Today I am honoured to share Sarah's chronic illness story. She has been battling Acute Disseminated Encephalomyelitis, also referred to as ADEM, for decades. This interview is part of an ongoing series where we meet warriors from around the world who share their struggles and victories as they navigate life with various chronic illnesses and invisible disabilities.
I hope this series will encourage you and help you to find answers and community. I know that many of the things which I now rely on to manage my condition came from other patients with more experience. I hope that, by sharing these stories, newly diagnosed warriors will feel supported and less alone.
One of my goals for 2020 is to create more art. In order to reach that goal, I've created the Chronically Hopeful 52-Week Art Project. It consists of 52 prompts, one for each week of the year, to guide my creativity, keeping me focused and inspired.
Having a fluctuating chronic illness means that I'm not always able to be creative, so I thought one prompt per week would be easier to manage than the one prompt per day that many other challenges provide. I cannot wait to get started - here's to a whole year of colourful art!
This week I'm sharing Nicole's story. This incredible warrior lives with multiple chronic illnesses including Bipolar Disorder, Generalized Anxiety Disorder, Panic Disorder as well as undiagnosed chronic pain and fatigue.
Her interview is part of our ongoing series featuring spoonie warriors from around the world, each highlighting the realities of life with chronic illness and invisible disability and how they celebrate life in spite of it all.
I hope their stories will encourage you and help you to see that whatever you are going through, you are not alone. There is an incredibly supportive community of chronic illness warriors online - and I can't wait to introduce them to you!
Brrr... It's been so cold here in the UK this week. It's the perfect weather to wrap up in a soft blanket with a hot drink and catch up on some community news! As usual, I've summarised this week's top articles about Myalgic Encephalomyelitis as well as the latest blog updates from some of our fellow warriors. Enjoy!
Please share any of these articles on your social media accounts - this will help raise awareness and eliminate stigma by highlighting ongoing good science and current advocacy campaigns.
The MEAction network has this week launched the "Not Enough For ME" campaign which will focus on 5 items they want addressed by the NIH now:
They are leading this community campaign in order to push the NIH to action. They say that after 30 years of neglect and stigmatization, the community is in crisis and needs action - they need relief now. Promises and recommendations are no longer acceptable without action. >> Read More & Sign The Petition
Micro-immunotherapy was developed in the 1970's and is still widely used in Europe today. It helps patients to reprogramme their immune system by taking small doses of bio-identical messengers of inflammation such as cytokines, growth factors, neurotransmitters, hormones and certain nucleic acids which produce anti-viral effects.
This treatment is used in any condition of acute or chronic inflammation caused by chronic infection of a virus, allergy or autoimmunity. It can be safely combined with other treatments and is really helpful for severe patients who are intolerant to most other treatment options.
This week the ME Association announced that their Ramsay Research Fund was able to make 3 new grants for biomedical research into M.E. The RRF, which has already invested more than a million pounds in biomedical research, is completely reliant on donations and membership fees.
The three grants will provide much needed funding for:
>> Read More
The recent House of Commons Education Committee Report on Special Educational Needs and Disabilities (SEND) made it clear that there is a lack of funding holding back the implementation of training for SEND staff in schools.
Stripy Lightbulb, an online training organisation that focuses on educating the pubilc as well as businesses, healthcare professionals and educators on the realities of M.E, is urging business to acknowledge the crisis and sponsor SEND training in schools. >> Read More
Postural Orthostatic Tachicardia Syndrome is common in M.E. patients and involves the cardiopulmonary and peripheral vascular systems, which are controlled by the autonomic nervous system (ANS).
Through cardiopulmonary exercise testing with iCPET measurments, they have found that people with M.E. appear to have a preload failure (PLF) pattern at maximum exertion. Patients fall into two groups, Low Flow and High Flow Phenotypes. Some possible causes are:
This study will provide the opportunity to identify possible drug treatments for M.E. >> Read More
The Canadian government recently announced a $1.4-million grant to fund Alain Moreau's research. This comes after his grant application was denied just 3 years ago when they insisted that M.E. was not a real disease.
His research includes numerous scientists and physicians from accross Canada as well as 200 M.E. patients from Quebec who form the largest group of regularly tested patients in the community. Moreau's research focuses on the changes that happen at a cellular lever under mild physical stress.
This week CBC News covered the story and did a great job in explaining the condition and the difficulties patients and researchers face. >> Read More
Here are this week's blog updates from our fellow M.E. warriors. I'm sure they'd appreciate a visit and even some comments to let them know you stopped by. If you find their content helpful or interesting, please share the links on social media too!
Julie realised that her motivation seems to dip at the same time every year. This week she shares a lesson she has learned from nature and why she feels at peace and content with her diminished drive to be creative and get things done. >> Read More
This week Char is sharing her entire supplement protocol. Find out which supplements have helped her come off all her prescription painkillers as well as helped reduce fatigue and brain fog. >> Read More
Sue is sharing all the fun ways she and her family celebrate this new season. From family outings to pumpkin spiced food and of course halloween, she's included lots of photos too. >> Read More
Anna highlights the difficulties caused by weekly treatment or therapy sessions, how much preparation they take and how much time we need to recover from them. She also shares her personal struggle to find some dedicated "me time" despite being isolated with chronic illness. >> Read More
This week Jo shares her 10 favourite books on health. They cover a range of topics from patient experience of M.E and Mental Health to Doctor's and Nurse's experience at work. >> Read More
Sophie is sharing some great tips for wheelchair users. She's found some products that help make those rare outings easier and more comfortable. >> Read More
Brett shares Bella's latest visit to the ER. She has been in excriciating pain and is at high risk for infection. The IV pharmacy has still not helped them and the ER doctor refused to do tests - just sent them on their way. >> Read More
For more frequent content and personal updates, why not join me on:
My Chronic Life Pages: Facebook | Instagram | Twitter | The ME/CFS Community
My Art & Crafts Pages: Facebook | Instagram | Twitter | My Art Shop
M.E. Awareness Pictures: Facebook | Instagram | Twitter
I'm also on: Pinterest | Bloglovin’ | Mix | Flipboard
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I am often asked about the benefits of using supplements for Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. People usually want to know which supplements I use for chronic pain or fatigue so they can have a better idea about where to start with their own supplement regime. Unfortunately, like everything else about this illness, we all respond differently, so what helps me might not help you the same way.
Herein lies the beauty of sharing our experiences though - some of the things that are helping me the most are the things I was most sceptical about despite being recommended by others who had claimed success using them. This has taught me that even if I am sceptical, it is always worth trying something for a while if it might improve my quality of life. I hope this post will do that for you too.