Action for ME, one of the leading UK charities working with ME and Chronic Fatigue sufferers has just produced a damning report detailing the shocking lack of support offered to ME and CFS sufferers across the UK.

ME or CFS (also known as Post Viral Fatigue Syndrome - PVFS) affects around 250,000 adults and children across the UK; common symptoms include muscle pain, persistent exhaustion, poor concentration and memory problems, headache, un-refreshing sleep and digestive problems such as nausea or IBS.

Yet, despite the fact the NICE recognises that ME/CFS 'can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions', more than one third of English Primary Care Trusts either don't commission specialist services for M.E./CFS patients or cannot confirm they do and, in Scotland, Wales and Northern Ireland, provision is far worse.

To quote the report:

'NICE gives all 151 PCTs in England explicit guidance on when children and adults should be referred to specialist clinics. Yet more than a quarter of the trusts that responded admitted that they did not commission specialist secondary care.

Only 15 PCTs, less than a third of those that responded to this question, said they provided designated M.E./CFS care pathway for their area. NICE recommend clear care pathways for this patient group.

Nine of the 14 Scottish Health Boards replied to this question and of these, only two were able to supply care pathways. The Welsh boards that responded said they did not have care pathways.

The Northern Ireland Health and Social Care Board said it was 'working towards' adopting NICE guidelines in relation to care pathways.

Many people with M.E./CFS are unable to leave their home because of their condition, with up to 25 per cent of patients who have the most severe forms of the condition likely to be confined to bed by their M.E./CFS for months or even years on end. Yet only 37 out of 151 PCTs said they provided domiciliary care (ie. home visits) and, of these, only 12 were able to provide statistics on how many people with M.E./CFS had been seen in their home during a year.

Only one Scottish, one Welsh and one Northern Ireland board said they provided home visits for people with M.E./CFS.

Only 53 PCTs, one Scottish Health Board and four Welsh Health Boards were able to provide funding details. Funding per person with M.E/CFS varied widely and ranged from £0 to £382.

The need for early diagnosis, especially for children, with referral to specialist services if necessary is stated in the NICE Guideline for M.E./CFS. However, only 16 of the 151 English PCTs and one of the 14 Scottish Health Boards were able to provide separate details of how many children they had referred to specialist M.E./CFS services.'

For further information about ME/CFS contact Action for ME.

For a very successful complementary approach to the treatment of ME/CFS check out the website of Dr Sarah Myhill.

First Published inSeptember 2012

Click here for more articles

Back to top