ME patients 'neglected and suicidal'

Chronic fatigue syndrome patients miss out, says charity

Over half of people with the debilitating condition ME, or chronic fatigue syndrome, have felt suicidal, a survey has found.

The charity Action for ME has carried out the largest study of patients. It found patients suffered a "catalogue of failure and discrimination".

It says its damaging findings should act as a "wake up call".

It estimates ME costs the UK £4 billion per year, while just £200,000 is spent on research.

I am ... shocked at the despair we found among those who are most severely affected by M.E

Chris Clark,
Action for M.E.

The Chief Medical Officer Professor Liam Donaldson is to publish a report into the condition later this year.

Action for ME is calling for a series of measures to improve services for people with the condition, and to educate people in the NHS and Benefits Agency about ME.

It found patients often have to fight to have their condition recognised, and do not get the same assistance as people with other conditions.

Its report said: "It is clearly a misconception to think of ME as a "mild" illness.

"It is neither mild for the people who have it, nor is the impact on the wider community mild.

"A large portion of the ME community is, at one level invisible, but we should be under no illusions that the impact of this illness affects more than the 150,000 people who actually have it."

Wait for diagnosis

A third of the 2,338 people who responded to the survey said they had had to wait more than 18 months for a diagnosis, but 52% of those surveyed said an earlier diagnosis would help.

Just under 80% said they had experienced severe pain because of their illness.

M.E. facts

51% have felt suicidal

65% had no advice from their GP about the illness

33% waited over 18 months to be diagnosed

Two thirds had received no advice on how to cope from their GP, and 53% are not regularly monitored by an NHS practitioner.

Seventy per cent of ME patients who completed the survey are sometimes or always unable to get to the doctor's surgery.

But 80% of those who are bedridden with the condition have been refused a home visit.

Others are unable to access state benefits, which the charity believes they are entitled to.

Chronic fatigue syndrome, has been described by the World Health Organization as a disease of the nervous system.

People are affected differently by the condition. Some continue normally, but others can be bed-ridden for months, or even years.

The most common symptom is for a person to contract a virus and still be suffering six months later.

Bed-ridden

Nearly a third of those surveyed told Action for ME they had been bed-ridden or house-bound by their condition.

Less than 5% are completely dependent on other people.

This gives weight to the fact we need to carry out extra research, and put money into the care and support for ME sufferers

Tony Wright MP

Thirty-five per cent use a wheelchair.

Action for ME is demanding better community services and specialist in-patient facilities for patients, who are extra sensitive to the light, noise and chemicals found in normal hospital wards.

It is also demanding better guidelines for early diagnosis and management of the condition for doctors.

And it wants to see government sponsored research into ME.

Chris Clark, chief executive of Action for ME told BBC News Online: "We need to have services that meet the needs of people in their own home, and address the absence of specialist in-patient care."

"I am not only shocked at the despair we found among those who are most severely affected by ME, I am also appalled that the very services that should be helping them have made things worse."

Tony Wright, the Labour MP for Great Yarmouth, who is chair of the All Party Parliamentary Group on ME, said: "This gives weight to the fact we need to carry out extra research, and put money into the care and support for ME sufferers."