Independent Bookshop Week : Remember the MillionsMissing #ME

What if you couldn’t visit your local bookshop? What if it took you a day’s bed rest to recover from making a pot of a tea? What if you had to choose between washing your hair and reading a chapter?  When you are severely disabled even the tiniest task can be a herculean feat.

I’d like to use Independent Bookshop Week as an opportunity for a shout out to all those readers who cannot physically visit our bookshop, or any bookshop, because their disease has robbed them of the opportunity. In particular, this is a shout out to all those living with M.E.

M.E. (Myalgic Encephalomyelitis – also sometimes referred to as Chronic Fatigue Syndrome or ME/CFS) is a disease which affects three times as many people as HIV and twice as many as MS- 75% of sufferers are women. The symptoms range from severe exhaustion after minor physical effort to a complete inability to move or speak necessitating feeding by tube.

The causes are not fully understood and there is currently no cure. Most patients do not recover.

Last  week two middle-aged women spent six days walking the length Hadrian’s wall. A young couple trekked up Mount Ngun Ngun in Australia. An actress danced in the jungle in Kuala Lumpur. In Edinburgh my fingers stumble over the keyboard – Together we, and many others, moved a little, or a lot, all over the world, to raise funds and awareness for M.E

Progress in understanding the causes of M.E are accelerating around the world. Yet here in UK, since an influential biospychosocial study (Pace trials) advocating graded exercise and cognitive behavioural therapy was published, most funds have been diverted from Biomedical research and patients are denied adequate support and investigations. The press, for some obscure reason, reports almost exclusively from the angle of ME being an illness that is psychological and ignores International conferences in London/Norway/USA presenting undeniable results pointing to biological factors. 250 000 people are estimated to have M.E in UK, most receiving substandard care and support. The Pace trials have been debunked and used as an example of the worst kind of research, 100 international scientists wrote a letter to the Lancet requesting the papers be retracted.

Given the large number of sufferers and the severity of the effects of ME it’s surprising that more is not being done. Especially since there is real hope of a cure. As far as I can tell there are several reasons for this –  rear guard action by the psychiatric lobby involved in ME to protect their damaged reputations; the fact that ME does not fit easily into any one clinical department; and perhaps most importantly, because most of the sufferers are women who because of their condition have to sit invisibly at home imprisoned in their non-functioning bodies  – they do not die, but neither do they have the energy to fight.

My sister Manon is 27 years old and M.E. has robbed her of her life. The woman who worked for a major Animal Rights organisation in Hong Kong can no longer complete an email longer than a couple of sentences. The woman who climbed Machu Picchu is housebound, and in a wheelchair. She is in constant pain, a shadow of her old self on most days. When she can get through the brain fog, books are her escape. Novels, children’s stories, picture books, windows into other worlds.

Ali Smith, Laura Hillenbrand, and Florence Nightingale had ME/CFS.  Flaubert and Tennyson and Dostoevsky were all epileptic. Helen Keller was deaf and blind, and Stephen Hawking has ALS. Words in all their forms can provide the most powerful salves to suffering.

All that to say, when you’re on your next bookshop crawl spare a thought for those who can’t be with us, spare a pound for some long overdue research, spare a moment to learn a little more, to pierce a hole in society’s collective ignorance.

Perhaps you could dedicate your #IBW2017 Bookshop Crawl to the #MillionsMissing.

If you would like to learn more about M.E. I would strongly recommend the following websites.

http://www.investinme.org
https://www.omf.ngo/
http://www.virology.ws/2017/06/24/trial-by-error-continued-is-pace-a-case-of-research-misconduct/

And if you’d like to read the world that is life with M.E. the Edinburgh-based novelist Nasim Marie Jafry authored the astonishingly good State of Me. We always have copies and our profits from those booksales go toward ME research.

 

‘What did you do today?’
‘I made cheese scones and put a dead bee in the bin’
Nasim Marie Jafry The State of Me

 

 

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