On the eve of ME Awareness week and the annual May 12th #MillionsMissing campaign, I’m interrupting the Africa Clockwise story for a moment to update you about the risk of #MillionsMore. Last July, in the blog #LonghaulersUnite, I warned that death was only one of the life-destroying consequences of COVID-19. Since then a throng of organisations advocating on behalf of chronic sufferers have raised their voices, but mostly in vain. Yes, in the US NIH has granted over $1billion to researching Long COVID, and in the UK NICE finally withdrew recommendations for Graded Exercise Therapy to Long COVID sufferers – but they stopped short of rescinding it for ME patients.
Numbers of Long COVID patients are rising rapidly, with previous estimates of 10% of COVID-19 sufferers affected rising to between 25-35%. There is also worrying evidence that more children are being affected than previously thought. Alongside this has been a predictable resurgence of the biopsychosocial fraternity of psychiatrists who have made lucrative careers from insisting chronic illnesses such as ME are all in our heads, to the ongoing applause of medical insurers and institutions. On the bright side, the sheer numbers of young Long COVID longhaulers mean this cohort aren’t going to take the kind of shit people with ME have been forced to endure for decades just lying down!
In March, I helped write a press release on behalf of the ME CFS Foundation of South Africa warning about the danger of permanent disability from Long COVID if sufferers were not correctly advised to ‘STOP, REST. PACE’. Unfortunately the relatively huge effort of editing and emailing it to a long list of press, radio, TV and online media meant I was physically unable to follow up with the phone calls normally required to get a response.
We got just two replies: one from a radio station that never followed through and one from a Jo’burg journalist who asked to interview several sufferers. The Foundation mustered a diverse group of the willing and he spoke to a Dr with ME and a couple of patients. The youngest, a 13 year old girl who has been ill for three years, made a massive effort to record a very affecting voicenote describing the affects of ME on her life since she stopped being able to walk, let alone do ballet. The journalist didn’t include any of them.
The final piece was a disappointing dilution of our message next to a typical picture of ‘white woman with perfect make-up looking a bit tired‘. The energy outlay cost me a couple of weeks and felt almost completely fruitless. We’re keeping our fingers crossed for the interview ME CFS Foundation Director Retha Viviers has done about Long COVID for Carte Blanche TV on MNET, hoping their diligent reporters will have done a more thorough and responsible research job.
* * *
In the meantime, the only reason I’m able to type this is because in mid-April, I escaped the dwindling temperatures of autumnal Cape Town and risked a marathon three flight journey with my wheelchair to the balmy spring warmth of Cape Verde. My daughter Ruby, who is working here as an au pair, has taken over caring duties from her Dad. I’m trying not to think about how it will be 6 months until I see my son or my husband again.
A few weeks ago, Zola asked me for some help deciphering the meaning of a sonnet by Milton he had been set in English class. At the age of 44, the epic poet had lost his sight and had dared to ask his God how he was supposed to continue to use his talent to serve Him?
It inspired me to write a parallel reflection, which I share here in honour of ME Awareness Week. I never recovered from the post-viral effects of falling ill with glandular fever/mononucleosis in 1991 at the age of 21 – almost exactly 30 years ago.