World M.E Day
Hello Friends,
Today is World M.E Day and to help people understand what M.E or Myalgic Encephalomyelitis actually is, I thought I’d publish an article giving you an overview of the disease. I felt this was especially important since there’s been so much in the media about Long Covid ~ which is remarkably similar to M.E and some with people with Long Covid are now being diagnosed with M.E.
For those of you new to my content here. you may be wondering my reasons for highlighting this disease as it may seem out of the blue. But I myself have M.E and as someone who relied on other people with M.E for support and information, I feel it’s important to try and do the same of others.
I know many of you who read my articles actually have M.E, but there may be some of you who don’t and so maybe don’t know what it is, especially since my content this year has taken a step away from the health content I previous wrote. Also, there may be some of you reading this that are newly diagnosed with M.E and are looking for information. So I hope this article will be of some use to someone ~ either in educating you about M.E or helping you know that your symptoms are real and that you’re not alone in experiencing them.
While venturing into the realm of M.E, things can get a little overwhelming but I’m going to keep this as basic as possible by just detailing down the main information. So this article will be broken down into sections and will give a brief overview of what M.E is, it’s symptoms and if there’s any treatment that can help.
What is Myalgic Encephalomyelitis or M.E?
When you break down the name, Myalgic means muscle pain and symptoms effecting the muscles. Encephalomyelitis means inflammation of the brain and spinal cord. So Myalgic Encephalomyelitis is classed as a Neurological Disease which effects the the Central Nervous System of the body and as such is also known as a multi-systemic disease because it causes all sorts of symptoms, effecting most of the body’s functions.
While there has been no one cause of M.E pin-pointed, some things have been linked to people with M.E:
Viral Infection eg. Glandular Fever {COVID falls into this category.}
Bacterial Infection eg. Pneumonia
Gentics
There are four levels of Severity:
Mild
Moderate
Severe
Very Severe
What are the Symptoms?
There are so many symptoms that you experience when having M.E, but I'm only going to list the main ones, otherwise I’d be here all day!
Prolonged Fatigue
Sleep problems / Unrefreshing Sleep / Insomnia
Muslce Pain / Joint Pain / Nerve Pain
Headaches
Sore Throat / Sore Glands ~ sometimes swollen
Cognitive Disfunction / Memory Problems {“Brain Fog”}
Dizziness
Nausea / Lack of Appetite / Gastrointestinal Problems ~ IBS like symptoms
Flu like symptoms
Heart Palpitations / Irregular Heart Beat
Hyper Sensitivity ~ Light, Sound, Taste, Smell and Touch
Post Exertional Malaise {PEM / “Payback” ~ worsening of symptoms after activity}
Mitochondria Problems {Body doesn’t produce or store energy properly}
Seizures
Muscle Twitches / Muscle Spasms
Regulating Body Temperature Problems
Circulation Problems
Respiratory Problems
Muscle Weakness
How is it Diagnosed?
As there is no definitive diagnostic test for M.E, your Doctor will likely use a process of elimination to diagnose you. This means that they will test you for all the main illnesses or diseases that present with the same type of symptoms. If all those tests come back clear, then you will likely be diagnosed with M.E.
You also will fit a certain symptom criteria in which you’ve been experiencing certain symptoms for 6 months or more. These symptoms include fatigue and Post Exertional Malaise amongst others.
How is it Treated?
I really wish I could tell you that once you are diagnosed, your Doctor will prescribe 6 rounds of a particular treatment and then you’ll be cured! But I’m sorry to tell you that just as there’s no proper diagnostic test, there’s also no treatment plan, no cure. Some people with M.E do see some improvement over the years of living with the disease but there’s only a 5% recovery rate, and there’s a better chance of your recovery if you’re diagnosed as a child or teen than as an adult. But for the most part, this disease is very fluctuating and some days, weeks, months, years are better than others.
There are Specialist M.E Clinics with the U.K. that you may be able to get referred to but again all they can do is help you understand M.E a little better and help you learn how to manage it through pacing, planning and resting. Some of these clinics may also offer Cognitive Behavioural Therapy, this shouldn’t be seen as a cure for M.E but it may help you cope mentally with living with a chronic illness as that can be difficult to come to terms with. Because M.E impacts every little thing you’re able to do, it can effect your mental health and CBT may be a good tool to help you cope but again it’s definitely not a cure as M.E is a physical disease not a mental one.
While the guidelines have changed this past year and Graded Exercise Therapy {GET} should no longer be recommended for people with M.E, some doctors may still try to use it as a treatment. Graded Exercise Therapy which is where you slowly increase your activity levels each day, no matter how you’re feeling. This is something that many M.E specialists do not agree with as due to people with M.E experiencing Post Exertional Malaise, GET can make your M.E significantly worse. So please be cautious if GET is recommended to you as a treatment as, speaking from experience, it very likely will make you worse not better.
I know that’s all a lot to take in but that pretty much covers the basics of what M.E is. I hope if you didn’t know what M.E was before you read this article, that you now know a little more and understand that it’s not that disease where you “feel little tired all the time”. There’s far more to it than that.
If you have any questions relating to any information in this article, please feel free to leave me a comment or send me an email via the Contact Me and I’ll be happy to answer what I can.
To all my fellow people with M.E, I know May can be a tough month with all the content raising awareness and the realities of the disease are front and centre. So please be gentle with yourself.
Stay Safe.
L x
