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M.E. Awareness Day 2013

Today is International M.E. Awareness Day 2013. Jenny is too ill to write anything this year but the following are links to the best pieces she has written about her illness. Please take the time to read them. It would be great if you could share the links on Twitter and/or Facebook today to raise […]

28th March 2013: Update

In December, after concluding that a) We were never going to be able to raise enough money for an air ambulance to see the specialist US doctor that Jenny regards as the best M.E. doctor in the world b) Jenny’s heart wouldn’t survive the flight anyway, Jenny made the decision to plump for the best […]

The dead star

Today is National Poetry Day. The theme this year: stars. Here is my new poem on that theme:

NB: This poem may not be reproduced or reposted without my permission

[Light can take millions of years to travel to Earth from stars in far away galaxies; a star could have died a long time […]

In celebration of National Poetry Day 2012

Today is National Poetry Day. What is it that makes you love one poem and hate another? For me, the most special poems are the ones that do the following:

The best moments in reading are when you come across something – a thought, a feeling, a way of looking at things – that you’d […]

Lighting the beacons of Gondor

This post is us metaphorically lighting the beacons of Gondor, hoping someone somewhere will come to our aid. If anyone knows of a doctor in the UK who is knowledgable about (and treats) the complex heart problems that can be involved in M.E. (left ventricular diastolic dysfunction, compensated idiopathic/diastolic cardiomyopathy etc) please contact us here: […]

Quick March Update

March 2012

Jenny was due to start a new medicine in January but quickly found out that it did not react well with one of the tablets that she was already on (Clonazepam, which she takes as a sleeping tablet). Also, they both prevent each other from working. So it was decided that Jenny was […]

Sign the M.E e-petition!

~ This post is by Ian Rowbory (Jenny’s father):

The M.E community are asking people to sign an e-petition which will release  and make freely available all information which is currently embargoed relating to M.E held at the National Archives.

The petition asks  for full disclosure of all documents, including correspondence with the medical profession,  […]

‘The Science of M.E. (Myalgic Encephalomyelitis) and Medical Politics.’ Colchester Saturday 3rd December

‘The Science of M.E. (Myalgic  Encephalomyelitis) and Medical Politics.’

I  am Jenny’s Mum and I went to a talk given by Dr Ian Gibson on Saturday December 3rd 2011 in Lexden, Colchester, Essex, UK. Dr Gibson had been invited to speak by the Colchester M.E. Self Help Group and he spoke on ‘The Science of […]

Voices from the Shadows- Norwich Friday 2nd of December

Voices from the Shadows

 

About 100 people attended the showing of the documentary film ‘ Voices from the Shadows’ held at The Forum in Norwich on Friday 2nd December. This moving film told the stories of  severe ME sufferers and their carers and obviously as Jenny’s father it was both upsetting but also a […]

Jenny is still alive

Jenny is still alive [this is the most positive statement that we can issue]. She is just battling to survive every day, putting all her energies in trying to get enough food down her throat each day. This takes so much out of her and weakens her a lot, but is the most basic thing […]