covid:aid speaks to Dr Nisreen Alwan MBE about the battle to Count Long Covid

Dr Nisreen Alwan is a public health researcher investigating maternal and child health, but started writing about Long Covid when she contracted the disease herself.  Noticing that she was not recovering even after several few weeks – with her symptoms persisting – she had to rely on Facebook support groups for advice.  It was the lack of information from public health authorities which drove her to publish her piece ‘What exactly is mild Covid-19?’ in July 2020, which had a resounding impact in the medical sector and across the world, reflecting how society was under informed regarding Long Covid.

According to Nisreen, the predominant reason for that was “a short-sightedness of government messaging and policy-making”, and that it was primarily focused on the impact of deaths rather than infection rates, meaning that the massive and long-term effects on those with chronic conditions of Covid were swept under the rug – their support left under-resourced and under-researched.

In our podcast interview, Nisreen ended with a call to action for the need to create more equitable systems where those living with chronic conditions – also including chronic fatigue syndrome [CFS/ME] and fibromyalgia – are taken better care of, so that these many people’s conditions are not dismissed and that they feel comfortable seeking help.

Nisreen sits on the expert panel for covid:aid, and is an Associate Professor in Public Health at the University of Southampton and an Honorary Consultant in Public Health at University Hospital Southampton.  She was awarded an MBE for services to Medicine and Public Health during the COVID19 pandemic in the Queen’s New Year Honours 2021 and named in the BBC 100 Women 2020.

5 takeaway quotes from the episode

  • On her study of Long Covid: “I wrote a piece for the BMJ in July... discussing how our pandemic response only accounted for deaths but not mild Covid.  I thought surely people had thought about this, but this article had a lot of impact.”

  • On what Long Covid is: “It’s when someone cannot go back to their usual level of health or activity, involving exhaustion, chest heaviness, and a decline in cognitive ability.  It fluctuates in severity from day to day and makes life, work and travel very difficult.”

  • On public recognition of Long Covid: “There is far less awareness than I’d like there to be.  Many people still don’t know what it is or what it means.”

  • For people who have Long Covid: “If one is questioned on their symptoms and illness, that they’re just imagining things, a stigma may be created and discourage one from talking about it or even seeking help, creating a vicious cycle.”

  • On the silver lining for the future: “Hopefully efforts and research to deal with Long Covid could extend to other chronic conditions—like chronic fatigue syndrome or fibromyalgia—which have not been given enough attention all this time.”

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