This is an extract of a letter Long Covid SOS sent to the Secretary of State for Health and Social Care Matt Hancock in February 2021
Last October I was invited to join the Expert Group to define the research question for the £20m Long Covid funding call. As the only patient representative, I was asked to identify the most important research questions that patients feel need addressing.
My response was that patients wanted to know why they developed this condition while others did not, what can be done to prevent more people from getting it and, most importantly, they wanted to know how it can be treated.
While the projects funded by the NIHR/UKRI call are very welcome and will be invaluable in informing our response to future pandemics, they unfortunately don’t address the needs of patients in the short term. We believe that there is a requirement for rapid, robust clinical trials of therapeutics now – in truth, we needed them 6 months ago.
Over past months people in support groups have been self-medicating with supplements and over the counter medications; the absence of medical care has led many to risk ordering prescription medicines from abroad with an associated lack of clinical guidance. In our open letter in July, we asked for doctors to be empowered to treat patients. Unfortunately, there still exists very little knowledge about how to treat Long Covid, and what information there is has not been widely shared. Health professionals in the NHSE assessment clinics are having to manage patients according to their own experience which in most cases is extremely limited. As a result, both doctors and patients find themselves in a position which is untenable: many patients have been waiting for months without treatment which is still not forthcoming and medical practitioners are desperately lacking in shared learning, data, and evidence. Patients present with a vast array of symptoms and guidance on which therapies are appropriate is unavailable.
Doctors at UCLH have seen more than 1000 patients and are obtaining promising results in some individuals using existing therapeutics off-licence – but without clinical trials to test their hypotheses we are left with clinical uncertainty. We find it troubling that there is no funded research currently being carried out within the NHSE assessment clinics themselves, given that this is where so many patients are being seen. A multi-centre trial involving these services would enable clinicians to raise research questions and confirm clinical findings.
As things stand there are no approved treatments for Long Covid patients. We hope that something along the lines of the RECOVERY trial can be set up – a multi-centre, multi-armed adaptive rapid assessment of therapeutics. We would welcome the involvement of immunologists so that phenotyping and assays for autoimmunity and other biomarkers can be carried out on the same participants. We also urgently need evaluation of non-pharmacological interventions so that guidelines and recommendations can be made for therapies such as physio, breathing exercises, voice management and other strategies which have anecdotally shown success in alleviating symptoms.
A national registry for data sharing and logging of forthcoming trials to avoid duplication would be hugely useful in this situation where knowledge is so scarce. Perhaps we even need a Long Covid Czar to co-ordinate it all.
The importance of these proposals cannot be understated; the economic, social, and healthcare burden of this cohort is likely to be enormous – many have decades of potentially disrupted life ahead of them which early treatment may help mitigate.
I would like to draw your attention to comment made by Dr Dina Pfeifer at the WHO Europe press conference on 25th February, which encapsulates this need:
“We don’t know enough to provide a good service or to address the needs of the patient. It is so important that we integrate the research agenda into clinical service delivery and test interventions in an appropriate way”
We hope that the £1.5m left from the UKRI call can be used straight away to kickstart this process, with additional funds found urgently to get a clinical trial underway – it really is of critical importance and we hope that we can count on your leadership and support.
The response from Matt Hancock can be viewed here