You may feel that a diagnosis should be the start of the story with the doctor, but sometimes, when it's a chronic illness, they believe it's the end. This can leave you feeling abandoned and that your child has been failed by "the system" and you'd be right.
Myalgic Encephalitis has been called many things over time. ME, CFS, hysteria, laziness, multiple psychological disorders, yuppie flu. As society we don't recognise those who suffer for years, we see those who have big operations as brave, who fight cancer as warriors, but to endure 24/7 suffering with no hope is sight is seen as an annoyance and one to be dismissed as fictional. No one wants to believe that something that you can't see, cant measure, won't show up on an x-ray or blood test, can rob your child of years if their life and have no real treatment or cure.
I'm sorry if that sounds bleak, but you may be here for answers and I want to give them to you. ME can feel bleak, because society and the medical community at large will not help. There is a massive lack of investment in research into the causes and mechanisms of ME. That isn't accidental, it's part if a wider dismissal of the disease by scientific communities.
The World Health Organisation (WHO), National Institute for Clinical Excellence (NICE), Department of Health and NHS all recognise ME as a physical illness. In reality, it is seen by many practising physicians as a psychiatric condition, a common theme you will find is that people believe you can simply "pull yourself together" and be well.
The one main symptom of ME that is recognised by most is Post Exertional Malaise (PEM). That means that when you exert yourself in any way (getting out of bed, brushing your teeth, walking) the malaise or fatigue felt afterwards is several times that of someone who doesn't have ME. This is best explained by the spoon theory. Spoon theory claims that most people have a supply of spoons to get through the day. A well person's supply is not infinite, but is very high and rarely runs out unless they undertake boot camp or a marathon or other extreme task. Someone with ME may only have a few spoons between 3 and 10. Getting out of bed takes a spoon, getting a shower would take 3 spoons, making a meal is takes a spoon, getting dressed takes a spoon. That's why you won't often meet alot of people with ME. You can easily see how having so few spoons and needing so many to just simply get ready and fed, getting out of the house becomes impossible. Some people with ME may have 20 spoons. They may have a part time job or go to school. Compared to a healthy person who may have 100s of spoons, they are severly limited in attempting a "normal life". What happens when you run out of spoons? You may ask. Nothing. Nothing can happen if you run out if spoons. Where ever you are you will be unable to sit upright, totally unable to walk, many are unable to talk. This is called a crash and many people with ME are familiar with this.
This is where pacing comes into things, because you need to open your eyes and be able to assess how many spoons you have today. A key point of ME is that your spoon supply will vary day to day. So you need to draw on your personal experience of ME and think, "How many spoons do I have?" Then plan the day around that spoon supply. Ensuring you have enough spoons to get back to bed before you run out, or else you will require literally carrying back to your bed. That suddenly doesn't sound so easy when you only get 10 spoons, it's impossible if you wake up with 2 or 3.
25% of people with ME wake up every morning with such a vastly reduced number if spoons, they are severely ill, sometimes paralysed in the legs, sometimes paralysed in the digestive system requiring tube feeding. They are completely bed bound and extremely sensitive to light and sound.
You may see this to a lesser extent in a person who is in a crash. If you constantly run your spoons down and try to use spoons you don't have, you will crash. This leads to worsening symptoms of ME such as nausea, vomiting, muscle pain, headaches, sensitivity to light and sound, uncontrollable tremors, difficulty controlling body temperature to either extreme, general flu like symptoms. This miserable mis-management of ME will drive you into more and more severe ME until you could end up as one of the 25%.
Unfortunately for many children with ME, the above mismanagement and misunderstanding of "spoon theory" is exactly what they are prescribed to "cure" ME.
Graded Exercise THERAPY (GET) is the official terminology and it involved increasing exertion by 10% every week. Every single week, ignoring how many "spoons" you have, how bad the Post Exertional Malaise is, even if you crash completely. There is no mercy for increasing symptoms and the steady decline into severe ME. Failure to get well from GET is considered to be due to failure in the patients part, refusal to comply or labelled as ODD or other psychiatric illness.
GET comes from a trial which reported to show improvement in patients with ME. These results have been shown to be fraudulent. Faked to gain notoriety and financial gain. This has not stopped them being rolled out across the NHS as a supposed treatment for ME. The ME Association did its own study into GET and found that for many it does not help and for the majority it causes a worsening of overall symptoms. GET is not accepted by the vast majority of ME charities and advocates as anything but damaging to children with ME.
In America they have removed endorsement of GET from official documentation and there is currently a review of the British NICE guidelines that recommend GET as a possible treatment option for mild to moderate ME. The tide is slowly turning on GET, but that doesn't mean you wont be offered it as a treatment plan for your child with ME. When what they really need is rest and tlc, since there are currently no treatment or real understanding of the causes of ME.