A cross-cultural perspective on ME. What is the UK position?

[craigmorris]

British but temporarily living overseas with severe ME has given me perspective on the UK NHS take on ME. What have we learned from other countries and what do we still have to learn? Is it true that the US and Canada are at the cutting edge of research and patient care? Some patients have suggested we're in thrall to psychologists in the UK but is this perhaps just in certain parts of the country? I believe that Ireland is launching a national ME centre. Could a UK national centre that combined patient diagnosis, care and research improve the lot of sufferers in the UK?

[Dr Charles Shepherd]

Having visited the USA on regular occasions in relation to ME/CFS (I was in New York last June for a three day OMI meeting) I would not agree that they are at the 'cutting edge' of either research or management

Good research is taking place on both sides of the Atlantic and you may have seen that the NIH awarded a £! million research grant to the UK ME Biobank (that the MEA is co-funding at UCL) because of the superb facilities for blood sample collection and preparation for research purposes achieved by this charity UK initiative

But compared to other long term chronic diseases, much more clearly needs to be done - which is why we have played a key role in the development of the MRC Expert Group on ME/CFS and the UK Research Collaborative chaired by Stephen Holgate. No such initiatives in the USA...

As far as management is concerned: yes, people in the USA do have access to doctors who will arrange expensive investigations and speculative forms of treatment if you have a lot of money. Otherwise, the management is far from 'cutting edge'. It is often non existent.

I know that there is someone in Ireland who wants to set a national ME centre - but this is aspiration and not something that is actually happening

[MichaelC]

ME/CFS is classified as a long-term neurological condition of unknown cause by the Department of Health as they have confirmed many times.

It is now estimated at BACME (British Association for CFS/ME) that the specialist NHS services across England deal with around 9,000 new referrals per year and approaching 80,000 have been seen so far.

It's good news that so many are being assessed and diagnosed where appropriate. Many would then receive symptom control and management advice as appropriate that can often lead to significant improvements.

http://www.bacme.info/

[survivor]

I understand from friends running USA clinics that ME has a number of causes, or things which make one more likely to develop ME (allergies, stress, toxic chemicals, viruses etc...) and a virus is often the trigger. From what I have read, the research in UK has until recently been mainly about finding one specific cause.