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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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A Cross-Party Debate In The UK Has Offered A Ray Of Hope For The 'Millions Missing'
Saturday 23 June 2018
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A cross-party debate has offered a ray of hope for the ‘millions missing’
There was a ray of hope shining on Thursday 21 June as some rarely-seen cross political party consensus emerged on a disease that leaves ‘millions missing’.
A debilitating disease
Myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS or just ME is a chronic systemic neuroimmune disease. It affects an estimated 17 million people worldwide and around 250,000 people in the UK. But the disease has been fraught with controversy. Not least because for decades (and often still to this day), the medical profession has not properly recognised it. So campaign groups like #MEAction and the ME Association are trying to raise awareness of the disease.
21 June was a landmark moment for people living with ME. Because a groundbreaking, near three-hour debate took place in parliament. Overarching in its content, the discussion covered many issues. What was unusual about it was the cross-party consensus that was evident. But it was also a masterclass in documenting the reasons why #MEAction has called its campaign about ME the ‘Millions Missing’.
A “hidden illness”
SNP MP Carol Monaghan, who has been pushing the issue of ME in parliament, called the debate. She said in her opening comments that:
ME… costs the UK around £3.3bn per annum. While the exact cause of the disease is unknown, numerous patients report that their ME has developed following a viral infection. ME is characterised by flu-like symptoms which can vary in severity from headaches and muscle aches to debilitating pain, extreme sensitivity to light and sound, and memory and concentration problems. For some, even touch is intolerable and tube feeding is required. Despite the number of people affected and the devastating effect of the disease on sufferers and indeed their families, it is very much a hidden illness. Characterised by some as ‘yuppie flu’ and misunderstood by doctors, the public and politicians alike.
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