Been diagnosed with ME/CFS?
If you have, chances are you’ve not been well for some time. Maybe you’ve missed a lot of school, maybe you’ve been in bed for what seems like forever. We’re here to let you know that you’re not alone, and that there is life with ME/CFS!
As you’ve no doubt read our What Is ME/CFS? or Just Diagnosed? page, ME/CFS is a recognized medical condition that affects tens of thousands of children, young people and adults across Australia, across all cultures and socioeconomic boundaries. Its symptoms include, persistent wide-ranging, overwhelming exhaustion (also called Post-Exertional Malaise or PEM) or fatigue, gastrointestinal problems, sleep disturbances, memory and cognitive (thinking and concentration) problems, aches and pains, headaches, nausea and other “flu-like” symptoms.
It is a very individualised illness with varying levels of severity, but it is thought a delay in diagnosis can cause a person’s condition to worsen, it is thought due to a delay in instituting a treatment plan including such things as pacing and even applying inappropriate treatment options such as “just pushing through”.
Approximately 25 % of people with ME/CFS are more severely affected and will be housebound or even bedbound. For these people it is vital that they get the full support of their family and friends.
Living With ME/CFS
Of all those who develop ME/CFS, young people/adolescents are hit the hardest. Unlike adults, who have largely achieved independence (but who might have to go back to parents for care), or children, who are still dependent on their families, ME/CFS can strike teens and young people just when you are trying to learn how to break out on your own, establishing your own identities.
To repeat, one thing you should never forget is that you are not alone! There are (unfortunately) a lot of young people just like you, going through almost exactly the same issues you are dealing with. Quite apart from the symptoms of the illness itself, the feelings of loss, hopelessness, grief and isolation are not unusual. If you can find someone you can trust, who accepts your condition, to talk to be it a parent, family member, friend or other, you might find it helpful.
You might also benefit from talking to other ME/CFS sufferers around your own age. You can find them via the Facebook page for young people with ME/CFS, their friends and siblings, located here or via our Peer Support Network.
If you feel things are getting to you and you need to speak to someone please contact Kids Helpline at 1800 55 1800, Headspace, ReachOut.com, Youth Beyond Blue 1300 22 4636, or Lifeline 13 11 14. Please also take a look at our page on Depression and Anxiety.
It’s hard enough being a teenager or young person as it is, but being one with a chronic illness like ME/CFS is especially challenging. Balancing friends and socialising, schoolwork, sports (if you’re still able to participate) and the demands of the illness is extremely difficult. However, a balance of them is best for your wellbeing if you can manage.
One strategy that will help is that of “Pacing” – please see our page on Pacing with its resources. Its goal is to maximise your activity levels without worsening your illness. The ultimate aim of pacing is to give you a sense of control over your illness and your life.
Pacing requires you to:
- Keep track of your activity throughout the day to keep within your “energy envelope” or particular energy allotment for that day;
- Divide your tasks for the day into manageable portions and intersperse them with resting periods;
- When possible save energy e.g. walk a route that doesn’t have any hills instead of one that does;
- Stop mental or physical activity as soon as you start to feel any signs of reaching your activity limit i.e. you can feel the fatigue symptoms start to worsen.
Over time, with pacing your goal will be to gradually increase the amount of energy you have day-to-day. With pacing (and other treatments below) you can live with ME/CFS. It may not be the life you wanted to live before but it is the life you have until you wait for recovery. As we shall see below you stand every chance of recovering.
An Individualised Treatment Plan
In addition to pacing, it is widely recommended you work with your family and your GP or treating physician or other medical practitioner to hammer out an individualised treatment plan. Unfortunately, currently there is no cure and no agreed upon medical treatment option for ME/CFS. Treatment plans aim to increase quality of life, introduce symptom relief, and reduce the severity of the post-exertional malaise (PEM) as much as possible.
It needs to be flexible enough to take into account the variable nature of the illness. It is designed to help you and your family deal with the unpredictable relapsing nature of ME/CFS so you can lead as normal life as possible without your symptoms flaring-up. A plan typically includes:
- Pacing (see above);
- Medicinal treatments for symptom relief;
- Coping strategies and lifestyle changes and adjustments aimed at reducing factors known to increase your symptoms (such as identifying food intolerances – please see our page on Nutrition and ME/CFS), and to facilitate healing.
Treatment plans may also include Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET). GET is often offered as a treatment regime in adults, but there has been little research in children and adolescents. The UK NICE (National Institute for Health and Care Excellence) clinical guidelines for ME/CFS, however do recommend GET is offered to children and adolescents with mild to moderate severity.
There is much controversy related to GET, with many arguments on both sides as to whether it is effective and whether it does harm. If you want more details on the controversy or on GET itself, please see our page on Exercise And ME/CFS.
Just briefly CBT, involves consultations usually with a clinical psychologist and is a type of psychotherapy that helps people to change unhelpful or unhealthy thinking habits.
CBT has been shown to increase activity levels in children and adolescents. However there is also some disagreement about this. There has even recently been a trial in the Netherlands of internet-based CBT.
If you are already undergoing counselling or seeing a psychologist or psychiatrist for other issues you might find you are essentially doing CBT with them.
Understanding and supporting young people living with ME
On 24 July 2014, we at Emerge Australia, ran a seminar symposium titled “Understanding and supporting young people living with ME“. It focused on young people and their carers, affected by ME/CFS.
For example Dr Kathy Rowe, a paediatrician at Melbourne’s Royal Children’s Hospital (RCH), spoke on the topic “Understanding ME/CFS in young people” (Video & Slides). Dr Rowe has extensive experience working with young people with ME/CFS.
She also spoke on the topic “The emotional impact of living with ME/CFS” in place of Dr Lisa Ellis (psychologist) who was unable to attend (Video).
Studying And ME/CFS
If you are in school or university while struggling with ME/CFS please see our page devoted to Students with ME/CFS.
Friends and Relationships
Maintaining your current friendships and making new ones can be more than a little difficult with ME/CFS. For example, knowing how much to tell your friends or partner about your illness in the hope that they will understand can be a challenging question. In the UK there is an Association of Young People With ME or AYME. They have a page with much helpful advice on Friends and Relationships. Here’s a pdf of the page. It has the following headings:
- Should I tell my friends what ME/CFS is really like?
- But I don’t have the energy or confidence to tell my friends
- Look at things from your friends’ point of view
- What if my friends let me down?
- I’m a severely affected member (SAM), what about me?
- What about when I have to be on my own?
- I’m a bloke, what about me?
- How can my family help?
- New ME/CFS friends – are they ‘proper’ friends?
- What about if my ME/CFS friends are only online and I don’t actually see them?
- Are any friendships bad for me?
- Tips for making and keeping friends
- What if I’m the friend of someone with ME/CFS?
Some of our members have found the ‘Spoon Theory’ from ButYouDon’tLookSick.Com helpful to use to explain to others how they must manage their energy during the days and weeks. Read about the Spoon Theory here.
This is your section, so if you can, we would love to hear from you about your experience of ME/CFS. Tell us what an average day is like for you, what you love to do, what you hope to do in the future. ME/CFS Australia (Victoria) exists to support young people with ME/CFS however we can, so tell us what we can do to support you!
Connect with other young people with ME/CFS or find resources on which to draw:
- Emerge Australia have a Facebook page just for young people with ME/CFS, their friends and siblings, located here;
- ME/CFS and FM group on DeviantART, located here;
- Livewire.org.au is a website for young people with all chronic illnesses, their siblings and parents. Site contains a forum and chatroom.
- Chronic Illness Peer Support (ChIPS) at the Royal Children’s Hospital (Centre for Adolescent Health) in Melbourne and works to engage young people from metropolitan and rural Victoria and is a “vibrant adolescent peer support program for young people who are:
- 12-25 years of age with a primary diagnosis of chronic illness,
- Living with a chronic illness or condition that affects their daily life,
- Are able to attend Eight Week Peer Support Group or a two day Intensive Group,
- Are ready and able to participate/function well in a group setting.”
- The The Children’s Hospital at Westmead in Western Sydney also runs a ChIPS program. Their website is not currently being maintained but is being merged into the Sydney Children’s Hospital Network website to be found here in the services for teens;
- ReachOut.com have a section about Serious and chronic illness;
- The Chronic Illness Alliance website has an online resource called Invisible Illness which “provides information on chronic illnesses experienced by children and young people in Victoria, Australia” it also aims ” to inform teachers and school communities of the impacts of the illnesses on students’ lives and educational performance and to offer strategies to assist them”;
- It has an entry on ME/CFS, “The Condition’s Effects on the Child / Young Person” and “Strategies for Schools / Teachers“. Please also see our pages For Students and For Educators.
When Will I Get Better?
That is a difficult question. As mentioned above, it is a very individual condition with varying levels of severity. Some will have a mild form while others will unfortunately have a very severe form of the illness. But the good news for children and young people is you are more likely to fully recover than adults.
In her clinic at the Royal Children’s Hospital in Melbourne, Dr Kathy Rowe followed up to 800 patients between 1991 and 2009 and found some promising results. For those who were followed for more than 12 years 88% reported recovery, where the average duration of the illness is 5 years (the range being 1 to 16 years).
Significantly, 90% of students who had ME/CFS during their schooling years went on to complete post-secondary education and were managing well in terms of leading “relatively normal lives”. It was found, the majority of young people in Dr Rowe’s study became strong, resilient and determined adults with very few dropping out of their courses.
‘Adolescents with ME/CFS: a Teen and a Parent Explain‘ ProHealth, 2012, July 4th.
The Extra Burdens Faced by Young People with Chronic Illness, by Toni Berhhard, J.D., Psychology Today.
Keeping Connected – Identity, social connection and education for young people living with chronic illness – Final Report 2010 – Lyn Yates, Lyndal Bond, Mary Dixon, Sarah Drew, Peter Ferguson, Trevor Hay, Julianne Moss, Pamela St Leger, Hannah Walker, and Julie White – also see the project’s website.
Research Journal Articles
Collin, S. M., et al. “Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is different in children compared to in adults: a study of UK and Dutch clinical cohorts.” BMJ Open, 2015, 5(10): e008830.
Katz, B. Z. and L. A. Jason. “Chronic fatigue syndrome following infections in adolescents.” Curr Opin Pediatr, 2013, 25(1): 95-102.
Nijhof, S. L., et al. “Internet-based therapy for adolescents with chronic fatigue syndrome: long-term follow-up.” Pediatrics, 2013, 131(6): e1788-1795.
Nijhof, S. L., et al. “Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial.” Lancet, 2012, 379(9824): 1412-1418
Burgess, M. and T. Chalder. “Adolescents with severe chronic fatigue syndrome can make a full recovery.” BMJ Case Rep 2011.
Knoop, H., et al. “Efficacy of cognitive behavioral therapy for adolescents with chronic fatigue syndrome: long-term follow-up of a randomized, controlled trial.” Pediatrics, 2008, 121(3): e619-625.
Stulemeijer, M., et al. “Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: randomised controlled trial.” Bmj, 2005, 330(7481): 14.
Chaudhuri, A. “Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: data are insufficient and conclusion inappropriate.” Bmj, 2005, 330(7494): 789-790
Sawyer, S. M. and R. A. Aroni. “Self-management in adolescents with chronic illness. What does it mean and how can it be achieved?” Med J Aust,2005, 183(8): 405-409.