M.E. emerges from the wilderness

Dec 14 2004

In 1955 medical literature first defined and described M.E., an illness that had probably been with us for hundreds of years. But with a wide range of symptoms, no diagnostic test and much misunderstanding about its cause, people with M.E. often had to struggle to manage the illness with little support from specialist services.

Those few NHS specialists who took on the illness were overwhelmed with demand, and for the 240,000 people with M.E. finding a specialist was a lottery. Even worse, for those most severely affected the barriers of getting to a specialist were so great that they faced the bizarre situation that “the most ill got the least care”.

Some in the medical profession failed to recognise that children get M.E. too, and they and their families sometimes experienced disbelief.

But things are now on the move in England.

In 2002 Government formally recognised the illness as real and severe in its impact

In 2003 the Medical Research Council published a national research strategy, recognising that the needs are urgent and across the full spectrum of research

A study has been funded into “Pacing”, the management approach most favoured by patients, comparing it with other mainstream rehabilitation approaches

NICE are now preparing guidance on diagnosis and treatment, for publication in 2007

And in England, the NHS has been given £8.5m to start a network of services, providing 13 regional co-ordinating centres and 50 local teams. These developments are unparalleled. We have seen more improvements in the last 3 years than the previous 50.

We welcome unreservedly these developments, and the commitment shown for involving people with M.E. in the decisions on awarding funds to the new services and their planning and design.

At last people with M.E. can have hope.

But we recognise that there is much still to do.

It will take time for the NHS to catch up with the demand for care built up over the wilderness years.

M.E. is still misunderstood in society and people continue to encounter ignorance and prejudice

Too many people are diagnosed late, and when diagnosed there is still no cure

More scientists are needed to take an interest in the illness. The national research study could become irrelevant if scientists do not submit high quality proposals

And England is now far in the lead. For those people with M.E. in Scotland, Wales and Northern Ireland, the developments carry little relevance. The developments and the leadership and commitment shown by government are remarkable, and are an important start – but they are the start and not the end.

Chris Clark
Chief Executive
Action for M.E.

M.E. (short for myalgic encephalomyelitis or encephalopathy) is also known as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS)