Feeling ill, and thinking those feelings are a necessary consequence of ME, can be disempowering and overwhelming. A symptoms based approach to ME can help. NHS treatment for ME often advises against 'symptom checking' because repeated focus or worry can increase the sensation of the symptom. Absolutely. But a more occasional, positive, proactive 'be your own detective' analysis of our own symptoms can offer profound benefits:-
First while a diagnosis of ME/CFS can at first be a relief (a name for worrying or confusing illness), ME can ultimately feel too big and overwhelming to manage. Breaking it down into a collection of fundamental symptoms which match our experience of feeling ill gives us manageable chunks which may be easier to find solutions for. With ME, symptoms vary - no one symptom is inevitable or beyond remedy. In fact the label 'ME' can be positively unhelpful in stopping us focussing on small parts of body or mind we can individually nourish and heal.
Second, diagnoses of ME/CFS are handed out without painstaking diagnostic testing. It is perfectly possible that individual ailments you experience are not an intrinsic part or consequence of ME, but ailments which can be effectively addressed in isolation. ME seems to have a variety of causes or stressors: PWME have reported that what they imagined were symptoms of ME ultimately seemed to be stress factors which CAUSED their illness in the first place (for example, physical pain).
Third, some approaches to ME which claim great success, teach patients to see symptoms as fairly friendly signs that the body is sending to get us to listen to our own personal needs. To greater or lesser extents this practice is often encouraged more widely in ME - for example interpretation of ME as a 'wake up call' to look deeply at our lifestyle and the demands upon ourselves is advice much repeated. There would appear to be little harm in playing with the idea that if ME were trying to offer us helpful messages about things we need to address and changes we need to make, what, for you, would those messages most likely be? It may be easier to apply this 'in the moment' when experiencing a symptom: if the symptom does have a message for you, what could it be? Is there a pattern about when, where, and in which circumstances this symptom becomes more troublesome?