I have met a lot of new friends since joining the Chronic Illness Bloggers community. Despite our pain or illness, we blog and we try to support each other.
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).
What is ME/CFS?
I had heard of ME/CFS before, but I really hadn’t know its full effect. I knew that 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 an ME/CFS sufferer.
What many people don’t realise, is that ME/CFS is not an illness which only causes fatigue.
It comes with so many other symptoms too such as :
- Flu like symptoms
- Sore throat
- Aching muscles
- Nerve pain
- Sleep disturbance
- Memory problems
- Brain fog
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 sufferers worldwide. People suffering from ME/CFS don’t look ill and blood tests give normal results.
ME/CFS 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.
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 which 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.
More information about the ME/CFS and its symptoms can be found here –
As always, thank you for reading. ME/CFS is obviously an extremely debilitating condition which needs more awareness. Hopefully, this month helps to bring not only awareness, but also some much needed funding.
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