Des­per­ate need for ME re­search

Harefield Gazette - - OPINION - NORTH­WOOD RES­I­DENT Name and ad­dress sup­plied BRIAN DUFFY Goshawk Gar­dens Hayes

LIKE ap­prox­i­mately 500 res­i­dents of the bor­ough of Hilling­don, I have the dev­as­tat­ing neuro-im­mune dis­ease myal­gic en­cephalomyeli­tis (ME), also known as chronic fa­tigue syn­drome (CFS).

It is as dis­abling as mul­ti­ple sclero­sis and many peo­ple are ill for decades.

My own ill­ness started after a glan­du­lar fever in­fec­tion and I’ve been ill for six years now.

I re­cently lost the job I had for more than a decade be­cause of the ill­ness.

It can strike any racial, eth­nic or so­cio-eco­nomic group and at any age and it of­ten starts as a re­sult of an in­fec­tion.

There is now an abun­dance of ev­i­dence that the ill­ness is bio­med­i­cal, with ab­nor­mal­i­ties in mul­ti­ple sys­tems in the body, in­clud­ing the im­mune, ner­vous and hor­mone sys­tems, as well as the heart.

There is a des­per­ate need for more re­search.

Many chil­dren have the dis­ease and some do not re­cover and never have the chance to com­plete their ed­u­ca­tion, have a ca­reer, marry or have a fam­ily.

Dr Ian Lip­kin, of Columbia Univer­sity, in New York, an in­ter­na­tion­ally-renowned re­searcher, called ‘the world’s most cel­e­brated virus hunter’ by Dis­cover mag­a­zine and well-known for help­ing to con­tain the SARS epi­demic in China, is rais­ing money for a study of the bac­te­ria, viruses and fungi in the gut and their role in ME/CFS, us­ing highly so­phis­ti­cated DNA se­quenc­ing tech­niques.

He be­lieves that the gut mi­crobes are ‘where the ac­tion is’ in this ter­ri­ble ill­ness.

And in the UK (sep­a­rately), a much-needed Biobank has been set up, the first of its type in Europe, col­lect­ing blood and tis­sue sam­ples from pa­tients.

It is led by the London School of Hy­giene and Trop­i­cal Medicine, and serves as an open re­source for bio­med­i­cal re­search into ME/CFS, en­abling a wide range of re­search stud­ies.

Both th­ese ini­tia­tives could lead to a desperately needed un­der­stand­ing of what causes this dis­ease and to treat­ments.

How­ever both are un­der-funded and ur­gently in need of do­na­tions.

I have do­nated to this re­search and I hope other read­ers will too, via www.mi­crobe­dis­cov­ and them en­croach­ing on their pretty half of the bor­ough.

Thanks to the London Bor­ough of Hilling­don’s con­cept of gov­ern­ment, we are a di­vided pop­u­lace, a di­vide that will never be mended.

When we had a Hayes and Har­ling­ton Coun­cil, I can re­mem­ber a well-kept and pretty London sub­urb full of flo­ral parks and pretty open spa­ces that was the envy of many, a typ­i­cal ex­am­ple be­ing the yearly flo­ral dis­play on the south side of the Grapes Road junc­tion at Cold­har­bour Lane, a ver­i­ta­ble splash of colour­ful flow­ers, that soon to came to an end when we were kid­napped by Uxbridge.

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