Guardian piece on"Lyme"

Jonathan Edwards

Jonathan Edwards

Senior Member (Voting Rights)
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"The syndrome is clearly an umbrella term for different illnesses that are poorly understood by modern medicine. We met people who had recovered thanks to talking cures. One told me his ME disappeared when he took a course of psychological treatment in his 20s and understood what he had to gain from being “tired” all the time: respite from being under pressure and daunted by the world. What did Milly have to gain from being tired, we wondered? Why would a nine-year-old decide to be ill?"

This article is infuriating - I came to the exact same conclusions about my ME and went from mild to severe so why promote this nonsense as if it represents most of us?

There is no evidence that ME is an umbrella term apart from the fact that people who promote lyme and viral persistence quackery constantly state it is.

Perhaps there are subgroups, perhaps not. But I hate this phenomenon of people who escape the stigma of ME only to turn around and stigmatise us to prove they're one of the normals...

Edit: They've written this whole article about Lyme but the poor child isn't any better and doesn't seem to believe it will work!

'And what’s the future for Milly? “Because I’ve tried loads of things, it’s hard to believe this will really work,” she says. “I’ve lost faith in medicine and practitioners. I’m not feeling much better either. It’s difficult to think of the future right now – where my life might lead.”'

Just goes to show you how ecstatic getting away from the ME/CFS stigma makes people.
 
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We tried to remain open-minded. We tried a type of talking cure called the MindBody Reconnect which had revitalised a friend. Milly didn’t enjoy the expensive online sessions but doggedly stuck with it. I’m sure it works for some sick people. For Milly, it was a disaster. She became convinced she was responsible for her illness because she could not think herself well.
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This article shows how desperately we need a competent healthcare system that can ADMIT that there is a serious problem it cannot help with.

This descent into quackery and increasingly absurd ideas is driven to a significant degree by the lack of financial support and validation, sometimes with unjustified optimism that is intended to put patients into a positive emotional state but which actually creates unrealistic expectations.

The healthcare system should start telling people that the disease is serious, not currently treatable, and that all that can be done is to try and live with it as best as possible. The healthcare system should also support patients in getting accomodations and financial support.
 
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Patrick Barkham writes for the Guardian on natural history. He is the author of Wild Green Wonders, Islander, The Butterfly Isles and Badgerlands
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Maybe they should have got their science or health editor to take a look at this before publishing it eh

I feel for the girl and her family and there is a good article to be written on their experiences and how they have been failed, but publishing what seem to be more lifestyle pieces like this is deeply irresponsible.
 
I just feel huge sympathy for Millie and her family after reading this article. We are all so badly served by the NHS for ME/CFS and related conditions that it's natural for parents to search for answers and in desperation try everything, and to want to believe ancedotes by others and what convincing sounding doctors tell us.

Yes, there is some misinformation, and I don't know what to believe about Chronic Lyme, but I don't think it's fair to criticise the author of the article who is a desperately worried parent. And we are not the child's doctors, so can't possibly judge, nor should we, whether her illness is indeed caused or triggered by a tick bite, or by Covid, or something else.

A lot of NHS clinics call GET pacing. Even the PACE trial called GET and CBT forms of pacing, and therapists of various descriptions are taught that pacing for conditions such as pain and fatigue involves finding a baseline then adding activity. It's so pervasive that even AfME accepted for years a pacing guide written by a physio that recommends pacing-up. I googled pacing for pain, and this example of a pacing guide popped up. We have a particular understanding of pacing for ME/CFS, but it's not shared by many NHS staff, so it's not surprising the article gets it wrong.
 
This is currently the second most viewed article on The Guardian. With so many desperate parents of kids with Long Covid right now, it is a dangerous time to be publishing these sorts of unevidenced and stigmatising claims.

Obviously as Trish says this is the writing of a desperate parent, and they deserve sympathy, but that doesn't excuse throwing the families of children with ME/CFS under the bus by promoting the most dangerous and stigmatising myth about ME - that we are subconciously seeking 'secondary gains'.
 
Trish said:
I don't think it's fair to criticise the author of the article who is a desperately worried parent.
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But they are promoting a harmful and stigmatising myth about us in a national newspaper. People reading that some people with ME get better after confronting what they 'gain' from being sick in the Guardian today is going to cause tangible harm to pwME/LC, whether that's friends or loved ones (even children) of people who read and believe the article, or their patients or people they encounter through work or whatever.

We can be sympathetic but being a parent doesn't excuse using your platform to spread stigma in this way.
 
Hoopoe said:
This descent into quackery and increasingly absurd ideas
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By some perverse anti-logic it somehow just keeps getting worse, doesn't it. This cruel drivel just metastasizes unchecked throughout the whole health system.

Hoopoe said:
The healthcare system should start telling people that the disease is serious, not currently treatable, and that all that can be done is to try and live with it as best as possible. The healthcare system should also support patients in getting accomodations and financial support.
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Exactly. At this stage, that should be the entire message for patients.

Followed by a grovelling apology for allowing matters to degenerate to this appalling state.
 
Trish said:
Yes, there is some misinformation, and I don't know what to believe about Chronic Lyme, but I don't think it's fair to criticise the author of the article who is a desperately worried parent.
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The author and their family no, but the paper and its editors I think there it is absolutely right they are challenged. This is written in a personal way by the author for obvious reasons but it is being presented as fact, as a news feature so having journalistic rigour.

The author understandably wants to get their story out but responsible editors would either have made this as an opinion piece or rigorously edited it to be factually correct.
 
If patients are left with no recogition of disability, no financial support, no social inclusion, and ultimately, no vision of a future worth living as long as they continue to be disabled, they may react in three ways:

1. Give up entirely.
2. Try to cure their disability (if they have the resources to do so). This leads to increasingly nonsensical, expensive and risky approaches.
3. Try and live as best as possible with the disability.

Society often encourages number 2 and discourages number 3 due to the fear that a positive, accepting attitude will prevent a recovery that might somehow be possible. Number 1 is often viewed as depression and not as an understandable response to adverse circumstances.
 
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Sadly just the kind of drivel I have come to expect from the Guardian, which long ago gave up the pretence of being an actual newspaper. So on the plus side, hardly anybody will read this article.
I find it strange that the father confidently declares that ME is "an umbrella term" given to lots of different illnesses. Really? How does he know this? Is this what the DecodeME result showed us? Or is the reality that many people are misdiagnosed by lazy doctors?
I have sympathy for the kid. She most likely does have ME. Her parents are clearly grasping at straws, desperately hoping that she has something treatable, instead of the dreaded ME. Sadly in a few years if she doesn't recover, her parents might have to accept an ME diagnosis in order to claim benefits for her. They won't get anywhere with a diagnosis of Lyme disease. Then they will look back and feel a bit embarrassed about their disparaging comments about ME patients.
Oh, and lots of ME patients get bitten by ticks at some point. I did. Lots of people have. Most don't then get Lyme disease.
Except the middle class ones who can afford fancy private doctors.
 
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While I agree the article contains a lot of misinformation, and in theory the media should present it alongside accurate information, I'm not sure how editors are supposed to sort the facts from the fiction when even the medical colleges, SMC and influential doctors promote misinformation.
 
Trish said:
While I agree the article contains a lot of misinformation, and in theory the media should present it alongside accurate information, I'm not sure how editors are supposed to sort the facts from the fiction when even the medical colleges, SMC and influential doctors promote misinformation.
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Maybe they should not cover topics they are not at all qualified to cover? For some reason, medicine gets a free pass from journalists. They’ll tear a financial claim to pieces by scrutinising the data, but as soon as a doctor says something it must be true because they are the experts.
 
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Trish said:
I just feel huge sympathy for Millie and her family after reading this article.
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Me too.

I very much hope that, if Milly's Lyme diagnosis is correct, she responds to treatment, and if she has ME/CFS - or if chronic Lyme is, in fact, better understood as ME/CFS due to a Lyme infection - she will be one of the majority of younger pwME who get better in a mean 5 years, as in Katherine Rowe's 2019 study.

I think it's a real shame that the message that Milly's dad seems to have gotten regarding exercise is that it's advisable:
We were given the usual advice about pacing – gradually increasing exercise – which is challenged by some ME patient groups.
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During her final year at primary school, the most Milly could manage was half a late morning. We would walk her there, hoping the gentle exercise would help. She’d shuffle along, hidden in her coat.
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I hoped that the one message that might have reached people with suspected long COVID was to lay off exercise.

Moving away from Milly's particular case, is the test mentioned in the article "T-spot test...German lab" one of the cellular tests about which Baarsma et al. 2022 conclude:
The cellular tests for Lyme borreliosis used in this study have a low specificity compared with serological tests, which leads to a high number of false-positive test results. We conclude that these cellular tests are unfit for clinical use at this stage.
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