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.
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.
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 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.
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.
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: 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.
Yes, it seems to have been amended for the better: 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]
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.
I've pulled a copy of the old article from my browser's cache. Here's the diff: 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.)
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.
Latest Guardian article about a Long Covid sufferer. ‘A 30-second walk would exhaust me beyond reason’: Natacha’s life with long Covid https://www.theguardian.com/society...would-exhaust-me-natacha-life-with-long-covid
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.
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.
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.
