From the 25% ME Group website – https://25megroup.org/campaigning/severe-me-day-2025/
A day to remember everyone who is suffering or who has ever suffered from Severe and Very Severe Myalgic Encephalomyelitis.
A day to honour
A day to honour the strength of spirit of all those who have endured and continue to endure decades of suffering and profound physical dysfunction and yet receive little, or no recognition or help, but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability.
This Years Focus
Severe ME Awareness Day 2025 – Carers
Information for Carers
This year we decided to focus on carers for our severe ME Awareness week. We have many carers who form part of our membership. Often they are parents of a severely affected member, but we also have spouses, sons and daughters who care for family member with severe ME. We know many of you have been providing a high level of care for your loved one many years with some of you providing around the clock care. We know within your role as the carer of a loved one you often wear many hats; providing personal care, providing emotional support, advocating for and working with professionals involved in the person’s life to name but a few. 25% ME Group recognises the value and importance of unpaid carers in supporting our members who have severe and very severe ME.
Due to the very specific needs of people with severe and very severe ME, such as the sensitivity to stimuli and the post exertional malaise some of you are loath to have support from home care workers. Some of you juggle paid employment with your caring role; leaving food prepared etc before you leave for work perhaps rushing back to check on the person in your lunchtime. For some people trying to provide care for someone with severe ME and undertake employment can be a tall order or simply not sustainable. The household may lose one or two incomes; the income of the unpaid carer in addition to that of person with severe ME. In addition, household costs often rise – for example the cost of utilities such as heating and water can go up drastically. Less income can negatively impact the whole family and not just financially. A lack of disposable income can leave children unable to enjoy the extra curricular activities etc.
There are forums where unpaid carers can talk with other unpaid carers and share experiences. Local authorities usually have a carers’ group which anyone providing unpaid care can attend. At 25% ME Group carers of people with severe ME can add their details when the person with severe ME joins and be added the contact list to find other carers in similar situations. Carers have said this has helped them feel lees alone in their caring role. It can also be a way to share tips. Carers can also be on the 25% ME Group closed Facebook page.
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