the bbme logo, this consists of a circle from which three hands reach into the cntre towards one another, each hand is a colour that represents the support ribbon colour for their respective condition, one is dark blue for MECFS, another is purple for Fibromialgia, and the other is teal for Long-COVID, overlaying the circle the text reads "BBME Support Group", as well as the groups moto "Breaking the Isolation"

Children and Young People

Anyone at any age can be affected by ME/CFS, FMS or Long-COVID.

But the young have their own set of needs and hurdles to face, and the BBME welcomes people of all ages.

an image of a white teenager seated on a couch in a counsellors office, the female counsellor is sitting and listening attentitively

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We have a wealth of information throughout our website relevant to people of all ages, so please do explore.

Healthcare

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Even the young, including very young children, can be affected by ME/CFS, though some doctors unfortunately still dispute this. The NICE guideline has some specific recommendations regarding CYP (children and young people), including:

  • process of diagnosis

  • involvement of specialist doctors

  • frequency of reviews

  • advice on education (if it's possible)

  • options such as online learning

  • issues around safeguarding

NICE Guidelines?

A NICE guideline is an evidence-based set of recommendations developed by the National Institute for Health and Care Excellence (NICE) for healthcare professionals in England and Wales. These guidelines aim to improve the quality of care, promote health, and prevent ill health by providing guidance on things like prescribing medicines, recommending treatments, and ensuring patient safety.

Read more general information about NICE guidelines here

The ME/CFS NICE Guidelines

This is NICE's official page for the Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management NICE guidelines

However, the ME Association has uploaded a searchable copy of the current ME/CFS NICE Guideline. Enter “Under 18” in their search box to find relevant information.

Other Useful Leaflets

The ME Association also has the following free leaflets available to download on the following subjects:

  • Diagnosis and management in young people: a primer

  • MEA Children and Adolescents

  • MEA Severe ME in Children

Member-Recommended Services

We don't know of a local paediatric service that we could recommend at the moment. Dr. Nigel Speight is a renowned and very empathetic paediatrician, specialising in Pediatric ME/CFS, who is in very high demand. However, he is semi-retired and is based in the North East. Also, Dr. Weir is highly regarded in supporting children and families, and is based in London.

Contact Details:

Dr Nigel Speight

speight@doctors.org.uk

Dr. William Weir

10 Harley St, London W1G 9PF

020 7467 8478

wrcweir@hotmail.com

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Information Pending - If you have any information you would like to contribute, please email us via our Contact Us page with Website Info Suggestion in the Subject line.

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Information Pending - If you have any information you would like to contribute, please email us via our Contact Us page with Website Info Suggestion in the Subject line.

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Local Council Support - Care Needs Assessment

an image of a teenage boy reclined on a sofa looking exhausted, his mother and brother are busy and active in the background

With a diagnosis in place, carers may wish to ask their local council for support services for the child or young person, as well as for themselves.

Your child or young person is entitled to a Care Needs Assessment, and you are also entitles to a carer’s needs assessment.

For the latter, please visit out Carers Page for details.

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For Bury, the Adult Social Care Team advised that your first port of call should be Child Wellbeing Services. Furnish them with information about your child or young person’s condition, what they are facing and struggling with, and request a Social Care Needs Assessment for your child, age range 0-15 years.

The team can be contacted by phone or email through the MASH:

Bury Multi-Agency Safeguarding Hub (MASH) Team 

Based in:

Greater Manchester Police
Bury Divisional Headquarters
Dunster Road
Bury
BL9 0RD

0161 253 5454
Emergency Out of Hours: 0161 253 6606
childwellbeing@bury.gov.uk

We’ve also located a page for Bury Council’s Children with Disabilities Team 

3 Knowsley Place
Duke Street
Bury
BL9 0EJ

0161 253 6070
CWD@bury.gov.uk

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For Bolton, the Early Intervention Team advised that your first port of call should be Children’s Services.

Their contact details are here. This also contains a section called Disabled Children and Young People.

Finances

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Paid to the caregivers of children and young people under the age of 16, you may be eligible to receive Disability Living Allowance (DLA) for children, which can help with the extra costs of looking after a child who has difficulties walking or needs much more looking after than a child of the same age who does not have a disability.

See our Finances section on our Resources page for more information on how to apply for this benefit.

Support & Information Services

Please be sure to see our section for Carers to get the support that You need in caring for a Child or Young Person with this life changing condition.

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Members of the BBME Support Group highly recommend the charity TYMES Trust (The Young ME Sufferers Trust).

The charity is run by Jane Colby, a former head teacher, who has personal experience of ME/CFS.

The website is full of useful publications and there is a dedicated helpline.

The Parents of children with M.E./CFS Support Group  private Facebook group has offered much support to group members.

If your family is facing difficulties with local authorities because of education or safeguarding, please Contact Us to see if we can offer support, or signpost you in the right direction.

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Information Pending - If you have any information you would like to contribute, please email us via our Contact Us page with Website Info Suggestion in the Subject line.

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Information Pending - If you have any information you would like to contribute, please email us via our Contact Us page with Website Info Suggestion in the Subject line.

Maintaining Good Mental Health & Wellbeing

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While a lot of the information throughout our About… section is relevant to people of all ages, the process for getting Mental Health support specifically for children and Young people is different from that for adults.

The NHS website covers this subject fairly broadly.

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We'd love your input!

Right now, the content for this website and this page in particular was generated by adults, and a parent with children and young people who have ME/CFS.

If you are a young person, or the parent of a child or young person with ME/CFS, Fibromyalgia, or Long-COVID, and you have useful information to share, or ideas for what you would like to see in this section, please ping them across to us in an email via our contact form in our Contact Us section for review.

This is a support group of your peers, so it’s made for you, by you.

Your thoughts and ideas matter.