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Joint Committee on Health debate -
Wednesday, 6 Jul 2022

Effects of Long Covid and Provision of Long Covid Care: Engagement with Dr. John Lambert

The committee is meeting with Dr. John Lambert to discuss the effects of long Covid and the provision of long Covid care in Ireland. I welcome Dr. Lambert, who is a consultant in infectious diseases at the Mater and Rotunda hospitals in Dublin and a full clinical professor at the school of medicine in University College Dublin, UCD.

Members and the witness are again reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable or to otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if statements are potentially defamatory in respect of an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that any such direction is complied with.

I call Dr. Lambert to make his opening remarks.

Dr. John Lambert

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.

I thank Dr. Lambert. I ask members to stick to their eight-minute slots. We may return to them if there is time at the end.

I thank Dr. Lambert for being here and for his work and advocacy on behalf of long Covid sufferers. Does he think that society and employers need more assurance that this is something that is really impacting on people? I feel that society has not accepted that long Covid is something that is real and impacting on people's lives and on their ability to perform in their jobs or live normal functioning lives.

Dr. John Lambert

This is a totally separate issue, but it has been a long-term problem. Some of the patients have chronic fatigue syndrome, ME, as part of their long Covid. For decades, so many patients have been told that there is nothing wrong with them and to just exercise more. In some communities, both in the general public and the medical community, there is a belief that these patients are making up their illnesses and that if they try harder and be mindful, they will get better. However, the reality is that most of the patients I took care of are healthcare workers who never missed a day of work in their lives. They never missed a day of work in the ICU and worked long shifts yet here they are, coming down with Covid from an infection they caught in the hospital. Two years later, they have done everything they possibly can, including private care, to get help and they are basically told that there is nothing wrong with them and that they should just exercise more and be mindful. That does not work for this condition. PET scans of long Covid patients for research studies have shown that there is brain inflammation. Patients are not making this up. It is real. It is all in their head; there is damage to the brain and that is where the focus should be. There should be an education campaign for employers, occupational health doctors and businesses to support these patients because they are not making up the problem.

Does Dr. Lambert have any estimate of the number of sufferers of long Covid in Ireland? Is it prevalent among any specific age cohort or gender?

Dr. John Lambert

It seems to be more common in women than men, but in our first wave it was equally balanced between men and women because they were primarily healthcare workers who came in from the first wave. Our studies at one year showed that 30% of people were still not right. I would say that 1% were unable to work, function or get out of bed, so they were unable to return to work. Looking at the number of cases in Ireland, which is approximately 5 million because some people have had the virus two or three times, each time you get Covid, you are at risk of long Covid. If you calculate conservatively that 1% will be disabled by long Covid, that is 1% of 5 million. Looking at people impacted by long Covid, lots of staff tell me that they got mild Covid three months earlier and that their brain is not working right. They cannot remember their PIN or names at work. It has a subtle effect on many people, and that is the 30% I was reporting from the studies that we did at the Mater.

Dr. Lambert spoke about brain inflammation. Is this a recognisable medical condition that can be certified? Is it accepted among medics? People suffer from a range of conditions, but can a person be certified by a doctor or physician as being a sufferer of long Covid?

Dr. John Lambert

Legislation was passed in the UK, I do not remember when, supporting long Covid being a condition for which patients would be entitled to disability. I do not know if that has happened in Ireland. I hear from many of my patients that their benefits are going to be taken away shortly and they are told to return to work or find ways to cope on their own. The challenge is that it is one of those vague conditions like ME. Some people have pain syndrome, some pass out, some have exhaustion, some people have brain fog and are unable to concentrate and some have tinnitus. There are so many different symptoms related to the brain and there is no magic blood test. The scans that I spoke about to show the abnormalities, the CT brain and MRI scans of the brain, are normal. It is PET scans that show up the abnormalities and those are not available in Ireland. I think it has to be clinical diagnosis. We have to believe the patients because my patients want to go back to work. They are not malingering.

Okay. On the international evidence, Dr. Lambert has mentioned the UK and Italy. Is it certifiable as a condition in those countries? He mentioned the use of the PET scan, for example. Is that something we can learn from and follow here?

Dr. John Lambert

I have not done a literature review on what is available in other countries. I focus mostly on taking care of patients and dealing with these issues. That would have to be looked into further.

Okay. On the community response, Dr. Lambert mentioned the need for occupational therapists, OTs, and physiotherapists. Again, they are dealing with the backlog that is there anyway and the usual pressures within the health system. This will add considerably to that pressure across the community setting. Is that a fair assertion?

Dr. John Lambert

Absolutely. Even today, our health services have been cut back because we continue to admit patients to the hospital, we continue to have outbreaks of Covid in the hospital and staff out of work. All of our healthcare services continue to be impacted by Covid. For example, like I said one of the big gaps is that in the first year, we had a psychologist to support the patients, or staff patients, with long Covid. Those services have gone. In the long Covid plan for Ireland, at least the version published in September 2021, there was no provision for patients getting psychology or psychiatric support and that is a problem. Psychiatric services in Ireland were deficient even before Covid so it is going to be an additional challenge but it is not optional. We have a healthcare force here that is going to be affected if we do not start putting together some plans to get them rehabilitated and back to work.

Has there been any difference between any of the different strains of Covid as far as the severity of long Covid is concerned?

Dr. John Lambert

We do not think so. Like I said, the first waves, the Delta wave and these other strains attacked the brain but they also attacked the heart and lungs. The new strains of Omicron are not attacking the lungs and the heart to the same degree. It is probably ten times less but they are ten times more contagious, so more people are getting long Covid. You can still catch Covid even if you are vaccinated but there are not good data to show it significantly prevents your development of long Covid.

All right. I thank the Chairman.

I welcome Dr. Lambert. We have met a few times before. I think it was mainly as part of media interviews so it is nice to see him in the flesh.

I want to go through a number of items in his opening statement because it chimes very much with a lot of what we heard in a submission we received from the long Covid support group, which is called Long Covid Ireland. It is made up of patients who have long Covid who are telling their story. Maybe we can have the group before the committee at some point as well. It is important we hear from the patients suffering from long Covid.

In the very early stages of Covid, Dr. Lambert's organisation received a HRB grant and he led a project that established a clinic to provide, as he said, a research plan as well as a clinical care centre. At the start, the project developed a protocol called Anticipate, where 155 patients initially consented. To date, over 1,000 patients have been seen with 80 follow-up patients and 25 or more patients being seen monthly. Dr. Lambert made an important point that was also made in the submission we received from the long Covid support group. Dr. Lambert said it appears the lungs and heart were, in the early stages, the target of damage but the more research he did, the residual damage was actually brain damage. Is that correct? Is it a fair and accurate reflection of where he sees it now?

Dr. John Lambert

Absolutely. I have pictures of a lot of my consultants from the first wave with lungs that were whited out in the ICU, and their lungs healed 100%. I was surprised. I have pictures of cardiac function in some of the consultants and the non-consultant hospital doctors who had low ejection fractions following Delta and within six months it totally resolved. That is really good news but then the bad news is the brain did not heal.

I want to read one paragraph from the support group submission we got. It is important because it chimes with what Dr. Lambert has said. It says:

It’s often the case that LC sufferers are so sick with one primary symptom that we may not have the ability to be able to mention all the other symptoms for months. One member in our support group explained she was so sick with respiratory issues that she couldn’t deal with telling her GP she had horrendous upper body tremors. She eventually had no choice after 8 months of living in hell with many weird symptom’s like suddenly taking a step sideways while she was standing at her kitchen counter, that she attended a Neurologist and has been diagnosed with a brain disorder ... There are thousands of others like her, and you must understand this is NOT a one size fits all scenario.

Is that something Dr. Lambert saw commonly in the thousand or so patients that came through his clinic?

Dr. John Lambert

The interesting thing is early on, patients even with normal chest X-rays and no lung abnormalities and pulmonary function tests continue to have this air hunger or breathing problems. The breathing centre is in the part of the brain that is affected by long Covid. The Deputy will have heard of sleep apnoea, which comes from the brain. The focus is really on the brain. I have talked to a lot of my pulmonary specialists at the Mater and initially every patient with this shortness of breath and symptoms like that was being sent for pulmonary function tests and being put on breathing treatments to support them but they do not have asthma. They have got a centrally-driven kind of air hunger. It is not like asthma at all. An awful lot of patients are out there with these breathing problems and they are not coming from the lungs. Many of the cardiac problems are not coming from the lungs but from the brain, the vagus nerves and the inflammation from the brain is stimulating so we need to get-----

I want to focus on what the solutions are because Dr. Lambert made a number of very strong statements in his submission that I accept and that must be said. He says based on the management of long Covid patients at his clinic that he has accumulated a lot of medical evidence, and he certainly has because he has submitted it to us. He says that in July 2021 he established a long Covid clinic that included a range of specialist care. I am sorry, it was an application to set up such a clinic. He heard nothing further about that submission until March 2022. I want to go through some of what Dr. Lambert said. He said he published the results of his work in medical journals and offered to share his results with the national clinical lead and with the Minister for Health. Dr. Lambert then said he invited the Minister to attend a dissemination event he held in April 2022 and subsequently wrote to the Minister to get an opportunity to present his data. Did the Minister respond?

Dr. John Lambert

Yes. I got a response that said they had a plan and if new evidence comes along, which I presented to them actually, they would take that into consideration.

Dr. Lambert offered to meet the Minister. Did the Minister accept the invitation?

Dr. John Lambert

No, but I got a call last Friday from I think the national clinical lead's office. I asked for this meeting back in April so probably prompted by this presentation today they contacted me and asked to meet me in the next couple of weeks so I could present this information to them.

Dr. Lambert also offered to assist in rewriting the guidelines to reflect the current problems patients are experiencing. Is that an offer that has been taken up?

Dr. John Lambert


No. He also says that-----

Dr. John Lambert

I have a business case here and a plan I have revised from the one I submitted in July 2021. I will be resubmitting it and can share it with members of the committee today.

Dr. Lambert also reviewed the draft long Covid guidelines the HSE has put in place. He says they focus on early post-Covid-19 follow-up with a group of pulmonary specialists, a cadre of dieticians and podiatrists but no mention of psychologists. He said he was surprised the Mater infectious diseases unit was not included as a site for follow-up, despite generating much of the scientific data. Was there interaction with the Minster or the national clinical lead on that issue?

Dr. John Lambert

No. I do not know who to approach about that decision. I was not aware of that decision and I was not a part of it so I cannot really comment on that.

Given that as Dr. Lambert has said, a lot of the focus seems to be on issues relating to the heart and other areas, and not the main issues that he has identified, does he believe that the current model of care that is in place is sufficient?

Dr. John Lambert

No, it is not. As I said, of the 1,000 the patients that I have seen, I would say that probably 20 of them needed pulmonary support in the short term, but 1,000 of them needed neurological support. I am not saying that there is not a need for cardiac and pulmonary physicians in some cases. I am saying that looking at the document, it states that tertiary-level care for neurorehabilitation is going to be part of the plan. That should be prioritised as the number one issue. The other support services are minor issues compared to the need to support-----

I am out of time. I wish to make a final point. I agree with everything Dr. Lambert has said in his opening statement. He has stated that the accumulating evidence is that the lungs and heart are healing but the brain is not healing. That is substantially where the problem is. Even though a lot of clinics are being set up, if they are not dealing with the neurological issues then we are not treating patients in the way that we should. Dr. Lambert has also referenced referral pathways from GPs. There is a huge amount that needs to be done there. The statement that we received from the support group mentioned difficulties in accessing some of the clinics. For example, patients in County Donegal have to go to Galway to access them. If Dr. Lambert has had the opportunity to engage with the clinical lead, does the plan he wants to submit to the Minister include the provision of more clinics, as well as more of a focus on the neurological issues?

Dr. John Lambert

I do not think we need more clinics. Looking at the network that has been established, I think the current clinics need to be repurposed. If there are 5 million people in Ireland and 30% of them are affected by long Covid, it does not matter how many clinics we have at the Mater, St. James's or St. Vincent's hospitals. They cannot all be managed there. Guidance must be issued to the GPs. Right now, the GPs are being faced with these patients and they are putting Band-Aids on the problem. They are doing the best they can but it is quite complicated. They need better guidance to be able to manage the patients locally.

I welcome Dr. Lambert to the meeting and thank him for his submission to the committee, and for the work he is doing in the area. First, I fully accept that we should not be dependent on Dr. Lambert giving us information on what is happening on an international basis in relation to prevalence. Is he aware of any variation in prevalence relating to particular variants? Is he seeing anything of that as of yet, or is it too soon?

Dr. John Lambert

I think it is too soon to say. We have gone through the B.1.1.7, Delta, Omicron, BA.1, BA.2, BA.3 and BA.4 variants. Now BA.5 is the variant that is even more infectious. It is surging again in other countries. There are cases of it in Ireland. I suspect that in a week or two we will see the BA.5 variant as being top of the list in terms of the virus that is responsible for the new surge. The virus is not going to go away. It looks like it is going to cycle three times a year and infect everyone. It will not kill them as it was doing before, but it will still affect them. There is a certain disability associated with it.

Is there any evidence so far of predisposition to long Covid?

Dr. John Lambert

I think there is. It could be that people who have pre-existing autoimmune diseases, immunological conditions or things that have not previously been diagnosed are predisposed to it. Perfectly healthy people can catch long Covid, but there are certain predispositions to it. They have not been well worked out but there is probably some kind of immune predisposition. For example, with Covid, we must ask why it is that some 45-year-olds get a cold and others end up with lungs whited out. It is an immunological response of the body to the Covid infection, both in the acute setting and chronically.

Has it been possible to identify what might predispose people to long Covid?

Dr. John Lambert

Not yet.

On the State response, where was the national clinical lead drawn from? What is their background?

Dr. John Lambert

I was not involved in the recruitment; I have just done some homework on it. I believe that the pulmonary lead from Cork was the lead on the first draft of the interim guidelines, which were published in September 2021. That doctor has now apparently resigned from being national clinical lead. This is just what I have heard from other pulmonary colleagues. The lead in that document dating back to September 2021 was a pulmonary doctor.

What is Dr. Lambert's position on the model of care? We are told that it is an interim model of care. Is there any date set for when it might be reviewed, or is it the only model of care that people are operating to at the moment?

Dr. John Lambert

I am not part of the inner circle. I am not part of decisions that are being made behind closed doors, or wherever they are being made. As I said, I am here on the basis of the fact that I take care of patients. I try to develop best practice and publish the results to influence changes that will help the patients. That is the reason we are here today. I do not disagree that we needed to start somewhere but as I have said, we need to be agile. The virus changes all the time. We have to change as well.

I do not mean to put undue pressure on Dr. Lambert. This is the first time that the committee has dealt with the issue. I suspect it is an issue that we will be dealing with on further occasions. I ask Dr. Lambert to excuse us if he feels we are trying to glean information from him. That may be unfair. On the HSE response to Covid and the decision to locate one post-acute clinic and one long Covid clinic in each hospital group, does it make sense to separate the two approaches to the condition?

Dr. John Lambert

I do not think so. As I said, the Covid virus does not recognise hospital groups, it recognises patients. We need geographically located facilities to serve the patients. Of course, the population is bigger in the Dublin area, but there is a population in Ireland of 5 million people. The facilities should be located based on the prevalence of Covid, not on the presence of hospital groups. I would not have done it in that way.

It strikes me that because Covid is a new condition and everyone is learning about it, it would make more sense to combine the post-acute and long Covid clinics. Would Dr. Lambert agree with that?

Dr. John Lambert

Absolutely. The title of my submission to the committee is the Establishment of a Long Covid Multidisciplinary Clinic and GP Support Network in Ireland. I chose the title because we really should be working together. We have separate clinics for pulmonary and infectious diseases at the Mater Hospital. I tried to get the clinics amalgamated. However, I have dialogue with my colleagues. Pulmonary doctors have actually changed their practices, recognising the fact that many breathing problems that patients are having are centrally-driven, rather than investigating and spending a huge amount of money testing patients for a problem that is not in the lungs.

Dr. Lambert referred to the fact we do not have PET scans in this country.

Dr. John Lambert

I did not say that we do not have PET scans.

We do not have access to them.

Dr. John Lambert

On the resource for using PET scans, it is challenging to get a PET scan done for cancer patients and complex infectious diseases patients. I am not saying that we need PET scans to diagnose long Covid. I am just saying that in research studies conducted around the world, PET scans have shown that there are abnormalities and hypoperfusion defects in the brain of patients with long Covid. The message is that many patients are being sent for CT and MRI scans, and the results are normal. They are being told that there is nothing wrong with them and their scans are normal. We do not have access to the PET scans that are picking up the abnormalities.

Is the lack of access a cost issue?

Dr. John Lambert

It is a cost issue. As I said, until now PET scans have had limited utility. MRI and CT scans performed the functions required in most clinical conditions. It made sense to have limited access to PET scans for clinical use. It is the case that studies have been done internationally using the PET scans to identify the brain inflammation that long Covid patients have.

I do not want to put too much pressure on Dr. Lambert's own experience, but we are trying to learn about this.

Is there any country leading the thinking and the clinical work in this area that we could learn from?

Dr. John Lambert

The patients' groups submitted a document on this and gave me a copy of it. They provided the committee with a list of guidelines for GPs with long Covid patients. Some countries are ahead. I have taken a look at the French documents. France is further ahead in terms of providing rehabilitation for patients with long Covid. The UK was the first country to put together guidelines and a lot of the guidelines from Ireland have been based on the UK model. However, it failed to update them. No country is perfect. France is a model of being ahead of the curve in managing patients with long Covid.

I welcome Dr. Lambert. He addressed the Fianna Fáil Parliamentary Party at the outset of Covid. It was a very stimulating conversation and I have kept pace with what he has been talking about since then. He could to some degree be considered a voice in the wilderness. Maybe that is a pain in the neck for some people but he is a challenging voice all the same. The paper he has presented today is very stimulating. As other Deputies have said, I can see us coming back to that. I will not go over any of the questions that have been asked because Dr. Lambert answered them comprehensively. What is a PET scan?

Dr. John Lambert

Like an MRI scan or a CT scan, it is just a modality. Certain products are injected into the person's veins and then it goes to the brain. If there are abnormalities or inflammation, they will light up. It is a radiological scan that is different from a CT scan and it is different technology from an MRI scan. It is positive electron tomography. It lights up a different level of inflammation compared to a CT or MRI scan.

There is a cross-party parliamentary group meeting today about Lyme disease. Based on the evidence of long Covid's impact on the brain, as taste and things like that are controlled by the brain, would Dr. Lambert be minded to see a connection with a virus with regard to diseases like Lyme disease and myalgic encephalomyelitis, ME?

Dr. John Lambert

I have managed patients with chronic symptoms from Lyme disease for many years. Many of the protocols I have put together for long Covid patients are based on my experience there. Johns Hopkins has done studies using PET scans on patients with persistent symptoms of Lyme disease, called post-treatment Lyme disease syndrome. When PET scans were done on the brains of patients with chronic Lyme disease, the scans lit up the exact same abnormalities. This is a study by Aucott et al in Johns Hopkins University's research centre. There are similarities there and there are some abnormalities being picked up with ME as well. I am not aware of PET scan abnormalities in ME but with long Covid and long Lyme there are many similarities on the PET scan radiographic appearances.

If I am to understand Dr. Lambert, he is being critical about the dissemination of information by the establishment. It is beginning to act now. Do the Department, the Minister, the outgoing CMO or the clinical health leads have similar information at their disposal, arising out of studies similar to the ones Dr. Lambert has carried out in the Mater and including the same kind of cohort of about 1,000 people?

Dr. John Lambert

Is the Deputy asking if I have shared this information?

No. Clearly Dr. Lambert is eager to share his information. I am just wondering if there is any other university or faculty in a university hospital undertaking similar studies with the same significant number of people, around 1,000. If so, have they produced any reports? Is there similar information to that which Dr. Lambert has been providing available to the clinical leads, the CMO and the Minister for Health or is his study unique in the Irish context?

Dr. John Lambert

It is fairly unique. There is only other study I am aware of. We shared some of our data from the long Covid clinic with Paddy Mallon's group in St. Vincent's. We have a list of all our publications here that the Deputy can pick up later. One of the publications listed there is a joint publication coming out of St. Vincent's and the Mater looking at symptoms of long Covid in patients who had persistent symptoms following the onset of Covid. Based on my review of the literature, I believe our group has taken a special interest in this and did most of the work on it. Most of the publications are coming from our cohort.

As regards the Mater ID, what does ID mean in that context?

Dr. John Lambert

Infectious diseases.

It is a surprise that the Mater infectious diseases unit was not included as a site for follow-up. There was no gesture or link to the Mater ID despite the fact, as Dr. Lambert claims, it generated most of the scientific data in Ireland on this subject. Dr. Lambert said he suspects his team is managing more patients with long Covid than any other site in Ireland. Is that factual?

Dr. John Lambert

As a next step, the Deputy should ask the Government the number of patients seen. That would be the accurate way of finding out. I did not want to state that we are managing the most patients but like I said, I suspect we are. I currently run an extra clinic and stay until 6 o'clock on a Friday afternoon. I have two research registrars that I pay for out of my research moneys to help me run the clinic. I was basically told that if I was not being funded to run this clinic to close it down. I thought about doing that but it would not be fair to the patients. The best thing to do is see if I can move this forward proactively and become a part of the solution.

That is the key bit. Dr. Lambert said he suspects there are more patients in Mater ID than any other site in Ireland. Does he have evidence of that? What is that suspicion based on?

Dr. John Lambert

It is based on discussing the matter with colleagues. There is an informal network of people. The reason I said I suspect we are is that we are quite busy. We are getting lots of referrals in and have all along. I was asked by Temple Street a number of months ago to see 20 people who had been out of work for a year and a half, because it did not know where else to send them.

It is not a hostile question. I am just probing it. Clearly, Dr. Lambert is a significant player, so why are the authorities not taking on board his findings? Why does he think they have been so slow? These are pretty significant findings. I have done some minor reading around some of the literature Dr. Lambert sent us, which is fascinating. You would need another life to read it all. Dr. Lambert presents the information really well and I thank him for that. Is there a closed shop when it comes to dealing with Covid? That would be an unhealthy approach, would it not?

Dr. John Lambert

Going back to the very beginning, I have had criticisms of the whole approach to the Covid pandemic.

In March 2020, when I found out there was no infectious disease representation on NPHET, I contacted it and was told that there was medical representation on the NPHET committee and that if it needed infectious disease representation, it would consult those involved in that area. Infectious disease representation was not wanted on the committee. I had this conversation in 2020 and I have text messages and emails about it. I asked who the clinician was and was told it was Dr. Colm Henry. I said that he is a great geriatrician but that this was an infectious disease emergency, not a geriatric emergency, and that an infectious disease specialist was needed on NPHET. Sometimes there is a reluctance on the part of the Government to get the right people or expertise on the right committees.

Dr. Lambert's expertise in infectious diseases goes back to HIV in the 1980s. Is that correct?

Dr. John Lambert


Maybe something might change with the new Chief Medical Officer, CMO. As Deputy Shortall said, I can see us coming back to it. What kind of treatment is taking place in the long-term Covid clinics that have been established? What kinds of treatments would Dr. Lambert like to see where there may be gaps? What kinds of outcomes would he expect from international research? Some members of the public will be watching this now, may watch it later, or may read the transcript, and there will be reports of this meeting. They will be quite anxious to hear that quite a substantial number of patients get long Covid and that there are a range of symptoms, from anxiety to long-term depression to fatigue. What kinds of outcomes could be expected with treatment?

Dr. John Lambert

We published a study on the use of low-dose Naltrexone, LDN, as a treatment. It appears to work on decreasing brain inflammation. There is a number of other medicines that help with long Covid. There are devices that help stimulate the vagus nerve that are used in neurorehabilitation. The National Rehabilitation Centre deals with many people who have head injuries from car accidents and such. There is inflammation in those cases. The therapeutics of many of the lessons learned from managing patients with closed head injuries can be applied to treating patients with long Covid and, indeed, long Lyme disease. We just need to do more research into this and have a think. We can wait five years, until new data come along, or we can be pioneering and take the lead in terms of trying to support patients in Ireland who have this condition and get them back into the workplace.

It has been a fascinating discussion thus far. Most people who will listen in today will say that contracting Covid has changed their lives, because of the legacy of Covid-19 and so forth. That cohort of people, which is large, will want answers about how their lives have changed from contracting Covid and the legacy with regard to chronic fatigue and all of the symptoms that come with long Covid. My first question is on the evolution of the virus. There was a period, from around February 2020 to March 2021, where nobody was vaccinated. Is there a correlation between the period when the vaccine was not readily available and those who contracted Covid-19 and have symptoms of long Covid to this day?

Dr. John Lambert

We know that these vaccines are mRNA vaccines. They do not prevent infection, but they prevent one from progressing to serious acute illness. Vaccines are a good thing. The question is of whether getting a vaccine will prevent one from getting long Covid. The answer is that getting vaccinated has not really decreased the number of patients who are at risk from long Covid. That is not the way these vaccines work. If there is a benefit, it is minimal. The only benefit of vaccines, which is important, is that they keep one from dying if one gets Covid. They do not keep one from getting infected and they do not necessarily keep one from getting long Covid.

My second question, which I know Dr. Lambert has touched on already, is with regard to LDN. It sounds as though the initial evidence is quite good. Will he elaborate on the evidence thus far on the pilot project?

Dr. John Lambert

LDN has been used for many years. There were studies done back in the days of HIV and AIDS, when there was no treatment for them. A placebo-control trial to treat people with LDN or placebo showed that LDN improved the quality of life patients had left. LDN does two things. It seems to decrease inflammation and it also has some immune-modulating effect. That is the second problem, which we have not even discussed, in terms of the problems with long Covid. It is not just the brain inflammation. Patients have some kind of immune damage. They have some kind of immune exhaustion, as part of this process, as well. LDN is focusing both on brain inflammation and an immune-modulatory effect. Based on the pilot that I have done, the next thing to do is some kind of a placebo control trial in a bigger study and then cross people over from treatment to placebo after a few months, to do a definitive study.

The reality is that at present people are just following patients with long Covid and bringing them back every three months. Some of them are just not getting better. My approach is to look at the literature and see what early information there is in terms of what is helping patients with long Covid. We now have this study published. These are preliminary data, but LDN has been used in many other situations before and is a safe product to use. The study that we did showed clinical benefit to patients who had been sick for 333 days, on average. Within two months, they started to show improvement. I think it is out there that this is something about which we should start thinking, rather than just continuing to follow patients every three months, draw research bloods on them and tell them to come back in three months. We have to start some interventions or start piloting some interventions to support our patients in Ireland.

There are other neurological conditions that have the same symptoms to those experienced by people who are suffering from long Covid. Has Dr. Lambert witnessed any parallel between other conditions and long Covid in his professional career?

Dr. John Lambert

I mentioned this before when asked this question. I see patients who get a tick-borne infection and are unwell with it years later. I see farmers, forestry workers and people from all over Ireland who get bitten by a tick, get a short course of antibiotics and come to see me two years later with many of the same symptoms in illnesses. There are other conditions. The whole issue that is being brought up now is that there is a big population in Ireland of patients with fibromyalgia and chronic fatigue syndrome, ME. I hypothesise that some kind of infection might have triggered this condition years ago that we have yet to identify. Lyme disease is one of them. There are other tick-borne infections and now we have long Covid. No money goes into Lyme research. I hope the money that goes into long Covid research will benefit patients with chronic fatigue syndrome, ME, fibromyalgia and Lyme disease.

My final question, on a more positive note, is on recovery. Obviously, everybody is different. My question may not be completely scientific, but what percentage of people have made a complete recovery from their symptoms of long Covid and are back to what they were prior to having contracted Covid-19?

What does recovery look like and what is the rate of recovery among the patients Dr. Lambert has seen?

Dr. John Lambert

I cannot give the Deputy those data because this is new and we are still in the process of analysing it. One of my doctoral students, Dr. Brendan O'Kelly, who is in UCD's Newman fellowship and studying long Covid, took the lead in many of these publications. We are in the process of studying 155 patients from a year ago. We will do a follow-up evaluation to see what percentage of those 155 are back to normal and what percentage are still sick. We will do repeat questionnaires with them.

The good news is that, while the rate is 30% after one year, it is less at 15 months and less again at 18 months, but there is still a population of patients who do not get better or they sort of get better and try to return to the workplace only to crash again, with a relapse of all their symptoms. Covid-19 is a scary virus - it damages the brain and the immune system. It is not just the common cold virus. I continue to wear my mask. I do not want to catch Covid myself. I do not want to be out of work. I continue encouraging people to take this virus seriously. We are still learning about it and it is not going away.

I thank Dr. Lambert.

I thank Dr. Lambert for attending and for the phenomenal work he has done and is doing. I know someone whose son had Lyme disease and Dr. Lambert was a godsend. They had no clue what was going on until they found Dr. Lambert.

I apologise, as I missed some of Dr. Lambert's presentation, so forgive me if I am repeating questions. How many people have been impacted by long Covid? Has he data to give him an understanding of that number?

Dr. John Lambert

I have no idea. I have been on Twitter saying that we should not keep announcing hospital and ICU admissions, but the percentage of patients with long Covid. According to the publications that we have put together, approximately one third of patients still have significant symptoms after one year. The number who cannot return to work with those symptoms is much less, but 1% to 5% of people are still disabled with long Covid after one year to the point that they are not able to function as they did prior to contracting the infection. Probably everyone in Ireland has got Covid, with some having got it twice. That is 5 million people. Even if only 1% of those are at risk of getting long Covid, it is a large population of people who are being disabled by this virus.

Could it last longer than a year? Dr. Lambert is saying that long Covid is bad for a year, but does it get better or does it last for longer than a year?

Dr. John Lambert

I have patients in my clinic who were infected in March 2020, so there are some patients who, two years or more later, are not better. The research will tell us what the trajectory is. Fewer people are sick at six months and fewer still are sick at 12 months, but some just do not recover without an intervention. The challenge is to determine what the best intervention is, and that is what we are learning.

Can the brain inflammation that Dr. Lambert mentioned be seen physically? Is it worse in some people and better in others?

Dr. John Lambert

We do not really know. We can tell clinically that the signs and symptoms are coming from the brain. We hear about anosmia and the loss of taste. Two years later, one of my colleagues still cannot taste or smell anything and does not drink Guinness because it used to taste good but now tastes like a septic tank. Some people have been impacted in that way, but it is not just those nerves that are affected. All of the nerves are. I have people coming in with hoarseness, repeated coughing and swallowing problems in what is almost a stroke-type syndrome that persists for months. Some patients recover and some do not.

Research studies in other countries have examined brains using PET scans, which have shown abnormalities – hypometabolism, lack of blood flow to areas of the brain that control the respiratory and pain centres, the vagus nerve, which controls blood pressure, heart rate and thermal regulation, tachycardia and bradycardia. These are the symptoms with which patients with long Covid are presenting.

It is fantastic that Dr. Lambert is so aware of all of that. He is doing vital work. If he had the resources or funding or even a magic wand, what would he do about this issue? How could people benefit if he had the resources?

Dr. John Lambert

I submitted a proposal last summer about focusing on neurology and neuro-rehabilitation specialists. Those are the people with the most experience in brain injuries, which are the residual problems that most of these patients have. Under the current plan, neurology is almost a tertiary-level problem while the first-level problems are pulmonary and cardiac, which are short term. I only have a dozen people out of a thousand with heart and lung problems, yet a great deal of research has been done on those. We must move the resources around. My ideal programme would entail a neuro-rehabilitation specialist and a neurologist working in a multidisciplinary clinic with pulmonary doctors and infectious disease doctors and, given that it is a significant problem, a range of psychologists to provide support. Psychology is under-resourced under the current plan.

If 30,000 people have long Covid, not all of them can come to these centres. We need to set up a network of GPs with a special interest in long Covid who can be trained and given a partnership with centres to be able to manage patients locally. Currently, patients are going to GPs and GPs are doing their best, but patients are just being put on heart medicines, brain medicines, migraine medicines, psychiatric medicines, pain medicines or nerve medicines. I am seeing them coming to my clinic. We need to give GPs guidance.

My ideal model would be a central neuro-rehabilitation clinic that supports the more complicated patients and is able to treat them based on what we know about brain injury. We would also develop a network of GPs who can manage patients locally and call a friend or refer patients to the clinic when necessary.

I thank Dr. Lambert for all the work he is doing. It is appreciated.

Next will be Deputy Burke, followed by Senator Hoey.

I thank Dr. Lambert for his presentation and for the work that he is doing. In that respect, has he been involved with the National Association of General Practitioners and made a presentation to it at any stage? GPs are the people on the front line and the ones encountering this complex problem. Has there been a briefing session with GPs on this complex issue?

Dr. John Lambert

They were all invited to come to the dissemination event that we had in April. My partner in this HRB grant was Professor Walter Cullen. He has developed a network of GPs in our region, which is the Mater or north Dublin region. One will see that many of the publications that have been part of our project have come from Professor Cullen and the GP group. There are three or four publications put together.

The Irish College of General Practitioners does online meetings on a regular basis. I understand that up to 2,000 GPs connect in for those presentations. Has Dr. Lambert had that opportunity and would it be worth approaching them to get an opportunity to do a presentation to them? They are the people who are very much on the front line in dealing with the complexities of this.

Dr. John Lambert

I agree. I am happy to personally organise a meeting with the GPs but the bigger picture is that there needs to be an organic organigram and a structure from the HSE and from the Department of Health on down to provide support to the GP to manage these patients. I am happy to do that other-----

With regard to the connectivity outside of Dublin, clinics are being run in Galway, Cork or Limerick. Is there an overall connectivity between the various people who are on the front line? I am referring to the medical consultants such as Dr. Lambert. Has there been any overall review between all of the clinics in identifying a common issue that is arising and how they deal with that? Has this occurred?

Dr. John Lambert

No. I have not been a part of any of the decision making or the organisation or the putting together of guidelines for long Covid.

When making plans in relation to a particular problem it is good to be able to see what is happening in Cork, Limerick or Dublin, for example. Has there been any kind of connection with those centres around what they are doing in the context of learning from one another?

Dr. John Lambert

In my opening statement I said that March was when I was first aware of any kind of national guidelines, let alone that there was a committee on long Covid. In those guidelines they basically said there were to be three infectious disease long Covid clinics. In Dublin they would be at Beaumont, St. Vincent's and St. James' hospitals. Subsequently, when I looked at additional guidelines it said they were going to start up long Covid clinics in Galway, in Cork and in one other location in April 2022. This is from looking at what was on the HSE website. I am not even aware that these clinics have been opened up and are functioning.

There is new research out in Ontario, Canada in the past week. This interesting research has now identified what appears to be a problem for people with long Covid. When a person breathes in he or she is taking in oxygen and normally this transfers to the red blood cells. The research has identified that this process is not happening to the same degree as in the case of a person who has not had Covid or does not have any other medical condition. If that research is correct, does this lack of oxygen going into the system tie in with the problem identified by Dr. Lambert that people are having with the brain?

Dr. John Lambert

I have seen those data. There are always different theories about what is going on. I have never said that people with long Covid do not have heart problems or that people with long Covid do not have pulmonary problems. My original thought was that we were going to see lots of pulmonary fibrosis, lots of chronic obstructive pulmonary disease and lots of permanent lung damage from long Covid. We are not seeing that. There seems to be a minor issue-----

I am not a medical expert so I am very much at sea with the transfer of oxygen, but my reading of the research is that as a result of the lack of oxygen going into the system in the body, this causes a lot of the knock-on effects on people, including the fatigue. Dr. Lambert has focused very much on the neurological side. If there is a scenario of a lower intake of oxygen than normal, does this have a neurological effect and could that be tied into what Dr. Lambert is finding?

Dr. John Lambert

No. It does not make sense medically or patho-physiologically that this would be a significant problem. I agree that in some cases there is lung damage and in some cases there is-----

The research is not suggesting there is lung damage. They say there is a difficulty with the oxygen transferring into the red blood cells. This is how I understand it and I may be incorrect in my interpretation. I understand this is then having a detrimental effect on people. They seem to be saying that this is an issue that needs to be looked at - if the oxygen is not transferring in, how do we reverse that process so we can bring people back to taking in the normal amount of oxygen when they breathe in and out?

Dr. John Lambert

It is an interesting theory. My opinion, based on taking care of 1,000 patients, is that this seems to be a minor problem. We check their oxygen every time they come to the clinic. I have not seen hypoxia to be a significant part of the thousands of patients with long Covid.

With regard to the clinic in Dublin, Dr. Lambert has said he is seeing 1,000 patients and doing what he believes is the best way of dealing with it. Would it be in everyone's interest to look at other jurisdictions and try to tie in all of the best information in order to get the best treatment plan for every patient who has long Covid? This is why I asked Dr. Lambert about the GP issue. They seem to be confused, at this stage, about how to manage their patients, how to refer them and which is the appropriate clinic to which to refer patients. Would we all be better off if the people who are heading up the existing clinics could all co-ordinate and work on setting out the best way forward? It would put everyone, including Dr. Lambert, in a stronger position.

Dr. John Lambert

Let us go back. Covid started in March 2020. We are now in July 2022. Lots of data have become available during this time period. A lot of countries have taken these data on board and provided a service that really meets the needs of the people. I believe that the patient group submitted a position paper on their issues. They included those countries that have GP guidelines on how to manage long Covid, including France, Spain, Ontario in Canada, Wales and the UK. These countries have guidelines for the GP management of long Covid patients. Many countries are ahead of the curve in managing long Covid. I am not here today to say "This is the way it should be". My suggestion during last July and August was that we really must put the brain at the forefront of the management of long Covid.

Dr. Lambert referred to the countries he believes are ahead on this. Which countries does Dr. Lambert believe we should be looking at more carefully?

Dr. John Lambert

The only one I have looked at in detail is some of the French guidelines. My job has not been to investigate best practice throughout the world. My job has really been to manage patients, try to put together treatments to manage the patient I am seeing, and try to publish Irish data. This is the reason I am here today.

Are there are data from the UK, Canada or the United States of America that we could learn from?

Dr. John Lambert

I do not know about Canada because I have not done a survey. I am too busy taking care of patients every day in the hospital, among other things. Perhaps the committee could commission somebody to take a look this. I do, however, go over to the UK and I have seen patients with long Covid over in the UK because I am Scotland-based as well as Dublin-based. While the UK was good in putting together long Covid clinics early, they are based on the pulmonary and heart model. I do not believe they have caught up as far as that goes. If the Deputy was to ask, I would say that France is the better model at this time.

Ireland could be the best model if we take on board what we put together, are agile and make the changes we are supposed to based on new science. We need greater GP involvement, more support for the psychiatric and psychological issues of patients and more support of neuropsychiatric issues. In January 2021 it was first identified that the brain was really the focus. Every week I learn more and more about the brain as published in the international medical literature. We need to move some of our resources around and provide guidelines to support GPs to be able to manage these patients.

I thank Dr. Lambert for his presentation. The additional information has been very useful. People regularly contact us about long Covid. People explain their symptoms and sometimes feel that they are not being believed and that it is in their head. It is great to have this session today.

I am interested in how long Covid relates to workplace issues and how we might manage that. Some workers were working on the front line during the pandemic. Organisations such as the INMO have questioned whether it needs to be a workplace injury and dealt with under an occupational injury scheme. At one point in the earlier days, nurses made up nearly one in ten of people contracting Covid. With what we currently know about long Covid, how should we manage people in employment? Some organisations are considering having long Covid policies. Some advocacy groups have pointed out that people will be out of work for longer than expected and that supports, such as employment and income rights, and guarantee of medical care need to be made available. What approach should we take to employees with long Covid in the workplace? What supports need to be made available for that?

Dr. John Lambert

My only involvement is that I get requests for disability letters, to extend the term of disability or to send letters to occupational health doctors. As I said, 20 staff members from Temple Street were referred by occupational health a number of months ago because they did not know what else to do. They were seeing them but they were not getting better. My understanding is that the UK decided to provide people with disabilities with support if they had occupationally acquired long Covid. I heard recently that the benefits for long Covid patients would be taken away in Ireland. I do not know if that is true or not. I do not get involved in that.

It is like asking how long a piece of string is. How long will long Covid go on? None of us really knows. Some patients are not recovering. It is a real medical condition. I get asked to fill out forms from patients who are not healthcare workers, from some of the insurance companies asking to justify them continuing to be off on sick leave. It would be a good idea for us in Ireland to identify certain criteria for long Covid - because it overlaps with other conditions - to be identified as a condition worthy of patients getting benefits until they recover if they ever recover which is the challenge. Most people do. I do not want to be disheartening to people by suggesting they will not recover. It is almost two and a half years since March 2020 and I am still seeing people who have not recovered. Not everybody has responded to the treatments I have given. It is a moving target to know how long long Covid will continue.

We need to support the patients because the patients I see are patients who have never missed a day of work and are not malingerers. They cannot be mindful and get themselves better. They cannot do grade exercises and get themselves better because they crash. It does not work. This is a different disease from any we have seen before. It has similarities to other chronic conditions we have seen previously. It is a new disease and we are continuing to learn. We need to support the patients in whatever way we can by providing medical services and providing assurances that their livelihoods will not be taken away as a result of contracting life Covid.

Dr. Lambert mentioned that people had contacted him with requests for it to be defined as a disability. Should that be considered? People contract long Covid either because they were on the front line or otherwise. Does Dr. Lambert believe it could be defined as a disability or will it be kept in a separate categorisation?

Dr. John Lambert

I really do not know. As I am a medical doctor, I do not get involved in those decisions. I am always hopeful that my patients will improve. Usually if people are pushed back into the workforce they crash and they are back to square one. I always say if patients are improving, they really need six months of rehabilitation. I keep on extending patients' time by six months. In those six months some of them are ready to go back to work, which is really good news, but some of them are not. It should not be a permanent condition because, as I said, it is an unknown entity.

I have some questions following up on what Dr. Lambert said. Is he regularly asked to provide certification for people being out of work as a result of long Covid?

Dr. John Lambert

I send letters to GPs and to occupational health doctors. I sometimes receive letters from insurance companies to write a medical report justifying them providing access to ongoing disability benefits.

Clearly that will now come into sharp focus with the Government decision to end income supports to people who are out on long-term sickness. Approximately how many of the patients Dr. Lambert is seeing are healthcare workers as opposed to other workers?

Dr. John Lambert

Initially it was quite a few but as it goes along it is less. I would say about 10% are healthcare workers with 90% being others who have been either followed up with me in the Mater hospital or in the community referred in by GPs.

I am aware that some long Covid cases have been taken against the State. Has Dr. Lambert had any involvement or been asked to provide any supporting evidence?

Dr. John Lambert

I may have been asked, but I refused to do that because that is not my intent.

Dr. Lambert has spoken about the need for six months' neurorehabilitation for somebody who has been out of work long term. What is the access to that like for insured patients and more specifically for public patients?

Dr. John Lambert

I think it is quite poor. Many services were under-resourced before the arrival of Covid. Psychology and psychiatric services are an example and the same is true of community physiotherapy. Access for patients is quite limited. Patients are spending a lot of their own money. They are going to clinics here, there and everywhere desperately trying to get help. It is a challenge for patients with long Covid and it is even more of a challenge for those who cannot afford to access private care.

Are all the clinics open to public patients? The Government is talking about one in each hospital group. Are they all public clinics?

Dr. John Lambert

To my understanding, yes. As I said, I have not been involved in that network.

I appreciate that.

I have some questions. The scary thing is that we all know someone who has long Covid.

Yesterday, I spoke to a person whose symptom was really bad migraines. The advice is to take more exercise but a woman told me that if she does extra ironing or anything like that, she is exhausted for about three days afterwards. If a person with long Covid attends a special occasion such as a child's birthday party, he or she pays for it afterwards. Is that a common pattern among people in that situation?

Dr. John Lambert

Eight years ago, the UK National Institute for Health and Care Excellence, NICE, guidelines recommended graded exercise for chronic fatigue syndrome. That was based on a particular study but, two years ago, the NICE guidelines debunked that study. The NICE stated that it is a bad study and not to follow that advice because if those patients do graded exercise, they crash. I always tell people that it is three steps forward and four steps back. Half of the patients I see coming in have been told by GPs, occupational health or others to do graded exercise. I send letters to those medical practitioners to ask them to look at the guidelines and update themselves on the treatment of chronic fatigue syndrome as the treatment they are recommending does not work. This is another issue. It has less to do with brain neuroinflammation. When people with these conditions push themselves, they get an almost immunological crash. They just crash. We do not know whether it is mitochondrial or immunological. We are focusing today on neuroinflammation but there are other conditions that are caused by Covid. Graded exercise does not work in such cases and should not be used. We need physiotherapists and neurophysiotherapists to send the message for people to build up their immune system and be able to listen to their body so that they do not push themselves to the point of collapse, which is what is currently happening with many of the long Covid patients.

The other frustrating thing for people in that situation is the idea that, as there are no visible symptoms of their illness, the implication is that it is imaginary. People have touched on that. Dr. Lambert referred to PET scans. I have had a PET scan and know the format of it. If there is technology that can prove a person has a particular illness, that would be a significant psychological boost for him or her. It would dispel the doubt in respect of whether they suffer from the illness.

Part of the challenge at the moment is that, as far as I am aware, there is no medical term for long Covid. It is called different things in different countries. Its generic name is long Covid but there is no agreement on what that exactly means.

Dr. John Lambert

I agree with the Chairman. One cannot do a PET scan on everybody with long Covid but if a well researched list of symptoms, such as contact with Covid, symptoms following the onset of Covid and a list of various symptoms, was established, that would be of benefit. It would be useful to have a definition. Some people call it long-haul Covid. Some places say that if a patient has had if for more than one month, it is long Covid. The standard is that if it persists for more than three months, it is long Covid.

Part of the challenge is that we are being told that society has moved on in terms of Covid. Dr. Lambert mentioned mask-wearing. A lot of the measures that were introduced seem to have been put aside. Does part of the challenge involve the need for society to face up to the fact that Covid is going to be here for the long term? Dr. Lambert mentioned the different variants, such as Omicron and its subvariants. Clearly, it is getting better at evading our immune defences. As Dr. Lambert stated, the vaccines do not stop the virus but they may save people's lives.

I know a person who has had Covid three times. Is it possible to keep getting reinfected with Covid? Is one of the dangers that the vaccine does not stop the virus and a person can keep getting infected? Is it the case that every time a person gets the virus, it attacks the immune system and the immune system keeps going down? Is the real worry that as we, as a society and the world, move on in future, all these different subvariants are getting better at evading things? Unless we come up with solutions to these variants or suppress them, we are going to be facing a very bleak future.

Dr. John Lambert

Coronavirus was first discovered in 1976 by a colleague of mine, Ken McIntosh, in America. Studies that have been done on the common cold virus, a coronavirus, indicate that people can catch three infections in one year. The antibodies a person gets from a first infection do not protect him or her from a second or third infection. This is not new information. This virus is smarter than the original coronaviruses. I do not think it will go away.

As regards the Chairman's comments in respect of it affecting the immune system, that is real. When possible, I look at the lymphocytes or white cells of patients with long Covid. Many of them have low lymphocytes. If a person has the flu, his or her lymphocytes go low but when the person recovers from the flu, a week later the level is back to normal. With some long Covid patients, however, my observation is that patients are taking an immune hit. This needs to be published. They are taking a hit on the brain and a hit on the immune system, even if it was just a mild Covid infection of the type that most people seem to be getting now. People are not wearing masks; they are taking a chance and saying it is just the flu. I disagree. It is not the flu. We should get the message out that people need to continue to be careful about catching it because the consequences of catching it are unknown. Anecdotally, I have patients who appear to be immunocompromised as a function of getting long Covid. I have given the committee the data on brain inflammation. Will that be permanent? We do not know.

To simplify it, past infection dampens the immune system rather than strengthening it.

Dr. John Lambert

In some cases, it does.

Is that the pattern Dr. Lambert is seeing emerging?

Dr. John Lambert

Everybody is different but, yes, there is an element of immunosuppression that goes along with patients catching repeated episodes of Covid. It may be that certain patients are predisposed to having these kinds of problems. Another issue is that one's immune system goes down and one gets reactivation of other infections. Everybody has infections in their body. Lots of patients get shingles after getting Covid. Why do they suddenly get shingles? Shingles appears in the setting of immune suppression. My brother got Covid in January in America and he broke out in a painful rash on three parts of his body. He sent me a picture of it and I told him he had shingles. He thought it was his eczema. Mulitdermatomal shingles only occurs in patients who have really low immune systems, such as cancer, transplant or AIDS patients. We have a lot to learn about Covid and the public should be aware that for some patients, it is not just a simple flu virus.

People are repeating a dangerous message that they got a mild version of it. If a person gets Covid in summer, that does not stop him or her getting it again in autumn.

Dr. John Lambert

And again in winter.

If the person's immune system is down from the earlier infection, it is likely the second infection will have a worse impact.

Dr. John Lambert

I think that is the case. That is a good message.

If we are looking for a positive message for people who are trying to prevent Covid by wearing a mask or taking vitamin D, a subject on which the committee compiled a report, or ensuring air circulation in rooms, which we have not been good at doing in Ireland although there was an attempt in that regard in schools, it is that they need to focus on their immune system to try to prevent that-----

Dr. John Lambert

I agree 100%. Part of my protocol involves providing immune support as well as the anti-inflammatory support for the brain that LDN is providing. The brain is not the only component, although it is the aspect we are mainly discussing today.

This is why there needs to be a multidisciplinary effort to support patients with long Covid.

Regarding brain fog, again, it would not be unusual for people who have had a long illness to get what is colloquially described as "brain fog". At one time people talked about how it was perhaps linked to anaesthetic or whatever else or the illness itself. Brain fog is not unusual for long-term illness, is it?

Dr. John Lambert

It depends upon the illness. Like the Chair said, if one gets the flu, one can be very critically unwell. However, two months later, almost everybody is recovered. Very few people have persistent symptoms. There are analogies. After getting chemotherapy, some people have what is called “chemo brain”. It has done some damage and they have persistent central nervous system, CNS, symptoms including brain fog in the long term. There are analogies with other disease areas. Lyme disease patients can have persistent symptoms years and years after they have been treated. The issue is that we know it is causing this, but how do we reverse it? That is the challenge. Patients do not want to stay sick for the rest of their lives.

The argument made by those who are in this system is that they do not want to be going to see a neurologist in one hospital and going to someone else for something else. It is important to have a centralised structure - that one-stop shop element, or whatever - where all the elements to treat an illness are in one particular area. How important does Dr. Lambert consider that to be? I know he is very keen for the GPs to have a role in this because not everyone can be brought into the two, three or four clinics that we will be establishing around the country.

Dr. John Lambert

I think that is it. These infections affect many different organ systems. The issue is that I have letters of referral in for health care workers, for example, who have gone to cardiologists, neurologists, pulmonologists and gastroenterologists because all of their different organs have been affected. They all have a solution that is putting a band-aid on that part of their body, but that is not the issue. The issue is that we need to bring it all together. The patients are not benefiting from shopping from one place to another and it is hugely expensive. It is expensive if the State is paying for all these tests. I can give the Chair reports of patients who have had probably €3,000 worth of tests done and no findings. Patients are sometimes paying for those tests out of pocket and sometimes they have been paid for by the Government. We need to relook at our strategy going forward. Things have changed since March 2020 when Covid came along. We knew much in March 2021 about the effects on the brain. Here we are in 2022 and we have to put together a new plan based on this new evidence, regroup and better engage the GPs and give them guidance on how to manage these patients.

Patients psych themselves up to go to the hospital. It may knock them back for two or three days due to the journey, the time waiting, the time being seen and the time getting back. Again, that is pattern that people are telling me about. That is the big challenge they have. The fact that no one is coming up with a solution that seems to be easing or resolving their symptoms is hugely frustrating as well.

I call Deputy Cathal Crowe and apologise for delaying him.

No problem. I apologise as I was in a meeting of the Oireachtas transport committee. Many meetings run parallel here. I read Dr. Lambert’s opening statement and I have been following some of the debate from my office upstairs.

I have a few questions. Some of Dr. Lambert’s counterparts, for example, The Ohio State University, used baseline information that they had on elite athletes. Unlike most of the population, they are, probably on a weekly basis, checked for lung and heart capacity and regularly give blood samples. They are very healthy people in general with a load of baseline information that can be looked at. In particular – this was picked up in some of the Irish papers last year – they looked at 26 university level athletes, all elite, who had Covid, but four of them came out of Covid with myocarditis, inflammation of the heart, scarring of the lungs and damage that will probably or possibly remain with them for a long time. In Ireland, in the past decade or two, we have also built up a kind of a capacity of screening our elite athletes. Has any analysis been done of them in terms of knowing where their baseline health was at and where they are at coming out of Covid perhaps?

Dr. John Lambert

No, I have not seen any data to that effect. However, as I mentioned in my opening statement, I took care of all of the first cases of Covid at the Mater hospital, because they all went to the Mater originally. Many of my consultants had what looked like very serious lung and heart damage and even abnormalities in the brain. Everything healed in the heart and lungs. I had non-consultant hospital doctors, NCHDs, referred up from Cork with ejection fractions of 40%, which is bad. It means heart failure. People aged around 65 or 70 have that. However, within two months, it went back to normal. Most of the pulmonary findings show that those abnormalities healed with time. I was totally off base in March 2020 thinking that the focus would be the heart and lungs. I am not saying that some patients do not still have heart and lung problems. However, that number is very small. We still need to kind of continue to follow these patients longitudinally to see what will happen long term.

When we first started seeing Covid before it arrived on our shores, we were watching with horror at night-time footage of Bergamo hospital that showed young people lying on corridor floors, gulping for air. I think the first real insight we had behind the scenes in Ireland was an “RTÉ Investigates” special that went in behind the hospital scenes in Ireland and we could see the huge strain and stress on the front-line healthcare professionals. That gulping for air image will haunt many of us for a long time. Is that still a feature of the new variants? Is long Covid less often an outcome of these new variants? Are those we would classify as having long Covid mostly from the first iterations from the virus?

Dr. John Lambert

No. We have seen strains of the virus from the original UK strain, the South African strain, which is Delta, to Omicron. Omicron seems to be less virulent, as opposed to the first wave. They are-----

In terms of viral longevity, there is no great difference, is there?

Dr. John Lambert

There is no difference in terms of whether one is more likely to get long Covid form Delta versus Omicron.

My next question almost seems contradictory because Dr. Lambert is here talking about long Covid. Has he seen anyone recover to a high level from long Covid? I know the whole idea is that this remains and lingers. However, surely some people have had a pretty good recovery pathway months and months after carrying this long Covid virus.

Dr. John Lambert

Absolutely. That is kind of the message. Our data showed that in our clinic, of patients who were followed up with, 30% still had significant symptoms at one year. However, with time, they improved. The percentage of people who have severe symptoms, such as not being able to get out of bed, concentrate, focus or go to work, is a small number and it drops with time. Still, I have some patients in my long Covid clinic who were infected in March and April of 2020 and they are still incapacitated. They are showing some improvements, but not to the point they can return to usual activities. This is a new virus that we are still learning about. We need longitudinal studies, but we also need to find ways to support patients to speed up their recovery.

The general advice we have all been hearing over the past two years is that in seven to ten days one should be coming out of this pretty well and that is the recovery point. That is where most of those who get Covid find themselves. I had it in March and, sure enough, on day nine or ten, my antigen tests were becoming negative, my energy levels were up and I was able to get back to some bit of normality.

Dr. Lambert may not have the answer to my question about those in the minority situation with long Covid. They are believed by everyone in the medical body and profession. However, more importantly, are they fully believed by their employers and screening bodies such as Medmark that employers would refer them to? Is that an issue for some of these people?

Dr. John Lambert

I think it is. I can just give the Deputy anecdotal comments from patients who have come to see me.

In my experience, the occupational health departments in the hospitals have been more supportive. These are patients who were infected in the workplace. I send letters to the occupational health doctors in the hospitals when they refer patients to me. If people are infected in the community and have private insurance, they will get different benefits and there are different pressures from their employers to get them back to work. There may be less occupational health support in some of the private networks and hospitals for these patients because some of them have not got better two years into their long Covid.

I thank Dr. Lambert for his engagement today. It is midsummer. We are looking into the autumn and more iterations and further Covid waves. As a country, are we sufficiently prepared for the autumn and winter months? Have we, as a nation, let down our guard at this stage?

Dr. John Lambert

We have let our guard down in the sense that a few months ago we went from discussing lockdown and mass vaccination of the whole country to all of a sudden ending lockdown and going back to normal life. People just quit using masks. We went too quickly to that. It will be very difficult to get people to go back to using masks again. I continue to use a mask, but I seem to be one out of 100 in the airport and one out of ten on public transportation doing that. The message is that Covid is not going to go away. It may not kill a person anymore, which is good, but I have so many people out of work, and that has an impact on people's jobs and employers. It has an impact on healthcare workers. We have had to cut back on many of our services in the hospital because some of our staff continue to catch Covid despite the fact that they wear masks at work. They are catching it in the community. Covid is not going to go away. I do not want to catch Covid. I do not want to be off work and I do not want to infect my family. As a result, in certain situations I continue to use a mask. That is just common sense. We should be pushing that with the Irish public because we are going to see another wave and another one. We need to find some way besides vaccines to get on with life safely.

Dr. Lambert's estimation of one in 100 is about right. I was on the train up from Limerick this morning and that is what I saw in shops, on public transport and so on. The worry we all have is that if we end up in a particularly serious situation again in the winter, how to flip that on its head again in order to ensure public buy-in. I do not know if we will ever get that buy-in again. Most people have been through this and do not want to go through it again. I am not talking about the virus but about the social response. We had everyone on board in March and April of 2020 but it is the opposite now. I thank Dr. Lambert for everything he is doing. I apologise again for being late to the meeting.

Some of those who have had long Covid and recovered are afraid to get the vaccine in case it triggers the long Covid again. Others are terrified that if they get Covid again, they will be back in that cycle. Is that the pattern Dr. Lambert has seen emerge with many of those patients, or do patients recover and move on? Is there any evidence on that?

Dr. John Lambert

I am a fan of vaccines because my interest and background is in vaccine science. However, taking a vaccine every three to four months for the rest of your life is not a sustainable strategy. There are new vaccines coming along that are not mRNA vaccines but protein vaccines, similar to the flu vaccine that people get once a year. Technology is developing. I would push for populations that are severely immunocompromised, people who would die if they got Covid, to continue to get the mRNA vaccines. For the rest of the population we need to look a new solution, namely, better quality and new generation vaccines. Vaccines are important but they do not prevent people catching infection. We need to get back to face masks and prevention through the other mitigation strategies we are tired of hearing about for the last two years. We are in a new place. We need to find a way to live safely with Covid. I will not comment on whether vaccines are dangerous. Vaccines are important but some people have adverse reactions, so it is a balancing act.

If there is one message to take from today, it is that we need a plan to educate our public and employers on the condition itself.

Dr. John Lambert

Yes, I think so.

I thank Dr. Lambert. That was a useful session. We wanted to bring him in to talk about the science but the committee members are keen to follow up on this issue. We may bring in witnesses from the HSE and look at the Government response. At some stage, we will also bring in patients and their advocates and hopefully get a greater sense of the challenge facing us into the future. I appreciate Dr. Lambert coming in and I thank him for the comprehensive discussion with the committee today.

The joint committee adjourned at 11.26 a.m. until 9.30 a.m. on Wednesday, 13 July 2022.