Community News

Sussex ME Society on managing the aftermath of the virus

May 25, 2020

The Sussex ME Society, that works for those affected by chronic fatigue syndrome known as ME, has made available the latest information on how to manage the aftermath of the Coronavirus.

The guidelines have been produced by the British Association for CFS/ME (BACME) for patients recovering from Covid-19 and those caring for them as some can develop full blown ME if their condition is not appropriately managed. Experts estimate that up to 10% of those with the Coronavirus may not fully recover and could develop long-term ME and be in need of specialist management and care.

At the same time Brighton Pavilion MP and Patron to the ME Society Caroline Lucas is calling for the present NHS specialist ME services to be expanded as there is a fear that after some months, they are going to experience an increase in referrals.

Following a recent request from Caroline to Matt Hancock, the Secretary of State for Health and Social Care, asking if they will take steps to expand NHS specialist services she received a reply from the Minister for Social Care stating thatĀ Services for people with chronic fatigue syndrome (CFS) are commissioned by local clinical commissioning groups (CCGs). It is the responsibility of the local NHS commissioners to ensure NHS services are commissioned to meet local need, including for specialist CFS care, taking into account best practice guidance, such as that produced by the National Institute for Health and Care Excellence (NICE).

Colin Barton, Chair of the Sussex ME Society, says ‘We are calling on the Brighton & Hove and Sussex CCGs to look seriously at providing further funding to enable the existing ME/CFS services to expand to meet the growing need for these valuable clinics that presently deal with around 50 referrals per month.’

Caroline Lucas MP, adds: ‘I hope the local clinical commissioning groups, when planning for the long term, continue to provide and expand services for patients with ME or CFS, which offer a lifeline to sufferers and their families.’

Myalgic encephalopathy (ME) or chronic fatigue syndrome (CFS) that can sometimes follow a viral infection such as Covid-19 or trauma is classified as a neurological disorder and currently affects over 4,000 adults and children across Sussex to varying degrees.

The BACME guideline is available from the ME Society on 01273 674828 or visitĀ