important DecodeME update #8 …
decodeME are doing a series of information posts in the lead up to the start of the DecodeME study. They are encouraging us to share them as much as we can.
Therefore, I will share them each time they are posted …. exactly as they are originally written by,
Blog article to follow is Copyright © DecodeME (2021).
Updated May 2022. From https://decodeme.org.uk
Why DecodeME Matters To People With ME/CFS
ME/CFS advocacy is a non-stop effort. Many advocates and online campaigners work tirelessly year-round to raise awareness of this significantly debilitating medical condition, and some have done so for decades. However, the annual ME Awareness Week in May is a time when the whole ME community and ME charities band together to advocate for change and make our voices heard.
We know that DecodeME is providing long-awaited hope for many people with the condition. So, in the run up to this year’s ME Awareness campaigns, we asked our DecodeME social media ambassadors to share why DecodeME matters, and what the study means to them… within the 280 character count of a single Tweet. Here’s what they had to say:
“#DecodeME matters to me because it’s only through biomedical research into causes that we’ll find a cure. Simply put, to me, DecodeME is Hope and I am truly grateful to all involved.” – Amy Louise Hanson
“#DecodeME matters to me because after 16 years of being a #PWME I’m hoping this is the start of research into finding a cure.” – Susan Angel
“#DecodeME matters to me because in the 25 years I’ve been ill it’s the first sign of real hope.” – Anonymous
“#DecodeME matters to me because I have many friends struggling to live with this illness. It would be amazing to understand ME so we can all get our lives back.” – Lisa Walker
“#DecodeME matters to me because it will help sufferers feel like we are being heard. It will be a big step forward to helping future patients.” – Michael Brooks
“#DecodeME matters to me because once, a 7-mile walk was possible; now being unable to get to and from bus stops I use a mobility scooter. I am 81 and just want to know why, and hope that eventually there may be treatment.” – Marjorie
“#DecodeME matters to me because it’s so important to understand how to treat such a poorly understood and largely invisible life-changing condition. I’m a scientist by training and I have seen myself the importance of sound research and the benefits it can give.” – Jeannie
“#DecodeME matters to me because I have needed to make very difficult choices due to my health. It has been an isolated and solitary journey. Living with my condition has impacted heavily on my mental health, self esteem and confidence. Research is essential.” – Susan Powell
“#DecodeME matters to me because it will address a long overdue gap in thorough assessment of genetic factors, and help convince remaining sceptics, eventually leading, we hope, to a treatment that will benefit both people with ME/CFS and Long Covid.” – Elaine Giles
“#DecodeME matters to me because, as a long-term sufferer and a retired medical practitioner, I’ve been all too aware of issues related to misdiagnoses, lack of provision, care and treatments. This trial offers hope, and hope inspires us to carry on during difficult times.” – Eiry Thomas
“#DecodeME matters to me personally because I’d love to live again instead of just exist. I’m hopeful that this study will provide proof and one day a cure for this awful disease. Thank you for all those taking part in the participation and the collation of the information.” – Rachel Grainger-Horne
As you can see, hope and empowerment are common themes throughout the responses, with many people anticipating that DecodeME will mark the beginning of much-needed high-quality biomedical research that will eventually help them to gain their lives back. As a team, we very much hope for these exact same things – after all, the more we understand about the nature of ME/CFS, the better we can support those affected by it.
In the meantime, we’d love you to join in during ME Awareness week too and to know what DecodeME means to you. You can join in by posting a Tweet beginning with ‘#DecodeME matters to me because…’ and sharing your thoughts. Please post your responses on social media on ME Awareness Day on May 12th, and make sure you include the hashtag #DecodeME . We look forward to reading your responses and creating more awareness across social media of how important biomedical research is to people with ME/CFS.
In the meantime, you can find out more about DecodeME and keep updated by visiting our website and signing up for updates.
Thank you so much for your patience. We can’t wait to share the study with you soon.