The Premium Debate: Subscribers react to mum who had to give up job to care for daughter with ME

Rebecca Miller has had to quit her job to look after her daughter, who is living with chronic fatigue syndrome. Photo / Alex Cairns

OPINION

A Bay of Plenty mother has quit her job to become a fulltime carer for her 17-year-old daughter, who is living with an “invisible illness”.

Rebecca Miller’s daughter, Rachel Miller, was diagnosed with moderate to severe myalgic encephalomyelitis (ME) – also known as chronic fatigue syndrome (CFS) – two years ago.

Rebecca said Rachel’s condition was a “heartbreak” for the Te Puke family and meant Rachel missed out on milestones such as graduating from high school, attending the school ball, going to university and getting a job.

Read the full story: Chronic fatigue syndrome: Bay of Plenty mother quits job to care for teen daughter.

Have your say by going to bayofplentytimes.co.nz and becoming a Premium subscriber.

This article also highlights the challenges family carers face and impact families when they need to leave paid employment and provide care, with limited support for not only the person they care for, but for themselves.

Mchael S

Too often, ME or chronic fatigue is casually dismissed as a physiological disorder, or just people shirking. It is a legitimate illness, although many GPs simply dismiss it as “tiredness”.

This ignorance often aggravates sufferers, who feel frustrated that they are not ‘heard’ and that the medical fraternity often fails to recognise just what exactly is reality.

David F

No one with ME/CFS such as myself (30 years with it) has had free help like that.

A few bed-bound sufferers get home cleaning, but that requires meeting a very high threshold of disability.

If you can afford hundreds of dollars for those services after losing your job because of illness or you have to give up your job to be a carer, then great.

The rest just have to suffer at home with advice from ANZMES, the national support group.

It is by far the most useful, as most GPs haven’t a clue and give the wrong advice, which makes the illness worse.

It needs to be recognised as a disability, and Te Whatu Ora needs to find out from ANZMES what is true about this illness and not be ignorant. Long Covid is going to be a real problem.

Frankie & P E L

I can only imagine that Rebecca provides a great deal of both emotional and physical support to her daughter.

As a stage-four cancer patient, I can say it is a lonely road, day in, day out, when you’re exhausted and by yourself, even if you can manage bathroom and toilet necessities.

Kerry B

There are some really good threads on Twitter [now X] on this condition. Contributors include scientists living with the condition themselves, especially post-Covid and post-vaccination. Hopefully a breakthrough is not far off.

Kate B

Republished comments may be edited at the editor’s discretion.

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