Compass is still being developed and is effectively in beta. Some content and features may be incomplete, change, or not work as expected.

Content is anchored to trusted sources where available, but Compass has not yet been clinically reviewed. It provides general information rather than medical advice.

Feedback helps us identify gaps, errors, usability problems and opportunities to improve Compass over time.

How Compass is developedGive feedback

Eating, weight and digestion

Losing weight without meaning to

Weight coming off without you trying, usually because eating has become harder or slower rather than because you want to eat less.

The clinical word for this is .

Still being checked

What this is

Weight matters more in ALS/MND than it does in most conditions, and teams watch it closely for that reason. It usually comes off because eating has become harder work: meals take longer, chewing tires you, or swallowing has changed. The dietitian is the person who works on this, and most of what helps is about making the calories easier to get in rather than about eating more.

What people often describe

  • Clothes or rings becoming loose without you trying to lose weight
  • Meals taking so long that you stop before finishing
  • Getting full quickly, or losing interest partway through eating
  • Being surprised by the number on the scales at a clinic visit

Important distinctions

  • Swallowing difficulty is managed differently. If eating feels unsafe rather than just slow, start there.

  • The effort of eating and general fatigue feed each other. If you are running out of energy before you finish a meal, both are worth raising with your team.

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.

  • Changing how you eat and drink

    Smaller, more frequent meals, timed for when you have most energy, and softer or moister food that takes less work to get through.

    Discuss with

    Compass explains

Allied health

What a therapist can assess, teach or adjust.

  • Changes to food textures and fluids

    Where chewing or swallowing is part of why meals are hard, changing textures makes the same food less work. This is worked out with a speech pathologist.

    Highlighted: shows the sources for this statement
    • Thickening drinks is not automatically safer. A speech pathologist decides whether it is right for you.

    Discuss with

    Compass explains

Procedures

Things done in a clinical setting, usually after a referral.

  • A feeding tube

    A feeding tube is one of the things weight loss triggers a conversation about. NICE names weight loss among the factors to weigh, and says to discuss it early rather than once it has become urgent.

    Highlighted: shows the sources for this statement
    • Having a tube does not automatically mean stopping eating and drinking. Whether you can, and what is safe, is worked out with your speech pathologist.

    Discuss with

    Compass explains

Who may help

Where Compass explains this

Questions

Cards

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.

  1. Statement 1 of 2. Where chewing or swallowing is part of why meals are hard, changing textures makes the same food less work. This is worked out with a speech pathologist.

    • Qualifies this. Adult Dysphagia (Practice Portal) — American Speech-Language-Hearing Association · Organisation

      Thickening drinks is not automatically safer. A speech pathologist decides whether it is right for you.

      “In some cases, more viscous materials (i.e., thickened liquids) may be more likely to be silently aspirated (e.g., Miles et al., 2018).”

      Diet Texture Modifications

      Link checked August 2026

  2. Statement 2 of 2. A feeding tube is one of the things weight loss triggers a conversation about. NICE names weight loss among the factors to weigh, and says to discuss it early rather than once it has become urgent.

    • Supports this. NICE MND guideline — NICE · Clinical guideline

      NICE names weight loss among the factors a team weighs when discussing gastrostomy, and says the discussion should happen at an early stage and be revisited regularly.

      “Discuss gastrostomy at an early stage, and at regular intervals as MND progresses, taking into account the person's preferences and issues, such as ability to swallow, weight loss, respiratory function, effort of feeding and drinking and risk of choking.”

      1.11.6

      Link checked August 2026