Is "The Greatest Medical Scandal" of the 21st Century Being Repeated For a Generation of Children?
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PRESS RELEASE
Publication Date: 13/04/2023
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Leading doctors, researchers, parents, and patient groups in Long Covid are warning that a generation of children and young people are going without effective medical care and little attempt is being made to solve this crisis.
A hard-hitting letter co-signed by leading doctors in the Long Covid community, including Dr Binita Kane, Dr Deepti Gurudsani & Dr Asad Khan, was sent in July 2022, regarding concerns about the paediatric Long Covid CLoCK Study. That letter is now released HERE
Why the Outcry?
​There is only one paediatric Long Covid study in the UK, CLoCK, this study makes no attempt to biologically investigate Long Covid and no attempt to find any treatment. Is this £1.4 million lost?
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Long Covid is leaving thousands of children in the UK profoundly sick & disabled. (62000 with Long Covid, 53000 for over a yr, 10000 activity limited alot – James Neill stats) They are losing schooling, friendships, and any chance of an engaged life. Surely this is an emergency.
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“The overwhelming response has just been complete shock that children can be so badly affected and yet more is not being done to help them.” Stacey Poole, on the ITV Meridian paediatric Long Covid Special.
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For decades patients with the post-acute viral illness ME have had no access to effective medical treatment. They have been given harmful medical treatment, exertion, and are often falsely framed as anxious and that their psychological state affects their illness. Half of those with Long Covid meet ME criteria. This is now happening to a generation of children with Long Covid.
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The same researchers involved in forming the dangerous medical model for ME are now treating and researching Long Covid in Kids. They say its not “in their heads” that something physical is going on but then still try to say that there are psychological reasons why children are ill.
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In the paediatric Long Covid study, CLoCK – they are looking to see if past and present deviant behaviours such as stealing, anxiety, depression, self-esteem, anger, inability to share, lying, cheating, perfectionism, disordered eating, and likeability are linked to Long Covid. This is another way of saying psychosomatic factors. They are still trying to push the false theory that Lockdown is causative in Long Covid even though children have got Long Covid before and after Lockdown.
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Is the “Greatest Medical Scandal” happening again to children?
· The same researchers are involved, Prof Esther Crawley & Prof Trudie Chalder.
· The same mud is being thrown – that psychological factors are involved.
· Concerns over research ethics and data collecting and serious methodological errors.
· There are more cases of children and parents not being believed.
· Long Covid is not being investigated as a biological illness in children.
· Calls from the same researchers to treat Long Covid with Activity.
· More cases of Child Protection being inappropriately involved.
· More cases of FII (Fabricated Illness) and PRS (Pervasive Refusal Syndrome) being misdiagnosed, as stated in the Social Workers Practice Guide
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We are at a critical juncture in medical research in this country. There has been a decades long attempt to frame those with symptoms medicine doesn’t understand as ‘biopsychosocial’. This is happening in Long Covid – now.
ME is moving on with updated NICE guidelines that protect patients and a clear way forward from initiated by Sajid Javid MP and the APPG on ME in the Rethinking ME report. Can we let the same harmful model be established in Long Covid and condemn another generation to no effective medical care and no hope of a treatment?
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Quotes
“Long Covid for many children has a devastating impact. The repercussions for their families and friends is profound. This experience is amplified because there are no accessible treatment options. Yet these symptoms are not new, we have seen them before in post-acute viral illness. There is no safety net for children because many of the related conditions such as ME, PANS, MCAS and POTS are under researched and often ignored. We have no reassuring news coming from Long Covid studies and decisive action is needed to ensure a future for these children.” Dr Binita Kane, daughter affected by Long Covid.
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“It is clear that as a parent with a child with Long Covid and an advocate not enough is being done. We find ourselves with no options for medical treatment and no efforts being made to prevent reinfection in schools which is dangerous for children with Long Covid. We need emergency funding aimed at biological investigation and effective treatment. It feels like children are acceptable collateral damage from the pandemic and this isn’t good enough.” Claire Every, Long Covid Advocacy.
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“I have been diagnosed with Long Covid and POTS, I am still not better. I feel the research into Long Covid for young people and children has been held back, so I have been left suffering due to these symptoms being blamed on Lockdown. These symptoms I have are Long Covid, they are not due to lockdown or the pandemic. I feel upset that you are using me as a control in your trial because I did not test positive when you sent a test through, nor did I test positive in April 2020 because no tests were available.” Anon. CYP with Long Covid.
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ENDS
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Media contact:
hello[at]longcovidadvoc.com
www.longcovidadvoc.com
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