I have met a lot of new friends since joining the Chronic Illness Bloggers community. As well as writing being therapeutic for us, many of us blog to try to help other people with the same condition and also to try to bring some awareness. This week I wanted to help support the awareness efforts of a few bloggers who write about their condition – ME (Myalgic Encephalomyelitis), also frequently known as CFS (Chronic Fatigue Syndrome). People often hear the name ME/CFS and think that sufferers just live with fatigue, but they are actually affected by so much more.
How Are Sufferers of ME/CFS Affected?
I had heard of ME/CFS before, but I really hadn’t know its full effect. People with ME/CFS live with heavy, burdensome fatigue daily. I can relate to fatigue. Living with chronic pain is tiring. Exhausting. I’d describe the exhaustion as fatigue. For me it’s a feeling of extreme tiredness, a heaviness, that makes everything so difficult. It’s caused by my pain, or possibly the medication used for my pain. That fatigue can be bad for me but if my pain eases, so does the fatigue normally. That doesn’t happen for ME/CFS sufferers.
The fatigue felt by ME/CFS sufferers doesn’t lift. But the condition comes with so many other symptoms too such as :
- Flu like symptoms
- Sore throat
- Aching muscles
- Nerve pain
- Migraine
- Sleep disturbance
- Memory problems
- Brain fog
- Dizziness
- Nausea
There are many more fluctuating and debilitating symptoms, all of which worsen with physical, mental or emotional exertion.
Who is Affected by ME/CFS?
It can affect males and females of any age, although more women are diagnosed. Children can also suffer from ME/CFS. In many cases, the condition is thought to be triggered by a viral illness, but often the cause is unknown.
Approximately 250,000 people in the UK live with a form of this condition. There are around 17 million ME/CFS sufferers worldwide.
People who are suffering from ME/CFS don’t look ill and blood tests give normal results. It’s is an invisible illness and sufferers are often disbelieved or accused of imagining their symptoms. Many have been ignored by health care professionals and have had to fight for help and support. At this present time, since there are no diagnostic tests, a diagnosis is often made by ruling out other conditions.
Funding and Research for ME/CFS
As with many conditions (trigeminal neuralgia being a prime example), there has been little or zero government funding worldwide, meaning that research has been minimal. Governments throughout the world really need to fund research for so many ignored conditions.
Thankfully, because of private funding and donations by sufferers themselves, some new and exciting discoveries have been made. Just last month, Stanford University in the USA announced that they are piloting a blood test which could diagnose the condition. Getting a correct diagnosis is crucial, therefore this is a huge step forward.
Stories from ME/CFS sufferers
I want to share a few stories from some of the bloggers I know who live with ME/CFS. Please click on the links to visit their sites.
Char from Chronically Hopeful
Char developed ME/CFS in 2015. You can read her story here.
A page on her website has ideas about how you can help with the awareness effort. She has made images which can be used for profile pics across social media sites. You can find them here on her Facebook Page.
She also has a Millions Missing poster which can be personalised. You’ll find that on her page, however there has been such a high volume of requests, that she may not be able to complete them all before awareness day.
She also has a collection of sufferer’s stories on her website.
Jo from A Journey Through Fog
Jo lives with a very severe form of ME/CFS. She is almost completely bedridden and needs carers to help with the most basic tasks, including personal care.
This is from one of Jo’s posts :
M.E. is not just fatigue. There are a myriad of symptoms including muscle and joint pain, dizziness, flu like symptoms, swollen glands, post-exertional malaise (PEM), hypersensitivity to noise, touch, light etc, muscle spasms, cognitive problems (brain fog), sleep disturbances, shakes and tremors, weakness, headaches and migraines.
A common myth about M.E. is that we sleep 24/7 but this isn’t always the case. Even though I’m exhausted all the time I struggle to sleep or even rest due to pain, muscle spasms, dizziness and palpitations. I constantly feel agitated – in a state of unrest.
Please read the rest of Jo’s post here.
Jo has also made a video explaining her life with ME/CFS.
Tanya from My Fruitful Home
“Living with CFS/ME has truly taught me to live one day at a time and to make the most of what I’ve been given. It also has made me a more compassionate and empathetic person. Yes, it is extremely difficult at times and I wouldn’t wish it on anyone, but I am grateful for the few that try to be understanding about my illness.”
D Savannah from D Savannah Rambles
“ME has stolen my life and made it very small. But I’m using my voice as best I can to tell the world about this devastating condition, and help others who have it.”
Sue from Living with ME/CFS
“I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. My blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.”
Rosalynde from My A – Z of ME
Rosalynde has a book of poems about life with ME/CFS. You can find out more about that here.
Pippa from Life of Pippa
Pippa’s blog has a post about awareness events for ME/CFS
Emma from Not just Tired
Emma has a post specifically about what people can do to help raise awareness.
Awareness
I am fortunate that I don’t have ME/CFS, but I certainly understand what it is like to like with a chronic, debilitating condition. I also understand how important awareness is for conditions that are underfunded and not well understood by the medical community.
International awareness day for ME/CFS is on the 12th of May, with events running throughout the month of May. Please help by sharing posts about it on social media.
Useful Links
More information about the ME/CFS and its symptoms can be found here –
NHS
ME Action
Action for ME
Action for ME – children and young adults
As always, thank you for reading. ME/CFS is obviously an extremely debilitating condition that needs more awareness.
I would really appreciate if you could share this post on social media by clicking the share buttons below.
Awesome post! I love how you decided to use other people’s voices! Very uplifting!
Thanks Collin.
Very informative post. I too like how you used input from so many other sufferers. I do not have this diagnosis and this post helped give me a lot more perspective on what they go through.
Such a brilliant post, you’ve done really well with it & I love the inclusion of insights from those living with it. My primary diagnosis is fibromyalgia, with ME/CFS in the background (I said I didn’t want to be greedy and have them both) as the exhaustion I have can fit both conditions. Posts like this not only raise awareness but show what it can be like to live with and help let others dealing with it know they’re not alone because it can be a very isolating experience.
Caz xx
Thank you so much, Elizabeth, for helping to raise awareness of ME/CFS. This is a great post and us ME sufferers really appreciate it ?
Thank you so much for helping to spread the word! I will share this post…and plan to use it myself to discover some new-to-me ME/CFS blogs!
Sue
Living with ME/CFS
I know a couple of people who suffer from CFS and went undiagnosed for quite a bit of time. I love how you used other people to really drive this condition home. It is very impactful.
Thank you for spreading awareness of ME/CFS. Your voice will help those who suffer find their own voice and make others more conscience and empathetic to sufferers. I appreciate how you brought in the perspective of many.
I can relate to common fatigueness which comes and goes. But having it all the time…on my… so difficult. 🙁 i hope there is some cure for it!
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is an illness that I didn’t know much about. I had no idea that there were so many symptoms. Like many chronic illnesses, I pray that a cure is found soon.
Those of us who are not suffering from any chronic illness are so privileged. Blogs like yours and your community go a long way to help and guide those who need these information and understand the way forward.
Sometimes knowing you’re not alone in your journey can boost your morale to do better. Glad you are able to network with people who understand what you are going through in order to compare information and live better.
ME/CSF sound like an illness that doesn’t let up. I can’t imagine what people who have these conditions have to go through every day. I hope help is found soon to end their pain and discomfort.
My son has a mystery illness and I keep hoping that one of these days I will read a blog like yours and it will match all his symptoms! You are very good at explaining these ailments, I’m just sad you have to endure them.
I wish you Lots of health and wealth and a very very good life.
I love that you’re spreading awareness about chronic pain and invisible illness. Although, I’m not directly affected reading about ME/CFS gives me a new perspective
I feel very lucky not to have a chronic illness, especially one like this. The whole flu-like symptoms just sounds awful. I don’t know how people live with that every day and still manage to smile and try to be as normal as possible. Not only am I inspired every time I read your blog, Elizabeth, I learn things as well. I had no idea these were illnesses. When I think of the “invisible” illness, fibromyalgia is always the first that comes to mind, and I really didn’t know much past that until I read your blog.
I have never really looked into this condition before, but I do know a few people who suffer with it and I love the inclusion of actual suffers. It gave me a more realistic view of the actual disease
Thanks for this – a great summary. And really great to have links to the writing of lots of other people as well. Important to hear different voices.
This is such a very well written post. Thank you so much for raising awareness of ME/CFS and for linking up to some of us and sharing our stories. It means so much to our community. Thank you!