The Illness No One Knows About: A Portsmouth M.E. Sufferer Speaks Out

Social entrepreneur, Sally Callow. Image courtesy of Sally Callow.

Sally Callow is the founder of ME Foggy Dog, a Portsmouth-based charity that raises funds and awareness for the M.E. Association. She also suffers from M.E. herself. Here, Sally shares her own experiences to shed light on this still-misunderstood condition.

Image courtesy of ME Foggy Dog.

I started the social media-driven ME Foggy Dog back in 2014 in Portsmouth. Since then, I have been amazed by the number of people who tell me ‘my sister-in-law/best friend/aunty/work colleague has M.E.’

It’s often followed by, ‘…but I don’t know what it is.’

Based on my own experience, I’m quite confident that everyone knows someone with Myalgic Encephalomyelitis (M.E.) also known as Chronic Fatigue Syndrome (CFS). But despite the familiarity of its name, this is a common illness that almost no one knows anything about.

As an M.E. sufferer myself, I started ME Foggy Dog to spread awareness of the illness worldwide, and I do this via social media. ME Foggy Dog also raises funds for M.E. research because one day, it would be wonderful to have someone in a white lab coat tell me why I feel like death warmed up every single day.

Feeling like I have flu is my starting point, my day deteriorates and goes downhill from there. At least when you have flu it will only last a couple of weeks at most before you can move on with your life. M.E. sufferers don’t have that. There is no end in sight. In most cases, M.E. is lifelong from the point of being struck down with the illness.

So, what is M.E?

It is a severely debilitating neurological condition that affects 250,000 people here in the UK and 17 million people worldwide (low estimates). M.E. is an invisible disability. If you saw me out on the street you wouldn’t think there was anything wrong with me. That is the problem with M.E. It’s not like having a broken leg and having a visible sign of pain and discomfort. M.E. has a kind of spectrum that ranges from mild to severe.

I have mild M.E. I am unable to work full time but run a small business of my own from home. I can only work 4-5 hours per day before my energy flatlines and I have to rest for the remainder of the day. Moderate sufferers aren’t quite bedbound as they manage to leave their homes, with great difficulty, 1-2 times per week. They are unable to work, socialise and live ‘normal’ lives due to their M.E. symptoms.

Severe sufferers are bedbound, it is not unusual for them to be bedbound for decades with no respite from severe symptoms. Imagine not being able to leave your bedroom – for decades. Imagine being completely dependent on a carer or family member. Imagine that you often cannot tolerate light or sound, you can’t even lie in bed watching TV or listening to music. As a result of these difficulties, the M.E. community has a worryingly high suicide rate. These lives have been stolen and sufferers feel they need to find a way out.

There are many symptoms of M.E/CFS, including: extreme fatigue, brain fog, migraines, pain, memory loss, cognitive impairment, unrefreshing sleep, slurred speech, loss of co-ordination, sensitivities to light/sound/chemicals, dizziness and an inability to control body temperature. There are many more, but the main symptom non-sufferers are aware of is tiredness.

M.E. sufferers often call this tiredness ‘brain fog’, as opposed to the term ‘fatigue’ which sounds like we are just a bit sleepy. It’s as if our brain is full of fog or cotton wool and it is very difficult to communicate. M.E. fatigue or brain fog feels like you’ve just run a marathon with a hangover and the flu. We feel so tired we can’t function. Our limbs don’t work properly. M.E. sufferers have to learn to use energy sparingly to make sure we get through the day. The symptoms of M.E. also fluctuate in severity, so what we can do one day is impossible the next. This puts a strain on relationships with people who don’t understand the illness.

There is no treatment for M.E. but sufferers are often referred for Cognitive Behavioural Therapy (CBT) to help us pace ourselves and deal with our diagnosis emotionally. CBT does not treat M.E. Pacing teaches us to take regular rest breaks. These rest breaks help us to make our limited energy supply last a little bit longer than if we had kept going until we flatlined. I used to work full time but had to give up my job in a customer-facing role, because regular hourly rest breaks were not possible, and I was unable to look after my own health.

You may be surprised to hear that many healthcare professionals do not understand M.E./CFS. But because of this there are a lot of understandably angry M.E. sufferers frustrated that the illness is often not taken seriously.

M.E. does not discriminate in terms of gender, age, or race, yet it is often thought of as an illness that only affects white females. Although more women than men have M.E. (2:1 female to male predominance), men get M.E. too. Believe it or not, a paper written in the 1970s by two psychiatrists concluded that M.E. was mass hysteria because many of those affected were women. This paper did a lot of damage, and led directly to a lot of the misconceptions about M.E. today. As a result, men feel considerable stigma about having this illness: many don’t consult doctors or keep their illness a secret from family and friends. It is likely that the known statistics on the incidence of M.E. are therefore low estimates, many hundreds of thousands of men, and people living in under-developed countries may not be included in the figures.

You can find out more about M.E. and ME Foggy Dog by following us on social media and helping to spread the word, details below. ME Foggy Dog raises awareness of this illness by using humour but it’s important to remember that M.E. can devastate the lives of sufferers and their families. Get involved today and help raise awareness of this still-misunderstood condition.

Get involved

Head over to the ME Foggy Dog website to follow Foggy’s travels on his blog, donate and shop to raise money for the ME Association, and of course, follow ME Foggy Dog on social media: on Twitter, Facebook, YouTube and Instagram.

Images courtesy of Sally Callow and ME Foggy Dog.