About M.E.

I fell ill with a virus in October 2019 and I still haven’t recovered...

When I was first diagnosed with M.E. I have to confess it was not an illness I was familiar with. Receiving my diagnosis led me on to research into the condition and now I would like to raise awareness and share my experience with other people.

Woman looking unwell

In October 2019 I fell ill with a range of viral symptoms (headache, sore throat, swollen glands, breathlessness, sweats and chills - the usual virally sort of thing). It had been a busy and stressful time in my life so I decided, uncharacteristically, to take a few days off work, with a view to resting and fighting the virus off. But that recovery never happened...

I slept for hours during the day and night at the beginning. My symptoms went up and down but I never got to the point of feeling better. I had various blood tests, a chest X-Ray and a Spirometry (lung function) test but there were no conclusive results.

After five months of being unwell I was given a diagnosis of Myalgic Encephalomyelitis (M.E.)/ Chronic Fatigue Syndrome (CFS) (which you might see written as ME/CFS).

There is a whole debate about the name of this illness but I have chosen to use the name M.E. for the purposes of this blog.

So, What is M.E.?

Myalgic Encephalomyelitis (or M.E., which I personally find Much Easier to say and write!) is a complex chronic illness.

It is characterised by extreme (physical and mental) exhaustion and feeling generally unwell, and has a range of symptoms which can fluctuate and vary, even from hour to hour.

Frustratingly, there is no specific test for M.E. so a diagnosis is made by excluding other possible causes.

Status Update: Battery Low

Symptoms

The main symptom of M.E. is extreme fatigue (not just tiredness!).

When I fell ill, it felt like my body - and my brain - had reached their capacity and slammed the brakes on. It was as if my whole body had been drained of energy. My limbs became heavy and slow and I would get out of breath at even the slightest exertion.

I also started to suffer with Post Exertional Malaise (or as people with M.E. often like to call it - 'Payback'!).  For example, if I meet up with a friend I'll be able to chat and I'll probably look okay. I might start to get a bit tired after a while and I'll start to forget my words. Then, at some point afterwards (later that day, some time the next day, or a whole week later...) my viral symptoms will start to flare. The only way to manage this will be to go to bed and rest, until I get back to my baseline (everyday) symptom level.

Coupled with the extreme fatigue, people with M.E. will also experience one, or most likely, more of the following symptoms:

  • Flu-like symptoms/generally feeling unwell
  • Headache
  • Sore throat
  • Muscle and/or joint pain
  • Painful but not swollen lymph nodes
  • Difficulty sleeping and/or waking up feeling unrefreshed
  • Poor concentration, difficulty thinking and remembering, difficulties with word-finding
  • Dizziness
  • Nausea
  • Heart palpitations
A checklist

There is also a vast range of other 'fun' symptoms.

  • I frequently have an uncomfortable feeling in the top front section of my head; as if my brain is swollen and pressing against my skull. I also hear loud sounds like popping candy that seem to emanate from that area. These sounds happen when I move and they often wake me in the night.
  • Sometimes my hearing goes wrong, usually just for a few minutes at a time. Sounds will  suddenly become incredibly loud and jarring, and the sensation of them (!?!) will seem to shoot through my whole body.
  • I get a strange tingling sensation down my left cheek.
  • Sometimes the light will be too bright and my eyes will feel like they are burning.
  • My skin often feels tender, so I don't like to be touched and fabrics can feel uncomfortable.
  • My eyes feel dry and sore.
  • Sometimes my gums feel swollen and painful.

These are just a few of my quirky symptoms. It seems as though most people with M.E. have their own list. Although we have the same illness, we each experience it in our own unique way.

Severity

M.E. is split into three categories of severity: mild, moderate and severe. However, the distinctions between these groups is not always clear cut. People can often find their symptoms lie across two categories (for example mild/moderate, moderate/severe). As symptoms fluctuate and change, people can also move from one group to another - by improving, or getting worse. We need more research into M.E. to understand why some people are affected more severely than others.

Mild Symptoms

My symptoms are classed as 'mild'. I am in the small percentage of people with M.E. (25%) that is able to work. I am able to care for myself and I can do light household tasks (but with plenty of rest breaks!). I am able to work part time hours (from home, in the mornings) but I need to rest in the afternoons, go to bed early each night, and use my weekends as recovery time. I often take days off work to allow me additional recovery time for anything outside of my usual routine (for example, a visit to the dentist or the hairdressers). These extra activities will usually cause my symptoms to flare and require me to rest for a few days to get me back to my baseline level of health.

Moderate Symptoms

If you have moderate M.E. "you may have difficulty moving around easily and problems carrying out daily activities; you may not be able to work or continue with your education and may need to rest often; and you may also have problems sleeping at night." (Information from the NHS website, May 2021.)

Severe Symptoms

If you have severe M.E. "you may only be able to do very basic daily tasks, such as brushing your teeth; you may be housebound or even bedbound and may need a wheelchair to get around; and you may also have difficulty concentrating, be sensitive to noise and light, and take a long time to recover after activities involving extra effort, such as leaving the house or talking for long periods." (Information from the NHS website, May 2021.)

It is not known what causes M.E.

What Causes M.E.?

M.E. needs funding in order to be researched and properly understood. It is not known what causes M.E. but theories include:

  • Viral and bacterial infections
  • Immune system issues
  • Problems with mental health (for example stress)
  • Hormone imbalance
  • Genetics (as it can be more common in some families)
Worldwide millions of people have M.E.

Numbers

There is no accurate figure as to the number of people who have M.E. but it is currently estimated at somewhere above 17 million people worldwide. The actual figure is likely to be a lot higher than this. It is also likely that patient numbers will begin to rise; patients diagnosed with Long Covid, who have been unwell for six months or more, now also have the potential to be given a diagnosis of M.E.

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