I wish to talk about Covid-19 and how it has developed, my understanding of long Covid, the current long Covid plan to support patients in Ireland and to offer some suggestions on what we could do better.
The Mater Misericordiae University Hospital is home to the national isolation unit and we were the first to admit patients with Covid-19 in Ireland. I admitted the first adult patient on 2 March 2020. In the first wave of Covid-19, with the original virus, it appeared that the lungs and heart would be the targets of damage. Following the establishment of a long Covid clinic at the Mater hospital in June 2020, we became aware that the heart and lungs repaired themselves and that Covid-19 primarily affected the brain. This was where residual damage persisted, and some patients, even a year after infection, had residual symptoms that were all referable to brain inflammation.
The UK established one of the first long Covid clinics. Some 50 or 60 clinics have been established. Their focus was primarily on heart and lung rehabilitation, as the first variants had led to many patients being hospitalised and in intensive care units, ICUs, with Covid-19 that affected those organs. In the UK, however, National Institute for Health and Care Excellence, NICE, guidelines warned that many of the post-Covid symptoms needed to be managed and not further investigated, as most investigations of long Covid patients did not reveal any abnormalities. It appeared that abnormalities were below the level of detection of the tests done.
Early into the first Covid-19 surge, I received a Health Research Board, HRB, grant to lead a project on long Covid in the Mater hospital. I did this in partnership with Professor Walter Cullen, professor of urban family practice at UCD. We established our clinic at the Mater hospital to provide a research platform and a clinical care centre. We developed a protocol called "Anticipate" and administered questionnaires to 155 patients over time to perform quality of life assessments on their journey with long Covid. To date, we have seen approximately 1,000 patients. We have followed up with more than 80 patients monthly, and 25 or more new patients are being seen monthly. This was a snapshot of the early 155 patients.
As stated, early in my clinical observation, and from observations derived from a review of the medical literature, the brain was the primary target of long Covid. A review by Shin Jie Yong et al., published in January 2021, and I have these references, highlighted the pathogenesis of long Covid neurological symptoms. We based our understanding and treatment of patients as early as April 2021 on focusing on the brain and the need for brain rehabilitation as accumulating information from not just the author I mentioned but also other medical literature supported this the approach where the money was. The review by Mr. Yong focused on the posterior part of the brain being involved in long Covid, with ongoing tissue damage, possible viral persistence and chronic inflammation all emanating from the brainstem, which is the posterior part of the brain. The brainstem contains numerous distinct nuclei and subparts that regulate the respiratory, cardiovascular, gastrointestinal and neurological processes. Indeed, brainstem dysfunction has been seen in other similar disorders, such as in chronic pain and migraine and myalgic encephalomyelitis or chronic fatigue syndrome. UK NICE guidelines for the long-term management of Covid-19 recommends access to multidisciplinary services, including occupational therapy, physiotherapy and clinical psychology, with a range of specialist skills.
Based on our management of the long Covid patients and accumulating medical evidence in early 2021, we submitted an application to the Ireland East Hospital Group, IEHG. It focused on neural aspects and on working in partnership with GPs nationally to support these patients. This approach would include a range of specialists, but neuro rehabilitation and neurology would be critical. We heard nothing further about this submission until I was called into our CEO's office in March 2022 and was told there were interim guidelines for the management of Covid-19 in Ireland. This was the first time I saw this document, but apparently it was published in September 2021. I received it in March 2022, just a few months ago.
As I said, we had this study called "Anticipate" and we evaluated 155 patients. We conducted questionnaires and this year there have been some treatments for long Covid patients based on the suspected central nervous system, CNS, injury of our patients. As stated, after one year, many of our patients, including many staff members from the Mater and other hospitals who were referred to us for evaluation and GP referrals from the region, had "brain fog" cognitive issues, exhaustion, sleep disturbances and psychological issues they did not have before. There were also blood pressure, pulse and thermoregulation problems. It was a sort of dysautonomia, which is an abnormal signalling from the vagus nerve as it courses out of the brain. It will be recalled that patients with Covid-19 get damage to cranial nerve 1 and 2, which concern smell and taste, but accumulating experience in my clinic and internationally has shown that many of the cranial nerves are involved, including the vagus nerve, which controls the fight or flight response that many long Covid patients experience. We have published the results of our work in medical journals and offered to share our results with the national clinical lead and with the Minister for Health. We had a dissemination event at the Catherine McAuley Centre in April 2022 to present all our results, as required by the HRB. We invited the Minister to attend. We have written to seek an opportunity to present our data as we see gaps in the current interim long Covid plan for Ireland. We have offered to assist in rewriting the guidelines to reflect the current problems that patients are experiencing.
I have had a chance to review the draft long Covid guidelines, using version 4 as set out on the website and dated 2021. It outlines a plan that appears to be taken from the UK plan, and, indeed, most references are taken from the UK, with some from Italy.
By the time this document was completed, distributed and enacted, the goalposts had shifted. It focuses on early post-Covid follow-up with a group of pulmonary specialists, and a cadre of dieticians and podiatrists funded. Interestingly, there was no mention of psychologists. However, as stated, for those of us managing patients in the hospital, the accumulating evidence at that time was that the lungs and heart were healing but the brain was not healing. In addition, when I reviewed this long Covid document, I was surprised to see that the Mater infectious diseases, ID, clinic was not included as a site for follow-up, despite us generating most of the scientific data in Ireland on this subject and managing, I suspect, more patients with our clinical care follow-up.
I am providing the committee with many of the published articles on long Covid emanating from the Mater ID clinic in a separate communication. I would also like to highlight the long Covid briefing paper for the National Public Health Emergency Team, NPHET, from the office of the chief clinical officer in February 2022. It still focused on the establishment of post-acute clinics, establishment of long Covid clinics and a tertiary referral for neurocognitive clinics for those with complex neurocognitive-neuropsychological problems. It provides also a literature review but failed to include any of the Irish publications that were in the public domain at the time. It also comments that the current plan is an interim model of care and, therefore, it will be an agile process.
To summarise from our publications, about one third of our long Covid patients still have significant neurocognitive defects at one year. From our GP supported publications, 15% to 20% of people with long Covid have unexplained anxiety, depression and post-traumatic stress disorder, PTSD. In addition, some are experiencing problem alcohol use to cope with the challenge of long Covid. These are problems that they did not have before Covid.
We have just published the first pilot on the use of low-dose naltrexone and its utility in treating long Covid. It appeared to benefit patients with long Covid. The group we treated had been unwell for an average of 333 days, with no improvement prior to this treatment. Based on the current gaps in the Irish long Covid plan, I have met with the neurorehabilitation specialists who attend the Mater and who are part of the plan to staff the new trauma centre there. We have discussed how to deal with the issues patients are facing. Some are currently being discharged from the short-term post-Covid clinics because nothing is being found to be wrong with them, that is, they have no cardiac or pulmonary abnormalities. Some have bounced from one specialist to another, with many thousands of euros worth of testing - such as pulmonary function tests, CT chest, CT brain, Holter monitoring - and been told that there is nothing wrong. I had recent contact from a psychiatric nurse who has had long Covid for a year. She has overwhelming anxiety and cannot attend work. She has been referred to a psychiatrist privately. The first appointment available is February 2023. GPs do not have a clear referral pathway or guidance on the management of long Covid. Patients are coming to me having been prescribed a long series of medicines that just control the symptoms, from pain killers, to nerve blockers, to sleeping pills and psychiatric medicines, and they are no better.
What we propose at the Mater is a centre for neurorehabilitation, with a national network to support GPs. This is because there are so many patients throughout the country with long Covid. Many of them cannot travel because they are too ill. This neurorehabilitation centre will focus on brain rehabilitation because patients with long Covid act very much like patients who have experienced closed head injuries. A group of neurorehabilitation specialists, neurologists, ID physicians, psychologists, psychiatrists and neurophysiotherapists need to be the primary team managing these patients because CNS is the problem with our patients with long Covid. In addition, we propose to engage Professor Walter Cullen and team family medicine to develop a set of educational materials, guidelines and protocols that GPs can follow in order that they can better understand this condition and treat the patients in their communities.
Covid-19 is ever mutating and changing. Ireland must be agile and adapt the long Covid plan in order to serve the patients who are being let down by it. We have known for 18 months, based on accumulating scientific data, that brain damage is the issue with long Covid. We need a new plan and new resources and staffing to support these patients to recover and return to being contributing members of society.