International: World Health Organization News (news relevant to ME/CFS, Long Covid and related conditions)

Part 2
Dr Theo Vos
He talked about a review of epidemiological studies that was done including 10 follow-up studies and two large medical record data collections systems in the US. 13,500 children. This is the study that came up with the three symptom clusters of
1. Fatigue, bodily pain and mood swings*
2. Ongoing respiratory symptoms
3. Cognitive problems

* There was a facility to ask questions. I asked one, but I didn't see anyone else's. I noted the issues with most survey tools for depression and anxiety disorder, that tend to overestimate these conditions in people with post-infection fatigue syndromes, as the symptoms of orthostatic intolerance can be mistaken for the symptoms of anxiety, fatigue can limit the ability of people to engage in activities they previously enjoyed, and sadness and worry are reasonable reactions to the onset of a chronic illness. And I asked if the presenters of these epidemiological reviews who are defining symptoms understand these problems and the bias they bring to symptom description.

The answer I got was that mental health symptoms would not be covered in any detail in this webinar about PCC in childen and young people, but I might like to look at the recent WHO webinar on mental health issues and PCC.

Dr Vos noted that there was a lot of variation in the studies. The incidence of PCC seems to be lower in children.
At 3 months, 2.8% have one or more symptom clusters. Of the cases at 3 months, 15% continue to have symptoms at 12 months. The disability is similar to that of severe brain trauma or complete hearing loss - that might be a useful quote for advocacy.

The condition resolves in the majority of cases. Omicron seems to have a lower risk of leading to PCC, 1/4 to 1/3 of the risk of that of the earlier variants.

It was mentioned that there are other infectious diseases with extended symptoms including dengue, Q fever and a 'host of other mostly viral diseases'. No mention of ME/CFS.

The condition resolves in the majority of cases.

There was quite a lot of detail, I didn't get the name of the paper. I'll add it if I find it.

 

Part 3
Lauren O'Mahoney
Another epidemiology review. UCL, 2021 paper. Behnood et al
No mention of the problems with studies contributing to the review. At this point I was annoyed about the 'mood swings' issue and was writing my question, so I didn't hear a lot of the presentation.

Dr Isabelle Dewandel - Stellenboschh University
Paediatrician and clinical researcher
There has been limited data from sub-Saharan Africa
There is a very high incidence of co-morbidities - TB and HIV (staggering high incidences, 20% of people are living with HIV, I think that was in South Africa?)
The study was on children (aged 13 or less) admitted to hospital, 50% were less than a year old. A very large percentage of the children had lung abnormalities. They were mostly very young children presenting mainly for respiratory symptoms. Covid-19 positive children were much more likely than Covid-19- negative children to be readmitted later and have ongoing problems.

Selina Kittenborg Berg - Denmark
Long Covid Kids DK
A survey was sent to the mothers of all Danisg children with a confirmed positive PCR test. Used WHO Clinical Case definition of PCC in adults - symptoms had to remain for at least 2 months. Data was presented for 0-3 months; 4 to 11 years; 12-14 years.
Better to read the actual paper I think.

For emotional functioning, in a notable first, the control group reported feeling worse than the children meeting the PCC definition! Probably worth finding the paper for that alone.

Nina Iwi Putri - Indonesia
They are seeing suspected Long Covid in children, but it's hard to be certain.
A study is underway, in Jakarta, Yogyakarta and Surabaya. It will involve 200 children, and 2 years of followup. Children are selected from those who come to the hospital for treatment. The study sounds a bit problematic, and small, and progress in recruitment has been slow. The University of Melbourne is associated with the study (Julie Bine; Stephen Graham).

They have also been campaigning for awareness of the condition. Nina could be a useful contact for advocates in Indonesia.

Edit to add - a study of 200 children in a country of 275 million people. The study has been recruiting since April and they have 40 children signed up so far. The difference between the level of care in Indonesia and the UK is so vast. It's a sad state of affairs that the children of Indonesia with Long Covid might be better off with no specialised care than those in countries that are rolling out multi-disciplinary clinics with goal setting.

Stephen Freedman - University of Calgary
PERN Pediatric Emergency Room Network
A study involving 8 countries, most data from the US, Canada and Costa Rica
2368 people aged less than 18 years, symptoms persisting 90 days after testing, pre-existing symptoms were excluded. 5.8% of children seen had post Covid condition at 3 months (9.8% of those who were hospitalised, 4.6% of those who were not hospitalised)
Risk factors - older age, number of symptoms when acute, hospitalisation for more than 48 hours

 

I agree, those three symptom clusters seemed very odd. It does seem possible for someone to have two or more clusters of symptoms.

 

Part 4:
Daniel Munblit - Imperial College London
Core Outcomes
COMET Initiative - Core Outcome Measures in Effectiveness Trials

The Adult PCC core outcomes - Munblit et al 2022
include 'post-exertion symptoms'
The Delphi process sounded decent - around half of the participants had lived experience. 1535 participants and 2 rounds.

They are currently working on the Children and Young People PCC core outcomes
There is an invitation for stakeholders to participate in the Delphi process. The Delphi will be launched in the next few weeks.
https://www.pc-cos.org
I hope some forum members will participate. For more information, contact Nina Seylanova, Nina.seylanova@gmail.com
@SNT Gatchaman


Laura Malone - United States
Models of care in children and young people
Morrow, Malone et al 2021
Multidiciplinary, biopsychosocial model, goal is to improve functioning

Most common symptoms, in order of prevalence, are fatigue; brain fog; headaches; dizziness/light headedness/vertigo; anxiety/worries; breathing problems

There is an assessment, then the case is discussed by a team and they make a plan. They have an education specialist. There is followup after about 2 to 3 months. They offer an outpatients program of, I think, 4 to 5 days a week, half days each day.

Sounded very much like the usual approach to fixing Long Covid/ME/CFS to me.


Dr Toro - Columbia
They also apply the BPS model. They work to ensure there is fun in the child's life, and independence is developed. They work on physical activity. School and play are essential parts of children's lives.

A circular model of Assessment >> Assignment >> Intervention >> Evaluation >> Assessment
Cycle 1 might be on pain relief, and Cycle 2 on sports practice
Goal setting involves the children; most children are keen to get back to football, both boys and girls.

Dr Toro seemed very convinced that what they are doing is making a difference. Yeah...


Wilson Were - WHO
Good news, with the information we have, we can describe the condition.
In terms of care - its very clear that we need to provide multi-disciplinary care
...yeah, also

END

Like I said, some good work with the core outcomes, the data platform. But still a lot of people running around thinking they are doing something useful when in fact they probably are not, still a lot of scope for children and their families to be harmed by the medical care they receive.

 

'Pearlier variants'... Apologies for my typos - I just typed and posted without checking much. I did edit it a while back.

From memory, there was no data presented to support the statement that omicron has a lower risk of Long Covid than the earlier variants.

It's probably early days for omicron, and this idea of a lower risk might be largely wishful thinking compounded by the (incorrect, I think) idea that more severe infections are more likely to cause Long Covid. I think that idea is mostly due to the mixing up of symptoms caused by severe Covid-19 (e.g. including damage caused by being on a respirator) with symptoms caused by ME/CFS-like Long Covid.

Some of the possibilities you list @Robert 1973 might be true.

 

WHO chief urges immediate action to tackle ‘devastating’ long Covid (Guardian)
Thread on this article here

 

'WHO conducted an extensive literature review of research relating to chronic fatigue.​

If they can't get even this right, what is the point of their involvement?

 

Is this a good or bad thing?

 

Oh, poop.