Having read the drivel that is BACME's guidance on Therapy and Symptom Management in ME, the document that AfME seems to be pointing to as best practice, I'm wondering if we have been clear enough about what care we actually do want. There seems to be an awful lot of effort and money spent on delivering care that is, at best, a waste of time. We don't need these patronising, costly and often dangerous programmes, programmes that have no good evidence of efficacy. What we need is a respectful service that does a really good job at screening us for other conditions and then 1. supports us and our carers; and 2. facilitates good research efforts. Obviously what is possible will differ according to the resources a country has to put to health care in general. My idea of what is reasonable in a developed nation with significant constraints on health care spending is: Diagnosis - referral to a specialist in ME (i.e. a curious smart specialist from a relevant biological field who reads the ME literature, attends ME conferences) for: a careful exclusion of other possible diagnoses. (It's worth spending the money here on a coordinated systematic exclusion process - many people will actually have treatable conditions and it saves us going to different doctors and having them repeat those same limited blood tests, over and over again.) Baseline data collected including, if the patient is well enough and willing, a 2 day CPET, at least to the point where anaerobic respiration starts. Addition to an ME patient registry and, where possible, an invitation to contribute to an ME biobank and opt to participate in trials. Identification of any treatable symptoms or co-morbidities such as depression, orthostatic intolerance, thyroid issues, and either treatment or referral for treatment. If referral, other medical practitioners should be familiar with the particular needs of ME patients. Letter to the patient's GP with a recommended approach for ongoing care Acknowledgement that ME is real and serious although poorly understood; acknowledgement that recovery rates after the first couple of years are poor at present Referral to a local ME nurse Early care - local ME nurse (able to make house visits for those who need them) Education on PEM, pacing and a healthy lifestyle within the constraints of the illness (a chat with pamphlets; provision of heart rate monitor; more support if requested) Letters to school or work; more liaison with school or work if needed e.g. arrangement of home/online tuition Assistance with getting any government benefits that may apply, getting disabled parking Invitations to relevant local support groups (for patient and carers) and a list of online resources Ongoing care - appointments can be home visits/skype visits if needed Annual visit to the ME specialist, mostly to just check in, update records and for the patient to be updated on latest theories, unless scientific advances suggest new tests or treatments. For severe patients, more regular appointments as required. Appointments with the ME nurse on a schedule appropriate to the wishes and needs of the patient (and carer) but generally at least once a year. Services provided might include advice on mobility aids, arrangement of more home care services, advice on coping with symptoms/ advice to caregivers, monitoring for symptoms that require referral for evaluation and care, assistance with education or work issues. Phone line staffed by an ME nurse, available to discuss ME related issues Both the ME specialist and the ME nurse keep each other, and the patient's GP, informed.