My Lived Experience of the Covid Epidemic

My Lived Experience of the COVID Epidemic 

Post viral infections are nothing new, so why no data, understanding of the biomedical research or concern over PPE? Why no research into ME/cfs especially now with Long Covid who fall into the PEM and ME diagnosis.

Being a carer of a severely effected young person from the age of 8 who is now 18, I have had to fight to be heard every second of every day. I have had to find how to support and care for my son without proper data or research. I know more about ME and PEM than that of the professionals I meet and yet I am silenced. Mine and millions of others lived experience can tell us so much about post viral disease and the consequences of not giving the proper understanding and treatment. How misinformation and disinformation by professionals, journalists and politicians have impacted in such an egregious way.

Should the Covid Enquiry demand a full enquiry into the history of failure, especially of the PACE trial involvement, which allowed in opinion and bias against the science and evidence of the lived experience of those who have had to live alone with a chronic and devastating post viral disability? We should examine why Sir Mark Walport and others have not taken down the pace trial and other such harmful papers.

The impact on me, my family, and my son of the Covid epidemic is beyond words. First trauma of knowing what was about to happen, the lack of professionals to meet the needs of those left with ME and PEM. I often wrote “my heart fills with shame and tears” because I knew what was to come. The inappropriate research and rehabilitation centres, the false accusations on parent carers like me. The misuse of funds the denial of education and all the trauma of waking up to the next fight against injustice, discrimination, scrutiny and misinformation or disinformation from those we should trust.

If the Inquiry into the status of cfs/ME and research into the causes and treatment, published in 2006 had been followed up with proper long-term data; including autopsy and biomedical research needs to be discussed openly now?  Would we or should we have been in a better place to fight covid deaths, support and save those with Covid damage and Long Covid. If the PACE trial had been thoroughly reviewed by an independent inquiry after the court case, what lessons could have been learnt and what still could be learnt.

The ME community was fighting in October 2021 the biopsychosocial model holding on to the status quo in the ME pathway. This was extraordinary in a pandemic with many coming down with ME and PEM with no symptoms or hospital admissions. Peter Todd was preparing legal aid for a young man to force NICE to follow procedure and release the New Guidelines.

With the Will Quince review now underway into ME, this review will not change the bias or the disregard to those devastated by this pandemic. Without taking down the PACE trial no clear understanding of ME and PEM will be gained. This Governments support to Functional Neurological Disorder introducing IAPT and Medically Unexplained Symptoms with many in the medical profession stating NICE is just a guideline, those that could be saved from long term disability and be able to recover, is going to be taken away from them, as it was with my son 10 years ago.

We need to stop the ability of bias opinion over science, excluding evidence quoting the PACE trial to do so. We need to combine the knowledge of postmortem, data and lived experience to be given the respect so often talked about but not acted upon.

For me and the millions missing this is the story of Covid, the trauma and disregard of the lived experience and to the known medical facts.

How is the PEM 3 Days in

 

How is the PEM going after the exam, well it normally takes 4 days for Angus to experience the full impact of his Post Exertional Malaise (PEM). PEM simply means an increase in symptoms and a decrease in ability to be active, things like listening and reading are affected when in a PEM state. His exam was on 23^rd May 2023, this was written on the 26^th.

I want you to come along on the journey with me. There are 101 reasons why but taking you with us as we journey through the impact of PEM, I hope you will learn something useful and understand us more.  

So far, he has been fooling around the house with the extra adrenalin, talking to his mates and watching a movie on his laptop with them on Face Time. I’m going to try to tell you of the double edge sword of these moments. After 10 years of living through the complex cycle of PEM, I hold on to those moments of who he really is and marvel at the young man who has had to learn to wear expertly the mask of normality.

I have spent most of the time giggling at his antics, like a ghostly entity that swoons around the house in a cloud of contented energy, silent and unseen, as he roams outside and looks in at the windows with funny and googly faces. I have learnt over the time of his illness that these moments of normal life, is to be savored. Not hoped for with by every fiber in my body, as I once did because the pain of the let down as he progressively slips into pain and suffering of PEM, is too much for my heart to take.

Sadly, with every inch of mindfulness I try to possess so that I can curb this innate response to my child’s contented ownership of time, to shout out that recovery is here. I never can use that mask of mindfulness and hide behind positivity because that positivity has broken me many times before.

Living with someone who has severe PEM is like living with someone who has periodic Alzheimer’s. You can’t ask questions because they get lost, they slip through the gaps in the brain forged by dysregulation of every system in his body. You have to second guess what is needed, wanted, or the question they need answering.

Angus uses FaceTime to ask for help when his pain is bad, and his heart rate is bouncing around his chest like an excited monkey.

It goes something like this he calls me on FaceTime.

Me “you ok”

Angus “you’re talking too loud”

Me “sorry”

Angus “what did you want mum?”

Me “you rang me”

With frustration he ends the call only to reconnect a couple of seconds later. By this time, I figured that he needs water, it could be food but I’m guessing it is water.

I answer with a softer voice “would you like me to bring up water?”

Angus “what?”

Me “Water?” at this point, less words means a better outcome”.

Angus “Yes”

It is a weird experience when the person you know changes in a flash from someone who is verbally articulate, to one that is unable to communicate a simple need such as - needing water. It comes with so much frustration from us both, but it always makes me giggle a little. How funny our existence is now.

I take the water up and then lay by him in bed. I feel there is something going on that I had not picked up and he needed time to get his brain to work out what it was. He drank 2-3 glasses of water straight down; I could see the dry lips already taking shape. He then took me through a question he had in the exam. He spoke fast and in a fragmented way. It was like being fired at by one of those tennis ball flinger things, with someone changing the direction and speed. Then it happened, the full flow of what I can only describe as intelligence on another level, coherent and concise. I know at this point I cannot interrupt him or ask questions, but to keep up as best as I can because he will be giving me a test at the end of it all.

He took another gulp of water and asked, “Well what do you think? Did I do alright on that question”.

My first thought was, if you answered as you had in the last bit of the information he just articulated then yep; if only I knew what the question was.. However, if it was like the first part of your explanation then I have no idea. What I actually said was “I’m not an examiner but it sounded amazing to me”.

“Not helpful mum”.

“I know but it’s the best I can do”. It’s his laugh that has me in a contented lull of life. He knows me better than I know myself, I think.

He then informed me he needed to space out and chill listening to audible, his only way of switching off his brain a little, to help with energy saving.

“Where are your ear buds I asked”.

“Under the bed I’ll get them in a minute”.

I know this would be too much for him, I looked under the bed and there they were at the furthest point, against a wall. I got the grabber thing we use as I am short, and our cupboards are tall it is a very useful tool for many occasions.

I have the most horrendous uncontrollable laugh ever possessed as a giggle morphed in to a belly laugh. There I was stuck by both my north and south appendages, under a bed with a grabber thing, trying hard to fling out or grab 2 very small and slippery earbuds. We both ended in hysterics.

Obviously, I did get unstuck in the end and yes Angus did video my heroic effort. A kept moment that I will constantly look back on. However. Having fun and being normal can make you feel a fraud. You are either ill or not, there is no area in between where life lurks a little.

I know we should grab every occasion to laugh as hard as we can, we deserve it after all. But laughing never ever makes up for the loss we face on a daily basis, nor does it stop me or Angus from having to wear a normal mask because the public and medical fraternity demand it and neither can they deal with the reality of chronically illness.

To constantly be positive is positively harmful though and although there is no crime in having fun and laughing spontaneously society can make you feel as if you are chronically ill you have to prove it every second of every day. More importantly is that it is OK to show the world what it is to live with illness that takes your life, dreams away and for society to accept it.

 

 

Angus sat 2^nd part of his GCSE exam 23^rd May 2023. He is 18 and has only managed to do 2 others, this will be his 3^rd. His tutor has always said that he is bright enough to go to uni and have good grades in A level to support this.  How must it feel to him to be doing easier work than his ability show he is capable of.

The frustration of not being able to recharge his body for proper quality learning, with a good basis of revision, grows ever stronger as his energy seeps through his brain like sand through a time piece. His fear is that if this happens in an exam, that loss of time as his brain crashes will be such a waste of his health. The sacrifice he has made is immense.  There was once a system where these problems were understood and instead of exam work you could put in your work through the year. There is no such level playing field in education for disabled young people now. We seem to have gone backwards in our understanding of need.

He has had no medical support, no recognition for his deep PEM and how that is a danger to his health or looking for the treatments known to alleviate symptoms to safeguard his health. The funding for care is not provided by the government to GPs, so why should doctors find the funds for his care out of their pocket?

This government are only prepared to promote ME as mental health condition. They have funded psychological research and treatments only. I wonder how that impacts on Angus’s view on society. Will this ever change with any party?

For me the fear of having nowhere to turn when his physical health declines, as he pushes to do work is frightening. It is intensified with knowing his physical disease is denied, so when medical attention is needed, he is only looked at as an anxiety driven recluse of his own choosing. I shudder as I know how that impacts on him as a person. Discrimination in medical history is there for all to see.

The extra mental energy he has been using; little as it is, has activated all of the disregulations ME sufferers know only too well. It’s not just the increase in pain that impacts him, it is the fact he no longer can think coherently, and the world turns on him because of his disease.

We have no way of knowing how long this increase in severity will last or if he will ever recover to his former abilities. It is understood by millions of those that have ME and now Long Covid but is not recognised in the GP surgeries around the UK or the CFS clinics. How does that happen in 2023 when we have known since the 1800s what this disease is. The idea that we are progressive in medicine is so wrong and that Mental Health is understood is a misnomer, because if they determine ME is mental health issue, they have no understanding at all.

My thoughts are with everyone who are in the process of taking exams, be kind to yourself and you have big marshmallow hugs from me.

To those with ME, PEM and Long Covid you are true heroes and the results do not show your real talent, but I for one recognise your ability to shine through adversity and I am in awe of you all.

Dear Laurie Taylor and the BBC

 

Dear Laurie Taylor,

I have listened to your show for many years. Working at home enables me to prepare a meal for the family at the time your show comes on. It is thought provoking and on the whole balanced on the side of the professional that should know better than the - put down and silenced public.

After listening to your weekly show on Wednesday 4^th January 2023, I thought the time has come to write in and explain the reality of social conditioning; with its foundation in the belief that the patient is to blame, the marketing and gatekeeping of wellness-based healthcare by a few that have the ear of the Government and the DWP. The connection here between psychiatry, the pace trial and health is discussed by Brian Hughes (hughes, 2021), the damage of the Mental Health practitioners who are taught Medically Unexplained Symptoms (MUS) but don’t understand the autoimmune response after viral infections. Jackson and Kroenke discuss the issue of not looking further than MUS  (Jackson & Kroenke, 2006) after reading this look at the list of autoimmune diseases and the complications of not addressing or understanding post viral diseases, which needs to be discussed on your program in Covid times.

The impact on mental health and autoimmune is well known the inflamed brain is also well known but ignored Edward Bullmore discusses this in his book (Bullmore, 2018). Edward Bullmore MB PHD FRCP FMedSci trained in medicine at the university of Oxford and St Bartholomew’s Hospital, London; then in psychiatry at the Bethlem Royal and Maudsley Hospital who has just published a new paper (lynall , et al., 2022) on the Genetic variants associated with psychiatric disorders are enriched at epigenetically active sites in lymphoid cells.

To understanding complexities of post viral conditions such as Long Covid and ME and the work to dismiss the long-term impacts on health and mental wellbeing, you need to understand the ever-changing names such as Functional Neurological Disorders; once called conversion disorder or Medically Unexplained Syndrome which again was once called somatization disorder, and how these impacts on the NHS and care. We should know enough about infections by now to understand the damage done. What has AIDS, Celiac, Migraines, rheumatoid Arthritis, Stomach Ulcers, and diabetes taught us?

You once had a program on the placebo effect, where you called people like me activists, you also used the term cfs another way of hiding the disease that Myalgic Encephalomyelitis (ME) is known to be.  You used this terminology again as some sort of derogatory label on Wednesday’s program, a put down, which I find offensive.

I wanted to explain why a difference of opinion in science, does not mean the patient/advocate or as you put it activists are wrong. The harm of demanding mental health over physical disease, has been written down over hundreds of years. Science should be based on “prove you are wrong and if you can’t then you must be right”. To use this in its proper context, first you must explore all the facts and possibilities and not rely on the foundation of opinion without the lived experience, which mental health has done with ME.

First and foremost, the derogatory term of “activist” was used on women suffragettes. Since this time women have been fighting against mental health disorders to get the right information and the right healthcare - just look at heart attacks and endometriosis with long history of social conditioning that women have “mental liabilities”.

The word activist has been used on advocates like me, who have made changes for those with autism that were put and still are in asylums or as we now know them as homes, and those who suffered from many; now known conditions that are still medical unexplained but accepted like diabetes and celiac disease.  On Wednesday’s program it was pointed out how women are targeted and held to account by society with the mind, body, wellness beliefs that have infiltrated our healthcare.  This impacts women like me, who become mothers that have children who dramatically decline into disability, with no real testing, empathy or understanding - just judgment and opinion that goes against all the science. A nurse who looked back on the Royal Free outbreak takes us through the transference of medically accepted understanding to mental health opinion used for political purposes (Ovenden, 2004) what we saw back then is being repeated again with ME and Covid.

My son was 8 when he had an obvious post viral condition, his blood showed signs that were ignored of celiac disease, which was two years later picked up. However, there were other signs of his body under stress. Instead of testing and looking for physical disease, they gave me their opinion and him CBT and dismissed his physical symptoms as somatic disorder. The harm inflicted on him is there for all to see in his lived experience, the history of medicine, and by thousands of others over decades that have been treated just like my son, starting most notably from the time of the Royal Free outbreak.

This has led to a difficult situation and long-term physical and mental care problems, not only for my son but also to me. Being accused of Fabricating or Inducing Illness (FII) is hard to fight when family courts only have to think you may cause emotional harm in order to take your child away, backed by opinion with no evidence. If a mother restricts a diet for instance, she is automatically assumed guilty even with Drs notes giving clear evidence of autoimmune diseases. Unbelievable you would think but the evidence is all around us. It is written in case studies, in the voices of the young people able to speak out on social media. How many are hidden that are frightened and fighting for the truth.

Please stop using inflammatory words such as activist, when you have not fully understood the problems by alluding to those who are on the internet or on social media. We have seen the damage when a general opinion about misinformation is put out by journalists, professionals, and medical professionals the PACE trial shows this. You did touch on professional misinformation but I feel you need a program to look further into this. We need robust understating of what wellness and mental health is going forward especially when evidence points to the reality spoken by activists like me.

You also stated about abuse on the medical professionals from advocates in the ME community on the program about the placebo program. However, this has been disproven and the last time this accusation was used on the ME community it was by Professor Crawley who held up a poster done by an artist who asked Professor Crawley not to use his work in her TED talk. Fabrication in the medical world it would seem is allowed, but those using science and facts are called FII supporters or activists, so please put the record straight, the facts are here (Lowe, 2017)

Remember science, healthcare providers the government get it wrong and do politicly chose to misinform the public and there is a balance that needs to be met here by respected people like yourself, it is your duty, especially as we go through this difficult pandemic time. Patients can be more informed about their condition than those who say they treat the condition.

As a balance and redress of the issues I have raised around activism, wellness, and healthcare in this letter it would be good to have Brian Hughes who is an academic psychologist and university professor in Galway Ireland. He specialises in stress, health, and the application of psychology to social issues. He has written widely on the psychology of empiricism and of empirically disputable claims especially as they pertain to science, health , medicine and politics. Along with Edward Bullmore MB PHD FRCP FMedSci the balance of our understanding, thinking and wellbeing would be balanced with what we know.

If you could let me know in good time, when this much need balanced program is to be aired, I would be grateful. We all have to take responsibility for the facts of science to protect the population and patients in particular – Health is a balance of diet, social standing, environment, physical and mental impacting on genetics stressors and should be seen as a whole, not in part or bias opinion.

 

Yours Sincerely

 

Tina Rodwell