UK Inquiry: Long COVID Oversight Board 22/06/2021

A look at minutes from the meeting that considered the need for more positive messaging to be a priority

A section from the minutes of the Long COVID Oversight Board meeting held on the 22/06/2021 which has been released by the UK's Covid Inquiry. For the first time we get a peak of the conversations informing the government.

Q,Any good evidence on Long Covid in children?

A, Waiting for CLoCK

More than a year into the pandemic, relying on one paper produced by their own team

There are some issues with the CLoCK study, particularly how it has been represented, however this is a look at the study

Other concerns about the CLoCK study include,

• Ethical breaches in recruitment and data collection: Informed consent; Deception; Fishing and Data Protection.

• Long Covid and ME/CFS are clinically linked; CLoCK draws heavily on psychosocial research into ME/CFS that contravenes the current NICE ME/CFS Guidelines, and ignores the report from APPG4ME: Rethinking ME

• Psychosocial aspects such as ‘Lockdown Anxiety’ and ‘abnormal thoughts’ are being inappropriately researched in CLoCK

• Insufficient public patient involvement: issues raised are being inadequately addressed from a PPIE perspective resulting in major flaws in the proposed trial

• Harmful exercise programmes may be used with CYP on the CLoCK study.

• CYP may face a misdiagnosis of PRS or FII or if parents refuse or pull out of treatment or research; this may further prompt inappropriate involvement from Child Protection Services

More details of a formal complaint to UCL Research Ethics Committee can be found here.

Is the “greatest medical scandal of the last century" being repeated for a generation of children?

The latest round of CLoCK published on 10 May 2023 concluded that,

“Our predominant, and actionable, finding is that children and youth with long COVID following likely infection with Omicron (both first infection and reinfection) have a similar profile to CYP with long COVID after infection with other variants and that substantial numbers of CYP are likely to be impacted.”

Unlike previously more reassuring rounds that received much media attention, this latest round was ignored by the media. The authors also tried to dismiss the findings of their own report.

More details in the link below.

By mid 2021 there was already a considerable number of papers and information published about long covid, so it seems incredulous that rather than looking at a wide range of sources they were so focused on a single study.

Back to the Oversight meeting, it was said it "helpful to know" the scale on children and "what can be communicated around supporting staff and DfE would be guided by health implications" "employers had existing responsibilities around reasonable judgements"

So two years on, what has the DfE done to identify the impact of long covid on students and workers? What have they published regarding health implications and what have they done to support staff?

They are still relying on farming out all responsibility to school leaders, which is difficult when there isn't any official diagnostic testing for long covid, and reasonable adjustments generally require assessment and recommendations from Occupational Health.

The issue is getting a referral, some workers have struggled to get support from GPs, others have employers who might not feel inclined to make a referral (if this is the case go to your union rep).

Occupational Health’s messaging on long covid is very different to government messaging. "Massive problem"

Occupational Health states education is one of the highest risk groups. When has the DfE communicated this? What has the DfE done about this?

The Long Covid meeting in June 2021 were worried about the messaging around long covid being "quite alarming and was often negative" suggesting the narrative should be anchored around "recovery" Royal Colleges would be important stakeholders in developing communications. The Royal College of Paediatric Care and Health does not have a section on its website for long covid in children.

"Any public information campaign would need to be carefully managed to ensure the NHS could manage patient flow."

Is this why developing long covid after "mild" symptoms is often downplayed by government, particularly in regards to children? The government is worried too many people will come forward.

More than two years after this meeting the government still hasn’t properly informed the public regarding long covid, many still do not realise the prevalence or that it can occur after only mild symptoms from experienced from the initial infection, and organisations representing sufferers are increasingly frustrated at a lack of research into meaningful treatments.