BBC Radio Bristol interviews and Uk producer Lindsey Dryden at 2hrs 21mins: bbc.co.uk/programmes/p05 #MECFS #Unrest
Conversation
I wish I had deeply, deeply rested when I first got sick. That I had gotten dx'd with POTS early.
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Once I did a VO2 max test and received the advice to keep my HR below 100 bpm, it really helped me learn how to pace.
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Some days I'd wake up with a resting HR of 72 pbm. Sometimes it was 120 bpm just from lifting my head.
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It helped me to know "this is a day I can get out of bed and do a bit" and this is a day I can't.
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What we weren't able to get to on the show is that patients in the US have access to a much wider range of treatment options
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At least if you can afford it and have the persistence/wherewithal to seek it out.
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In my case, antivirals and mestinon have been life-changing.
If I lived here in the UK, I would still be bedridden 24 hours a day.
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I think is incredibly important to meter activity based on physiological responses, not subjective ones
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Mestinon briefly energized me but then agitation and a spike in blood pressure. Maybe finally get some benefit pediatric dose Valcyte
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Do u get tired/wired?Have tight or rigid muscles?I get these..but have days where legs weak,feel muscles too relaxed..myasthenia gravis-like
I think as general rule rest is important n beginning but 1st yr I continued 2 work n live n 5th floor walk up & recovered 4 a yr Go figure
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When my daughter became ill in the '90s, Dr. Bell, the best on pediatric ME/CFS, said to keep life as "normal" as possible. We all guess.
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Point Michael is you have access to these medications. Patients in the UK do not.
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get tight/rigid muscles?I do oftn..but hav days legs weak,like muscles 2 relaxd..myasthenia gravis-like.Mestinon=contraction?
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