Information on Management from MEA purple booklet:
7:1 WHO SHOULD MANAGE PEOPLE WITH ME/CFS?
Provided the diagnosis is not in doubt, the management of early and less severe cases of ME/ CFS can be carried out by general practitioners and other members of the primary healthcare team.
During the early stages (i.e. in the first six months), this will involve giving appropriate advice about lifestyle modification, providing symptomatic relief through the careful use of drugs, and dealing with problems which may arise relating to employment, benefits and social support.
If the illness becomes more chronic and/or severe, consideration should be given towards referring the patient to a hospital physician who is genuinely interested and informed about ME/CFS. The authors of this publication believe that, while clinical services must be multidisciplinary, they should be physician-led.
In some parts of the UK, local multidisciplinary services have been established which permit easy access to dieticians, occupational therapists, physiotherapists, psychologists and other health professionals who may be able to play a useful role in the management of more difficult cases.
The ME Association website (http://www.meassociation.org.uk
) holds a list of Clinical Network Co-ordinating Centres (CNCCs) and Local Multidisciplinary Teams (LMDTs) that have been established in England with £8.5 million of funding from the Department of Health.
Unfortunately, there are still many parts of the UK, especially Wales, Scotland and Northern Ireland, where general practitioners are unable to locate a single hospital consultant with the neces- sary expertise in ME/CFS.
The situation in Scotland may now change following initiatives that have been taken to provide separate clinical guidance (ie the Scottish Good Practice Statement) to that produced by NICE and proposals for the establishment of hospital-based referral services.
There are also a small number of tertiary referral centres where in-patient facilities and research into ME/CFS is being carried out.
7:2 GENERAL PRINCIPLES
● It is important to provide advice, information and support from the onset - even before a firm diagnosis has been made.
● Decision making should always be shared with the patient.
● Explain the range of management options that are available and ways in which specific symptoms might be relieved.
● What works for one patient may not work for another – so it is vital to match interventions to the needs and circumstances of the individual.
● Simple steps like keeping a diary over a four week period may help to identify unhelpful approaches to activity management – eg cramming too much into ‘good days’ and paying the price on ‘bad days’.
● Discuss the possibility of relapses, how they occur, and how to cope with them when they occur.
● Provide information and support on other key aspects of management including state sickness benefits, education, employment and nutrition.
● Provide information on other sources of support – charities, disability organisations etc.
● Provide advice on prognosis that is both optimistic and realistic.
The NICE guideline on ME/CFS states that:
The healthcare professional responsible for your care should make a care plan with you, which is looked at and kept up to date every time you see a health professional about your CFS/ME. It should include the symptoms and history of your condition, plans of treatments and self-help techniques you may be using, information and support needs, plans for work or education, and contact details for health- care professionals treating you.
If you have severe ME/CFS, you should be offered a summary of every discussion so that you can refer to it afterwards.