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Dr Nisreen Alwan 🌻 Profile picture
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Feb 15 • 4 tweets • 1 min read
“Framing illnesses that we still lack sufficient knowledge about as ‘beliefs’ can be harmful. Involving patients in shaping the question is essential for the research to be relevant to them.”

nature.com/articles/s4157…
“Also, researchers and science journals should take responsibility for how the framing of studies they publish can disadvantage people’s lives, in terms of the stigma attached to their condition and the type of care and support they receive.”
Scientific research sets the medical and care agenda for patients with chronic illnesses. It also influences the wider social and economic agenda for people living with these conditions.”
“This is a huge responsibility that researchers are only able to fulfil with sharp awareness of the power structures involved in conducting research, with humility and with an openness to see things from different perspectives.”

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More from @Dr2NisreenAlwan

Dr Nisreen Alwan 🌻 Profile picture
Feb 17
The first step to understanding #childism as part of an intersectional approach is to recognise that children are not a homogeneous group. They include children from minority ethnic backgrounds, girls, disabled children, children living in poverty & so on. thelancet.com/journals/lance…
Yet the heterogeneousness of children as a group has been largely ignored in public health and policy decisions during COVID-19.
For example, in the context of the decision to recommend vaccinating children, risks are discussed and decisions about offering vaccines are made with reference to all children, even though we know that boys are more at risk from myocarditis and pericarditis than girls.
Read 4 tweets
Dr Nisreen Alwan 🌻 Profile picture
Feb 15
"Scientific research sets the medical and care agenda for patients with chronic illnesses. It also influences the wider social and economic agenda for people living with these conditions."
I wrote in @NatRevImmunol:
nature.com/articles/s4157…
"This is a huge responsibility that researchers are only able to fulfil with sharp awareness of the power structures involved in conducting research, with humil-ity and with an openness to see things from different perspectives."
I discuss how involvement of poeple with lived experienced is essential right from the start of the research cycle; to shape the question, the design, the definition and the labelling, using #LongCovid as an example.
Read 5 tweets
Dr Nisreen Alwan 🌻 Profile picture
Feb 11
I invite my fellow researchers to reflect a bit on why they might consider someone with a lived experience of a health condition researching it more biased than someone without.

A short 🧵
1/9
I’ve researched pregnancy for many years & not come across anyone accusing me of bias or conflict of interest because I’ve personally experienced pregnancy multiple times. When I got #LongCovid this became an issue for some. ‘Nisreen, are you here as an academic or patient?’
2/9
Experiencing pregnancy & childbirth gave me important insights when studying them. However, other researchers (particularly junior) who experienced mental or physical health conditions & became passionate about studying them may feel compelled to hide their lived experience.
3/9
Read 9 tweets
Dr Nisreen Alwan 🌻 Profile picture
Jan 29
We have to admit that #LongCovid is incredibly difficult to study in epidemiological research. The oversimplification needs to stop because it’s damaging to patients & we know more about the nature of this condition now that we have to do better. Some points to consider:
🧵
1/7
One point in time assessments are next to useless due to the fluctuating nature of the symptoms and their triggers. Assessment has to be longitudinal if asking about specific symptoms, if not possible ask participants themselves about their *pattern* not symptoms on one day.
2/7
Assessment of recovery is very complex. Ask many people with LC and they can tell u how many times they thought they recovered (sometimes remission for months) and then bam symptoms are back. Thoughtful questions about recovery vs managing symptoms to function are necessary.
3/7
Read 7 tweets
Dr Nisreen Alwan 🌻 Profile picture
Jan 20
I wrote this in August 2020 in @TheLancet:

“So far in the COVID-19 pandemic, surveillance systems are not monitoring ill health and long-term implications of COVID-19, only deaths are reported.”
“A universal surveillance case definition of recovery from COVID-19 is still absent. Many people have prolonged symptoms, ill health, and reduced functionality for months, even if they were not hospitalised for SARS-CoV-2 infection.”
“We must move long-haul COVID from anecdote to something that is routinely quantified and monitored, as is currently being done with deaths and positive tests.”
Read 8 tweets
Dr Nisreen Alwan 🌻 Profile picture
Jan 14
Don’t dismiss #LongCovid❗️
If your friend, relative, colleague, patient or child say they’re not recovered after covid believe them & help them navigate their problems. Hope doesn’t only come from medical treatments. It comes from the love, support & understanding those around u.
Whatever you do, don’t trivialise their ordeal. Saying things like ‘be positive’ or ‘just get a bit of sunshine’ or ‘others have it so much worse’ etc can cause more isolation, stigmatisation & feeling of guilt. If they say it’s hard, IT IS hard and they’re trusting u with it.
Don’t start analysing if their fatigue or another symptom is ‘normal’ or not. As a general rule, people do know what’s normal for them. They know their body before and after covid. It’s harder for young children and that’s tough, but also believe parents who know their kids well.
Read 5 tweets

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