Fix Your Hearts Or Die -David lynch

Dr Aspa Paltoglou hears from physician Dr David Joffe about what’s needed from our discipline; from Janina Bradshaw about what Psychotherapists can do; and from occupational therapist Kirsty Stanley.

Iam a psychologist – a Senior Lecturer in Psychology at Manchester Metropolitan University – and I have felt a bit useless in the last five years. From where I stand, I can see overwhelming evidence that Covid-19 has terrible and long-term consequences for people's health, and I have questioned whether Psychology is the specialism holding the key to dealing with Covid-19.

Many times I have wished I was a virologist, or an engineer that could help clean indoor air, or somebody that could develop vaccines against Covid-19, so that I could contribute to the eradication of Covid-19 and successful interventions for Long Covid. Or maybe a politician, so that I can pass laws for issues such as universal masking in healthcare and other public settings, clean indoor air in all public spaces, more research grants on Covid-19 vaccines and for Long Covid interventions.

I have written for The Psychologist about my personal approach to continuing pandemic precautions, and the support I have received in this. But there's another side to that – the Covid misinformation and minimisation I have seen. The idea that Covid poses no greater risk to the large majority of the population than the flu, which is simply not true. The overemphasis on the negative impacts of lockdowns, over the fact that there were 'no good options' at the time and without such measures many more would have died. Sometimes there is no mention of the possibility that Covid-19 infections could be responsible for cognitive deficits and decline in the population. Some people continue to suggest that Long Covid is primarily a psychological disease. The notion that ME (which has considerable overlap with Long Covid) can be treated by graded exercise and CBT has contributed to deterioration and death of patients – have we learned nothing?

And here's the thing: from what I have seen, Psychologists themselves have not been immune to this minimising of Covid, or the sharing of misinformation. With that in mind, I was keen to seek out broader conversations around the edges of our discipline, to ask other professionals how Psychology can support themto deliver effective care to Long Covid patients.

First, I contacted Dr David Joffe, a physician, researcher and Vice-Chair of the World Health Network Long Covid Working Group.

Thanks for your time, David. Can we start with one area where you think psychological help is important for Long Covid sufferers?

Yes. There are several examples of cognitive and emotional impairments associated with Covid-19 infections and Long Covid. We already know that the fronto-temporal injury mediated by hypoperfusion – decreased blood flow through an organ – will considerably affect mood. The incident rate of post-infectious depression is considerable. There are also several ways repeated in which Covid infections can lead to cognitive impairments and increased risk of Alzheimer's disease. Similarly, Yunhe Wang and colleagues noted in Naturethis year that 'compared with contemporary controls, infected participants had higher subsequent risks of incident mental health at 1 year, including psychotic, mood, anxiety, alcohol use and sleep disorders, and prescriptions for antipsychotics, antidepressants, benzodiazepines, mood stabilizers and opioids.'

The incidence of PTSD as a consequence of prolonged Intensive Care exposure and a life-threatening illness are also vital to consider. That can sometimes manifest as 'survivor guilt'. Furthermore, injury to the hippocampus and amygdala have been clearly established and are linked to PTSD.

There is also clear evidence of Dopa Senescence with rising cases of REM sleep Behaviour Disorder and an increase speed of neurodegenerative processes following infection. The integrative role of dopamine and serotonin imbalance are clearly another marker of this process.

What is Dopa Senescence?

Yang and colleagues recently demonstrated direct Dopamine cell aging and death. The usual pathways of cellular recovery are damaged. The virus causes direct cell death, but also prevents the usual cascade of enzymatic repair from being activated… hence the term senescence. This is what we are so worried about. I have 20+ Long Covid patients with laboratory-confirmed REM sleep Behaviour Disorder. The average age is about 40. It's primarily a condition we used to see in older men with a high rate of Parkinson's or Lewy Body Dementia. Will they be the same? Time will tell.

Which psychological therapies could be relevant, and why?

We need psychotherapists and other psychological practitioners to treat phobias and PTSD. Many Long-Covid sufferers have significant issues with phobia related to the risks of repeated infections in a world devoid of mitigation. It's essential we get supportive psychological therapy, from CBT to strategies to improve impulse control and reduced socialisation.

Addressing the phobias could help them continue taking effective Covid-19 precautions, such as wearing well-fitted respirators, without any unwanted psychological distress.

What else would be helpful?

Therapies such as Dream Rehearsal Therapy and other non-pharmacological treatments have been used for a long time, and are known to be very effective in treating some psychological disorders such as PTSD in parallel with pharmacotherapy. We need Neuropsychologists to measure cognitive challenges and suggest therapies.

In terms of research, as a Sleep Physician with expertise in neurocognitive dysfunction and driving in OSA, there's a critical role of Neuropsychologists for both primary and secondary evaluation of metrics, such as short-term memory, attention, concentration, visuospatial agnosia and apraxia. Repeated measures following a therapeutic intervention, or merely as a guide to rate of progression will be critical. At this point, there is little data to determine the risk and rate of progression in those with prior normal function. We just don't know.

Are there also emerging concerns as the virus changes?

Yes – with the Omicron variant, the evidence for greater neurotropism (i.e. the ability of a virus to invade the nervous system) has been realised. And there is a growing concern of rising ADHD as a consequence of direct putamen injury. This will have considerable implications for those practising in Educational and Child Psychology.

Last but not least, the toll on partners who are now carers, and kids who have disabled parents, should not be underestimated. Couples Counselling and Supportive Family Counselling should be considered crucial. These roles have been underestimated and severely underfunded. I have mentioned the damage to kids. They are not protected against Long Covid. As an Adult Physician, I am not positioned to advise in this regard, but they have been poorly treated in general.

Would you also have an overall message for our readers?

Yes. Although we need the input of Psychologists, please do not psychologise ME/CFS or Long Covid. The Psychology community needs to understand that this is a direct organic, neurological condition, with a plethora of complex outcomes, including severe consequences for autonomy and quality of life. The presence of depression, dementia, and PSTD are clearly evident from the vast body of literature.

The ME/CSF community have long railed against the 'Psychologising' of their conditions. The evidence for interventions such as Graded Exercise and CBT in isolation have been questioned and debunked. That community were right to warn us of potential missteps being repeated for a condition with vastly more neurological sequelae, and immense disability.

It is crucial that issues around plans for Rehabilitation and 'Return to Work' strategies appreciate that the vast majority of Long Covid patients will never achieve anything close to their prior function. Mental and physical pacing, reducing workload, and supporting people to manage these tasks can be helpful strategies. But there needs to be a recognition that these patients will likely not return to baseline.

Clinicians cannot manage the psychological damage alone. Psychologists must be properly educated and informed to realise the consequences. Let's see the back of those that consider this a malingering condition, or one that will improve with 'a bit of CBT'.

Thank you Dr Joffe for your insightful comments… I think they will empower practitioners and researchers to focus their efforts in the right direction. Long Covid is a physiological condition with some psychological and neurological consequences; Psychologists can help address these consequences, but we should not expect psychological therapies to be anywhere near sufficient to treat Long Covid.

There is still a lot we don't know about Long Covid. We need to learn, fast, and get this right as Psychologists.

Next, I approached Psychotherapist Janina Bradshaw. Here's what she had to say.

Long Covid or Post-Covid condition is a complex and multi-faceted syndrome, with over 200 symptoms listed under this broad umbrella term. The latest figures from ONS suggest at least two million people in the UK may have this condition. This includes over 100,000 children and young people. It is a massive and growing problem.

Many with the condition feel neglected and overlooked by the medical establishment – research is under-funded and there are no known cures (although there are some treatments and therapeutics in trial).

There is a danger that Long-Covid (LC) could be psychologised, in a similar way to CFS/ME – which is also a complex condition which for many years has been viewed as being of largely psychological aetiology. It has sometimes seemed that with a very complex condition that we don't know much about, if medicine doesn't have the answer, it must be the patient that is 'at fault'. We might see this as medical gaslighting. Given that government and the medical establishment's response to Covid can appear to be to downplay the ongoing impact, many with LC may be left feeling disenfranchised, rejected or even harmed.

I do want to emphasise that although there is some overlap in symptoms between CFS/ME and LC (particularly Fatigue, and Post Exertional Malaise [PEM]), LC is a much more heterogeneous condition than CFS/ME. Many with new onset health conditions (which includes but not limited to Diabetes, Heart Conditions such as POTS and pericarditis, Cognitive Decline and 'brain fog', other autoimmune conditions, plus the re-activation of viruses such as EBV) may not even realise that these new onset conditions are as a result of their previous Covid infections. At present, the medical establishment are not fully making these links either, despite there being many studies which point to Covid as a precipitating factor.

If you were a previously relatively health and active person, it may be assumed that this loss of health status is a major issue to adapt to. At present, we do not know if people will ever resume their previous functioning. It is the role of therapists to assist people with their process of coming to terms with this.

As a therapist, I want to stress that LC has a clear physiological basis, requiring medical input and much more research to begin to address the physical basis of this condition. However, I do think that therapy practitioners have a role in assisting LC patients in coming to terms with the grief and anger they may be feeling as a result not only of developing LC, but also due to the lack of an adequate response to the pandemic which has resulted in lack of appropriate treatments. Given that health and social care workers, teachers and others who work on the 'frontline' are over-represented in the LC population, as well as people from more deprived economic backgrounds and those from ethnic minorities and women, therapists have a role in offering a listening ear. It's about allowing expression of the grief and anger, and also acknowledging and supporting people to find their voice in the face of such systemic injustice.

Another issue I think is important to reflect on as psychotherapists is this: why are so many people so willing to accept the continuing immense impact the Covid is having on the population? My impression is that grief and trauma from the start of the pandemic, coupled with the inadequate and deceitful conduct of government, plus a lack of public health messaging, has left many people so unable to face this ongoing reality that they are heavily in denial. They are unable to grasp the very real harms that repeat Covid infections are having on them and their children. There is probably also a lot of guilt that people will have to face if they realise how their actions are contributing to this ongoing harm.

Repeated Covid infections increase the chance of developing Long Covid, so prevention should always be an important part of our strategy to deal with Long Covid. Psychotherapists could help and empower individuals to use protection such as masking and help them deal with the psychological conflicts of being one of the few to still being Covid cautious in a world that seems willing to ignore Covid-19.

From my part, I will do everything I can to help people with Long Covid. I believe psychotherapy can have a positive effect in the lives of the people that suffer from this debilitating illness.

I thank David and Janina for their thoughtful input.

Finally we spoke to Kirsty Stanley, an Independent Occupational Therapist and Health Lead at the charity Long Covid Kids, about the issues she is seeing.

Understanding the wide ranging co-morbidities that can occur following COVID-19 infection is essential for appropriate diagnosis and management. Children and young people (CYP) can display similar Long Covid symptoms to adults, but they are far less likely to be offered medications for Long Covid's common co-morbidities such as Postural Orthostatic Tachycardia Syndrome (PoTS), instead only being offered self management options. Additionally CYP can develop Paediatric Acute Neuropsychiatric Syndrome, an equally misunderstood neuro-inflammation condition, that can initiate tics, emotional regression and hallucinations, which can respond to antibiotic treatment. Many families feel forced to seek expensive support from private practitioners. Gastrointestinal symptoms are also extremely common and can present as disordered eating but may be mistaken for eating disorders.

Post Exertional Malaise (PEM), also known as Post Exertional Symptom Exacerbation (PESE), can be a particularly troubling symptom for the CYP, their parents or caregivers and professionals to understand. The delayed onset of symptom exacerbation following physical, cognitive and emotional exertion can make it seem like CYP are functioning well. The subsequent inability to attend school due to these severe symptoms then sees some families at risk of fines or, in growing numbers of cases, referred to social care for neglect, or fabricated and induced illness claims. Whilst professionals should always be alert to the possibility of abuse, it should also be recognised that the negative and long lasting impact on families of false claims is immeasurable.

Where adults may find equipment, aids and adaptation readily provided, children have regularly been told to avoid using wheelchairs due to the risk of 'deconditioning'. We need to recognise that without vital mobility aids many can become stuck at home, or indeed in bed, unable to engage in daily life. CYP talk about the loss in friendships, as peers move on with their lives whilst they struggle to engage with activities where they need to pace or plan energy. Finding community with other disabled peers can be useful for identity – identifying as disabled is not something that should be labelled as negative.

The impact of medical gaslighting can not be underestimated. The very real risk of psychologising Long Covid is that CYP end up masking symptoms of anxiety, depression, self harm and suicidal ideation. Psychologists need to support around re-building trust with healthcare professionals, to ensure that the disbelief young people have experienced in their formative years does not continue into health inequalities in future.

Occupational Therapists are among the professionals well-placed to consider people holistically. Whilst we inevitably wait for large scale biomedical research, drug and treatment trials, we should not underestimate the positive impact that addressing the person's social environment can have. Evidence from ME/CFS demonstrates that where CYP are appropriately supported to rest and pace during their early illness they do have a significant likelihood of recovery (for multiple reasons this is sadly less likely for adults). Education for parents, caregivers, and those working in schools and colleges, can better facilitate a supportive environment where CYP are not pushed beyond their energy limitation, but facilitated to succeed within it.