First speaker of this session: Dr Paula Muhr on 'it's all in your head'. LC is not FND but often comflated with it. Fnd is still associated what Freud used to call 'hysteria' and all the stuff re: secondary gain also comes from Freud. So, fnd isn't in people's heads, and neither is LC.

What contributes to our invisibility? 1) the unwillingness to register. From 2020/3 there were signals about lc. It took the dutch government 1,5 years to mention it. (long sars1 was known from 2003). But they refused registration. No facts, no meaningful discussion, no numbers to make us visible.

Les consultations durent 20mins mais il prend le temps de parler plus longtemps s’il le faut

Have you tried contraceptives for stopping your period? i used to have this exact problem and that’s how i solved it. I’m aware it doesn’t work for everyone though

My point is that they can only be a treatment barometer if they are correlated with an independent measure of disease severity, and we need questionnaires to check that!

“But what could be driving immune dysfunction if not viral persistance?” “But why would some people get sick and not others if it was viral persistance and not person-specific immune dysfunction?” These are questions that need to be investigated, not inquiry terminating gotchas

I feel so frustrated when people proclaim the root cause couldn’t be anything other than viral persistance, or anything other than autoimmunity, or anything other than immune dysfunction. We simply don’t know yet. We know that all of these are involved and they all need pursuing

This is essential to be able to determine who should be given what intervention, since we know that it’s very unlikely everyone with LC will need the same intervention. So biomarker research is urgent and crucial. But biomarkers will not replace questionnaires

None of this is to say that biomarkers aren’t essential. Most crucially, we know that people w the same disease presentation respond differently to interventions; we currently have no way to predict how someone will respond to any given treatment. We need biomarkers for subtypes

Medicine is for us, its aim is to improve our lives. Unless we had a biomarker that perfectly correlated with all domains of health related quality of life (highly implausible), we’d still need questionnaires in addition to biomarkers

In HIV for instance, once your viral load is undetectable, doctors consider their job done. But many people whose viral load is undetectable still experience sometimes disabling fatigue and brain fog, among other symptoms. These aren’t recorded in studies that only use biomarkers

But sick people don’t only care about how long we’ll live, we also care about how well we’ll live. There are so many examples in medicine of fields where the very concept of quality of life is entirely absent.

Well, their biomarkers are supposed to correlate with time to death. (I say “supposed” because there are many cases where this was just assumed and it didn’t hold; e.g. findings that shrinking a tumour didn’t actually lead to living longer.)

Now to the second part of my argument: in other fields (such as cancer), there is a huge push from sick people to include questionnaires. Why, if they have biomarkers? What sense does that make?

To recap what I’ve said so far: the only way to check that biomarkers are a good measure of disease severity is to have an independent measure of disease severity, and in LC and ME, that requires using questionnaires. Hence, developing good questionnaires is essential and urgent