As it’s M.E. Awareness Week, I want to do some blog posts on M.E. This is the first post.
What is M.E?
M.E. stands for Myalgic Encephalomyelitis. It is also called Myalgic Encephalopathy, Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), and probably some other names that I can’t remember. There is a lot of debate and argument about whether these are all the same thing, what is the correct name, what is most accurate, but I’m not going to go into that here as it just confuses me. My actual diagnosis is Myalgic Encephalomyelitis, but as it’s often called CFS as well in the UK I sometimes refer to it as ME/CFS to be inclusive.
M.E. is a neurological illness that affects many systems in the body. Because of this, it causes lots of different symptoms that affect different sufferers in different ways. The main symptom that has to be present though is post exertional malaise- feeling severely ill and fatigued after mental or physical activity. This can take a day or two to appear, which means it may be missed initially. I call this payback. Because of this, trying to push through the illness and doing too much will actually make things worse (which is why Graded Exercise Therapy (GET) and some types of Cognitive Behavioural Therapy (CBT) can be so dangerous as they encourage this).
Other major symptoms include: muscle weakness; widespread pain in muscles and joints; fatigue (which is more than just tiredness) that doesn’t improve with rest; cognitive symptoms such as poor short term memory, poor concentration, finding it hard to find the correct word- sometimes called brain fog; sleep disturbance (either too much sleep (hypersomnia), too little sleep or difficulty getting to sleep (insomnia), or both); and flu-like malaise (feeling terrible – like you have the flu constantly). There are loads of other symptoms as well, such as headaches, sore throat, poor temperature control (so you’re either too hot or too cold), clumsiness, muscle spasms, temporary paralysis, dizziness, heart palpitations, chest pain, fainting, irritable bowel symptoms, hypersensitivity to noise, smells, light and touch, and mood swings. There are others that I’ve forgotten but this is an idea of them. I’ve experienced all these symptoms plus some others (becoming even more sensitive to medication, alcohol intolerance, enlarged glands, poor circulation, nausea and vomiting, altered consciousness). I’ve probably forgotten some that I’ve experienced (a poor memory is one of the symptoms) and other sufferers will have experienced some I haven’t.
Basically, having M.E. makes you feel like you have constant flu, with a hangover, having just run a marathon. All the time. It lasts at least a few months (in most cases it can’t be diagnosed until you’ve had symptoms for at least 3-6 months) and can last years or decades.
There is currently no cure for M.E, nor is it understood exactly how it develops. Many sufferers get it after a viral infection that just doesn’t go away, such as flu (as in my case) or glandular fever. For other sufferers there may be other triggers such as being vaccinated. For some sufferers it comes suddenly out of nowhere, and for others they slowly become more and more ill. There is a lot of overlap with the symptoms of M.E. and a lot of other conditions, so to be diagnosed you have to rule out all the other conditions first as there is no simple diagnostic test. This can take a while and can lead to people overdoing it during the early stages, which makes them more ill than they probably would have been had they been diagnosed earlier. It can affect any age, gender or social group.
M.E. varies in severity, from mild to very severe. Someone with mild M.E. will probably be able to attend school or work full or part time, but will have to be careful not to overdo things and to get enough rest. Those with moderate M.E. will find school or work difficult (or be unable to attend at all), will need to rest more, and find walking long distances a challenge. Those with severe M.E. are mostly or completely housebound, often need a wheelchair to go more than a very short distance (or as in my case, be unable to walk at all), and need to severely limit any mental or physical activity otherwise they will become more ill. Those with very severe M.E. are completely or almost completely bedbound, in constant severe pain, often unable to do the smallest self care task, may need tube feeding, be unable to roll over in bed, may be incontinent or need to use a bed pan (as even transferring to a commode can be too much), need to lie in complete silence and darkness, and cannot be touched or even have another person close to them . It is basically a living hell.
A lot of sufferers with M.E. have both good days and bad days. These are both relative- someone with mild M.E. having a bad day may be able to do the same things that someone with moderate M.E. can do on a good day (such as read a book). The severity of physical and cognitive symptoms can also be at different levels, so someone may be completely bedbound but might be able to read books and watch television most of the day, but someone else may be able to walk around the local area but unable to hold a conversation for more than a few minutes. As there is no cure most treatments are based on managing symptoms. Medications to help with pain, nausea and other symptoms may be prescribed, and for a lot of sufferers pacing or activity management (where the sufferer will limit the amount of each activity to what they can safely do each day) are helpful. Some people find complimentary therapies useful. As mentioned earlier, doing more than your body can cope with will often cause more severe symptoms and can lead to people becoming much more ill, so some therapies such as GET and CBT can be dangerous to those with M.E. (This is where the confusion between M.E. and CFS comes in, as GET and CBT can be helpful for some people diagnosed with CFS, but most of those probably do not have M.E.) Those of us who tried to ignore M.E. and push through it eventually learn that it doesn’t work, though unfortunately often not until they have gotten worse.
Some people with M.E. recover completely. Others will improve with good pacing and activity management, but may have periods of time where they relapse (often after an infection or similar). Some sufferers will stay at the same level for years on end. Some will continue to decline no matter what they do. There doesn’t seem to be any way to tell which someone will be other than to wait and try and manage the illness as well as possible. As with lots of other illnesses there are some unproven therapies that apparently cure M.E, but most of them cost a lot of money and although they may help some people , there’s no guarantee.
M.E. is not a mental illness or psychological, although as with every chronic illness there is a psychological component and it is unfortunately common for sufferers to develop depression. This means it cannot be cured with a talking therapy such as CBT, although CBT may be useful for learning to manage the emotional effects of the illness. Unfortunately most of the funding for M.E. (often deliberately called CFS) has been used for research into psychological treatments, though hopefully this will change soon. There are also a lot of people (including some doctors) who do not believe M.E. exists, despite it being acknowledged by the World Health Organisation as a neurological illness for decades. This is starting to improve, but it’s not great yet. This means a lot of sufferers have been and still are treated badly by professionals.
Death by M.E. is rare, but does happen. It is mostly in sufferers with very severe M.E, but there have been cases of those with less severe M.E. dying due to the wrong treatment, being told to exercise beyond what their body can cope with. Death is often by cardiac arrest but there can be other causes as well. Autopsies on patients who have died from or with M.E. have shown abnormalities in the brain and spinal cord. Suicide is also too common, as the illness becomes too much for some sufferers to cope with for any longer.
This has ended up much longer than I was expecting. There may be some inaccuracies in this- if so, please point them out and I’ll correct them. This is just my understanding of M.E, so for further reading see the ME Association.