- Posted by: Valerie Vaz MP
- Category: News
I met with Susan Poulton and Sue Worrall who attended my pop-up surgery at Morrisons on Friday 17 March 2017 to speak to me about the Myalgic Encephalomyelitis( ME) support Group and the Nice guidelines.
Susan and Sue run a Support Group for ME sufferers and discussed a book written by Dr Sarah Myhill called ‘Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis’ and a book called ‘Science, Politics and ME’ written by Dr Ian Gibson, former MP for Norwich North, and Elaine Sherriffs.
250,000 people in the UK are affected by ME and/or Chronic Fatigue Syndrome (CFS) – that is more than those with MS and Parkinson’s put together. 25% of sufferers are severely affected from housebound to bed bound, with the most severe 5% needing total 24 hour care and tube feeding.
They raised the issue of National Institute for Health and Care Excellence (NICE) guidelines which contain no logical, evidence based treatment for ME sufferers. NICE are due to review their guidelines on ME/CFS in September 2017. They argue that NICE guidelines should use evidence based medicine that is logical, biologically plausible and with a proper scientific evidence based. I agreed to raise the issue in Parliament.
You can find out more about the Support Group at: http://walsallfibroandmelink.org.uk. They have Support Group Meetings once a month in Walsall, a Group Library and produce a monthly newsletter.