With Donald Trump’s election in the US, a wave of uncertainty has swept the globe: for the environment, gender, war, and health. However, the undermining of women’s rights has become a major theme throughout the presidential campaign. As we lurch further into climate breakdown and instability, the further society sways to the far right – just as the world did after the Spanish Flu pandemic in 1918. A place where simple answers are easier to stomach than a complex reality, the vulnerable are seen as disposable, and there’s always someone else to blame – not least, in this context, with long Covid.
Here we are focusing on laying the blame on women; the blame on mothers. Austerity, a ragged and inflexible NHS, a pandemic, an unfit SEND system and policy changes have led to an increase in false safeguarding accusations – almost always against the mother. Nevertheless, the framework and systemic tendency for medical misogyny is rooted in the beginnings of medicine. It is a conservative, top-down, and authoritarian structure built on strong foundations of patriarchy and patrimony.
The Cerebra Report (2023) by Clements and Aiello found allegations of Fabricated Induced Illness (FII) against parents of disabled children were widespread, often causing devastating and lifelong family trauma. It’s one thing to go for help and not find any medical care. It’s another to be blamed for your child’s disability and illness. Clements discovered parents with disabilities were four times more likely to face accusations compared to non-disabled parents.
The pandemic continues to leave in its wake a monstrous wasteland of chronic illness. One of those hydras is long Covid.
Long Covid: nothing new under the sun
In the early days of Covid, we were reassured that children were not affected, and post-acute viral disease was not even mentioned. Yet, these were simple answers for a complex situation. In March 2024, the ONS found that over 111,000 children have long Covid: a devastating, multi-system disease. Denial and the desire for normalcy have led to more families facing traumatic safeguarding referrals in an effort to divert blame and avoid institutional responsibility.
This is nothing new in the world of myalgic encephalomyelitis (ME/CFS), disability, and chronic illness. The LeAP research program found social care policies in the UK assume parental failings as a default position. One in five families with a child with ME faced false claims resulting in child protection involvement. Families with children with long Covid now find themselves inheritors of a precarious and dangerous system.
But how has this become so ubiquitous in medicine that it barely registers as a concern for healthcare professionals? Again, we come back to systemic problems: medics overstretched and alienated from patients; education that rarely covers post-acute viral illness; a protective and anti-whistleblower culture; a root bias towards acute illness, and an ingrained attitude denigrating ME and many chronic illnesses medicine deems unexplainable.
Another key reason for this growing problem is psychiatric trespass.
Psychiatric trespass
“Within the field of liaison psychiatry and psychosomatics, CFS, CFS/ME, IBS, FM, CI, CS, EI and a number of other conditions, for example, chronic Lyme disease, are bundled under the so-called “Functional Somatic Syndromes” (FSS) and “Medically Unexplained Syndromes” (MUS) umbrellas”. DSM-5 Working Group, DX Revision Watch.
And here is the problem.
In courses, textbooks, and cultural assumptions, we have the pernicious belief that medically unexplained symptoms (MUS) and its other forms have psychiatric factors. Which is why professionals can be so quick to call in child protection. Because if you have a mentally disturbed mother, that child is in danger and safeguarding action is needed. With ME/CFS and long Covid often assumed to be MUS or a Perplexing Presentation (PP) it is clear there’s a growing risk to children and families.
However, it is a blunt instrument – with the majority of all safeguarding referrals unfounded and causing untold damage. Action for ME found that 70% of cases were dropped in a year. Tymes Trust has been involved in over 140 cases; none resulted in a guilty verdict. The Cerebra Report found that 84% cases were abandoned or had no follow up. Dr. Nigel Speight, involved in over 200 cases over the last 25 years, said:
In c.98% of all the other cases, proceedings were aborted without a court order and the case eventually closed. Some of these cases had to experience prolonged social work involvement, albeit with no real threat of removal.
It is this wild, free-reign that psychiatry and the DSM-5 have that is so dangerous. It can claim, without evidence, any poorly understood disorder without due warranty, into psychological abnormality due to its broad reclassification of somatic symptom disorder (SSD) in the DSM-5. It’s such a vast overreach that psychologists have classed up to 23% of the population as having maladaptive thoughts connected to physical symptoms. Long Covid, ME, and other long-term illnesses can easily be given a psychiatric SSD diagnosis.
‘Professional’ overreach – and not just in long Covid
In the book Cracked, Dr James Davies states:
first we named a so-called medical disorder before it has identified any pathological basis in the body. So even when there’s no biological evidence that a mental disorder exists, that disorder can still enter the DSM and become part of our medical culture.
However, it is not just the DSM-5. ME is in the liaison psychiatry and functional somatic syndromes of a major textbook, Kumar and Clarke’s Clinical Medicine. It is no wonder why women with ME can be sectioned so easily or starved to death.
Another way psychiatry has overreached is that the Royal College of Paediatrics and Child Health (RCPCH) have included PP and MUS as an alerting sign for FII in their guidance.
There are fundamental issues here. One being that the RCPCH alerting signs are not derived from any peer-reviewed research. This amalgamation of conditions is increasing unlawful adverse discrimination at an alarming rate. Yet the RCPCH does not recognise the harm caused by false allegations. Even the British Association of Social Workers state in its FII Practice Guide:
If social workers were to follow the RCPCH guidance, the proposed assessment criterion for FII is likely to cast suspicion on many families who are not harming their children, including children and young people with disabilities and illnesses that are undiagnosed.
FII is an accepted very rare condition. Gullon-Scott and Long estimated between 53-376 cases in the UK and that the RCPCH guidelines lead to an extraordinary number of false positives.
But it is the human story that we need to remember.
State-sponsored trauma
One mother with a child with long Covid and who experienced unfounded safeguarding proceedings said:
Hearing that I was abusing my daughter because she was using a wheelchair due to fatigue and pain, and doing my own research on how to manage her symptoms after being repeatedly being gaslit by medical professionals, was devastating for both myself and my daughter. After constant fighting for care and support for her for over 18 months, I was broken and my daughter lost all remaining trust in any medical professionals, her school and all professionals
The trauma for families cannot be understated.
It’s more complicated than saying those with MUS and PP are mentally ill. We can see from this presentation by professor Stokes that there is an assumption of a mix of physical, psychological, and behavioural factors and how embedded the culture of patient blame is in medicine. However, this is an old, old trope – one that has delayed treatment and research for decades, especially for women, due to the prejudice that their emotional lives are caught up in their biological illnesses.
In many ways, it is a perfect storm. The reaction to the pandemic through educational government policy has been to zealously focus on attendance. A narrative of parent blame and anxiety has been perpetuated, so the foundations do not have to be fixed. Children in schools remain unprotected from airborne illness.
The updated (September 2024) statutory government guidance, ‘Keeping Children Safe in Education’ changed the phrase ‘deliberately missing’ education to ‘unexplainable and/or persistent absence’ in relation to safeguarding. It is another pressure point where, in the omission of policy on long Covid, there is an increased risk of unsubstantiated child protection. Schools are now expected to inform social workers for any unexplained absence.
Long Covid and the rise of populism: blame the women, not the system
There is a dearth of high-quality research, medical education, and specialism in long Covid. Yet we have a situation where it’s easier to point the finger at families, at women.
We become the scapegoats, a simple answer for a complex problem – all to avoid humility in the face of responsibility.
It is clear that we need action on multiple levels: a thorough change of medical literature and guidance to close loopholes; high-quality paediatric research, and a drastic shift in culture.
We live in a connected world where politics, medicine, and social forces collide. We are more likely to experience pandemics because of the destruction of the environment. Yet the political response to climate breakdown and pandemic fallout has been a rise in populism. It supplies simple answers, shifts the blame game on to the individual – all to avoid institutional due diligence.
It is no wonder that women have been caught in the crosshairs. We have become an easy target for complex problems.
Featured image via the Canary
