IT is bad enough to be ill in the first place but when people refuse to believe you’re sick, it must be infuriating. But blunt, unsympathetic scepticism is typical of the more unpleasant reactions to myalgic encephalomyelitis more commonly known by its initials, ME, although there is far less ignorance about it now than there was.

Critics, people who may well be the sufferer’s family, friends or work colleagues, tell them they are being lazy or say “it’s all in your head,” “pull yourself together” or a thousand-and-one other pearls of wisdom, often based on nothing but personal prejudice.

Judy Hughes, aged 47, of McIntyre Road, St John’s, Worcester, who copes with ME daily, knows there is nothing imaginary about it but has found humour to be the best weapon against ignorance.

She said: “Someone said to me once at a colleague’s funeral, ‘I don’t believe you!’ I stupidly joked about it and said, ‘When you get a post card from the Himalayas you will know I’m okay’. At that time I was very ill. I tried to explain it to them by saying it’s like back pain – just because you can’t see it doesn’t mean it isn’t there. You have to try and be humorous to deal with it.

But sometimes, it does upset me.

Sometimes people say the wrong thing and if I’m particularly tired or feeling stressed it can be the straw that breaks the camel’s back.

You just have to tell people, ‘You don’t live with it so you don’t know’. Even my brother once said to me that I should go to the gym three times a week. I said: ‘I’ve have had ME for 27 years – don’t you know?’”

People often only seem to believe you’re ill when they see some physical sign of it – like a bandage or a pallor in the face. But with ME there may be no physical sign of illness, which may make it harder for some people to accept that it is real.

For example, Mrs Hughes had a hysterectomy in March which, although unpleasant, was not nearly as unpleasant as her ME.

“I got cards and flowers when I had a hysterectomy but all the time I have had ME I have never had anybody send me cards or flowers.

In some ways I was far more ill with ME. When I had the operation I had a walking stick to begin with.

Suddenly people saw me as being ill because I had a stick,” she said.

Fortunately, Mrs Hughes’ family are very understanding – her husband Bob does the shopping, the ironing, the washing up and some of the cooking while holding down a full-time job as a land drainage engineer. Even her son Greg, who is just nine years old, understands that his mother needs more time to rest and recover than other people because of her ME.

Not everyone in health circles seems quite so tuned in to ME, and Mrs Hughes says sometimes people with the condition seem to know more about it than GPs themselves.

Mrs Hughes has never suffered from depression so when her doctor tried to prescribe her Prozac she said no. It is a word she has to use often because if she agrees to all the demands made on her time she can do too much and become ill.

Mrs Hughes does not support the view that people with ME are the depressive types. She believes many are driven people who take on more than they can cope with.

She is a case in point. She has been to the Chelsea School of Art where she specialised in textiles, also studying at Winchester and Coventry University where she completed a masters degree in textiles and computers.

She has climbed the Himalayas, where she met her husband, travelled in Australia and India, raised a son and was a senior lecturer at Cheltenham, a job she loved but had to give up 12 years ago when she was first diagnosed.

The causes of ME are fiercely debated but Mrs Hughes believes they developed out of glandular fever when she was just 19 years old, followed by viral fever and post-viral fatigue. This is backed up by research which suggests the condition can be triggered by infection, vaccination or stress.

She describes her symptoms as being like a bad bout of flu – her body aches, her glands swell up, she gets a sore throat and a headache and cannot cope with noise. Mrs Hughes, whose lifelong passion is art, has devised a quick, impressionistic style so she can complete a painting inside 30 minutes, a style she calls “fast and loose.” Her favourite mediums are acrylics and watercolours and her work is often vibrant landscapes.

Mrs Hughes appeared on Watercolour Challenge in 2001 and has volunteered at St Richard’s Hospice in Worcester for 17 years where she runs creative therapy sessions.

Fast and Loose is a painting group she runs in St Clement’s Church, St John’s, Worcester.

She also says yoga, swimming, aromatherapy and reflexology have helped her manage her condition.

She tries to do enough exercise to stay healthy but not so much it makes her sick, eats well and tries to get enough sleep.The most important message she wants to leave is one of hope for people with ME. With the right support there is no reason why they cannot, like her, lead a happy and fulfilling life.


There are a number of different names for what is an illness of uncertain cause affecting many thousands of people. Currently it is estimated that about 250,000 people in Britain are affected.

Different names include myalgic encephalopathy (ME), myalgic encephalomyelitis, chronic fatigue syndrome (CFS), post-viral fatigue syndrome (PVFS) and chronic fatigue immune dysfunction syndrome (CFIDS).


All types of people at all ages are affected. Severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration are commonplace.

In many cases, onset is linked to a viral infection. Other triggers may include an operation or an accident, although some people experience a slow, insidious onset.


The illness has an individual element – one sufferer’s particular version is probably not the same as anyone else’s in all its respects.

As a result, they may find that a treatment that relieves particular symptoms for someone else may not do the same for them or could make them feel worse. Or, something which one found to be of little use could be useful to another. Both mainstream and complementary medicine practitioners have some ideas to consider.


There is an increasing body of evidence to show the benefits of complementary medicine but many of the reports of complementary treatments are anecdotal. This doesn’t mean that they don’t work for particular individuals, it means no formal medical evidence has been independently collected and approved by the medical community in general.

Complementary treatments are not widely supported by mainstream medical professionals.

Complementary therapists tend to the ‘whole person’, as opposed to particular symptoms or a particular condition. An initial consultation could be quite lengthy, with the sufferer asked many questions about themselves, not just about their perception of their illness. For more details, visit