Elderly ME sufferer raises awareness of devastating effects of illness through a virtual protest | Guardian series (Essex) | 24 May 2016

May 24, 2016

From the Guardian Series (Essex), 24 May 2016. Story by Lara Keay.

A 76-YEAR-OLD who has suffered from chronic fatigue syndrome for 30 years is calling on people to take part in a worldwide demonstration to improve awareness of the disease.

Martin Arber, of Cheriton Avenue, Clayhall, was diagnosed with chronic fatigue syndrome (ME) in the late 1980s, after he found himself with constant headaches and lack of energy.

After his diagnosis at former Barking, Havering and Redbridge University Trust (BHRUT) hospital, Oldchurch in Romford, he was referred to a specialist day-care hospital in Hertfordshire.

But when the NHS cut the funding needed for his treatment, Mr Arber was forced to re-mortgage his home and pay for regular visits to the specialist centre himself.

He said: “Medical research in this country has been distorted to say that ME is only in people’s minds.

“It’s not just psychological, it affects your whole body – it’s thrown our lives completely upside down.”

Mr Arber believes his ME was triggered by the deaths of his father, mother-in-law, and wife’s aunt all in the space of just six months.

He said: “We joked we needed a free pass to the funeral directors, but it was a very tough time.

“Soon after that our house got badly flooded, and I just kept pushing and pushing myself to try to clear up the mess, which is exactly what ME sufferers shouldn’t do.

“I kept getting such awful headaches and felt so tired I couldn’t move.”

As well as suffering from ME, Mr Arber also has multiple chemical sensitivity, a damaged parasympathetic nervous system and severe food intolerances, which he believes are linked to his ME.

He said: “Because my immune system is damaged, as well as having a headache for the last 30 years, when I get ill, my body can’t fight the illness properly, which can be very worrying.

“Even if I watch something exciting on TV my blood pressure goes up dramatically.

“I don’t eat anything until after lunchtime, because it can send me straight to sleep.”

Despite being housebound, the retired social psychology lecturer has been campaigning for better research into the condition for over 20 years, and helped set up leading ME charity Action for ME in the early 1990s.

He is also one of thousands of people across the world who are taking part in a virtual demonstration to raise awareness of the devastating effects of the disease.

He said: “You don’t just lose your job and your lifestyle, you also come up against incredible stigma.

“I had someone I had never even met before insult me and tell me they didn’t believe I was ill.

“We need people to come together to fight these prejudices, to support the people who are suffering and urge them not to give up.”

Tomorrow (May 25) thousands of people are expected to leave their shoes outside the Department of Health on behalf of the millions of ME sufferers worldwide who are too ill to campaign themselves.

Mr Arber said: “Like me, most of the people who would like to be campaigning are too ill to do so.

“So you can either go on someone else’s behalf, put a pair of shoes outside your house, or take a picture of yourself and share it with the hashtag ‘Millions missing’.”

The demonstration will take place outside the Department of Health in Whitehall, central London between 12pm and 2pm on Wednesday May 25.

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