**UPDATE** Days after this announcement was made we had clarification from various NHS Health Boards in Wales and meetings with a member of the Senedd confirmed that this was widespread confusion relating to the word ‘Adferiad’. Adferiad is the name given to the funding provided by the Welsh Government to support people to recover from the impact of the pandemic (not just people who have had COVID itself). The “Adferiad Recovery” charity is a completely separate entity and is unrelated to M.E/C.F.S and Long COVID.
STATEMENT
In response to the Welsh Government’s announcement on ‘Funding boost to open long COVID services up to people with long term conditions‘, Sally Callow, Managing Director of Stripy Lightbulb CIC says ‘Whilst we appreciate the need for increased spending on Long COVID and other post-viral conditions, we strongly oppose the suggested ‘opening up’ of existing Long COVID services to people living with M.E/C.F.S and Fibromyalgia. As we have said in our many conversations and communications with Members of the Senedd over the past 18 months, M.E/C.F.S is a complex neurological disease that requires specialist care, as has been acknowledged in the M.E/C.F.S NICE guideline (October 2021). The NICE guideline has still not been implemented in Wales; this is obvious as there are no M.E/C.F.S specialists in Wales. People living in Wales currently have to privately access specialist care in England if necessary, and financially possible.
‘Annual funding will increase to £8.3 million for Adferiad (Recovery) services. The community based rehabilitation services will continue to and support people with long COVID but they will also be expanded to people with other long term conditions whose rehabilitation and recovery are similar- for example, people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia and other post-viral associated conditions.’
I feel this funding increase and ‘opening up’ to M.E/C.F.S and Fibromyalgia patients is an inappropriate and inadequate sticking plaster that will not benefit patients. It provides the Welsh Government with the opportunity to state they are providing care for a greater number of people living with long term conditions whilst actually not providing increased adequate and appropriate care.
Fund Long COVID and ME/C.F.S separately, create two separate pathways to ensure the best possible care for M.E/C.F.S patients. Physiotherapy and psychological treatments may benefit a minority of Long COVID patients but they will not work with M.E/C.F.S., unless they have underlying mental health issues alongside M.E/C.F.S or need support to cope with being chronically sick.
Minister for Health and Social Services, Eluned Morgan MS, I estimate that there are now around 30,000 people living with M.E/C.F.S in Wales, please provide them with care and support that adheres to the NICE guideline. I would suggest that funds would be well spent if allocated to educating medical professionals about this disease in order to bring about appropriate care and support for this neglected patient group.’
