and what improvements are needed to help support
00:17patients with ME which is also known as chronic fatigue syndrome. So you live
00:22with ME, could you please tell me what your first symptoms were and how
00:26it first started to materialize for you? So I think I'm a bit of an exception in
00:34that I had a gradual onset. For a lot of people ME starts after an infection of
00:40some kind. In my case, probably was the case too, I just didn't realize it at the
00:46time and then the symptoms started to just slowly creep into my life. The big
00:52one that triggered me trying to find out what was going on was the fatigue. I was
00:57frequently extremely tired. Tired doesn't even come close to describing it. It's
01:02like your battery is completely empty, nothing works, it's like shut down. Also
01:09only because my wife who has fibromyalgia rheumatoid arthritis said to
01:18me look you're more fatigued than I am at times and that's not right so that's
01:23where I started looking into it. So I didn't know that it was ME at all at
01:27the time. I was very fortunate that I had a good GP who simply believed me and
01:35found Bath Centre for Fatigue Studies, looked at all the information they
01:44needed for a referral, did all the tests, sent me to all the various experts. I did
01:49sleep studies, I had ENT people look at the back of my nose and sleep
01:55apnea was ruled out.