I want to start this week by thanking those of you who supported last weeks Column in tribute to my sister Michele, it was really appreciated, Michele loved words so it was rather apt. Apart from breathing in and out I really have no clue what I’m doing at the moment, nothing new there, some would say………..

So I’m starting back to front with the local scene first. I mentioned that I was going to head down to The Flag public house in Watford last Saturday afternoon, as Promotions & events Company Papermouth https://www.facebook.com/Papermouth were putting on an Acoustic event, so I dragged my bestie along for company & we headed to the bar for Double Bacardi & Cokes. Being a no fuss kinda woman,I  don’t like my alcohol accessorised with cherries, Umbrellas, or genetalia shaped ice cubes,  so I was unimpressed with the large chunks of lime bobbing on the surface until I took a sip, how can a piece of fruit make it taste even better? ….Pour me another Mr bartender…….Oh and the acts?

 First up was Kings Langley folkstress Daria Kulesh http://www.daria-kulesh.co.uk/  who I reviewed a few weeks ago but have  never seen live, boy what a treat. She started off by singing, while playing hand drum, while playing  bells with her feet, now that’s some impressive multi-tasking, a gene I’m sadly bereft of.  Then she grabbed the guitar to sing a beautiful song called Butterfly which she released as a charity single for DEBRA http://www.debra.org.uk/. Then she pulled out her Shrutti box…her what? Yes exactly, I’d never heard of one either, but she played it remarkably well. I was left thinking is there no end to this womans talent? The lovely thing about Daria is she doesn’t even realise how talented she is. I would certainly recommend you try and catch her live. 

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One of the stand out acts of the afternoon was Midnight Trio https://www.facebook.com/midnighttrio/timeline oh my days, so I have to be honest and say when I first saw them I thought, three young lads, probably a mediocre indie band that everyone will talk through, and with that I stuck my head back in my glass of barcardi……

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and then the lead singer opened his mouth and me and bestie looked at each other and said something not appropriate for a family newspaper. Labelling themselves Blues, jazz, soul amongst other genres I’d say it’s hard to pin one on them, but who cares when a band sounds like this, I could’ve sworn my spine was melting, their version of Frankie Vallis  “Begging” is to die for. The intro to another track  started accapella with harmonies that  made me think of the Everly brothers, before it slid back into this lazy, sexy Midnight trio sound that I would’ve happily listened to all night long. Someone needs to sign these guys & quick, I’m predicting big things for them, so get yourself down to The Horns in Watford on Monday Night 2nd November & catch them playing a set.                   Watford Observer:

The other stand out act was Burnz, normally a four piece, Joe the lead singer was performing by himself with his guitar & he was captivating. Not only does he have a seriously good vocal range, & competent guitar skills, there was something very American about his sound and performance,  

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I kept hearing hints of Hall & Oats, Billy Joel, Fleetwood Mac and other such quality acts & then if by magic  he performed a Fleetwood Mac cover. If the band ever folded, Joe showed he was more than capable of holding court as a solo artist. This is one extremely talented individual that I’m looking forward to hearing more of. You can check out the bands website here http://www.burnz.uk/ &  https://www.facebook.com/burnzuk 

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Other stella performances & artists worth checking out were Megan Devereux  https://www.facebook.com/megandevereuxmusic/   Tom Craven https://www.facebook.com/tomcravenmusic/  Sophie Ray https://www.facebook.com/SophieRayMusic/  Cian Darra https://www.facebook.com/CianDarra/   jade bird  https://www.facebook.com/JadeBirdOfficial/   and as my bestie beautifully put it “There’s not been one rubbish act”  but then that’s what you get with a Papermouth event, https://www.facebook.com/Papermouth raising the flag for quality unsigned artists…I’m already looking forward to the next.

Staying on a music theme, this weeks Gizmo/gadget/gift is the electric blues guitar box, its in a sale at only £30 and sounds rather good, for those wanting to learn a new instrument, why not give this a go?  The site even has a nifty demonstration video to wet your musical taste buds http://www.theworks.co.uk/p/instruments/the-electric-blues-guitar-box/9781743677582#/  

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There was another gift I couldn’t resist this week…for men that like living dangerously, why not get your other half some “GUESS WHAT?” weighing scales? It will show her in pictures what animal she’s similar in weight to, a panda, a pig, or hopefully for you something smaller?  £24.99 Available from  http://www.lazyboneuk.com/products/Guess-What-Scales.html. A word of warning though, either make sure she has a sense of humour, or you can run fast.


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So while the majority of the public have caught up to the fact  that  M.E is a  seriously chronic physical condition, the media it seems are still sadly lacking behind & this week saw yet another piece of cheap journalism from the telegraph:


In light of this,  I contacted leading M.E Charity Invest In M.E http://www.investinme.org/  & asked for their response and this is what they had to say:

“A disease such as ME brings with it several other challenges - distinct from the obvious debilitating effects of the disease itself.

One challenge which too frequently occurs is when a “new” piece of research on ME is publicised by the media, despite it being merely a regurgitated/rehashed version of already debunked theories which patients themselves had already shown to be poorly conducted and totally flawed.

The PACE trial is an example – a £5 million waste of scarce (public) research funding which only confirmed that the therapies for ME favoured by NICE do not in fact work (although that wasn’t actually the intention of the trial).

A lazy and ill-informed national media recently painted their usual false view of ME, relying on their trusty old stalwarts – ignorance by the public; sensational but false headlines; comments from establishment organisations more interested in maintaining the status quo; and a denigration of a vulnerable patient population who have few means to counter this misinformation. 

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We have seen it all before. So what hope can patients have that the nightmare which is ME will end?

There are several good signs in fact.

·         IiME and our patient supporters are pressing ahead with funded biomedical research that shames the “Null Field” of the PACE trial and looks for causality

·         The charity has probably the two most important research projects for ME underway in UK – a gut microbiota study to look for leaky gut and B-cell research leading to a rituximab trial  https://www.facebook.com/ukrituximabtrial

 – holding out hope that this new wave of research will open the future for treatments for ME which will restore people’s lives

·         The charity is funding more medical students to intercalate into the charity-funded research – good signs that the next generation of doctors and researchers will not carry the same bias that the Medical Research Council has allowed to influence previous research in the UK

·         The charity has organised the European ME Research Group – a group of top European researchers from the best institutes – who will collaborate and coordinate research to find the cause of ME

·         The charity will again hold a two day international research colloquium in London in June 2016 bringing the best of the best researchers to London – followed by the eleventh international ME conference in Westminster

Those whose careers have been rewarded by promoting a false view of ME as a psychological illness may receive publicity and honours.

But actions speak louder than awards.

And it is from action by supporters of a small charity with a BIG Cause that the appalling edifice of biased research which has monopolised the lives of people with ME for so long will eventually be swept away. Stay hopeful”

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                                     Til Next Week, Stay Blessed

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