Labelling Long COVID and ME/CFS symptoms in children 'mental health'

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EducateME

Established Member
I don't often post but this is a real concern see p7: Children and young people with Long Covid (CLoCK) (publishing.service.gov.uk).

Study summary Study title: Tracking the impact of Covid-19 on the mental health of children, young people and families; follow up of a national longitudinal probability sample. Study short title: Children & young people with Long Covid (CLoCk) study.
Research question and/or aim(s):
• to describe the clinical phenotype and prevalence of post-COVID symptomatology (for example, fatigue, breathlessness, post exertional myalgia, sleep problems, muscle or joint pain, headaches, tics, sore throat, mental health problems including low mood, anxiety, self-harm, eating problems, problems thinking, remembering or concentrating (brain fog), flu-like symptoms, feeling dizzy or sick, palpitations) symptoms in test +ve and test -ve CYP
• to use these data to produce an operational definition of long COVID in CYP, a prerequisite for any future epidemiological or interventional study – for example, an RCT of a graded activity intervention or rehabilitative approach as has been used for CFS.
 
EducateME said:
I don't often post but this is a real concern see p7: Children and young people with Long Covid (CLoCK) (publishing.service.gov.uk).

Study summary Study title: Tracking the impact of Covid-19 on the mental health of children, young people and families; follow up of a national longitudinal probability sample. Study short title: Children & young people with Long Covid (CLoCk) study.
Research question and/or aim(s):
• to describe the clinical phenotype and prevalence of post-COVID symptomatology (for example, fatigue, breathlessness, post exertional myalgia, sleep problems, muscle or joint pain, headaches, tics, sore throat, mental health problems including low mood, anxiety, self-harm, eating problems, problems thinking, remembering or concentrating (brain fog), flu-like symptoms, feeling dizzy or sick, palpitations) symptoms in test +ve and test -ve CYP
• to use these data to produce an operational definition of long COVID in CYP, a prerequisite for any future epidemiological or interventional study – for example, an RCT of a graded activity intervention or rehabilitative approach as has been used for CFS.
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Look at the co-investigators they include Crawley and Chadler so the research is likely to be very poor.

[Added]
In addition they are using the CFQ which also implies very poor quality as it is such a poor quality confused questionnare and inconsistant between two different marking schemes.
 
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I agree, it is the same awful muddle by the same muddled people. Why on earth should anyone want more studies of graded activity or rehab when it is now clear they have no place in CFS anyway.

How do all these symptoms suddenly fall under the roof of mental health - indeed?

How are they going to describe the phenotype and prevalence from a tertiary centre with a hopelessly biased referral system?
 
Jonathan Edwards said:
How are they going to describe the phenotype and prevalence from a tertiary centre with a hopelessly biased referral system?
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No idea but they have £1.36m to do it.
https://www.ucl.ac.uk/news/2021/feb/ucl-researchers-lead-ps11m-projects-investigate-long-covid
Professor Stephenson’s CLoCk Study, meanwhile, will identify symptoms of Long Covid among children and young people who were not hospitalised. The research will assess risk factors, prevalence and how long Long Covid lasts. It will also establish a medical diagnosis and operational definition of the condition, and look at how it might be treated.

Professor Stephenson said: “We are delighted to have been awarded £1.36m by NIHR to study Long Covid in 11- to 17-year-olds.
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It will also establish a medical diagnosis and operational definition of the condition, and look at how it might be treated.

That seems a bit like establishing an operational definition of phlogiston without checking whether it exists.
A foolish consistency is the hobgoblin....
 
It's concerning that all these young people in these psychological studies could wear the not up to par in the mental health category label for the rest of their lives.

I don't know if their physicians are privvy to their patients' diagnoses from these studies. But the prospect of being doubted for life because one's parents agreed to such a study is a very unfortunate mistake to say the least.
 
Its concerning reading - Harms p19:

It is possible that the questionnaires may make some vulnerable participants feel fatigued.

[Worded to suggest its the participants fault for being vulnerable and feeling symptoms? The researchers should point out that participation could actually lead to genuine symptom exacerbation/PEM?? Surely the suggestion that the feeling fatigued is because they are the vulnerable ones has more potential to cause significant harm?]

Participants may also feel distressed from completing questionnaires relating to their mental health and/or report serious symptoms that put them at immediate risk. [Is this where they say 'are you being abused?' because it leads us to believe you imagine your symptoms, even your imaginary covid toes, rash, hair loss, kawasaki tongue, orthostatic hypotension, muscle fasciculations, its all a result of your upbringing and nothing to do with actually having a virus and a subsequent multisystem disease....]

I'm genuinely 'feeling distressed' that this study title, design and intended direction could be very damaging for the next generation.
 
What can be done to combat this in your view. So many paediatricians have taken on Crawley's view of ME, and are likely then to follow the BPS view on Long Covid.

I did hear of one good paediatrician in Wales re ME. May be able to find their name. Dr Speight probably knows who is better or worse.

I could ask this question on one of the Parents' FB groups I am on.
 
There is, I feel, a lot of pressure in the system to label covid kids as having a mental problem. The British government's covid policies had a heavy emphasis on children being safe from the disease and that they should return to school because of it. The acknowledgement that kids are being damaged by covid goes against everything the government has been saying and doing
 
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