My blog has been running for nearly five months now. My short film, M.E. & My Island, has recently been included in the National Videogame Museum’s Animal Crossing Diaries exhibition and I even got a mention in an article in The Verge. So, I decided it was time to design a new logo and give my website a bit of a refresh.
Counsellor In Training
My last blog article saw how Alex Flower has become a successful tattoo artist and lino print maker, whilst coping with several chronic health conditions. This month I interviewed Phil Stewart, who has been unwell with M.E. for eleven years now, and is currently training to be a counsellor. I was particularly interested to hear Phil’s story as I hope it will be an inspiration for other people with M.E. who might be considering their next steps career-wise.
Sign the petition to get the Draft Guideline published here.
UPDATE: 21st September 2021 – NICE has announced that the roundtable meeting to discuss the ME/CFS Guideline will take place on the 18th October 2021 in London and Professor Dame Carol Black has been appointed as the ‘independent’ chair.
On Tuesday 17th August 2021 NICE (National Institute for Health and Care Excellence) announced its decision to ‘pause’ publication of the update to the 2007 guideline on the diagnosis and management of ME/CFS. This announcement has caused shock, anger and bewilderment amongst the M.E. Community. The ‘pause’ is yet another affront to a patient group that has been marginalised and mistreated for years. NICE guidelines are produced to inform healthcare professionals on the diagnosis and treatment of patients in the UK and the role of the organisation is to improve outcomes for patients. Sadly, for those patients diagnosed with ME/CFS, faith in NICE is wearing very thin. The timeline below details the story of the NICE Guideline for ME/CFS so far:
Tattoo Artist and Print Maker
One of my passions in starting this blog was to raise awareness not only around M.E., as an illness, but also to shine a light on the many individuals who suffer with it. M.E. can affect anyone and even mild M.E. can have a dramatic impact on people’s lives. Despite being on a never-ending rollercoaster ride of varied and fluctuating symptoms, people with M.E. are some of the most determined, talented and inspiring people I know. In this article I interview Alex Flower, Tattoo Artist and Print Maker.
To have proper funding and research into ME/CFS
UPDATE: NICE Makes Last Minute Announcement (17th August 2021)
The updated guideline on the diagnosis and management of ME/CFS was originally due for publication in April 2021 but it was delayed until the expected publication date of the 18th August 2021. In a last minute announcement, NICE has today decided to ‘pause publication’ of the guideline, with no hint as to when it might now be updated. Read the statement from NICE here.
For further updates (since 17th August 2021), please see my newer article here.
You fall ill. You see the doctor. You have tests. You’re given a diagnosis. Then you’re given the appropriate advice, treatment and/or medications and you start to feel better again. This is the pathway we would hope to follow when we fall ill. But, sadly, when you fall ill with ME/CFS the pathway is not this straightforward.
Waiting for Superman: One Family’s Struggle to Survive – and Cure – Chronic Fatigue Syndrome by Tracie White.
Waiting for Superman is a must-read book. It is a gripping account of an acclaimed scientist who has re-directed his prestigious career in genetics into finding a cure for the disease, Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS), which is slowly and cruelly stealing his son’s life.
By May 2020 I had been ill with M.E. for eight months. I was waiting patiently for my appointment with the specialist, which had been delayed due to Covid-19, and I felt very isolated and alone. I was wondering why I was still feeling poorly and wishing there was someone I could talk to for advice and support. At that time, I had no idea that May was M.E. Awareness Month, or that on Sunday 17th May 2020 people from all around the world were raising money for M.E., and joining in with Blue Sunday Tea Party for M.E.
On a blustery and wet day in May my husband and I had an exciting trip out – an afternoon visit to Oxford! We couldn’t remember the last time I had travelled anywhere with him by car and it had been such a long time since we’ve been out together as a couple. In order to prepare for the trip, I’d booked the morning off work, so that I could rest up and be as well as possible. But this was no ordinary afternoon out…