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The Never Ending Story of Long Covid

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Some of you will already be aware that I have Long Covid, and that hampers my activity here on the blog. My primary focus is on my writing and translation clients, and there is often no energy left in the pot for other writing activities. For those of you not aware of the Long Covid troubles, bij deze, as the Dutch say.

I haven’t written about our journey with Long Covid for a couple of years now, but it is something I have been wanting to write about. A lot has happened in the space of those years, and not much of it positive. Today I have some energy and the brain fog is as minimal as it gets.

Our Long Covid Story

You can read about the start of my family’s Long Covid story here: Getting Help for Long Covid in the Netherlands. That was written back in May 2022, a couple of months after my husband, my middle son and I got reinfected with Covid. Whilst my husband recovered from the virus and got on with life, my son and I deteriorated rapidly and notably. The Long Covid got worse and worse. Today, as we slide towards the end of February 2024, things are not much better.

Treatment for Long Covid in the Netherlands: Physiotherapy

I think the best way to tell our story of Long Covid is by means of sharing the treatment routes we have been through since 2020, but more notably last year and so far this year.

In 2020, the GP referred Long Covid patients to a physiotherapist. The aim of the physiotherapist was to slowly build up exercise tolerance, based on the idea that the intense fatigue that Long Covid brings with it could be beaten into submission with minutes on a treadmill or exercise bike. In other words, Long Covid is the result of deconditioning, a loss of fitness. In September 2020, I had six months of physio. This entailed very gentle exercise and many breathing exercises. By the end of the six months there was minor improvement. I would say I was back to about 60% of my previous life, but the symptoms never went away.

Months after my reinfection I was clearly going downhill fast and I went back to my GP. He sent me back to the physio. This time around the impact of the physio sessions was different. After every session I spent days in bed or on the sofa. I felt physically wrung out. Physio sessions then focused solely on breathing exercises and relaxation techniques. There was no treadmill, rowing machine or exercise bike. The act of cycling to my appointments became too much. At the end of 2022, my physio announced that there was literally nothing more she could do for me and I should go back to the GP. Which I did.

Treatment for Long Covid in the Netherlands: Psychosomatisch Oefentherapeut

My GP referred me to a psychosomatisch oefentherapeut. Basically, more focus on stress, tension and thought patterns relating to the ‘unexplained symptoms’. In essence, she introduced yet another form of Graded Exercise Therapy (GET), which I told her would not work as that had already been tried and by now I was aware I had developed PEM (post-exertional malaise) after my reinfection. We struggled through a couple of appointments but I was wholly aware this was the wrong path – simply because the symptoms are not stress related nor the result of how I think about my symptoms. As much as I can want the symptoms to disappear, I cannot force PEM to take a back seat. The therapist did not get this at all. Absolutely no understanding of Long Covid or PEM.

The Problem with PEM

We all know that exercise is good for you. As a recovery tool, health professionals heavily prescribe GET. And for many patients, it is effective.

However, if you throw PEM into the mix, GET does harm. In January 2024, Rob Wust et al published research results indicating the physical impact of exercise on those with PEM. In other words, the exacerbated symptoms that patients face following a GET program are not imagined. As many media outlets reported it, ‘Het zit niet tussen de oren‘.

If I entered a physiotherapist’s practice with my leg in plaster, the therapist wouldn’t tell me to hop up onto the treadmill. But PEM symptoms happen after an appointment and are rarely seen by the health practitioner. (More on this below)

Treatment for Long Covid in the Netherlands: Next?

So after much frustration, I went back to my GP in January 2023 for alternative help. He quite literally shrugged his shoulders and said Long Covid is new so he had no further avenues for me. And since then I have been on my own with continuing symptoms. Oh, aside from going back to him about some serious dizziness, which he concluded was not blood pressure related – and that was that. Getting referred to any specialist has been a no goer. I have had a blood test (low Vitamin D, as is the case with so many Long Covid patients) but that is the extent of it.

There is Simply Nowhere to Go

I have regular contact with C-Support, now my only line of support along with Long Covid Facebook groups. The advice from my contact there has been invaluable through the years. Quite frankly, my contact person there is the only person that actually understands the impact of Long Covid and the problems the ‘treatments’ offered within the Dutch healthcare system cause for patients, particularly those with PEM. He has stated all along that the only thing that helps patients with PEM at this time is pacing (i.e. energy management). Fatigue (which underplays the symptom) however, is only one of many symptoms. Tackling individual Long Covid symptoms is also possible, says C-support, but something that is invariably not happening in the Netherlands.

So for the last year I have been on my own to cope with Long Covid. I pace. My world has become small. We don’t plan far ahead. We take each day as it comes.

The Never Ending Story of Long Covid

Long Covid Clinics

Medical professionals have long been calling for Long Covid expertise centres to be set up in the Netherlands. Pooling expertise. Establishing a single centre for patients to go to, instead of being passed from specialist to specialist who invariably can find nothing unusual relating to their particular field of expertise (Long Covid is a multi-system condition). Dutch Parliament voted two weeks ago to set these centres up. How long this will take is the question. And how many of the estimated 90,000 seriously impacted patients will be seen within a reasonable time frame is the other.

Children with Long Covid

Our GP was more inclined to send our two children to a specialist to rule out other health conditions when their Long Covid story started. I highlighted their journey up until May 2022 in an earlier post. However, their story since has continued.

Firstly, the good news. My now 12-year-old has made a significant recovery. He still has relapses when he overdoes it, his life is still all about pacing. But we have largely found the balance to keep him on his feet. I would say he’s back to about 90% of his pre-Covid self.

The bad news is that my 13-year-old has only gone backwards. His life is essentially on hold. Having struggled more than ever since reinfection in 2022, he has been up and down, mainly down. He’s operating at about 20% of his pre-Covid life.

Treatment for Children with Long Covid: Physiotherapy & GET

In January 2023, he started seeing a physiotherapist who was a Long Covid ‘expert’, who knew how to help children with Long Covid. This was step one of a referral to a revalidatie program. The first session was very clearly setting up a GET program. I informed her of my issue with such a program. I talked about PEM. Slowly, slowly, she said. At some point in February she came to the conclusion that physiotherapy, that GET, was causing him more harm than good. She saw him getting worse in front of her eyes, and she was shocked. And that she was stopping with immediate effect, he just wasn’t up to it.

This segment from a KASSA episode about children with Long Covid explains what we experienced. The medical psychologist explains here that they quickly arrived at the conclusion in the Amsterdam poli that GET did harm and they stopped it. The message, however, didn’t get round to the rest of the country. And still hasn’t. Years later.

Treatment for Children with Long Covid: Rehabilitation

The revalidatie company then proposed an appointment in Arnhem to talk about their rehabilitation program. Which we did. At all times we have been open minded and open to all possible avenues. We came out of that appointment shellshocked. The specialist knew nothing about Long Covid, nothing about PEM, had never heard of C-Support and quite frankly it didn’t matter to him what condition my son had. The program would be the same whether it was a teenage burnout or Long Covid with PEM. They were going to admit him for three months, purposely push him over his limits and see where it led. It was obviously a loud no from us, and more importantly, from my son.

We retreated for a while from any further medical interventions.

Rest and Recuperation

After a summer of rest, we saw huge improvements. Once the new school year started, he wanted to try cycling to school once a week, attend all lessons in school every day and do his football. And for two months, it worked reasonably well. But he, like so many other children, caught virus after virus, fought one or two off and then a virus floored him. And he plummeted back down to nothing.

Relapse

My child spent most of November and December 2023, and some of January 2024 in bed or on the sofa, notably with debilitating headaches. We have been back and forth to his paediatrician. He has seen a neurologist, had an MRI, is now on migraine medication. It helps marginally, but headaches are a daily thing. At a loss on what more to do, his paediatrician referred him to another children’s hospital, where a Long Covid ‘expert’ would supposedly look at his case from a biomedical perspective. In reality, the recommendation was by and large more CBT and GET. There was nothing biomedical about it. We go round in circles.

This springs to mind:

“Insanity is doing the same thing over and over and expecting different results.”

Treatment for Children with Long Covid: Medical Psychologist

Since 2022, my son has been assigned a psychologist. He is currently under the care of a medical psychologist. She has been helping with pacing, acceptance and keeping him afloat in terms of his mood. (Because let’s face it, being 13 and having your life on hold is bloody hard). She recently suggested, in the midst of his clambering back up from his relapse, that he start seeing a physiotherapist, to build up the cycling so he could cycle to school (because of the issues with transport to school). Yep, GET. Insert the appropriate emoji here and utter the quote above over and over. This was actually the same week as the KASSA episode linked above where we got to hear that GET isn’t done for Long Covid patients anymore……

CBT (Cognitive Behavioural Therapy)

CBT, along with GET, is a popular path that medical practitioners send Long Covid sufferers down.

Cognitive behavioural therapy (CBT) is a talking therapy that can help you manage your problems by changing the way you think and behave.

It’s most commonly used to treat anxiety and depression, but can be useful for other mental and physical health problems.

CBT is also sometimes used to treat people with long-term health conditions, such as:

Although CBT cannot cure the physical symptoms of these conditions, it can help people cope better with their symptoms.

NHS

Unfortunately, talking about Long Covid symptoms does not make they go away, nor does it alleviate them. For some people it may help with acceptance. But that is the extent of it. However, if the medical specialists we have seen are to be believed, CBT is a route to expelling symptoms. In other words, the symptoms are in our head, or as the Dutch put it, ‘tussen de oren‘.

Don’t get me wrong CBT has its place for sure, but not as a treatment for Long Covid. And no one will convince me otherwise.

Post-Acute Infection Syndrome (PAIS)

Long Covid is actually not a new kid on the block.

Many chronic illnesses have been largely ignored, dismissed, and ridiculed. Long COVID has taught the world that these diseases are real, there is a biological basis for them, and we need to study them.

Akiko Iwasaki, PhD

Long Covid is a PAIS. In essence, a chronic condition that occurs as a result of an infection. That could be viral, bacterial or parasitic. Examples of PAIS are those resulting from Lyme disease and Q fever, or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). And now Long Covid.

The problem is that ME/CFS patients, to take one example, have been gaslighted by medical professionals for decades. The medical world has failed to take their symptoms seriously. Long Covid has cracked open the door a little, and medical professionals, and researchers, are starting to take the idea of PAIS more seriously. The economic cost of Long Covid alone has helped in this respect. Workers are being forced to withdraw en masse from the employment market. Money talks. So politicians prick their ears up.

The sheer numbers around the world of those with Long Covid in such a short time frame mean that research studies into PAIS is being seen in larger numbers and hitting the media on what seems like a daily basis. Baby steps, possible theories, possible ways forward.

Currently….

This month (February 2024), my son has started clambering his way back up and is currently doing a couple of lessons per day in school (some online, some physically in school). And this is about all he does in a day. He is currently stable. But his life is practically on hold. And as it currently stands, the only options open to him are physiotherapy and CBT. Whilst I am aware that physiotherapists that understand PEM and the importance of pacing can support Long Covid symptoms, we are yet to find such a therapist here. To say that the trust in physiotherapists has been depleted is an understatement. As for CBT, my 13-year-old does not need anyone to convince him that he needs to get up from the sofa and get on a football pitch or cycle to school – there is nothing in the world he wants more.

Long Covid Resources

Here’a a list of where to go if you need help with Long Covid or more information:

The Netherlands (Dutch resources)

English Language Resources

Feel free to contact me if you are in a similar situation and want to know more, or want a listening ear.

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