Should I be doing graded exercise?
No. NICE says do not offer it, and that is unambiguous.
Any programme built on fixed incremental increases in activity is not recommended for ME/CFS, whatever it is called. If one is offered, you can decline it and ask for that to be recorded.
So is this psychological?
No. NICE classifies ME/CFS as a complex chronic medical condition affecting multiple body systems.
CBT may help you cope with a chronic illness — as it might with cancer or diabetes — but it is not a treatment for ME/CFS and does not assume a psychological cause.
How long before I can be diagnosed?
Three months, if all four criteria are met and other causes have been excluded.
And management should start as soon as it is suspected — there is no reason to leave someone without energy management advice while a clock runs down.
What exactly is post-exertional malaise?
A whole-body worsening after activity, typically delayed by 12 to 72 hours, disproportionate to what was done, and slow to recover from.
It is not tiredness after exercise. The trigger can be a shower or a phone call, and mental effort counts as much as physical.
Will I recover?
Some people improve substantially, particularly younger people and those diagnosed early. Many stabilise at a reduced level with fluctuation.
Full recovery in adults who have been ill for years is less common, and we would rather be honest about that than promise something we cannot deliver.
How is it different from depression?
The key difference is what activity does. In depression, people often feel somewhat better after doing something. In ME/CFS, activity makes you worse, sometimes days later.
People with ME/CFS generally want to do things and cannot. That distinction matters, and depression can of course develop alongside.
Why do I react badly to medication?
Medication sensitivity is recognised in ME/CFS, and NICE specifically advises starting at lower doses than usual.
Say this to any prescriber — it is frequently not known, and starting at a normal dose can cause a significant setback.
I am too unwell to get to an appointment. What do I do?
NICE requires that people who cannot attend are seen at home. You are entitled to ask for that.
A remote consultation is also a genuine option — from bed, in a dark room, in writing if speaking is too much.
Is it the same as long COVID?
They overlap heavily, and many people with long COVID meet the ME/CFS criteria.
Post-exertional malaise is the shared feature that matters most, and where it is present the management is essentially the same.
Is it worth paying for one of the recovery programmes I keep seeing?
Brain retraining programmes, infusions, extensive supplement protocols and unvalidated testing have no good trial evidence, and costs run into thousands.
Ask what randomised evidence exists before paying anything, and we will give you a straight answer about any specific one.