'What is worse is that there is increasing evidence that some doctors are dismissing this illness. People write, “I am desperate! My doctor says I have anxiety, but I know this stuff is real”. Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to covid-19. Yet for us “long haulers” the symptoms are the same, the management schedules are the same, even if we don’t quite fit the somewhat arbitrary definition of “chronic” at 4 months.
A post-viral tsunami is hitting our health services right now, yet in the UK it doesn’t even seem to be on the national agenda. NICE have issued 28 rapid reviews and guidance on covid-19 this year, but their guidance on the chronic fatigue syndrome/mylagic encephalomyelitis is 13 years old. There is little evidence in the UK of a co-ordinated response, that is truly multidisciplinary, involves organizations such as the ME Association, and includes patients.
Society is acknowledging the “long haulers” but part of the picture is missing. What about people less privileged than us articulate middle classes mobilising ourselves, writing to MPs, and talking to journalists? What about the minority groups, the single parent households, people on zero hours contracts, where long convalescence is not an option? These people are trying to navigate an illness that bites back like a demon if you overdo it, batters you physically and mentally, and leads you to doubt your own sanity. Pushing themselves because they have no choice will lead to further illness, suffering, and distress. They are being left behind.
This stuff is real. People are ill. Doctors need to stop diagnosing this as anxiety. We have messed up before, lets’ not do it again with long term covid-19 illness.'
