Energy, thinking and mood
Anxiety and low mood
Persistent worry, fear or low mood, which is common in ALS/MND and is treatable rather than something to be endured.
Still being checked
What this is
Feeling frightened, low or overwhelmed is a reasonable response to what you are dealing with, and it is also something that can be helped. Two things are worth knowing: this is common enough that support exists specifically for it, and some of what looks like low mood in ALS/MND has physical causes worth checking, including changes in breathing during sleep.
What people often describe
- Worry that will not switch off, particularly at night
- Losing interest in things you used to look forward to
- Feeling like a burden, which many people think and few say out loud
- Sleep, appetite or concentration changing without an obvious reason
Important distinctions
Sudden crying that does not match how you feel is a change in a brain pathway, not low mood. Telling them apart matters, because each is managed differently and being treated for the wrong one helps nobody.
Exhaustion and low mood look alike from the outside and feed each other. Both are worth raising, and which one is leading changes what helps.
What may help
This page lists options that are used for this problem and says where each one comes from. It is not a ranking, it is not a recommendation, and it is not personalised to you. What suits you is a decision for you and your care team.
Practical and self-management
Things people do themselves, or with whoever is helping them.
Allied health
What a therapist can assess, teach or adjust.
Medicines
Named here only where a guideline names them for this problem.
A medicine is named here only where a published guideline names it for this problem, and the guideline's own words are shown beside it. Compass does not advise on doses, and does not say which medicine is right for anyone.
Procedures
Things done in a clinical setting, usually after a referral.
When to get this looked at sooner
Sadness, anxiety or hopelessness that persists, or that feels hard to shift, is worth reaching out about rather than waiting. If you are having thoughts of harming yourself, contact your local emergency services or a crisis helpline now.
Who may help
Where Compass explains this
Questions
- How can ALS/MND affect emotional wellbeing and mental health?
- When should I reach out, and what if I am really struggling?
- How do I access mental health support?
- How do I cope with the day-to-day emotional ups and downs?
Cards
Related
Other problems
Words explained
About this page
This page lists options that are used for this problem and says where each one comes from. It is not a ranking, it is not a recommendation, and it is not personalised to you. What suits you is a decision for you and your care team.
Evidence for this page
The sources behind the statements on this page, and where to find them. Compass does not decide which option is right for anyone.
Statement 1 of 5. Talking with others living with ALS/MND. NICE says information about support groups and other sources of emotional support should be offered to family and carers as well.
Supports this. NICE MND guideline — NICE · Clinical guideline
NICE says to offer family members and carers information about respite and about sources of emotional and psychological support, naming support groups, online forums and counselling services.
“Offer family members and/or carers (as appropriate) information about respite care and sources of emotional and psychological support, including support groups, online forums and counselling or psychology services.”
1.6.4Link checked August 2026
Statement 2 of 5. Counselling, psychology and other talking therapies, for you and often for family too. NICE tells teams to ask about this, and to refer where it is needed.
Supports this. NICE MND guideline — NICE · Clinical guideline
NICE tells teams to discuss the psychological and emotional impact of MND at assessments and appointments, and to ask directly whether there are support needs.
“During multidisciplinary team assessments and other appointments, discuss the psychological and emotional impact of MND with the person and ask whether they have any psychological or support care needs.”
1.6.1Link checked August 2026
Supports this. NICE MND guideline — NICE · Clinical guideline
Where support is needed, NICE says to refer to counselling or psychology services for specialist assessment and support.
“If needed, refer the person to counselling or psychology services for a specialist assessment and support.”
1.6.2Link checked August 2026
Statement 3 of 5. Depression is a common and treatable condition, and being diagnosed with ALS/MND is one of the things that can trigger it. Medication is one of the things a doctor can consider, weighed alongside talking therapies rather than instead of them.
Supports this. ALS Mental Health — Your ALS Guide · Practical guide
An ALS organisation describes depression as a common and treatable condition that can be triggered by a diagnosis like this one.
“It is a common, treatable medical condition that can be triggered by any number of causes, including being diagnosed with a chronic disease like ALS.”
Identifying and Treating DepressionLink checked August 2026
Statement 4 of 5. Sleep, appetite and concentration changes can have physical causes in ALS/MND, including breathing during sleep. Checking that alongside mood means the right thing gets treated.
Supports this. NICE MND guideline — NICE · Clinical guideline
NICE tells teams to monitor a listed set of symptoms and signs to detect respiratory impairment. Several of them overlap with what low mood looks like.
“Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.”
1.15.7Link checked August 2026
Statement 5 of 5. Sadness, anxiety or hopelessness that persists, or that feels hard to shift, is worth reaching out about rather than waiting. If you are having thoughts of harming yourself, contact your local emergency services or a crisis helpline now.
Supports this. ALS Mental Health — Your ALS Guide · Practical guide
Republished from the Compass answer "When should I reach out, and what if I am really struggling?", where this statement is already mapped to this source.
“Most importantly, if you or your loved ones are concerned that you might be depressed, contact your ALS neurologist to share your concerns and create a plan to help you feel better.”
Identifying and Treating DepressionLink checked August 2026