Wednesday, 5 October 2022

Caring For Someone With Myalgic Encephalomyelitis (ME)


Many people who look after others with ME don’t see themselves as carers, they see themselves as parents, husbands, wives, partners, family & friends.
Being a carer for a person with ME can be a fulfilling yet challenging experience, a diagnosis of ME can cause so many issues and raise so many questions, some of which do not have simple solutions or answers. There is a lot of information to absorb and at times it can be quite overwhelming.

The links below to our blog posts specifically about carers & caring have been created to support people in their role as carer and hopefully help to make caring less overwhelming.

Posts about Carers & Caring 

Carers in the ME Community - 

Carers Notes & information for family & friends who care for people with ME including Severe/Very Severe ME - 

Young people, especially children, might find it difficult to get across that something is wrong with them. They may not realise that the loss of energy or other symptoms they are experiencing are abnormal or they may not have the words to describe exactly what they are feeling. You might notice changes such as reduced physical activity, trouble with concentration, difficulties with school work, and that your child is not as energetic as they once were.

Caring for Children & Adolescents 

Paediatrics & Adolescents Part 1 - 

Paediatrics & Young Adults Part 2 - 

Other helpful posts including posts to Inform the Carer about ME 

An overview of Severe and Very Severe Myalgic Encephalomyelitis -

'My Needs' Templates for hospital admission or other care setting -

Other useful posts can be read on MEAI's blog, please check out the index to the right of the home page for more titles via this link here

Don't Forget To Look After Yourself If You are a Carer 

  • Find support from family and friends.
  • Regular breaks are important for your own self-care.
  • Developing an emergency care plan is a good idea if you are suddenly unable to provide care in the event of illness or accident. Having all important information on the needs of the person with ME in one place for potential medical/hospital/ER appointments will help reduce stress.
  • Join a support group. There are online groups that you may find helpful and give you a place to go for support and to talk with others in a similar situation.
  • Investigate if you are eligible for financial support from the Irish Government & Welfare System for example Carers Allowance or any other Carer Payments, and apply for what you are entitled to.
  • Talk to your family doctor or other health care professional about any concerns that you may have.

Thanks to the ME community and in particular to carers for your feedback via various social media pages and by email, your feedback is important.

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