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. Hopefully you will have a GP who understands 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.
After 3 months your GP should refer your child to a general paediatrician. After a further three months, unless your child is improving a referral should be made to a specialist M.E. paediatrician. 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 will 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 General Hospital Paediatrician, who looks after children and young people with all kinds of conditions and illnesses.
- a Community Paediatrician who works with children under 16, their school and their school nurse.
- 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 specialist paediatrician who may be part of a multi-disciplinary team with expert knowledge and experience in M.E.
We hear from parents about other health professionals who lack knowledge and understanding of the condition and pressure the family and young people to push themselves beyond their capabilities. If you find yourself in this position please get in touch.
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 dietitians.
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, paediatrician 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. Where possible enable them to ask their own questions if health and maturity allow. Remember, with M.E. it can be difficult for your child to think on the spot, so allow them time to respond.
Read more about talking to your GP about M.E.
Guidance for health professionals
The 2021 NICE guideline for M.E. has detailed information for health professionals working with children affected by M.E. and their families. This includes guidance on suspecting and diagnosing M.E., care and support planning, safeguarding and symptom management.
It says that, when working with children and young people with M.E., health professionals should ensure their voice is heard by:
- "taking a child-centred approach, with the communication focusing on them
- discussing and regularly reviewing with them how they want to be involved in decisions about their care
- taking into account that they may find it difficult to communicate and describe their symptoms and may need their parents or carers (as appropriate) to help them
- recognising that they may need to be seen on more than one occasion to gain trust (with or without their parents or carers, as appropriate)."
The NHS advises: “Some complementary and alternative medicines or treatments are based on principles and an evidence base that are not recognised by the majority of independent scientists. Others have been proven to work for a limited number of health conditions.”
- check the treatment approach on the NHS index to see if it is evidence-based
- consider your child's age and capacity to give their consent
- talk to your GP or specialist and ask for their clinical advice
- always use a qualified registered 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 cures for M.E.
A private practitioner should inform your regular GP or specialist of any tests or treatment, but not all do – nor do they necessarily have access to your child’s NHS notes. It is important that you consider how you will coordinate care safely if using a mixture of NHS and alternative/private services.