The Guardian. Series of articles about people’s lives with long Covid

[SNT Gatchaman]

Guardian: Childhood, interrupted: 12-year-old Toby’s life with long Covid

More than 110,000 children in England and Scotland are still suffering. For Toby, it has meant pain, crushing fatigue and sadness – as well as months off school

Another in the Guardian's LC Series.

Toby has an older sister, Isabel, 15, who also has long Covid, although she’s now doing better; they reckon she is about 85% recovered. She’s at school today (and anyway, she’s quite private and way too cool to want to be in the paper with her family).

Toby’s having a good day. He even went to school. “I haven’t really been in for the last two or three months, but the last two weeks I’ve gone in during the lunchtime. Not to go into any lesson but for form time.” What was it like? Was it good to see people? “It was amazing,” he smiles, especially to see his best mate, Louis, even if he does see Louis most days online – they play Minecraft together.

A couple of days later I’m back in touch with Sarah and Simon, by email. I meant to ask them for a pre-Covid photo of Toby. They tell me he has had a big crash since our interview: heart rate variability right down, resting heart rate up, he’s floppy, on the sofa, not doing much.

I feel responsible – the interview was too much for Toby. “We thought he was well enough to do 20 minutes of school AND a chat, but we were wrong,” writes Sarah. “We have to make these micro-decisions every single day and we’re never going to get them all right. We have to not beat ourselves up when we don’t. His symptoms seem to be changing and we’re completely stumped as to what’s going on now.”

 

[Jonathan Edwards]

I think there may be quite significant repercussions for Dr Kane over this.
Giving untested anticoagulant therapy to children outside formal trials seems to me unjustifiable.
We need to stick to evidence.

 

[Trish]

I agree there's cause for concern.

Suggesting private treatment has something useful to offer for kids with Long Covid is wrong. Nobody knows what to do other than pacing and avoiding reinfection.

Specifically anticoagulants, which may be dangerous, and rehabilitation which tends to imply increasing activity are not evidence based.

There are good thing about the article too:
The need for more protective measures against reinfection.
The complete inappropriateness of laws that say local authorities can harass and fine parents whose kids are too sick to go to school.
And the reality of PEM.

 

[Jonathan Edwards]

There are good thing about the article too:

I agree.

My concern is that the reference to untested treatments will make it only too easy for health professionals to say to themselves - 'Uh-huh, so another of those false belief situations'.

The journalist presumably thinks that they are championing the case of people with LC but they may be creating the opposite effect. It seems extraordinarily difficult to get mass media journalists to understand how what they write may impact the real situation.

 

[Robert 1973]

There is also this quote:

“Patients should be getting ongoing support and rehab, says Kane.”

It’s good to read a sympathetic article in the Guardian – in stark contrast to its historic coverage of ME/CFS – but the implication that there are scientifically validated private treatments that are not available on the NHS is not helpful.

 

[Eleanor]

Because Sarah and Simon can afford it [private treatment with blood-thinners], one of their kids is getting better.

or maybe she's just getting better.

 

[Nightsong]

The article does a really good job of presenting how an ordinary family's life can be overturned by all of this, how intransigent bureaucracies can be, how little support there is from the NHS, and how isolating it is, especially for a child. And so few articles demonstrate just how, as a pwME (or a parent of a pwME) you have to make hundreds of micro-decisions each day, each and every one of which can have a significant effect on your health: 20 minutes of an activity? Fine. A chat? Fine. 20 minutes of an activity and a chat? Wiped out with PEM.

It seems that the most dubious paragraph has been removed from the latest version of the article.

One potentially interesting point:

She says long Covid in adults and children seems to be similar. “I think the main difference is in how it affects the nervous system. Because in kids, you’ve got a developing brain, so their brain manifestations tend to be a little bit different. But other than that … I would say there are more commonalities than differences.”

The speculation about developing brains aside, are there any non-trivial differences in how LC or ME presents in children vs adults? I don't think I've seen any reliable data on this.

 

[Robert 1973]

It seems that the most dubious paragraph has been removed from the latest version of the article.

Yes, it seems to have been amended for the better:

Crucially, they have been able to fund private health care. “Which means at least one child of ours is doing much better than lots of children out there.” Both Isabel and Toby have been treated by Dr Kane alongside a paediatric cardiologist. Isabel has made improvements since receiving blood thinning medication, on advice from the cardiologist, to inhibit “microclots”, which they believe stop oxygen getting around the body as it should and could be one reason behind some of the symptoms of long Covid, including severe fatigue and pain.

Unfortunately, I don’t have a copy of the original article to compare so I’m relying on memory.

At the end of the article it now says: “This article was amended on 12 June 2024. Text was added to clarify that a paediatric cardiologist has also been involved, alongside Dr Kane, in Toby’s care and treatment.”

It’s a shame it doesn’t mention the amendments pertaining to “microclots” and treatments but it’s good that they appear to have listened to feedback and made changes – which they never did with BPS articles.

[edited for clarity]

 

[Jonathan Edwards]

It looks to me as if someone has twigged to the potentially very serious issue of Dr Kane being seen to be treating children without paediatric training. A paediatric cardiologist has agreed to take the responsibility. I think this may be an uncomfortable ride for some for a while.

Has the rest of it changed much though? I can't work out. I thin anticoagulant has changed to blood thinning. Not sure what else other than the involvement of another doctor.

 

[Nightsong]

I've pulled a copy of the old article from my browser's cache. Here's the diff:

< Crucially, they have been able to fund private health care. “Which means at least one child of ours is doing much better than lots of children out there.” Both Isabel and Toby have been treated by Dr Kane. Isabel has made improvements since receiving triple anticoagulant therapy to inhibit “microclots”, which stop oxygen getting around the body as it should. This is believed to be one reason behind some of the symptoms of long Covid, including severe fatigue and pain.
> Crucially, they have been able to fund private health care. “Which means at least one child of ours is doing much better than lots of children out there.” Both Isabel and Toby have been treated by Dr Kane alongside a paediatric cardiologist. Isabel has made improvements since receiving blood thinning medication, on advice from the cardiologist, to inhibit “microclots”, which they believe stop oxygen getting around the body as it should and could be one reason behind some of the symptoms of long Covid, including severe fatigue and pain.

> This article was amended on 12 June 2024. Text was added to clarify that a paediatric cardiologist has also been involved, alongside Dr Kane, in Toby’s care and treatment.

That is a welcome change as many desperate pwLC might be tempted to seek out inappropriate therapies on the basis of such anecdotes. Not enough, but...

Also if I recall correctly "triple therapy" means an anticoagulant coupled with two antiplatelet agents (sometimes used for unstable angina or MIs) which would represent a higher bleeding risk than anticoagulant monotherapy.

(Edited a little for clarity.)

 

[Jonathan Edwards]

Thanks, yes it is softened in a few ways, but I still think problematic.

 

[Kitty]

Thanks, yes it is softened in a few ways, but I still think problematic.

In addition to the ethical issues here, reports like this should always say very clearly that a proportion of pwLC (including children) will eventually recover without any treatment.

 

[Andy]

Latest Guardian article about a Long Covid sufferer.

‘A 30-second walk would exhaust me beyond reason’: Natacha’s life with long Covid

Her GP diagnosed long Covid, and the local long Covid clinic gave her some fatigue management video lessons, and later some sessions with a physiotherapist, who taught her how to increase her energy levels. “We started with 30-second walks that would exhaust me beyond reason.” Another GP told her she had chronic fatigue syndrome. “He said it was lifelong and there was nothing I could do about it really. That sent me into a downward spiral.”

Fortunately, the long Covid clinic didn’t agree with the second GP, and Natacha was referred to a therapist for counselling, which she says saved her. “It’s difficult to describe long Covid simply, but if it is one thing, it is heartbreaking. I was unable to work, think, move. My only exercise would be getting to the couch in the morning, trips to the bathroom during the day, and going back to my bed in the evening. Often I would collapse on these tiny trips, and someone would have to pick me up off the floor.”

The progress Natacha has made, she feels, is down to them figuring it out for themselves – what to do, diet, exercise and so on. She hasn’t been impressed with the treatment and support from the health service. A referral to a cardiologist simply never materialised. “The NHS long Covid system was slow and there was very little of it,” she says. Yes, she had some counselling, but it took a year to get it and now she’s not seeing anyone. She has family abroad (her mother is French), “And everyone goes: ‘You’re not seeing your doctor? They’re not checking-up on you?’ It seems they’re doing very little here compared with other countries.”

It’s not just the NHS that Natacha takes issue with but the whole government response. She thinks that people like her have been forgotten and abandoned, that long Covid has been brushed under the carpet. “If I had had more support, I wouldn’t have tried to force myself back to work after four weeks off, because I had to,” she says. “That probably tanked my health.”

She ended up leaving that job, because she couldn’t do it even while working from home on the couch. Then she was rejected for both disability living allowance and mobility allowance. “Why? Because I’m not receiving any treatment or any medication and I haven’t had a crash for a while. I’m not receiving treatment or medication because there isn’t any and I’m not crashing because we have spent the last few years figuring out how to avoid crashes,” she says.

https://www.theguardian.com/society...would-exhaust-me-natacha-life-with-long-covid

 

[Eleanor]

Paul Garner is a signatory to one of the letters responding to the article about Toby here https://www.theguardian.com/society...ren-with-long-covid-and-theories-on-its-cause

At least the letter itself doesn't include any psychosomatic waffle, although it links to the Oslo Consortium guff.

 

[RaviHVJ]

I agree there's cause for concern.

Suggesting private treatment has something useful to offer for kids with Long Covid is wrong. Nobody knows what to do other than pacing and avoiding reinfection.

Specifically anticoagulants, which may be dangerous, and rehabilitation which tends to imply increasing activity are not evidence based.

There are good thing about the article too:
The need for more protective measures against reinfection.
The complete inappropriateness of laws that say local authorities can harass and fine parents whose kids are too sick to go to school.
And the reality of PEM.

I've ended up going to a couple of private Long Covid doctors this past year after doing everything via the NHS for the first two years of the illness, and sadly I do think private treatments have a fair bit to offer Long Covid patients - they just don't have anything to offer those whose Long Covid is largely ME. The private UK doctors seem to focus on treating adjacent conditions - primarily POTS but also MCAS. For POTS, through the NHS if you're lucky (as I was), you might be able to get beta blockers after a few months. If I wanted to get ivabradine, I would've had to wait about 15 months from the moment of my initial referral to an autonomic unit. And of course, there are many Long Covid clinics that will offer absolutely nothing in terms of POTS and will either just discharge you if you're not getting better or throw some CBT/GET/mind-body nonsense at you. The private doctors will give you quite a wide selection of potential POTS drugs - beta blockers, ivabradine, mestinon, fludrocortisone, midodrine (I'm basing this off my experience with 2 doctors and what I've heard from the grapevine). They'll offer similar symptomatic treatments for MCAS, which I don't have so know very little about.

The thing is that Long Covid is a much broader category than ME, so there are certain subsets where doctors can actually offer a variety of symptomatic treatments that would either be inaccessible on the NHS or would take a very, very long time.

There are also then experimental treatments that are only available privately - stuff like HBOT, triple anti-coagulant therapy, stellate ganglion blocks, and so on. Some of these would claim to target ME, but I have very significant doubts. This is a greyer area than what I've laid out above.

 

[Trish]

Fair point, @RaviHVJ, I was referring to treatments that are not prescribed on the NHS that have no basis. I also know someone in another country with Long Covid who has been helped by doctors concentrating on POTS treatments particularly.

 

[RaviHVJ]

Fair point, @RaviHVJ, I was referring to treatments that are not prescribed on the NHS that have no basis. I also know someone in another country with Long Covid who has been helped by doctors concentrating on POTS treatments particularly.

Really fair - I deteriorated because of a doctor like that. A year in, I listened to a podcast with a doctor who claimed that hyperbaric oxygen therapy had cured every Long Covid patient he'd seen. I was 23 and desperate to get better, so I turned off all my critical faculties. I travelled from London to Rugby for a month, getting the treatment 5 days a week (I'd go back to London on the weekends) and using up a huge proportion of my savings. Up to that point, I'd paced really quite intensely, but I stopped pacing in the way I had because this doctor was so certain that he'd cure me. After 4 weeks, I deteriorated from moderate to the cusp of severe, and have experienced virtually no improvement since.

The doctor's intentions weren't evil, and he was an NHS consultant - the hyperbaric oxygen centre was an NHS facility for divers. But he had far too much faith in the treatment, and HBOT does inspire that kind of faith as it exists in a slightly alternative medicine setting, at least when it's not being used on divers suffering from the bends.

So I suppose the balance is - NHS Long Covid clinics that aren't BPS or mind-body are unlikely to do any harm. Going private may lead to much faster and much better treatments for adjacent conditions, but you have to have your wits about you and not be overly trusting, particularly when it comes to experimental treatments. (I’m also very fortunate in that my family’s reasonably well off so we can afford to go private).

Ultimately, if I'd never interacted with a single doctor, I would be far less ill than I currently am, and that's something I really struggle with.