Bonjour,  We've now arrived in yet another M.E. awareness month. Year after year I've done so much to raise awareness and better understanding of M.E. (Maylgic Encephalomyelitis) and sacrificed my own health.  BUT not so this year. I'm doing something completely different and something for me. In fact I'm going on holiday and staying with some special friends for the best part of a week. Yes it will be challenging. It's been so so long time since I've been on holiday and seen my friends. I feel that I deserve some time away and a change.  I will still be sharing some of my poems ..read more

Bonjour,  Here's my second look and summary of the European ME Alliance survey and report on ME/CFS. It's a huge document and I can only read a little at a time. Plus I think that for those of you with this illness it's easier to understand in small amounts.  First of all you can check out the first part here.  You may also like to take a look at the interview done by David Tuller who interviewed the authors of the survey and report  Symptoms and severity  Severity  The survey used a severity scale of the ICC (International Consensus Criteria)  mild (appro ..read more

Bonjour,  Between May and August 2021 the European Myalgic Encephalomyelitis Alliance (EMEA) conducted an online survey of ME/CFS patients in Europe. More than 11,000 people from 44 countries responded to the survey. A small minority were from three non-European countries: the US, Canada and Australia.  Now the report has been released and translated into 15 languages.  The full report is very long and obviously difficult for people with ME/CFS to read and interpret. So, as my cognitive skills are reasonably sufficient, I thought that I would provide a brief summary of some of t ..read more

Bonjour,  I'm sorry for the absence of my blog for a while but I had a lot of personal things and health issues to deal with. It then put me into a relapse. I'm only just beginning to recover from that relapse.  I'll start by wishing you Bonne année et Bonne santé. It's not too late as we are still in the first month of 2024.  I know it's customary at the start of a new year to reflect and make new resolutions. But surely reflection can take place at any time. In fact it might be a good habit to make regular reflections, to set aside time every week, to pause and take careful th ..read more

 Bonjour,  Six years ago I published my second book of poems 'So many symptoms' about living with M.E. (Myalgic Encephalomyelitis). However, it was published in a hurry to coincide with May M.E. awareness month and was poorly done.  I've been meaning for a long time to go back and remedy that. At last I have succeeded in revamping the contents and the cover and republished. I've added some other poems, gone back and edited some of my poems, added my personal comments under some of the poems, added a contents list, page numbers and many links and references. Plus I found Sam Mill ..read more

 Bonjour,  As we arrive into May awareness week 2023 I realise that I've been writing poetry about living with M.E. (Myalgic Encephalomyelitis) for ten years now.  A lot has also happened to me personally in those ten years.  Although in 2013 I was not unfamiliar with writing poetry I wanted to start writing about me and my illness.  This was, I believe, the start of an amazing feat on my part. I had to overcome all the obstacles linked to M.E. It was to become a very difficult process and one that I wanted to abandon at times. It was a slow learning process with pitfa ..read more

 Bonjour,  Yes it's that time of year again.  We are approaching Christmas and the New Year.  For some it can be a happy and joyful time.  For some it can be a difficult time.  Some will be spending it alone.  Some will be facing many challenges.  Some may not want to or be able to celebrate Christmas and the New Year.  There maybe painful memories associated with this time of year.  Perhaps you may fondly look back and are reminded of what this time of year used to be like and long for those days again.  For those of you with a chronic il ..read more

 Bonjour,  I'm sorry that my blogs have been not been frequent this year. Since my last blog I had a bit of a health crisis with a long time for recovery. It made me reflect on my life and my priorities. A book that I've recently read has also contributed to making me reflect on my life and what changes I can make.   So here I want to review this book and hope that it also helps you to reflect and maybe make some changes.  It's entitled 'FINDING A NEW NORMAL - living your best life with chronic illness' by Suzan L. Jackson.  The book is aimed to help you live your ..read more

 Bonjour,  I'm going to write a few blogs reviewing books written about living with M.E. (Myalgic Encephalomyelitis). These books have impressed me and influenced my thinking about how I live with this illness.  The first in this series is a book entitled  'HIGHER MAINTENANCE' by Marianne Granger.  This is what I read on the back cover of the book which intrigued me  ' Author Marianne Granger suddenly found herself incapacitated at the age of 46. Devastated and with no cure for her illness in sight, she recounts how she went from victim to empowered as she learned ..read more

Bonjour,  This year, 2022, marks the 30th International May 12th Awareness Day.  The idea originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases).  M r. Hennessy was based in the US but understood that it needed to be an International event. He designated May 12 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).  May 12th was chosen as it coincided with the birth date of Florence Nightingale, the English army ..read more