Call it Fuckity Cockwomble

We could call it fuckity cockwomble for all I care, won’t make me feel better, won’t be any closer to a cure.

Without fail, a support forum or community for ME/CFS or long covid will have a new post every week or so bemoaning the naming of this horrible thing. Thinking somehow calling it “Bob” or anything else will somehow make people take notice.

Chronic Fatigue Syndrome or CFS for short is the American version, but is too belittling to many as “It’s like describing dementia as a chronic forgetfulness syndrome or Parkinson’s disease as a chronic shaking syndrome.” according to the ME association just because fatigue is the prominent symptom. It has all sorts of history attached that has been dismissive and out right negligent.

Myalgic encephomyelitis or ME is the UK and more scientific name. Literally; Myalgic: Muscle pain (myois muscle, algic is pain), Encephalo: Brain, Myel: Spinal cord, Itis: Inflammation. Which is incredibly hard to say for people with brain fog.

So ME/CFS is now the preferred naming guidelines from NICE. But many remain dissatisfied, and hence the constant debate.

There are an estimated 404,000 people in the UK who meet the diagnostic criteria for this disease. A large number of people are unable to work, myself included.

Assuming a median salary £39,009 (ONS 2025) and typical tax affairs (standard 1257L tax code) that is roughly ~£7,400 Tax and National Insurancr per person, that equates to approximately £3 billion of income for the state per year, that is missing if all were out of work.

Of course this is a broad approximation some suffers are children, but some were like me having with a marginal tax rate of 62%, some have disability and other benefits costing the state more, some pay tax via insurance payments, some work, some rely of their families. But this is just income tax, not to mention all the VAT they are missing from things I no longer do or buy.

You’d think governments and sufferers would be more focused on highlighting the fact that even a one off investment of a billion to find a cure would be money well spent for the UK economy. Reducing the welfare cost whilst increasing tax revenue, not to mention the ability to sell medicines to the rest of the world.

Instead, successive, governments are playing on the park merry-go-round to see who can stay on the longest without getting dizzy. Fuckity Cockwombles indeed.