A copy of this email about me came into my hands when I found it included by Dr                    with a referral letter to Dr              in the medical evaluation unit in              Hospital.

 

This response is addressed to the doctors I have been seen by in recent months and it is my attempt to clarify how despite the best of intentions of the doctors they have almost completely not addressed what is the matter with my health. This situation is somewhat of a norm when the health issue is long covid, but it is nevertheless unbelievably distressing for those who have this health issue and I hope that this communication might go some way towards a course correction for the way Irish medicine attempts to deal with long covid. It is clear that the fact that doctors do not respond adequately to long covid and to other fatigue syndromes is not just an Irish problem, but is characteristic of Western medicine worldwide. This article, https://www.theguardian.com/society/2022/oct/13/long-covid-patients-not-believed-doctors demonstrates that even when doctors themselves get long covid they are gaslit by their colleagues. Gaslighting is not intentional but happens because of ignorance and the absence of capacity to think out of the box, which is otherwise known as practising evidence based or 'scientific' medicine. Nevertheless a great many people who are seriously ill suffer a great deal because of the incapacity of medicine to deal humanly with their illnesses.

 

There is no known cure for long covid yet although, there are some promising possibilities being researched, such as https://www.berlincures.com/en/ .

 

There are certainly now available good understandings of what long covid is. The problem is at its most acute when doctors attempt symptom management without any understanding of long covid, and do harm to patients by applying treatments which although effective in normal circumstances, in the context of long covid do harm to a patient's mental and physical health.

 

To:-

Dr , GP, 

Dr  Psychiatrist, 

Dr  and staff,Consultant Psychiatrist, 

, Consultant Psychiatrist, 

Dr , Geriatric Consultant, 

Dr , GP, 

 

 

The email.

 

17th June, 2022

 

Private and Confidential:

Dr ,

 

 

 

County Cork

 

 

 

Re:                                            , Co. Cork

Date of birth:

MRN: 

Diagnosis: Hypochondrical Delusions consistent with persistent delusional disorder

Somatization Disorder

Psychotropic Medication:

0 Nil (He tried several and could not tolerate)

 

 

Dear Dr.                 .

 

Thank you for referring this pleasant gentleman who I assessed via a phone call on 9" June,

2022. We had discussed the case earlier in the day and you had mentioned that       had

previously been to St. John of God‘s — that he had overwhelming anxiety; that he believed he was

suffering from long Covid and that this would ultimately lead to his physical deterioration and

death. He wanted to be referred to a palliative care team as he believed he was dying. He also had

many strange health beliefs such as naturopathic medicine. He also has H. pylori infection which

he refuses to treat because he says he cannot tolerate PPI's. He uses Diazepam occasionally and

has been tried on SSRl‘s and MAO inhibitors and he could not tolerate either of those. He is very

anxious about medication generally and does not tolerate medication and he reports physical

side-effects because of it. He has a fixed belief that any medication he takes will kill him. l

offered        an assessment on the day but he was unable to travel and so l conducted an

assessment via telephone call.           reported, “I don't really want to see a Psychiatrist. l don't

have any psychiatric issues, but I have a lot of anxiety about my body, and a lot of stress.” He

reported that he had long Covid for the last two years and two months; that his body is “unstable”

and that anything that be puts in it causes an exacerbation of his long Covid symptoms. He listed

out quite a long list of Covid symptoms including; production of a lot of mucus, intermittent

choking bronchial obstruction, being afraid to go to sleep, constant fatigue, constant nausea,

feeling emotionally drained, problems with his bowels, problems with urinating and “heart

spasms” at night. There is an overlap between some of these symptoms and anxiety symptoms,

however he did not see any connection and refused to consider that psychological factors may be

influencing his physical symptoms. He also discussed at length that he found it extremely

difficult to tolerate any medication. He had recently been started on Prothiaden and he also had

recently refused to take PPI for his H. pylori infection. He reported that he moved to                

three months ago and that his personal relationships were strained and that he doesn't get along

with his daughter. He had been living in Ballingeary and Valentia Island previously. He had been

travelling a lot for the last two years. He explained that he wanted a referral to palliative care

because he believed he was physically deteriorating. The nature of his beliefs is more consistent

with hypochondrical delusions than with nihilistic. When I suggested that there might be

psychological factors worsening his physical condition, he responded, “That is a standard

Western medicine response. I'm not really being listened to at all. No, you‘re gas lighting me.

My thinking isn’t wrong. I know myself.” He then reminded me that we were working from

different intellectual paradigms and that our intellectual paradigms were not consistent. He

described how he has gone on long Covid groups online and that he is absolutely certain this is

what is causing his problems. At times he expresses some grandiose ideation in that he believes

he has helped people in the past and that he has expertise in naturopathic medicine. He does

accept that anyone living through what he is living through in terms of his physical health

symptoms could have mental health problems, and so is willing to see us in the outpatient clinic.

l discussed different options for treatment but he is not open to medication or CBT. He says,

“They wanted me to do CBT in St. John of God’s. There isn't a person on the planet that can give

me psychological support.” He reported he did not have suicidal ideation, however at times he

does have a passive death wish due to the extent of his suffering.

 

Past Psychiatric History:

 

         told me that he had been in St. John of God’s for four and a half weeks because he was in

complete despair. He did not view this as being particularly helpful, and said it was expensive. He

also describes that he had engaged with the _____________   mental health team. However he describes

having had a bad experience with them. He said they were “incompetent and rude" and that they

were bullying him and he gave as good as he got and had fallen out with that service, He also

describes having constantly challenged his Psychiatrist in St. John of God’s.

 

Past Medical History:

 

        describes how he was recently in Beaumont Hospital and has been extensively medically

investigated there. He describes himself as having been “thrown out of” Tralee Hospital. He

mentions that despite his extensive medical investigations, nobody can find anything wrong with

him. He has frequently changed GP‘s. He has a history of SIADH which may have been due to a

previous trial of an SSRI. He does believe that despite his current suffering, his mental health is

actually improved over the last year.

 

Mental State Examination (limited due to this being a telephone call):

 

         was quite eloquent. He was at times quite irritable. At times he was somewhat challenging

and even grandiose. His speech was normal in terms of rate, rhythm, volume and tone. He

presented as euthymic and reactive in terms of his mood, however subjectively he was unhappy

and “struggling.” In terms of his thoughts, he has very clear hypochondrical delusions. In terms

of his perception he describes numerous somatic symptoms He denies frank perceptual

disturbance. He has no suicidal ideation, but does have a passive death wish. He has no insight

into the nature of his difficulties. At present there are no acute risks.

 

Impression:

 

This is a 77 year old man who is presenting with Hypochondrical delusions and prominent

somatic symptoms, from which he has been suffering for the past two years and two months,

believing that he has long Covid and that this will ultimately lead to his physical deterioration

and death. He has no insight into the nature of his problems and has had significant difficulty

engaging with psychiatric help in the past. He has had several attempts to engage with psychiatric

services which have been largely unsuccessful. He has also been extensively medically

investigated and he has been referred to a long Covid clinic previously. He does not appear to be

overtly depressed; however he does appear to be extremely anxious which is understandable

given the nature of his delusions. He has frequently switched GP’s in the past and also

disengaged from other specialist services. I suspect that personality factors may also play a role

in his presentation. He is not willing to accept CBT or medication to try and help with his

difficulties; however he is willing to attend the clinic for further assessment.

 

Management Plan:

 

As discussed with Dr. , Consultant Psychiatrist:

l. He should be offered our next available                OPD to attend for an in-person

assessment.

2. We can be contacted for any further information or advice about the case.

 

Thanking you.

 

Yours sincerely,_

Dr. 

IMCRN 

Registrar to Dr. 

Consultant Psychiatrist

                  Mental Health Services.

 

 

My comments on the email

 

(correct spelling for hypochondrical is hypochondriacal)

 

This letter seriously misrepresents what I communicated, what my medical condition is, what my intentions are, what my stance is on medication and other medical treatments, shows catastrophic deficiencies in the understanding and significance of long covid in relation to symptoms and physical and mental health, and it is demeaning and disrespectful to me as a person and belittling of my intelligence.

 

In relation to the diagnosis of hypochondria, yes if you leave out of the picture long covid, fatigue, and the loss of capacity to continue one's life as it was before getting covid, there is not much left but to be absorbed in research about one's health dilemmas. The role of self observation and one's experience of how one's own body responds to curative treatments and interventions is discounted as providing useful information given for the most part the absence of capacity in the medical world to follow up on this information with diagnostics and treatments. It is well known that there are difficulties in understanding and treating long covid but there has been progress in both understanding and in considering therapeutic approaches in the medical literature, which is quite sufficient for any medical practitioner to be up to date on and informed about long covid, and it is unprofessional, dangerous, and potentially iatrogenic to treat anyone with long covid whilst ignoring or being uninformed about this information. An explanation of long covid at the time of writing is included with comments below.

 

The same considerations apply to delusion. Delusion means being out of touch with reality. I would suggest on the basis of what I have said in relation to hypochondria, that it is the doctors who are out of touch with reality and maintaining unjustified narrow and limited beliefs in the face of what is available to them to know.

 

I assume that 'persistent delusional disorder' is psychiatric nomenclature for nailing down the intensity in your opinions of my delusion.

 

In relation to 'somatization disorder' I assume this is intended to convey that I am mistaken in paying attention to my own experience of my physical and mental states especially when they fall outside of known 'science.' I assume you are aware that cigarette smoking was once declared by science to be harmless. My reality is that the science about long covid and other difficult to understand fatigue syndromes is growing by the week, and that I have the time and intelligence to devote myself to getting well informed about it. It appears to me very possible that many, if not most, doctors have neither the time, nor the intellectual bandwith to get so informed, and lack in particular the ability to think out of the box.

 

So to the details next.

 

It strikes me in the overall context of the letter that referring to me as 'this pleasant gentleman' is quite possibly disingenuous.

 

Dr           may have been asked to assess my mental health. I certainly was not informed about it beforehand. If I had been asked I would have said no. I had already agreed with Dr            that he would follow up with his request for me to be seen by Dr           and I had asked him to hold off on this until he had spoken to the lady I see for traditional Chinese medicine consultations as I felt she could give him another, perhaps calmer and more objective, view of what I was dealing with. I was therefore shocked when the unsolicited phone call with Dr           happened within a couple of hours of my leaving Dr             's office,however I consented to speak with him on the understanding he was well intentioned towards me and that I could make it clear to him what I did want and what I did not want.

 

Dr           did not inform me that he was assessing me. I had not been informed that I would be contacted by him. He asked me if I would accept the call and I agreed. During the call I made it absolutely clear that I was interested in talking to psychiatrists only because I was searching for better sedative medication than what was available to me at the time. Apparently he did not take this in nor pass it on.

 

He had discussed 'the case' with Dr             (without my advance knowledge!). I am a person, not a case. From my time in academia I have never heard people referred to as cases. Yes, the body of knowledge accumulated in any inquiry is correctly called a case, but people are not cases.

 

"       had previously been to St. John of God‘s — that he had overwhelming anxiety; that he believed he was suffering from long Covid and that this would ultimely leadat to his physical deterioration and death."

 

At the time I was admitted to St. John of God's I had had long covid for a year. My GP during that year had agreed that I had long covid. He had referred me to Dr                      in the               in Cork, who was not running a long covid clinic but was the only consultant in Cork investigating long covid. I misunderstood that she would attempt to diagnose and treat my long covid and it became clear when I saw her that this was not so. She referred my to many medical specialities, all of whom I saw, including Dr              , who I thank for making the point to me that the only problem he saw was depression. The GP who I saw over this period can I am sure confirm that despite the absence of PCR testing to confirm that I had covid at the time, end of March 2020, (the decision not to request a PCR test was decided by Dr               for very rational and coherent reasons,) and that he came to say to me he was certain I had had covid and had acquired long covid. His name is Dr          .

 

The reason I was admitted to St John of God's was that I was in complete despair about life after dealing with long covid for a year and this was accompanied by acute anxiety.

 

Long covid has been demonstrably causing physical deterioration. I do believe it will very possibly lead to premature death.

 

"He wanted to be referred to a palliative care team as he believed he was dying."

 

I wanted to be seen by a palliative care doctor because they are expert in making people comfortable while they are alive without attempting to cure them. In other words they work with incurable disease. In the absence of any medical understanding of long covid and in the absence of diagnosis and treatment, I do see my long covid condition as incurable and deteriorating. To say I believed I was dying is really not so and I was articulate and specific about the difference. Palliative means relieving pain without dealing with the cause of the condition. In my case the pain is psychological due to unending stress and fatigue, but nevertheless it is pain. I had for at least six months or more been attempting to have this conversation with psychiatrists and I had been meeting a brick wall. It is a reasonable stance in my situation as curative interventions and medications have been experienced as causing heavy and prolonged increases in long covid symptoms, only adding to the intensity of stress, exhaustion, and fatigue. I understand that different kinds of medications are used to reduce or relieve pain, and I have always said with absolute clarity that my request and my intention was and is to microdose with such medications, being mindful of the risk of addiction and harm from normal dosage levels.

 

Involvement in naturopathic medicine is not strange and not a belief in the sense it has no basis in reality.

 

“He also has H. pylori infection which he refuses to treat because he says he cannot tolerate PPI's. He uses Diazepam occasionally and has been tried on SSRl‘s and MAO inhibitors and he could not tolerate either of those. He is very anxious about medication generally and does not tolerate medication and he reports physical side-effects because of it. He has a fixed belief that any medication he takes will kill him.”

 

Dr            prescribed Esomeprazole for acid reflux. I did not say I could not tolerate PPI's, nor was there any thought that there was a causal relationship in my mind between using PPI's and treating h-pylori, which I understood is an antibiotic treatment, while Esomeprazole is for symptom management. Originally Dr                    prescribed Esomeprazole for acid reflux. I did not take it because it was very occasionally that I had acid reflux and most of my life I have avoided pharmaceutical medicine at all costs and only take them when the situation is acute and there is no other choice. I decided not to (refuse ?) treat the H-pylori because I did not want to put my body in distress any more than is necessary. I did believe that the h-pylori treatment would be enormously distressing and I chose to try to carry on without treatment by looking for better sedative medication to manage anxiety. It is true that my body on account of and only on account of the long covid biological abnormalities that are present in it, reacts badly to mostly all medications and other treatments and interventions. These reactions are not the same as side effects. I also experience side effects as conventionally understood with medication. The basis for saying this is my own experience. This does not make it either untrue nor even unreliable. And certainly the reality that it cannot be verified scientifically is not grounds for ignoring it's significance in the context of my difficulties.

 

It is absolutely untrue that I have a fixed belief that any medication I take will kill me.

 

"I offered         an assessment on the day but he was unable to travel and so I conducted an

assessment via telephone call.         reported, 'I don't really want to see a Psychiatrist. I don't

have any psychiatric issues, but I have a lot of anxiety about my body, and a lot of stress.' He reported that he had long Covid for the last two years and two months; that his body is “unstable” and that anything that be puts in it causes an exacerbation of his long Covid symptoms. He listed out quite a long list of Covid symptoms including; production of a lot of mucus, intermittent choking bronchial obstruction, being afraid to go to sleep, constant fatigue, constant nausea, feeling emotionally drained, problems with his bowels, problems with urinating and “heart spasms” at night. There is an overlap between some of these symptoms and anxiety symptoms,

however he did not see any connection and refused to consider that psychological factors may be influencing his physical symptoms. He also discussed at length that he found it extremely difficult to tolerate any medication. He had recently been started on Prothiaden and he also had recently refused to take PPI for his H. pylori infection."

 

I have no recollection of Dr             offering me an assessment. He may have asked me would I come to              to see him. If he did I would have declined as I was too fatigued to make the trip.

I reported one spasm around my heart in the night. It happened. I have many times come to in the night not breathing. This is terrifying when it happens.

 

"He did not see any connection and refused to consider that psychological factors may be

influencing his physical symptoms." This is a complete misrepresentation of what I said. It is obvious to me and to any intelligent person that psychological factors influence physical symptoms. It is equally obvious that physical symptoms influence the psychological state. In my case the physical symptoms are primary. They occur and the psychological factors follow.

 

I said my body does not tolerate most medications. This is true and based on my experience.

 

As I write this I have just completed the sixth day of a fourteen day cure for h-pylori. My fear that it would from the beginning cause intensification of long covid symptoms has not turned out to be justified. However it is absolutely gruelling in other ways. I speculate that the two antibiotics and the PPI medication do not change the way intracellular metabolic processes work and it may not impact the long covid state of disequilibrium in my body in the same way that other medications have done. I will not know if I can finish the remaining eight days until it is complete. Only then will I be able to assess how my long covid situation has been impacted by the medication process.

 

"He reported that he moved to              three months ago and that his personal relationships were strained and that he doesn't get along with his daughter."

 

My personal relationship (singular) with my partner was strained at the time. This is no longer so. However she and I both live a very strained life due to my health issues.

 

My relationship with my daughter who accompanied me to meet Dr           in           is strained. My relationship with her older sister who accompanied me to see Dr             in                   is harmonious, however she normally lives in Australia

 

"He had been travelling a lot for the last two years." In 2021 I attempted to relocate to Greece and to Devon in the UK but it did not work out.

 

"He explained that he wanted a referral to palliative care because he believed he was physically deteriorating. The nature of his beliefs is more consistent with hypochondrical delusions than with nihilistic. When I suggested that there might be psychological factors worsening his physical condition, he responded, 'That is a standard Western medicine response. I'm not really being listened to at all. No, you‘re gas lighting me. My thinking isn’t wrong. I know myself.' He then reminded me that we were working from different intellectual paradigms and that our intellectual paradigms were not consistent. He described how he has gone on long Covid groups online and that he is absolutely certain this is what is causing his problems. At times he expresses some grandiose ideation in that he believes he has helped people in the past and that he has expertise in naturopathic medicine. He does accept that anyone living through what he is living through in terms of his physical health symptoms could have mental health problems, and so is willing to see us in the outpatient clinic. I discussed different options for treatment but he is not open to medication or CBT. He says, 'They wanted me to do CBT in St. John of God’s. There isn't a person on the planet that can give me psychological support.' He reported he did not have suicidal ideation, however at times he does have a passive death wish due to the extent of his suffering."

 

This is not why I wanted a referral to Palliative care. I am physically deteriorating. The two notions are not connected.

 

I would say not beliefs, not hypochondriacal, and as far as nihilistic goes, I actually would prefer to be dead than carry on living my life as it is.

 

I have already commented on how I see the role of psychological factors.

 

It is true that in addition to sharing the worldview that is commonly accepted as our common reality, I have in addition another different worldview than is considered normal, one that better reflects my own way of looking at reality. It makes communication difficult for me. It is somewhat documented on two websites and one published article online.

 

(A worldview or world-view is the fundamental cognitive orientation of an individual or society encompassing the whole of the individual's or society's knowledge and point of view. A worldview can include natural philosophy; fundamental, existential, and normative postulates; or themes, values, emotions, and ethics.

From https://en.wikipedia.org/wiki/Worldview)

 

 

I did not remind Dr                  of anything. I informed him of the worldview issue.

 

In order for paradigms to be consistent they have to be of the same worldview.

 

Long covid is causing me problems. I am not just absolutely certain. I know it is. It is a complex issue and to reduce it to 'what is causing my problems' is absurd.

 

I am not a practitioner of naturopathic medicine but I have used it for most of my life and I have considerable knowledge in that domain.

 

I have been paid a lot of money in the past to help people. If this is grandiose ideation the world is in big trouble.

 

I told Dr          that I did want to see his team in the outpatient clinic, because and only because I wanted help with finding a better solution to sedating than I have at present. I did not want my mental health to be assessed or to be treated psychiatrically for mental health issues. I have been clear with everyone about this and the only way I can understand my failure to communicate this is that those who I say it to misinterpret or mishear what I want and what my intention is.

 

I have already explained the issue with medication in relation to long covid.

 

The issue about CBT is to do with the worldview situation. However I believe that the National Institute for Health and Care Excellence (NICE) in the UK, which is the organisation that sets out guidelines for the care of people with long covid and other fatigue related syndromes, recommends against CBT (cognitive behavioural therapy) and GET (graduated exercise therapy) for people who are dealing with fatigue illnesses, presumably because more stress is not helpful, and this is my reason too.

 

By the way, when I was admitted to the Bantry psychiatric unit it was written as one of the diagnostic points that I have poor coping skills. This is absurd, especially given what I am dealing with in my life and how I have handled myself.

 

If you can produce anybody who shares my worldview and has the skills to help and counsel me in that context I will be very happy. Actually my partner who I live with is the only person I rely on to any extent for that kind of support.

 

Yes, I did not at the time have suicidal ideation although I long for my life as it is to be over. However within a few hours of speaking with Dr            the suicidal ideation set in and over the ensuing weeks has spilled over at times into contemplating actual suicide. I previously had suicidal ideation during the part of 2020 that I had long covid. Since then I have had none. As I explained to professor Smyth I think I will be dealing with this issue for some time yet. In moral terms I absolutely do not want to actively kill myself however in recent weeks I have acquired a much better understanding of how this can become a reality in anyone's life.

 

"           told me that he had been in St. John of God’s for four and a half weeks because he was in complete despair. He did not view this as being particularly helpful, and said it was expensive. He also describes that he had engaged with the             mental health team. However he describes having had a bad experience with them. He said they were “incompetent and rude" and that they

were bullying him and he gave as good as he got and had fallen out with that service, He also

describes having constantly challenged his Psychiatrist in St. John of God’s."

 

Being in St John of God's got me through a huge crisis. The              mental health team were incompetent and I am happy to explain why I have that view. I did not fall out with them. I stood my ground and the senior psychiatrist there came to me and said she was happy to discharge me without issue.

 

I challenged the consultant psychiatrist in St John of God's on the same grounds I have articulated here, that he was leaving long covid out of the picture and that was unacceptable. Otherwise he took good care of me and I respected him.

 

"           describes how he was recently in Beaumont Hospital and has been extensively medically

investigated there. He describes himself as having been 'thrown out of' Tralee Hospital. He

mentions that despite his extensive medical investigations, nobody can find anything wrong with him. He has frequently changed GP‘s. He has a history of SIADH which may have been due to a previous trial of an SSRI. He does believe that despite his current suffering, his mental health is actually improved over the last year."

 

I had SIADH when I was admitted to St John of God's. It was rapidly cleared up by paying attention to my sodium and drinking water intake. It was resolved within a couple of days of beginning to take Citaloprem. It could not have been caused by Citaloprem. I again had SIADH when I was admitted to Beaumont and it quickly resolved itself. I had stopped taking Citaloprem about 4 months before going to Beaumont. The SIADH can not have had any connection with the Citaloprem. My guess is that on both occasions I had been in extreme, even for me, stress, anxiety, fatigue and exhaustion, and it may have had something to do with excessive water intake along with insufficient sodium intake.

 

With one exception I have changed GP's only when I have moved my living location. The exception was that the GP I was with had been unwilling to prescribe the imported thyroid medication I had been taking for some months as she was anxious about getting into trouble. I visited Dr Cotter in Bantry and he had written the prescription almost before I had finished telling him about the situation.

 

Late last year I decided to take myself to Tralee A and E around 7:00 pm. I went there because I was feeling very ill and worried about what was going on in my body. I waited sitting up until 5:30 am to see a doctor. He was young and clearly not experienced. He listened to me for a few minutes, and then excused himself saying he was going to consult with his registrar. He came back with a discharge note saying I should have a psychiatric consultation and when I explained that I had been seen by the psychiatric team and discharged without issues, he would not reconsider my situation. It felt like being thrown out. I certainly would not have sat up in the waiting room if I had expected that the medical issues I was presenting with would be ignored.

 

"         was quite eloquent. He was at times quite irritable. At times he was somewhat challenging

and even grandiose. His speech was normal in terms of rate, rhythm, volume and tone. He

presented as euthymic and reactive in terms of his mood, however subjectively he was unhappy

and 'struggling.' In terms of his thoughts, he has very clear hypochondrical delusions. In terms of his perception he describes numerous somatic symptoms. He denies frank perceptual disturbance. He has no suicidal ideation, but does have a passive death wish. He has no insight into the nature of his difficulties. At present there are no acute risks."

 

I can understand why I am interpreted as being grandiose so long as I look at the situation from within the generally shared worldview. Perhaps what I have said here might prompt reconsideration.

 

I don't relate to 'frank perceptual disturbances'. It needs clarification for me. I can say there have been times when I have noticed perceptual disturbances but that is quite some months ago. I am not sure what the relevance is to the context being discussed.

 

To say that I have no insight into the nature of my difficulties is absurd.

 

"This is a 77 year old man who is presenting with Hypochondrical delusions and prominent somatic symptoms, from which he has been suffering for the past two years and two months, believing that he has long Covid and that this will ultimately lead to his physical deterioration and death. He has no insight into the nature of his problems and has had significant difficulty engaging with psychiatric help in the past. He has had several attempts to engage with psychiatric services which have been largely unsuccessful. He has also been extensively medically investigated and he has been referred to a long Covid clinic previously. He does not appear to be overtly depressed; however he does appear to be extremely anxious which is understandable given the nature of his delusions. He has frequently switched GP’s in the past and also disengaged from other specialist services. I suspect that personality factors may also play a role in his presentation. He is not willing to accept CBT or medication to try and help with his difficulties; however he is willing to attend the clinic for further assessment."

 

When I was a student in UCD, I was under the care of Dr Peter Fahy for three years. He took really good care of me basically with sympathetic counselling and tranquilising medication. In St. John of God's I was similarly treated well and sensitively. I saw a psychiatrist in the town of Kerkyra in Corfu who was similarly helpful and aware of and responsive to the long covid issues I was dealing with.

 

On a referral by Dr Karen Fitzmaurice in the Mater Private who wanted me to see a psychiatrist I was seen at home by a psychiatrist from the Mercy hospital in Cork. There was no follow up. There was quite likely an assessment done but I have not seen or heard of it, nor was I informed that my mental health was being assessed. When I was referred by SouthDoc to the Mercy Hospital A and E for help with despair, they lost the referral letter so I did not get to see a psychiatrist on the visit. On a follow up phone call I could not hear what the psychiatrist was saying as there was so much screaming in the background. A few days later I spoke with a psychiatric nurse in the Mercy A and E and she confirmed my suspicion that their unit would not be a suitable environment for me. I can only assume that this was interpreted as one of my unsuccessful attempts to engage with psychiatric services.

 

The first time in my life I was informed I was being assessed was with the                  psychiatric team. Bear in mind that I had not asked for anything more than a consultation about medication. If my GP who referred me for this had more in mind than what I was asking for which was help with medication, she did not tell me about it. I was seen at home by a mental health nurse, and then by the mental health nurse and a psychiatrist also at home. I was scheduled for an in office consultation. In between there was a second visit from two mental health nurses for no apparent reason other than that the first nurse wanted the second nurse to meet me before the in office consultation. It was alleged to me that he was a trainee, but on the basis of the subsequent office visit I doubt this was the truth. When I went for the office visit instead of being seen by the psychiatrist who had seen me at home I was seen by a young woman who I imagine qualified within the prior few years. The psychiatrist who had first seen me had been transferred to another region. At a certain point she got frustrated with me and told me we were there to assess my mental health. I told her it was the first I knew of that, that I had not asked for or consented to having my mental health assessed and that I was there to talk about anxiety medication.

 

Now I find again that Dr             was assessing me without informing me.

 

I am not happy at all with this letter he wrote and the subsequent outcome. Nor am I happy that it has become part of my recorded medical history and I would like this corrected.

 

Do you not need the patient to consent to a full mental health assessment and to ask for treatment before you go down that track? I am writing this to clarify all the different ways in which this approach is not OK.

 

I have never been referred to a long covid clinic.

 

I can only think that the significance of the statement I have frequently switched GP's in the past is a misreading of my HSE medical history files as is the mention of the association of SIADH and Citaloprem, and no doubt a bunch of other erroneous information I have no idea about.

 

Apart from an early discharge from Beaumont hospital because there was a personal issue in my life that I had no option but to take care of, I don't know what specialist services I am alleged to have disengaged with, unless perhaps the Mercy Hospital psychiatric unit.

 

I don't know the meaning, or relevance of saying that personality factors may be playing a role in my presentation. I would have assumed that is the case for every human being.

 

It is true I will not accept CBT. I am not even asking for help with my alleged hypochondria, delusions, grandiosity, erroneous and strange beliefs, and all other perceived difficulties that are represented in the letter.

 

I did want to be seen in the clinic to discuss better medication in the light of my experiences with the long covid reactivity and so far that has not happened in any way other than trials with medicines that cause me great distress.

 

I want to be helped not managed and I have had enough unasked for assessment.

 

The above was written on or around Wednesday 24th August. I finished the two week course of antibiotics for H-pylori on Tuesday 1st September. What follows is an account of recent developments.

 

I was not affected by the treatment for h-pylori in the same acute way that I expected from my experience with other experiments with medication, where one tiny dose had been enough to cause intense peaks of long covid symptoms which took up to 10 days to pass out of my body. I somehow managed to get through the gruelling debilitation of 14 days of very strong antibiotics morning and evening. However it is now more than three weeks since I finished the antibiotics and I am feeling extremely debilitated as a result of taking the antibiotics.

 

I have done considerable research in the past two weeks and have made two discoveries. One is the clear explanation by Dr Claire Taylor that long covid is entirely caused by Thrombotic Vasculitis and how it impacts each person's body differently depending on what prior predispositions each of us have. The point is that inflammation of the vascular system can affect any aspect and many aspects of one's health I have included Dr Clare Taylor's explanation below. One of the main symptoms that long covid people can have and that underpins extreme fatigue, is dysautonomia. I have also included Dr Sanjay Gupta's proposition of an alleviative treatment for dysautonomia below.

 

Now that I understand that I have had dysautonomia at least from the time I originally contracted the covid virus more than 29 months ago, I can say that the dysautonomia was seriously worsened by the h-pylori medication. Of course it is good to have cured the h-pylori condition, but I actually feel more ill now on account of the much increased inflammation that is signified by the intensified dysautonomia.

 

Here is the information I have put together from Twitter messages of Dr Claire Taylor showing her understanding of what Long Covid is about:-

 

I find Dr Claire Taylor's insights into the nature of long covid very compelling, clear, and comprehensive especially as she explains brain fog and neurological issues in a way that is consistent with the views of Dr Jack Lambert ( https://www.independent.ie/irish-news/news/long-covid-can-result-in-ongoing-psychiatric-issues-studies-have-revealed-41721264.html ) concerning brain fog and mental health challenges.

 

Below is a summary of her understanding taken from recent twitter posts she made in June. I would hope to see this perspective become the basis for our national long covid care and treatment program.

 

This seems to me to be the information and the perspective (both scientific and out of the box together) that GP's and consultants need to grasp before they deal with long covid patients. I wonder what our chances are of getting it out there.

 

“Dr Claire Taylor

 

( https://threadreaderapp.com/thread/1535963941360345088.html )

 

excerpts:-

 

From twitter thread June 12th 2022

 

[#longcovid]( https://threadreaderapp.com/hashtag/longcovid ) is covid related THROMBOTIC VASCULITIS.

 

thrombotic vasculitis is when the spike protein makes your blood vessels inflamed and form little clots that block small blood vessels #MicroClots I like evidence so here you go - https://portlandpress.com/bioscirep/article/41/8/BSR20210611/229418/SARS-CoV-2-spike-protein-S1-induces-fibrin-ogen

 

When your blood has little clots in it filled with amyloid it causes more Inflammation. Think of when you get a cut and the skin goes red and sore. That’s inflammation. Imagine that in your blood vessels. The oxygen in your blood then struggles to get to all the tissues.

 

Covid related thromobotic vasculitis puts you at higher risk of heart attacks and strokes after Covid. After all the blood vessels are inflamed. That’s what vasculitis means.Evidence - https://publichealth.jhu.edu/2022/covid-and-the-heart-it-spares-no-one

 

What about your brain? ? is that spared? Unfortunately not. It’s is invaded by [#COVID19]( https://threadreaderapp.com/hashtag/COVID19 ) with a resulting huge increase in inflammation. Some people call it ‘brain fog’ or ‘neuroimmune’. It is actually ENCEPHALITIS. Sounds serious, right?Evidence - [ https://link.springer.com/article/10.1007/s00415-022-11050-w ](https://link.springer.com/article/10.1007/s00415-022-11050-w)

 

(This is what backs up Dr Jack Lambert's focus on long covid as a neurological issue!)

 

In medicine we have always treated thrombotic vasculitis and encephalitis seriously. Not left people at home and tried to rehabilitate them with no treatment.

 

The next time you see a patient with long Covid think of the pathology. Covid related thrombotic Vasculitis - and acknowledge the implications. Take it as seriously as the pathology suggests.

 

Would you try and rehabilitate and psychologicalise a patient with vasculitis or encephalitis? No you absolutely wouldn’t.

 

Rehabilitation is important. But you cannot rehabilitate someone until you diagnose and treat the underlying condition. Sending Long Covid patients to physiotherapists and occupational therapists and expecting them to get better with no medical treatment?

 

From twitter thread June 8th2022

 

Covid is a vascular disease. We need to stop thinking of it primarily as a lung disease. I hear lung Doctors say ‘we don’t see much on the chest X-rays in #longcovid’. The rheumatologists say ‘we don’t see raised inflammation on the blood tests in #LongCovid’

 

The cardiologists say ‘we don’t see much myocarditis in [#LongCovid]( https://twitter.com/hashtag/LongCovid?src=hashtag_click )and when we do it’s mild’. The GPs say ‘ we see lots of odd chest pain after Covid but we don’t really know what it is’.

 

The media say ‘Covid is mild, long Covid is a mystery and we don’t know what causes it or how to treat it’.

 

I say - Covid is a virus that causes vascular damage and inflammation. I say the ‘odd chest pain’ is not a mystery and neither is [#LongCovid]( https://twitter.com/hashtag/LongCovid?src=hashtag_click )

 

Why do I say that? We now know that the blood tests we do in the NHS only show a tiny % of the immune system. We are testing the wrong markers. In studies Interleukins and cytokines ARE raised.

 

( https://t.co/L1m204Y8PU ) [#Covid_19]( https://twitter.com/hashtag/Covid_19src=hashtag_click )causes inflammation. No mystery.

 

Now to more exciting stuff. Covid causes micro clots with amyloid. Yes amyloid. They block capillaries and reduce oxygenation. Here is a photo of a patient’s blood before Covid and afterwards when they got [#LongCovid]( https://twitter.com/hashtag/LongCovid?src=hashtag_click )showing new microclots [ https://cardiab.biomedcentral.com/articles/10.1186/s12933-021-01359-7https://cardiab.biomedcentral.com/articles/10.1186/s12933-021-01359-7"> ]

 

Covid is a vascular disease. If you want to learn more this is a brilliant paper.

https://portlandpress.com/biochemj/article/479/4/537/230829/A-central-role-for-amyloid-fibrin-microclots-in//portlandpress.com/biochemj/article/479/4/537/230829/A-central-role-for-amyloid-fibrin-microclots-in%[email protected]%5D(https://twitter.com/dbkell"> [@dbkell]( https://twitter.com/dbkell ) [@resiapretorius]( https://twitter.com/resiapretorius )

 

 

Why is it not on the front pages of the newspapers? Why hasn’t our health secretary mentioned it? Why doesn’t your Doctor know about it? Why don’t they know that ‘normal’ bloods in Covid don’t test the whole immune system and for microclots? These would be good questions.

 

#LongCovid is a post viral illness. Therefore it has not surprised me today to see the pre-print showing the same microclots in #MECFS https://www.researchsquare.com/article/rs-1727226/v1 This will not show up in blood tests done currently for #MECFS or #LongCovid resulting in ‘but your bloods are normal’

 

Hopefully this thread might convince you Covid is more than a cold. That Covid causes vascular complications.That doing the usual tests won’t show you the problem. That when you apply cutting edge science to medicine you find answers. #MedTwitter #LongCovid #MECFS #TeamClots

 

‘Medical science has proven time and again that when the resources are provided, great progress in the treatment, cure, and prevention of disease can occur.’ Michael J. Fox' "

 

[End of Dr Claire Taylor twitter thread]

 

This research, https://www.medrxiv.org/content/10.1101/2022.10.13.22281055v1 , just recently published confirms strongly that long covid is an inflammation based disease.

 

Here is a paper that is relevant to a possible way of looking at how depression arises as a response to stress.

 

" https://www.medscape.com/viewarticle/838376 "

 

Here is the work of Dr Sanjay Gupta in the UK explaining how periodic saline infusions provide relief to patients suffering with POTS and with Long Covid.

 

From https://drsanjayguptacardiologist.com/blog/a-potentially-transformative-treatment-for-pots-long-covid/

 

"A potentially transformative treatment for POTS/Long COVID.

 

By Dr Sanjay Gupta|August 31st, 2022|Blog, Brain Fog, Coronavirus, Covid-19, Postural Tachycardia Syndrome (POTS), POTS|0 Comments

 

What is POTS?

 

POTS stands for postural orthostatic tachycardia syndrome. In this condition, patients complain when they stand up for a prolonged period of time, they feel very uncomfortable with dizziness, palpitations and tremulousness and therefore they either have to sit or lie down or they risk collapsing. When you examine them, the heart rate can be found to be excessively fast.

 

As doctors, sometimes when we can’t explain what is going on, we just take what the patient tells us, give it a fancy technical name and make it a condition. This patient says her heart rate goes up excessively when she is in an upright posture. Let’s call it Postural Orthostatic Tachycardia Syndrome – that’s not really a diagnosis – it’s just a medical jargon filled term for what the patient has just told us. It tells us nothing more than that – but this is the term that we have ended up sticking with! In fact this term does patients a disservice. Because of the name of the condition, many clinicians have incorrectly assumed that it is only a condition that is manifest when the patient is upright or standing up. This is incorrect. I have over a thousand patients with POTS and I have spent a lot of time listening to their stories. All of them say ‘ I feel rubbish all the time – I just feel rubbisher when I am upright’.

 

 

What do they mean when they say they feel rubbish all the time?

 

They are always tired, they have bad brain fog, they have issues with lack of refreshing sleep, they have horrendous gut issues, they have chest pain and breathlessness, they have headaches and they even have bladder symptoms. Unfortunately, the term POTS does not capture all these other symptoms and therefore I prefer the term dysautonomia which means a disequilibrium between the flight and fight system and the rest and digest system. In essence these patients spend a lot more time in flight and fight mode and very little time in rest and digest mode and therefore they are always simultaneously tired and wired. This is a far more appropriate and accurate name for this condition.

 

 

How do patients develop POTS?

 

Increasingly we are seeing that they often inherit a genetic vulnerability such as Ehler’s Danlos syndrome/joint hypermobility syndrome and then at some point in their lives they get hit by some kind of infection, this vulnerability is unmasked and the patient starts noticing these symptoms. In essence, people are born with a genie in their lamp and then an infection comes along and the genie is unleashed and they then can’t get the genie back in the lamp. The most common infection that I have come across as a trigger for dysautonomias is Glandular fever, However there are other infections that can also trigger dysautonomias including coronaviruses and it is therefore not at all surprising that so many people have developed this condition called LongCOVID which has almost identical symptoms to a dysautonomia like POTS and I would argue that perhaps POTS and Long COVID are indeed the same condition.

 

 

Are POTS AND Long COVID the same condition?

 

Why do I say this?

 

Only 10% of patients with COVID develop Long COVID – why? If it were just something about the virus then surely everyone who got COVID would be expected to get long COVID. There must be something about that 10% which makes them more vulnerable.

 

The severity of COVID does not have a bearing on whether you get Long COVID or not. Well if it was just about the virus then logic would dictate that the more severe the illness, the greater the chance of having Long COVID. We do not see this. Again makes you think that the virus simply flicks the switch in those people who possess that switch.

 

When you talk to many Long COVID sufferers, they will admit to having some dysautonomic symptoms albeit mildly even before they caught COVID. Many times they had just assumed that those symptoms were normal for them but when they get hit by the infection then they find that all those symptoms which were very mild get so much worse.

 

 

So it is highly likely that a majority of patients with Long COVID have POTS and the problem is that because the definition of the term POTS is so narrow, patients with Long COVID will be managed as they have a completely separate condition rather than being managed as a post-viral dysautonomia, the way POTS is managed. There are too many doctors who are interested in treating conditions rather than treating patients. This means that many patients with LongCOVID may miss out on lots of helpful treatments which we use in POTS, and just be asked to pace whilst we wait for some fancy American pharmaceutical company to produce a mega-expensive and potentially harmful new drug specifically for Long COVID. I have hundreds of patients with Long COVID and I can categorically say that many of them feel better when they are managed in the same way as I manage my POTS patients.

 

 

In terms of optimal management for POTS patients, i use 4 approaches:

 

Lifestyle management

 

Physiotherapy

 

Medications

 

Patient advocacy where the doctor who is interested in the patient helps the patient maintain their identity by advocating for them to access modifications at school and work.

 

 

You will find a lot more details about these 4 pillars of treatment on other videos on my channel. To be honest, these measures make a difference but they don’t transform patients. I usually see like a 40-50% improvement but patients still remain enfeebled.

 

Today I wanted to talk about an intervention that in my experience can be transformative for some patients and in my -opinion should be offered more widely than it is.

 

Today I am going to talk to you about the benefit of regular intravenous saline infusions in POTS and potentially even in many patients with Long COVID.

 

One of the most consistent symptoms in POTS is that patients generally feel worse when they are upright. The one thing that happens when we are upright is that gravity will pull blood towards it and therefore it is more difficult for the blood to get up to the brain which is the furthest organ from the ground. We therefore rely on our legs muscles and the blood vessels in our legs to squeeze and help push the blood upwards. In patients with POTS this does not happen as well and therefore blood pools in the legs and therefore less blood is available for circulation. We also find that this same phenomenon happens when it is warm because when it is warm our blood vessels open up and therefore the leg vessels open up and this encourages more pooling. Similarly many patients will feel worse after a big carbohydrate rich meal because the carbs need more blood to go to the gut and the blood tends to pool in the gut – a phenomenon known as splanchnic pooling. We also know that because of this reduction in circulating volume, the heart has to work with less blood and therefore over a period of time the heart can actually become smaller which means that the heart now is pushing less blood out with each beat and has to beat faster to get the same amount of blood around. In addition, the legs muscles start getting deconditioning which continues to propagate this vicious cycle. We also know that patients with POTS tend to run low on the hormones that are produced to by the kidneys to help retain water and so not only can’t they circulate it, they even have difficulty holding onto it which is why many patients with POTS will say that they are constantly urinating and many have to undergo investigation for Diabetes insipidus.

 

If we can therefore increase the circulating volume, then patients do feel better. The easiest way to do so (at least theoretically) is to ask the patient to drink more and this is why the first recommendation is to ask patients to substantially increase their fluid input to at least 3L of water daily and cut down on diuretics such as soda etc and carb rich meals. Because extra water does not stay in the blood vessels, we usually ask patients to take more salt and electrolytes as these encourage fluid retention in the blood vessels. However despite these measures, patients see only a mild/at most modest benefit. The reasons are many fold.

 

It is requires a lot of discipline to make sure you are constantly hydrating

 

The frequent urination is inconvenient, bothersome and tiring

 

Many patients struggle with increasing salt intake and electrolytes because these can be unpalatable

 

Patients with POTS suffer from gut issues so they feel nauseous anyway and get easily bloated and also may have impaired digestion and this may have an impact on absorption

 

Finally when the water finally gets into the blood vessels, they have difficulty holding onto it

 

So in some ways, if one could bypass the gut and in some way deliver the fluid with the right concentration of salt directly into the blood vessels and bypass the gut altogether then that would be expected to have quicker and more dramatic effects.

 

This is where the idea of giving intravenous saline comes in. The problem is that the patient still struggles to hold onto the water for a prolonged period of time therefore you would expect the patient to feel better when they get the fluid and then you would expect them to deteriorate after a few days and this is why intravenous saline infusions have to be given repeatedly.

 

Is there any evidence that this works?

 

Well there is an interesting paper by a very prominent physician called Blair Grubb from Toledo which was published in the Journal of interventional cardiac electrophysiology in 2017 called ‘Effects of intravenous saline infusions in patients with medication – refractory postural tachycardia syndrome’.

 

They took 57 patients who were already medicated (at least 3 different types) for POTS but were still struggling. They recorded measures of quality of life before initiating intravenous saline infusions regularly (1L every week) via peripheral cannula (or in small numbers through PORTS) and they followed these patients up over the next 3-12 months to see if they reported an improvement in quality of life.

 

The results showed that only 4 patients of the 57 did not feel that they benefitted. All the rest reported a benefit and the benefit was seen in all domains across the quality of life assessments. Most patients reported an immediate improvement in symptoms that lasted upto 3 days. Many patients subsequently found that because they felt so much better they were able to use that improvement to do more physiotherapy, get more conditioned and many were then able to discontinue the IV fluids altogether. More importantly there were no major adverse events from the IV saline.

 

This was clearly very encouraging even though this study was a non-blinded observational study rather than a randomised placebo controlled trial which most doctors pay more attention to. Despite these encouraging data, as yet I am unaware of anyone who has done a randomised controlled trial and this is probably because there is no real money to be made from IV saline (which is cheap as chips).

 

On the basis of this study, one would think that this is a simple and safe intervention to offer those patients who continue to struggle despite lifestyle physio and medications and I have many such patients and so I was keen to explore this option for my patients. Unfortunately I found that it proved far more difficult to convince the NHS gurus that this was worth trying for several reasons.

 

 

Many doctors don’t know anything about POTS

 

Many who do know about it don't believe in it

 

Those who believe in it, fail to understand why just telling the patient to drink more is not an adequate enough intervention

 

As it is not dangerous, it does not seem to be important enough to address

 

Many feel that that benefit is simply due to a placebo effect (even though you have to ask whether that really matters – if someone says i don’t enjoy my quality of life and after delivering a cheap, safe intervention, the same person says i feel so much better!)

 

Finally there were no easy mechanisms within a cash strapped, space-starved, staff-depleted NHS to provide a service.

 

 

Despite all these challenges, i was keen to see if i could access fluids for some of my patients and my breakthrough came when one of my patients wrote to Mr RIshi Sunak, who was then Chancellor of the Exchequer and her local MP and Mr Sunak wrote back requesting that on humanitarian grounds she be offered IV fluids because she was so incredibly debilitated. Happily my hospital agreed and we started offering some of our patients regular IV saline infusions via peripheral cannula (we do not put ports in because there is a much higher risk of blood clots and infections with something that remains in the patient). I am delighted to say that the vast majority of my patients (about 30 or so) have found this simple intervention to be transformative. They come once a week, sit in our day case unit and receive IV saline 2L over 4 hours via a peripheral cannula. They then go home and engage with physiotherapy and conditioning work and come back and do it all over again in a week.We have not been able to offer it to more simply because of a shortage of resources but i am hoping that soon we will be able to add to the evidence base and fund more resources.

 

I wanted to share some feedback from the patients in their own words.

 

Dear Dr Gupta,

 

I thought I would write to you now we are a couple of months into my IV treatment.

 

I can’t believe how much of a difference this treatment is making. I admit I was sceptical at first but having run out of options in my treatment I had no alternative but to give this a try.

 

To start with I didn’t see much difference but then after a couple of weeks my wife commented that I looked different immediately after receiving treatment, that I looked well and my complexion was more refreshed, my skin was less pale and I had more of a glow about me.

 

I am able to get more done than I have in the last 6 years on the day of the infusion, I can bare to stand up for longer where usually I would be rushing for a chair or my mobility scooter.

 

This would last a day but that day is time I can spend with my family instead of being left behind as I was unable to participate.

 

I noticed a longer effect if I wear my compression socks that I purchased from Amazon (the ones you suggest are way out of my price bracket unfortunately). Ever since I did this I’m able to extend these effects from my treatment into the following day.

 

Although you only get 1-2 days of lesser symptoms from this treatment, it has made such a difference to me. I very much hope that funding will continue so that I am able to have more of a life instead of being confined to my home.

 

 

Dear Dr Gupta,

 

H has now finished her once a week, over 4 weeks course of infusions. I have to say I did not expect the infusions to make such a difference to H, but they have!

This therapy has given us glimpses of our daughter back, that we haven’t seen for over 8 years. She has struggled not only with Ehlers Danlos Syndrome, but also with Chronic Fatigue, Brain fog, Auditory delay, Headaches and Difficulty processing speech from others and giving a related answer.

Therapy has given her so many benefits. She has not had a headache since starting treatment. For 3 days a week she is animated, chatty and can process conversations correctly. Her energy levels have increased vastly for 3 days a week she can do hobbies, sit downstairs ( she is normally bed bound) and has now been for days out. This is huge for H and us as a family.

If H were to continue and possibly have infusions twice a week, she may benefit so much. It would give her more family and friends time. Less time being fatigued and in a state of all consuming brain fog, which makes life so hard for her. She would not feel isolated, in H’s words she feels,”Normal” for those few days. To a disabled person that word is HUGE! To a parent it’s a life line we thought she would never have. Thankyou for this opportunity you have given to H.

So as you can see – these are incredibly heartwarming stories and it is a shame that this is a service that is not offered more widely to carefully selected patients. Although one of the reasons is that there are no mechanisms in place to offer this service within existing NHS services, a bigger reason is the attitude of doctors. Doctors these days think, what will happen to me if i try to help this patient when they should be thinking ‘what will happen to this patient if i don’t help them’. My own feeling is that a doctor who is not prepared to put him or herself out of his/her comfort zone, for the sake of the patient then that doctor is not deserving of their title.

I hope this video/blog will empower patients who suffer from dysautonomia, POTS and long COVID to access the care that they truly deserve.

https://youtu.be/retGCkEuE5A

P.S We now have a new website that I have started for patients with POTS. This has lots of free resources you can access. The website is www.potsspecialist.com. If you get a minute to check it out please do and let me know how we can make it better and more useful.”

[End of Dr Sanjay Gupta section on Covid POTS and saline infusion relief]

I have requested this treatment from my GP and from Dr         in Cork University Hospital. Neither of these doctors were willing to consider being informed about Dr Gupta's work or in helping me to get this treatment in a careful and timely way.

 

When long covid is understood to be basically Thrombotic Vasculitis it is obvious that any treatment or medication that may intensify the level of inflammation in the patient needs to be carefully evaluated. When the medical practitioners are ignorant of this possibility and insist on practising 'evidence based medicine' without any flexibility to think outside of this box, it both puts patients with long covid, POTS, ME, CFS, Fibromyalgia, Lyme Disease and other fatigue related syndromes at risk of being harmed. By insisting on evidence based medicine and insisting on not considering that maybe there are explanations which they don't know about, doctors devote enormous and time consuming efforts to explain what is wrong and to treat only what they can find to be evidence based. They waste the resources of the health system without getting to the bottom of what is going on with the patient and treating the patient in a sensible way. Practising evidence based medicine means ignoring the patients experience unless it is backed up by laboratory testing, even when suitable tests are not known about, or in development.

 

Dr Seamus O'Mahony has become an authority on what is wrong with medicine. (https://seamusomahony.com/ and https://www.youtube.com/watch?v=e9O2HSYy4bY )

 

Most especially egregious is the custom of deciding it is all explained away as mental health issues. Yes, mental health issues arise and have to be dealt with, but they arise as secondary issues to the actual physical impairment that is Long Covid.

 

From https://www.psychiatrictimes.com/view/what-king-charles-iii-said-about-religion-that-resonates-with-psychiatry

 

“Around the turn of the new millennium, the Royal College of Psychiatrists established a Spirituality and Psychiatry Special Interest Group to appreciate the influence of spirituality and religion in mental health and patient care in the United Kingdom.Likewise, in recent decades, psychiatry in the United States has also paid increased attention to the influence of spirituality and formal religions. Like the challenge for King Charles, the basic recommendation is to assess what any faith might mean to an individual patient and to watch for any countertransference reactions which might unduly stem from the clinician’s own faith preferences.Moreover, even though there is official separation of church and state in the United States, the influence of a given religion varies with size and other political factors. Discrimination has increased recently in the form of anti-Semitism towards those of the Jewish faith and Islamophobia towards those of the Islamic faith. To help address such adverse mental health repercussions, colleagues of various faiths and I labored to learn from each other in order to recently produce a scholarly and practical trilogy of books on psychiatry and these 3 faiths.1-3 Psychiatry still needs one that will focus on Hinduism and other Eastern religions.As we discussed in the column, “An Oath of Lifelong Psychiatric Service,” let us join King Charles III in recognizing, understanding, and incorporating how religious and spiritual beliefs can potentially be of benefit for us all. Applying that to our Hippocratic oath might convey: do no religious-based harm of omission or commission.”

 

This course description of a course given by Dr Jack Lambert - https://www.lymedisease.org/long-haul-covid-lyme-disease/ makes it very clear why everything recounted in this document that has happened to me has been so wrong in the way that Irish doctors are 'treating' people with long covid.

 

Update on 11th November 2022

 

On September 22nd 2022 I asked Dr                    , who had told me she knew absolutely nothing about long covid, if, based on the work of Dr Sanjay Gupta, I could be given saline infusions. She offered me an appointment with a consultant in a Limerick hospital for a tilt test for POTS to take place after several weeks. I declined on the basis that I knew experientially that the test would show positive and it would be a long time to wait for a diagnosis that would still not be accepted as a suitable treatment for long covid management. I am also in no condition to go so far and further risk my health. In other words, just more procrastination, as this is how doctors put off dealing with actual health issues they don't know anything about. Dr        flat refused to even consider looking into Dr Gupta's work.

 

On September 28th I had my last consultation with Dr                      . I asked him if he could arrange for me to have saline infusions. He turned me down flat saying it would not be ethical and there was no basis in medical understanding (ie evidenced based medicine) for doing it. He did not even inquire why I was asking.

 

I realised that I needed to change GP. I was refused by two practises on the grounds that I already had a GP. I asked Dr           if he would delist me from his practise, and he informed me that he could not do that until I had an acceptance from another GP, although possibly after six months had elapsed there might be a way to do it. Somewhat mysteriously out of the blue I received yesterday morning out of the blue a letter instigate by my GP telling me if I can show three refusals from other practises they will assign me to a new GP. I am currently pursuing this with relief.

 

I have been deteriorating since late September. For the past ten days or so my health has been extremely bad. I could not possibly continue researching and calling GP's as the fatigue and stress was already over the top.

 

Two days ago I felt so bad both mentally and physically that I become frightened for my life. When I settled again in the early hours of the morning it came to me that I almost certainly am having a reoccurrence of SIADH. If this is correct it will be the third occurrence since I got long covid. The medical test to verify this is to have a blood test that shows low levels of blood sodium.

 

Today I called the GP to ask for a blood test and to get a recommendation on whether I should go to the accident and emergency department. I was seen by Dr              who is the         of Dr           . Dr              treated me even more badly than Dr              .

My blood pressure was extremely high. He wanted me to take blood pressure medication.

 

The treatment for SIADH is saline infusions.

 

I refused the blood pressure medication.

 

When I was in Beaumont hospital a year ago a single saline infusion was sufficient to clear the matter up. I was stronger and had better physical wellbeing for several months subsequently.

 

My view on the blood pressure issue is that if I have SIADH and I get the infusion I will not need blood pressure medication. I have several years ago had bad reaction and side effects while taking blood pressure medication for a few weeks and I would count myself lucky to die suddenly of a stroke or a heart attack rather than to continue struggling on with ever increasing impairment and disablement.

 

Tomorrow morning I will go to the CUH Accident and Emergency department and the story will unfold.