A birthday wish

This week I turned the ripe old age of 27. I don’t usually make a fuss over my birthday, primarily because it reminds me of how long I’ve been sick, but this year I have a special request.

As you may or may not know, I am sick and getting sicker. Since my last relapse in October, I have lost a great deal of functionality. The regression shows no signs of stopping, and I am very scared where I will end up.

So today I am asking you, if you can, to make a donation to the National Centre for Neuroimmunology and Emerging Diseases (NCNED). This medical research centre based at Griffith University, Queensland, has already discovered biomarkers for ME/CFS, and has just announced they will be working on a diagnostic test for the disease.

This research means the world to ME/CFS sufferers such as myself. Medical help is limited, and research into this disease is the only hope I and other severely affected patients have for relief from this terrible illness.

You can donate to the NCNED here, or if you are overseas and prefer a US-based organisation, the Solve ME/CFS Initiative funds research into biomarkers.

Thank you for your support over the past few months of blogging, and here’s to many more!

The NCNED building at night, illuminated in blue light.
The NCNED lights up blue for ME Awareness Day.


PS Seamstress Erin is currently hosting an initiative called #sewingcommunity gives. She is encouraging other sewists to donate to a cause of their choice, in the name of the sewing community. I’m unsure if medical research counts, but as she encourages to give to whatever organisation you wish, it might be worth checking out her post. If you fill out her survey after donating, you go in the running to win a sewing pattern bundle.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

4 thoughts on “A birthday wish”

  1. Siobhan, I gave what I could and I am sure others will too. I’ve told you before I’ve Lupus and Fibromyalgia as has a cousin in Melbourne and any research into these weird autoimmune system diseases can only be a good thing. I’m a mature woman who has certainly not suffered as you have, my meaning being, you are a young woman with what I feel should be a good life ahead of her and not one crippled by the pain and uncertainty of what each day brings. I’m fortunate to have lived a pretty good, if quite eventful life…..read into that statement what you will!! Your a ‘youngster’! I say that because your quality of life at such a young age is at present so unpredictable, as are many sufferers like you of this disease/diseases. I feel its selfless of you to try to raise funds for this with your Birthday Present. A more worthy Birthday Present you and so many others shall hopefully receive will be help to improve your young life. I hope you ask for the same present next year as I will most certainly be happy to give you mine…..as always, well done you for such a brilliant idea!…..x

    Liked by 1 person

    1. Thank you Janet! I do sometimes feel sad that I’m losing my young adulthood to this illness. There are others who have been sick since childhood and never managed to complete their education, which is worse IMO. All I want for my birthday is to be better! So I hope the NCNED and other fantastic research organisations can help achieve this.


  2. I set up a regular donation to a UK ME research charity at Christmas after reading your blog and some others. They mostly fund UK-based research, but they also fund some Australian research. I came to your blog via the Colette Patterns brouhaha and have stayed because I enjoy your writing. Happy Birthday and I hope you turn a corner soon.

    Liked by 1 person

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