What Is M.E/CFS? Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

So what is M.E/CFS? Otherwise known as Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, this is a chronic illness that can last months, years and the rest of your life. It can be a very debilitating condition that can either get progressively worse with time/age or you seem settled and have the same symptoms without any worsening. Whilst a small handful do miraculously recover fully or to some degree, most will live with this for the rest of their life.

Most people that are diagnosed with M.E/CFS have had long-term fatigue and a plethora of symptoms. To be diagnosed, you have to have it for more than 6 months. It can either have a relapsing nature, or what most call ‘good days and bad days’ where it is like a rollercoaster.

The terms are slightly different. Myalgic means widespread muscular pain and Encephalomyelitis means inflammation of the brain and spinal cord. Although there are some questions surrounding ‘Encephalomyelitis’ due to a lack of sustainable research that there is inflammation of the brain, it has been reported by the NHS this could be the case, however, more research is needed. So most professionals seem to call it CFS – Chronic Fatigue Syndrome but others that are diagnosed tend to hate this term and here is why I do not like the term Chronic Fatigue Syndrome.

I find Chronic Fatigue Syndrome is a way of saying we are just tired all the time, but the tiredness with this illness is far from the worst of the problems. When you hear the term, you instantly think ‘Oh, they are tired’. However, this is not the case at all. Some class CFS as “post-exertional malaise” which is most often one of the symptoms, but this is not the condition as a whole. We live with fatigue all the time and does get worse after exertion.

You can read my story about living with Myalgic Encephalomyletits (M.E) too!

What Is M.E/CFS? Myalgic Encephalomyelitis or Chronic Fatigue Syndrome

Myalgic Encephalomyelitis or Chronic Fatigue Syndrome is an often debilitating condition that happens after having a viral infection or illness such as Glandular Fever, Flu and even after something traumatic like childbirth or an accident, although having it from trauma is less frequent as people tend to get Fibromyalgia through traumatic and other events.

M.E/CFS is now classed as a neurological disease and in the UK alone, affects more than 240,000 people.

Affecting the entire body in some form, the list of symptoms is endless, but there are specific symptoms they look for with a diagnosis and then more symptoms on top of them, as outlined below

Symptoms

Symptoms used for diagnosis are generally fatigue that has lasted more than 6 months, post-exertion malaise, so after you have done something like going for a run, the next day you will be fatigued and struggling to do anything.

It can range from mild to completely debilitating where you are bed bound or housebound. It can have a small impact or a great impact on your life. It varies from person to person, as well as the range of symptoms and the intensity of the symptoms.

They may also look for the following:

• sleep problems
• pain in the muscles or joints
• headaches
• sore throat or sore glands that aren’t swollen
• problems thinking, remembering, concentrating or planning
• flu-like symptoms
• feeling dizzy or sick or having palpitations (irregular or fast heartbeats) (POTS or OH)
• exercising or concentrating on something makes your symptoms worse.

But then there is an even longer list of symptoms and even conditions like Postural Orthostatic Tachycardia Syndrome (POTS) or Orthostatic Hypotension (OH) that coincide with it. Quite a number of people are also diagnosed with Fibromyalgia.

• Gastrointestinal disturbances like IBS
• Increased sensitivity to noise, foods, odours or some chemicals;
• Problems with dizziness, balance and maintaining an upright posture; and
• Visual disturbances (light sensitivity, pain or difficulty reading).
• Pins and needles, weakness in parts of the body

There are many other conditions and symptoms which are not listed that can be a part of M.E/CFS but if you get any new symptoms, always have it checked out by a GP because it might be a separate issue.

Diagnosis

Getting a diagnosis can be hard. Generally, they will look for fatigue lasting for more than 6 months and post-exertion malaise. They will also look at your medical history and ask about when it started and did it start from an illness/infection.

They will ask if there are other symptoms you have, so make sure you go in with a list of things that are troubling you, as minor as they are, they will help you with your diagnosis.

You might find it hard getting a diagnosis and might be offered an array of medications to try and help specific symptoms. The most important thing is to listen to your body and if something doesn’t work for you that they recommend, tell them.

Another thing that you might find is that they are pushing a mental health diagnosis on you, if you truly believe this is not the case, please do push back. Although our mental health services in the UK do cover living with chronic illnesses and can teach you to live with them, this doesn’t mean we are suffering from a mental health condition. I highly recommend this, but I never let them diagnose me with depression, as I am not depressed.

It might be the case you are continually going to the doctors until you see one that understands or can diagnose you. If this is the case, I would recommend printing off material from places like ME Research and NHS and giving it to them.

It’s important to note that before they can diagnose you, they have to rule out other conditions firstly, so let them run all the tests they need to and even consider some medications, especially for pain management if you are suffering from pain.

After The Diagnosis Of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome

After people have been diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, you might want to consider what lifestyle choices you can make and start to look into pacing.

Pacing is the most important tool I taught myself and I do the same amount of activities every day, regardless of how I feel. This helps me to stay on a more even keel and manage the bad days better, but not doing too much on the days you are feeling better. This can cause you to crash the next day and kick in the ‘post-exertion malaise’ that we seem to suffer with.

Eating a healthier diet can also help, especially with energy levels and stomach/bowel issues.

I’ve talked about lifestyle changes you can consider and things like Yoga that helps. So consider what you can do naturally and go from there! I worked hard to manage Myalgic Encephalomyelitis and you can too with some time and patience!

You might find you have other conditions, so get anything you suspect you have checked out, just to make sure everything is under control and it will make managing your M.E/CFS much better.

There are misconceptions of living with an invisible illness and you have to be mindful that doctors don’t always get it right, so educating them will always go your way if you let them into your life and also about the condition.

Final thoughts

Remember that everyone is not the same so the symptoms you might suffer with, another with the same diagnosis might not have them.

It’s a very varying condition so never think someone is doing better than you. They can either have it mildly or they have worked hard for years to get to a degree of normality for them.

Take it easy, work at a pace that works for you and you cal learn how to pace successfully with some time and patience.