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Your child's doctor

Your child's doctor

Your GP should be your first and best contact in terms of managing your child’s M.E. on a regular basis. You may be lucky and find a GP who has a special interest in M.E., but some GPs lack experience in dealing with this complex illness, particularly in children. If this is the case you could ask if there is another GP within the practice, or a nurse or other healthcare professional, who has an interest in M.E.

Depending on where you live, your GP may refer your child to a specialist; you can find your nearest one in our services directory. A visit to a specialist is known as "secondary care" and can only be arranged through your GP. All children should be under the care of a paediatrician, even if this has to be someone at a distance, to whom your GP can refer for advice and guidance. They can also confirm the diagnosis, co-ordinate care and help with any educational and social issues that arise. 

Doctors you might come into contact with include:

  • a District General Hospital Paediatrician, who looks after children and young people with all kinds of conditions and illnesses in a hospital
  • a Community Paediatrician who works with children under 16, their school and their school nurse. We do hear about Community Paediatricians who encourage children with M.E. to go back to school, even though they are not ready. In cases like these, we advise that you write a letter to the school saying that you don't accept the Community Paediatrician as being the professional responsible for decisions about your child.
  • a Child Psychiatrist or Psychologist, based within your local authority's Child & Adolescent Mental Health Services (CAMHS). These are doctors who look after mental health, and how it affects  physical well-being as well as how your child feels in themsleves. A good psychiatrist or psychologist will understand that M.E. is not a mental health condition, and support your child to adjust to living with M.E. by offering some coping strategies, helping them work out a plan to manage energy and rest, and prescribing medication that they think can help improve symptoms such as pain or sleep problems.
  • a Teaching Hospital Sub-Specialist Paediatrician, a hospital doctor who specialises in one particular area of child medicine, such as blood (haematologist), nervous system (neurologist) or immune system (immunologist).

Other healthcare professionals may need to get involved in your child’s care. This will depend on the extent and stage of their illness and circumstances and may include occupational therapists, physiotherapists, social workers, nurses and dieticians.

Every parent wants their child to get better as soon as possible but it’s important to have realistic expectations about your child’s M.E. Setting realistic short term goals with your GP, paediatrican or other professionals is an important aspect of managing the condition.

Don’t be afraid to ask any of the doctors you see to explain anything you don’t understand. It can be difficult to take everything in at once, particularly if you knew nothing about M.E. before your child became unwell. Many people find it helpful to keep a list of their symptoms which they can then take to their GP to save them having to try and remember them all – your child may find it helpful to do this, with your support.

Always ask your child in advance of appointments if they have any questions about their illness that they want to ask. Remember, with M.E. it can be difficult for your child to think on the spot, so allow them time to respond.

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Seeing a private practitioner

Many people try different approaches to help them manage their illness and their symptoms. Most private practitioners and complementary therapists are competent, ethical and caring. Unfortunately, we also sometimes hear of practitioners who promise "miracle cures," charge excessively for treatments and even harm their patients. If you are considering treatment with a private doctor who operates outside the NHS or a complementary therapist, we recommend that you:

  • talk to your GP or specialist and ask for their advice, especially if your child's treatment involves taking pills or medicines
  • always use a qualified therapist who belongs to a professional body
  • find out about their experience - how many children with M.E. have they treated recently? What have their outcomes been? What evidence can they produce to verify these outcome measures?
  • beware of any practitioner who tells you that their approach will cure your child - there are no miracle cures for M.E. A private doctor should inform your regular GP or specialist of any tests or treatment.

Read more about how you and your child can communicate more effectively with your child's doctor.