by Jane Colby
Member of the Chief Medical Officer's Working Group on CFS/ME Children's Group
Executive Director of Tymes Trust
former Head Teacher
with advice from Dr Nigel Speight
Note: This document refers in particular to consultants, because children with ME are generally referred to consultant paediatricians who are likely to play an important role in their treatment. As you read on, bear in mind that this information is also relevant to the views of GPs and other medical professionals.
The chances are that your child will be referred to a consultant paediatrician. What might happen as a result?
There are many reasons why a referral to a consultant takes place. Perhaps you asked to see a new consultant yourself in order to get a second opinion on how to manage your condition, or perhaps your GP decided on this course of action, maybe to help with diagnosis.
We are often told that the scary thing for young people with ME is not just that they are going to see a new doctor (which can involve travelling and can be exhausting in itself) but the fact that they do not know what their new consultant thinks about ME and what he or she will recommend by way of treatment.
There are essentially two different schools of thought amongst doctors when it comes to ME. You could even think of them as belonging to Type One or Type Two, although of course in practice all doctors are people and will have their own individual approach. It is also quite possible for some elements of the Type One and Type Two approaches to come together in one person.
However, for ease of understanding the present medical divisions both in attitude to the illness and treatment of it, you can use the following simplified guide.
A Type One consultant will approach the problem roughly like this:
Patients with ME have a physical illness and need to take life fairly easily and live within the energy limits imposed by their condition. They also need to avoid stressful situations or working too hard. This will slowly enable the body to heal itself.
Children may need supporting letters to enable them to get aids such as wheelchairs, transport to school, orange badges and benefits to help pay for their needs. They may need letters of support for home tuition or other forms of distance learning.
A Type One consultant paediatrician is Dr Agrawal of St John's Hospital, Chelmsford. He is the consultant of Sarah Gill, the teenage girl whose case history was used to develop our Collaborative Care Management Model (to be found on our website).
Dr Agrawal says: "I realise that the most important job I can do is to be sympathetic and explain to children with ME that with a careful lifestyle they will self-heal." The family cannot speak highly enough of Dr Agrawal and his support for their daughter's needs, in particular in fulfilling that vital task of writing letters to the school.
GP Magazine have featured the preliminary report of our Collaborative Care Management Model (all about how to manage childhood ME in primary care) in their issue of 9 July 1999; copies of the article can be obtained by sending a large SAE to Young Action Online. We would also appreciate a donation of stamps to cover photocopying costs. The magazine goes to GPs' surgeries free of charge but you may like to make sure your GP has seen it as it contains a specially devised GPs' Action Framework.
Dr Nigel Speight and Dr Alan Franklin are two other consultant paediatricians who also follow the Type One approach.
There are probably many other Type One consultant paediatricians around the country and we would like to hear from you about them. Please write to the address at the bottom of this document or email firstname.lastname@example.org.
A Type Two consultant will approach the problem roughly like this:
ME - as a long-lasting illness - is at least partly a psychological condition. Even if it was triggered by a virus or other physical cause, patients do not need to go on living very restricted lives for a long time. They need to try and slowly increase the amount they do and go back to school as soon as possible.
Patients may need Cognitive Behaviour Therapy, which teaches positive thinking techniques, combined with graded exercise/activity to accustom their bodies to getting back to normal. This should sort out the two main problems holding up recovery, which are considered to be:
- fear of doing more in case it provokes symptoms;
- getting unfit because of being inactive.
Cognitive Behaviour Therapy and graded exercise/activity for children is not yet evaluated in terms of a library of published papers. There is disagreement between patients about whether they have been helped or set back by these forms of treatment.
However, some hospitals and ME clinics are now offering this treatment for children - or a variation upon it - and the consultant to whom you have been referred may be based at one of these. There may be a programme of activity and rest devised for you by the doctor to try and stop you see-sawing between doing too much when you start to feel better and making yourself worse again so that you have to do nothing for a while. But the thrust of the whole procedure is always to slowly increase what you do over time. There are in-patient units at several hospitals where children stay in the unit for several weeks at a time.
Doctors carrying out this type of treatment sometimes have long waiting lists because the impression has got around that this is the recommended treatment for ME. In fact, the Department of Health does not recommend any particular treatment for ME, and is unlikely to issue any guidelines to doctors until after the report of the Chief Medical Officer's Working Group set up in 1998 to look at the whole spectrum of the disease.
You may want to know if your consultant is Type One or Type Two before you decide to see him. You may know of people who have been made worse by Cognitive Behaviour Therapy and graded exercise and you may wish to avoid such treatment. On the other hand, you may have met someone who has found such treatment helpful and you may be looking for someone to carry it out.
You and your parents have the right to decide what kind of treatment to accept. It is worth remembering that the name "Chronic Fatigue Syndrome" (which is the name now used for ME by many doctors) may well contain under its umbrella several different medical conditions and so it is not surprising that some people are helped by a particular treatment and others are not. It does not mean that the doctors advocating one type or another type of treatment are wrong. It means that you need the right type of treatment for your own illness. You and your parents know best what makes you feel worse and what makes you feel better. Do not be afraid to say so.
There is a school of thought which tells ME patients that if they try to do more, they must expect to feel worse before they feel better. As a former trained dancer, I can tell you that this is even what happens to someone who is perfectly healthy when physical training to get fitter is undertaken. There may be pain due to a build up of lactic acid in the muscles and so on. However, tests on some people with ME have found that lactic acid builds up too quickly in their muscles compared to the muscles of a healthy person. There are other differences too.
You will need to decide for yourself whether the discomfort you experience when you start trying to do more comes into this "normal" category or into the category of "things that make me really ill". Are you set back for days or even weeks? Do you get headaches, feel sick, shaky and unable to think straight? Do your muscles (eg your thighs) start twitching? Are your heart rhythms sometimes affected?
Because not enough is known about ME, it is up to you to tell the doctor how any treatment affects you. So, if you decide to go with a Type One or a Type Two doctor, or a doctor who is a mixture of the two or has another individual approach, keep evaluating how the treatment affects you. Withdraw if you need to - it is your right - or continue, according to your own wishes and those of your parents.
Remember that some people improve despite, rather than because of treatment, and that re-integration to school does not count as "successful" re-integration unless it disadvantages neither your health nor your academic results. If you are being made worse by trying to get to school, or if you are not learning anything because going to school exhausts your brain and stops you concentrating, you need to look at alternative schooling for a while.
There is no proven "cure" for ME, no matter what anyone may tell you. It is one of those illnesses which depend on your body to heal itself. Therefore, keep using your own judgement.
Here is a pro forma letter which your parent could send to your new consultant if you wish to ascertain something of his/her views about ME and the treatment which may be offered.
If you are over 16 you may want to send the letter yourself, amending the wording where the letter refers to "my son/daughter" and missing out the sentence beginning "It is because I wish to do the best for my child…"
We suggest that the letter should be written out by hand, enclosing a stamped addressed envelope for the reply.
We have not turned the letter into a full questionnaire which would enable you to gauge the fine detail of your consultant's approach in case it is interpreted it as an aggressive move on your part. The sending of a questionnaire might raise fears that it would be used for other means than to inform your own decisions. Doctors are also very busy and would not necessarily have time to fill in a full questionnaire. On Dr Speight's advice, therefore, we have restricted the questions to three simple open-ended ones which will give you a fair idea of your new consultant's management of ME.
You may also wish to ask your GP what the consultant specialises in. For example, is the consultant a paediatrician, a neurologist, a microbiologist or a psychiatrist?
Pro-forma letter to your new consultant
It has been suggested to me by my GP that my [son or daughter], who has CFS/ME, be referred to you. He/she is [insert age] years old.
Whilst I understand that you would of course tailor your advice to the needs of our particular case, I would be most grateful if you would let me know something of your general approach to this illness, since there seem to be several schools of thought as to the management of the condition.
For your convenience, and to avoid taking up too much of your time, I have listed my questions below. Thank you in advance for your help. It is because I wish to do the best for my child that I am seeking information on the illness and the management of it.
I enclose a stamped addressed envelope for your reply.
Print your name clearly under your signature
- What is your general approach to the management of CFS/ME? (e.g. what types of therapy and medication, if any, do you prescribe?
- What is your general advice with regard to the education of children with CFS/ME?
- Do you generally advise child patients to use wheelchairs or get orange badges if they have restricted walking ability?