It seems that if you have enough money to take all these expensive tests there's a good chance you might end up with a Lyme disease diagnosis. I simply do not trust these tests based on what I've read about them and the clinics who sell them. The whole situation is infuriating.
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'.
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.
If you reject the idea that ME is an umbrella term , which might include cases whichc respond to psychobehavioural approaches , then you are right, But a diagnosis of ME is not based on precision so the recognised cohort is in reality mixed and may include patients who respond to a variety of interventions. Post successful intervention these should not be referred to as ME but as "possible X therapy responsive syndrome " though post is not prompter, but this is difficult to maintain when diagnosis is symptom based " I got the symptoms so I got ME" is hard to argue against while diagnostic practice is as it is.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.