To the Trustees of the M.E. Association and Action for M.E.

Savannah (details below) is seriously ill and mistreated in hospital. She is not the only one. Advocacy and support is currently provided almost entirely by exhausted family members or other housebound and severely affected patients with M.E.

We have seen this before. 

We know where this can lead. 

We don’t need to remind you of the names of the people who are suffering. Some have even died in similar circumstances.

You are ‘our organisations’. We and our families and friends fund you with donations: we need you in our times of most extreme need. Savannah is one of us and needs you now.

Seeing this happen to one of us is a trauma to all of us. We need to know what support we can expect, and how to access it, if we find ourselves in a similar situation.

There is no other cavalry coming to our rescue - it’s YOUR JOB to provide advocacy, legal support and strong campaigning support in situations like this. 

Come up with a crisis support plan NOW.

1. Name and shame hospitals psychologising people with Severe M.E. and withholding life-sustaining treatments

2. Lobby the Secretary of State for Health and Social Care to take action and initiate emergency NHS provision as a matter of extreme urgency

3. Work together and with other organisations and advocates to provide a salaried advocate for crisis cases - for this case initially, but make a plan and ensure funds are allocated for future needs

4. Urgently explore funding applications to foundations that may support a 3-5 year medico-legal advocacy pilot project for this work and/or commit money from income or reserves (acknowledging the fact that 25% of people with M.E. fall into the 'severe' or 'very severe' categories)

5. Make ‘crisis support’ a required agenda item for all your Trustee Meetings and AGMs from now on

Sign the letter to show your support 

UK and international signatories welcome. You do not have to be a member of either organisation. 

You will have the option of sharing your signature/name and country of residence publicly (it will show up in the list at the bottom of the page) or keeping it private to be shared with the organisations' Trustees only. 

Signatures close midnight 30 November 2026 (UK time)

This letter will be submitted to both organisations after that (in time for the M.E. Association AGM in early December).