The severely affected
Around 10 to 25% of people with ME/CFS are reported to be housebound or bedbound.
Surveys by the 25% ME Group and Action for ME show that:
- The overwhelming majority suffer severe pain.
- More than half are unable to attend their GP surgery, yet only a minority of these ever get a GP home visit.
- One-third waited longer than 18 months for formal diagnosis.
- Many feel suicidal because of their illness.
- Around one-third use a wheelchair.
- Many say that psychological strategies, such as cognitive behavioural therapy or graded exercise, have not helped or have worsened their condition.
- Improvements in health can occur – but over time.
New research involving severely affected patients:
So far the severely affected have normally been excluded from research into ME/CFS so this is a vitally important piece of research which will hopefully set the ball rolling for more.