In recent months, two dear friends of mine have faced the possibility that their teenaged children ('B' and 'J') may have CFS. This is the information I gave them to support them at this time. Maybe you will find it helpful to pass on to people you come across in a similar situation.
Illness severity
I have been sick with CFS for over eight years and for all of that time I have been bedbound for all but 3 hours per day. However, within people diagnosed with CFS there is a wide range of symptom severity: there is a good chance that your child will never be as sick as I am. Some people have much milder symptoms than me and even manage to hold down a fulltime job. There is also no reason to assume that a CFS diagnosis is a life sentence. Around 80% of people with CFS get significantly better within 2-5 years and a further 10% recover fully. Only 10% are in my situation of having been sick for some years without significant improvement. The most likely scenario is that B and J will return to reasonable health within five years, although they may well continue to have somewhat fragile health.
A formal diagnosis
People sometimes refer to anyone who has been weak and tired for a long time as having 'chronic fatigue'. Actual CFS is more than that: it means that the patient has had a particular collection of symptoms (e.g. those listed in the 'Fukuda definition') for at least six months. To see if J or B has CFS you will need to get a diagnosis from a doctor familiar with CFS who will check their symptoms and test for other potential causes of them. Before seeing such a doctor you may want to go through this questionnaire in order to get some idea whether CFS (called CFIDS in North America) is a likely diagnosis.
Unfortunately, getting a CFS diagnosis can sometimes be quite difficult. Some doctors in New Zealand refuse to diagnose CFS because they believe it doesn't exist; others refuse to do so because they think that it is too depressing to give someone a diagnosis for which there is no cure. If your GP turns out to be one of those doctors then you may well need to find a new GP.
Despite the difficulty it can sometimes pose, a formal diagnosis is worth the effort.
Firstly, it gives you access to various therapies that have been found to relieve symptoms and improve the quality of life for people with CFS. None of these treatments seem to help everyone with CFS, possibly because CFS is actually more than one illness with overlapping symptoms, but you should find some that help a lot.
It also gives you access to all kinds of support, especially if you join ANZMES, the national support society for people with CFS. Membership costs $40 per year, for which you get a quarterly magazine with stories of, and tips for living with, CFS, as well as the latest medical news. I have found that reading other people's stories in the magazine helped me to feel less alone and also gave me a vocabulary to explain to other people what had happened to me. ANZMES also provides members with contact details of other people living with CFS and some parents with CFS-affected kids. B or J could probably also find online chatrooms where they can make contact with kids 'like them' around the world.
Last but not least, if you've got a diagnosis then you'll be at the front of the queue when a cure for CFS is finally found!
Managing the illnesses
Until a cure for CFS is found, your best approach to supporting J or B in living with this condition is to develop a management plan with them. This will consist of a mix of medicines/supplements, coping strategies, and changes to their diet, exercise and physical environment in order to give them the best quality of life possible. A particularly important part of this is to work out how to stabilise their energy levels, rather than slipping into a boom and crash cycle. This stability and predictability tends toward better mental health and also makes it easier to plan for the near future and to engage in social activities.
The medicines and supplements that they take (including over-the-counter ones) as well as any special diets they try should be recommended by a doctor and be ones that have been found to be helpful in CFS. Medicines and supplements that are helpful in other forms of fatigue may well be of no help in CFS. In the same way, supplements that are not usually taken for fatigue, such as zinc and Vitamin D, may well be prescribed to a CFS patient. ANZMES can provide you with medical information to give to your GP to guide them in caring for you.
It is also important to develop coping strategies for living with this new condition. This takes time, as it involves learning the individual's limits in terms of physical, mental and social activity and their tolerance to noise, light, highly stressed people, particular smells etc. This information will enable you to establish a daily routine that keeps them inside their 'energy envelope' most of the time. The articles on pacing in Meeting Place issues 101-103 should help you get started with this.
It is also worth examining each of B or J's daily activities and asking whether they need to do that task personally, and, if so, whether there are less energy-intensive ways of carrying it out. For example, I save energy when showering by putting on a towelling robe instead of towelling myself off so I only need to dry the bits of me the robe doesn't touch. When I'm doing very poorly I reduce the energy required even further by getting my husband to wash me. The MP article (issue 85) on enabling technologies will give you further ideas on low-energy strategies for accomplishing various everyday activities, as will this page.
Lastly, your local DHB will provide OTs, physios and dieticians who help people live with chronic illness. They can teach J or B exercises to help maintain core strength and muscle tone in people with restricted capacity. In addition, they can provide advice on eating to maintain a stable and appropriate weight while getting adequate nutrition. Also, they can prescribe equipment to make it easier to get around the house independently (e.g. a walker or over-toilet frame) and even arrange structural alterations to your home. These therapists see people with many different conditions, so may appreciate the medical information on CFS that ANZMES provides for GPs.
In the Auckland District Health Board area these services are provided to house-bound patients through 'Home and Older People Health' and to more mobile patients through the outpatients service of the hospital. In order to access either of these you will need a referral from a GP. The first step is typically a 'needs assessment' by a specialised assessor who will then refer the patient to specific therapists.
Beyond the everyday
Attempting anything beyond the norm for people with CFS is a challenge: it can be hard to predict likely energy levels in an unfamiliar environment or whilst doing unusual activities. I believe that the most important principle to keep in mind when doing something out of the ordinary is to keep plans as flexible as possible and/or always have a Plan B! For example, if you're hoping to make an unusually long drive somewhere then make sure that you have thought through where you could stay overnight at the other end in case J/B isn't well enough to make the trip home again.
Conclusion
All the best as you learn to live well in this new situation!
Heather - July 2011