Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complicated, complex and debilitating condition, the primary characteristic of which is extreme fatigue. Sufferers also experience post-exertional malaise (a delayed response to any exertion or activity which causes a worsening of symptoms), muscle and joint pain, noise and light sensitivities, sleep and cognitive dysfunction and digestive problems (such as IBS).
There is currently no scientifically recognised and replicable cure for the disease. Medically-based approaches focus on relieving symptoms through medication and historically through cognitive behavioural therapy, as well as graded exercise therapy. This approach is now widely disputed and there is a growing recognition of how this patient group has been inappropriately treated.
MPs recently discussed the issues facing this patient group in parliament, acknowledging how this historical approach has been detrimental to patients and promised to do better. Whilst this has yet to result in changed treatment protocols, it’s added evidence to the shift that is happening.
It is estimated that millions of people worldwide are affected by ME/CFS and it is thought to currently impact around 250,000 people in the UK, including children and adolescents. In fact, ME/CFS is the most common cause of long-term absence from school.
These are shocking statistics and due to the nature of the illness, the people suffering struggle to campaign on their own behalf. Furthermore, with the lived experience being so ‘invisible’ to others, it’s a compounded struggle: first of all, the recognition of the severity of the disease and, secondly, investing in research (both clinical and experimental) that will help alleviate the suffering.
The impact of ME on UK businesses is also extremely significant, with a 2017 report by The Optimum Health Clinic (OHC), a charity specialising in ME/CFS research, and the think tank 2020health, estimating the economic cost of ME/CFS to the UK economy to be around £3.3 billion per annum.
Starting conversations, sharing experiences and educating each other on what to look out for and how to support people struggling is particularly relevant as early intervention is absolutely key in easing the suffering of the person experiencing symptoms, as well as minimising the impact on the workplace.
The biggest challenge is often not the symptoms!
Being invisible can feel harder than the intensity of symptoms.
While the symptoms associated with ME are extremely challenging, leaving around 75% of those affected unable to work and 25% bedridden, another aspect of the condition that also needs attention is its visibility. That’s because traditionally – even in medical circles – ME has been seriously misconceived, with many people believing it is a ‘made up’ disease or that because a blood test hasn’t been discovered yet, it can’t be that serious.
This is a sad reality that exacerbates symptoms and makes people living with ME feel even worse. Feeling invisible, feeling doubted, dismissed and discounted compounds the experience of being ill, making it unbearable at times.
But the good news is that our understanding of health issues is changing and that is causing attitudes towards ME to change too.
Here at The Helpful Clinic, we take what we call a ‘3D approach to health and recovery’ that focuses on biology, psychology and social context – referred to as the BioPsychoSocial model.
It’s an approach that is getting more and more attention nowadays, with more and more NHS doctors now training as Functional Medicine practitioners, while policy makers are driving Social Prescribing, which involves beneficial social activities such as walking groups (and not simply relying on medication).
ME/CFS is a multi-systemic condition which means that it affects multiple physical systems, it is therefore essential that health support works across different systems and in all 3 dimensions of health: biology, psychology and social context.
There’s a growing number of people who have fully recovered and stayed well for years. This is important information as the common perception is that people never recover. Even though we don’t yet fully understand why some fully recover, whilst others may experience significant improvement but not a full resolution of symptoms, it’s important that we don’t dismiss recovery.
What you can do to help support someone with ME
First and foremost, never assume you know best when it comes to ME. If you have a friend or family member who is living with the condition, ask them how you can best support them. If they say they can only talk for a certain amount of time, respect that and don’t push them to interact any longer.
By respecting them and helping them to not exceed their boundaries when it comes to activities or talking, you can really help someone living with ME. Think little and often, not grand gestures that will overwhelm them.
If you have ideas of how the person can be supported and helped, ask them first whether they’d like to hear what you’ve got to say. It is possible that the person suffering has considered what you’re about to suggest and it’s not helpful (at least at this point) or that they are struggling more at this particular point and won’t be able to take it in, but would like to know at another time when symptoms are less intense.
Even if you don’t fully understand how they are feeling or it doesn’t make sense to you, believe the person when they open up to you about what they are experiencing.
And please never ever say things like this to someone with ME:
- “We all get tired from time to time…”
- “Just think positive…”
- “You need to get out more…”
- “But you look great…”
- “You should try X …”
While you probably think it will help their situation, it usually has the opposite effect and leaves the person feel even worse.
ME Awareness Week (6th to 12th May 2019)
This year, ME Awareness Week will run from 6th to 12th May 2019, culminating with ME Awareness Day itself on Sunday 12th May.
ME Awareness Week is all about telling the world that ME is a real and physical disease, as well as ensuring it is a condition that’s not ignored and dismissed.
Please do get involved and help raise awareness of ME by spreading the message (sharing this post on your social accounts is a great way) and starting conversations around the condition.
The conversations is growing and strengthening. Organisations like #MillionsMissing and the ME association are some of the voices driving this conversation, demanding to be heard. Please also consider using the following hashtags in any posts relating to ME that you do publish:
The more people know about ME/CFS and the better their understanding of how to support someone living with the condition, the greater the help they can provide. Let’s make a positive difference and get talking!