Useful Information

Currently there are no official treatments for ME, however many patients use pacing as a technique to prevent worsening of symptoms and manage the illness. Doctors may also be able to help with some symptoms such as pain.

ME patients are currently not allowed to donate blood or organs for life even if feeling better


Please see below for useful documents

International Consensus Criteria Primer for doctors and diagnosis

Diagnosis and Management in Young People

 PEM Avoidance Toolkit Pacing (avoiding Post Exertional Malaise) by Dr Montoya

Anesthesia recommendations for patients with ME

CPET test for ME Cardiopulmonary Exercise Testing protocol for ME patients.

DWP letter Department for Work and Pensions confirmation letter that Graded Exercise Therapy is not a requirement for benefits.

Workwell Letter to healthcare providers on GET and CBT Helpful for explaining why CBT/GET is not recommended.

The Right to Participate has template letters of complaint that may be of use.

Other useful groups

Tymes Trust for children and parents of children with ME.

25% group for patients severely effected.

Hope for Fibro and ME for patients in Northern Ireland.

UK ME & Chronic Illness Benefits Advice Group for help with benefits.

Invest in ME for the promotion of biomedical research and annual conference in London.

Benefits, Finance and Debt

Financial Ombudsman Service – consumer helpline 0800 023 4567 / 0300 123 9123

Free Representation Unit – provides representation in social security hearings

HMRC Tax and Benefits Confidential Helpline – 0845 608 6000 – helps families and individuals with targeted financial support

Mary Ward Legal Centre – 020 7831 7079 – provides free legal advice to those based in London

Money Advice Service – 0300 500 5000 – provides free and impartial money advice

National Debt Line – 0808 808 4000 – provides free debt advice

South West London Law Centres – 0208 767 2777 – provides a 30 minute free session of legal advice on money and debt management

TaxAid – 0345 120 3779 – assists those on a low income whose problems cannot be resolved with HMRC

Toynbee Hall – frontline advice agency based in East London.

Zacchaeus 2000 Trust (Z2K) – 020 8964 0961 – provides advice and support on a range of issues