Myalgic Encephalopathy (ME)
ME or Myalgic Encephalopathy has had more names than Lloyds. Amongst other things, it is sometimes called CFS (Chronic Fatigue Syndrome) or even PVFS (Post Viral Fatigue Syndrome). Medics now seem to prefer ME, probably because that's the hardest one for the rest of us to spell, but things could change.
Whatever initials you use, the disease itself affects around 80,000 men in the UK. And many thousands are living with the disease undiagnosed.
What is it?
That's the big question. Part of the problem is that the symptoms of the disease vary considerably from individual to individual but they include:
- Overwhelming and persistent fatigue, especially after doing things that didn't used to make you feel exhausted.
- Feeling generally unwell or malaise similar to feeling like you have the flu.
- A sore throat with or without swollen glands.
- Pain in the muscles and joints, pins and needles, muscle twitching and headaches.
- Sleep difficulties
- Problems with concentration, memory, finding words and organising thoughts.
- Problems with the digestive system
- Problems with the nervous system including sweating and dizziness.
- Increased sensitivity to alcohol, medication, some foods, bright lights, noise and smells.
That must make diagnosis difficult.
Yes, and early diagnosis is vital to prevent the condition becoming more severe. This is a major problem for men because according to a recent survey by the charity Action for ME, men are very slow to get diagnosed.
- For 62% of men in their survey diagnosis took over a year.
- For 25% it took more than two and a half years.
Action for ME reckon that these figures suggest there are at least, 16,000 men in Britain with ME who are currently undiagnosed and unsupported.
Part of the problem is men's reluctance to visit the doctor and also the perception of some doctors that because ME affects three times as many women as men, it is a women's disease.
What else did the survey show about men and ME?
The survey particularly showed the price men can pay for ME:
- Nearly 1 in 4 men (22.7%) lost their home after falling ill
- Over half had gone through a divorce or relationship breakdown
- Before their illness, less than 10% of those surveyed had an income under £10,000 a year. After developing ME that figure leapt to 64.2%
What is the NHS doing about it?
Because of the variety of symptoms there is still a lot of misunderstanding about ME. Incredibly enough the disease was first identified and defined in 1955 but it wasn't until 2002 that the British government formally recognised it. Some people, including doctors who should know better, are still sceptical.
In 2003 the Medical Research Council published a national research strategy recognising that the urgent need for research into the condition. The NHS has been given £8.5m to start a network of ME services across 13 regional co-ordinating centres.
So far so good?
The cloud on the horizon is the National Institute of Clinical Excellence. NICE's recent draft guidelines on treating ME were criticised by all the ME charities and voluntary groups including Action for ME and the ME Association.
They called them a 'one size fits all' approach which was insufficiently patient-led, potentially dangerous for some and failed to recognise the need for more research. Fingers crossed that the final guidelines, due to be published in August 2007, will be better.
What's it like to have ME?
Read 'The consultant told me my illness didn't exist', an account by Stephen Calver who has had the disease for several years.
Who can help?
Page created on June 7th, 2007
Page updated on December 1st, 2009