The German Government recently announced a ‘Decade against Post-Infectious Disease’ and committed half a billion Euros of research funding. A huge boost for research into ME/CFS and Long Covid – and hugely welcome.
Activists and advocates as well as respected academics have demanded reassurances that this money won’t be used on psychological research. In the past funding has been used for research that assumes a psychosomatic cause, and relies on debunked theories about deconditioning or offers emotional / talking therapy cures for these serious neuro-immune conditions. Recent assessments by, amongst others, NICE in the UK branded much of this research as ‘low’ or ‘very low’ quality. Patient groups say this represents years of misdirected funds and effort.
I agree wholeheartedly. The priority should be for biomedical research:
- biomarkers of various kinds
- investigation of plausible theories of causation
- treatments that improve the life experiences of patients in meaningful ways (whether ability to recover from exertion, improvements in cognitive function, coping skills etc)
That’s where 90% or more of these funds should go. However, rather than spend NO money on psychological research I propose that we redirect the efforts of psychological researchers to areas where their input could help…
Here’s my personal wish list!
Impact on individuals
- what struggles do people with ME and Long Covid face as they adjust to their changed lives?
- what emotional issues, caused by being physically ill, do people face at different ages/stages in their lives?
- what can we learn from the experiences and support needed by people with similarly severe health conditions?
- when expressing emotions is exhausting, how can people process their feelings?
- what impact do medical interactions have on patients? How can these be improved to avoid needless emotional suffering on top of physical illness?
- what types of emotional support are needed and what are the most considerate and practical ways to deliver this?
- how can support be given to people in a very severe state of illness (perhaps exploring options like asynchronous communication via text message or voice note etc)?
- given how difficult and emotionally challenging it is to learn how to pace, how can people in the early stages of their illness be helped to learn as quickly as possible?
Examples of work like this includes: The Role of Psychotherapy in the Care of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by a group of respected and trusted advocates and patients; Katharine Cheston’s research in the field of medical sociology; work by the Chronic Illness Inclusion Project and other partners, in particular the ‘Disbelief and Disregard’ report; learning from other illnesses about the impact of misdiagnosis, such as Lee and Chopra on misdiagnosis of people with EDS/Hypermobility.
Impact on family and friends, impact of family attitudes on patients
- how can family and friends support themselves emotionally whilst caring for someone with ME or Long Covid?
- how can they protect themselves when interacting with professionals who believe family members ‘enable’ their sick relative in ‘false illness beliefs’?
- How can safeguarding needs/processes work to avoid incorrect allegations of Fabricated or Induced Illness in Another?
- how can individuals with unsupportive families, or who have no family, be emotionally and socially supported in the wider community?
- how can family members who have been misinformed and taught to be skeptical be educated and informed about these conditions?
- how can changing families be supported through experiences such as bereavement, divorce, parenting, infertility etc?
Examples of work in this area includes: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members by Brittain, Muirhead et al.
Impact on medical professionals
- learning to cope with uncertainty and inability to heal a patient, without communicating impatience and doubt to that patient
- what research/learning most impacts medical professionals and prevents them from gaslighting patients in the future?
- what do health professionals need to understand about the likely prior interactions of patients with these conditions, in order to not gaslight them further?
- how to counter internal bias to avoid prematurely or wrongly accusing patients and their families of faking their illness?
- how to support whistleblowers and health care professionals working against the grain of prevailing medical opinion in their specialism?
Work already undertaken in this area includes: papers referred to in the ‘Attitudes of Medics‘ section of our article on the Ripple Effects of Stigma; research done in Switzerland on the impact of false accusations of ‘malingering’ by medical professionals and others; work more generally on institutional betrayal in healthcare settings.
Impact on general public
- when an illness has been shrouded in misinformation for decades, what tools can communicators, activists and journalists use to change opinions and build understanding?
- In the case of maligned patient groups such as those with ME and Long Covid, examples of medical and other scandals (Hillsborough families campaigns, Infected blood scandal, Post Office Scandal, Vaginal Mesh Scandal in the UK) may be instructive. They may be more appropriate than more ‘ordinary’ medical illnesses where empathy and sympathy for patients are already widespread.
There are some leads in this opinion piece by Joe-Farrington Douglas writing for the Health Policy Partnership. He hopes that Long Covid will shift attitudes towards both Long Covid sufferers and people with M.E. This is media and communications research, but psychological insights could be key to understanding how to embed new, up-to-date knowledge.
Impact on research funders
- what methods are most effective to share the clear and overwhelming evidence that ME and Long Covid are biomedical conditions?
- How to reduce the temptation to fund pointless ‘cures’ based on spurious assumptions about psychological causation?
- What actually impacts the research funders individually and as a group? There is only a small psychological component to this – it’s more about institutional change and policy.
- How can patient involvement be done to maximise the usefulness of money spent on research?
Examples of related work in this area: Patient involvement in priority-setting for medical research: A mini review of initiatives in the rare disease field by Katirai, Kogetsu et al.
Good-faith research into ME and Long Covid enables psychologists to robustly challenge people claiming psychosomatic causation. It could build the careers of psychologists who are allies, and enable them to influence the promotions and funding decisions of the future.
Thank you to Saad Chaudhry on Unsplash for the image at the top of this page.
