Children get ME help, but why not adults?

May 12 2008 by Nia Gibbons, Liverpool Daily Post

WENDY BOYD was a finance adviser in Liverpool John Moores University when in 2000 she started to feel, among other things, far more tired than usual.

But it wasn’t until four years later, in 2004, after years of confusion, searching the internet and waiting for specialist appointments, that she was diagnosed with ME.

Wendy, who lives in Woolton, says ME – once known as “Yuppie Flu” – is hard to describe.

She said: “There’s an extreme tiredness when you have to physically stop and sit down and yet you can’t sleep properly; even after 12 hours’ sleep’ I can still feel tired in the morning.

“My joints are painful and I forget things I was told five minutes ago. It’s very frustrating.”

Wendy’s work at LJMU ended and it was assumed she would be able to return to work when her health improved.

She then received incapacity benefit until this January when she was declared fit to work, a decision she is appealing against, and is now supported solely by her husband, Paul.

Part of the problem seems to be that there is very little known about it.

Myalgic Encephalomyelitis, more commonly referred to as ME, is described by the Action for ME (AFME) organisation as a “chronic, fluctuating illness” that can also be known as Chronic Fatigue Syndrome or Post Viral Fatigue Syndrome.

Approximately 250,000 people have ME and it can hit anyone at any age, but more commonly between mid-twenties and early forties.

Around the same time as Wendy, 48, was diagnosed with ME, both her daughters – Sarah, then 13, and Rosie, then 10 – were showing symptoms after a bout of glandular fever.

Unlike Wendy – who said that although her GP had been brilliant, she felt she struggled for help – both daughters had been given excellent all-round care in Alder Hey’s Chronic Fatigue Clinic.

She said: “The help my children got from the very beginning made a huge difference. They had a clinic with support from specialists, psychiatrists and physiotherapists. But the adults don’t seem to be getting any of it, and I have no idea why.”

There are separate Chronic Fatigue Clinics for adults and children and they offer very different services.

Wendy’s treatment mostly revolved around medicating the mental rather than physical side of ME and resulted in taking twice the regular dose of strong anti-depressants for four years.

Having quit the medication two months ago, she is now waiting to see how her body reacts without, and would like to try graded exercise therapy (GET) next.

GET is a symptom management scheme that aims to get the ME patient as close as possible into a daily routine, though this can be difficult.

A survey by AFME of 2,773 sufferers, which is released today, also finds that one third said the GET had made them worse, the same number who said their GP was either “unsupportive or uninformed about the illness”.

Wendy said: “I just don’t want to be judged. I want people to understand I may be able to do something one day and not the next. I don’t want to be like this, I just want to have a nice normal life.”

THIS week is ME Awareness Week, with more at: www.afme.org.uk