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Do we expect anyone else to "heal themselves" except those who have chronic pain or chronic illnesses, especially ME, LC & FM? Imagine if you went to the doctor with tonsillitis, or cancer and they said "not my job; heal yourself". Have we reached peak neoliberal individualism?

What support?! Mine's just told me I have "reached the end of what the NHS can offer" and that's for multiple conditions. Diagnosis on its own solves nothing, although in my experience if you have ME, LC, ADHD or autism that is almost all you are given, except maybe a "lifestyle management"...

I was today years old when I found out it's called "delivery ministry" these days, apparently. Thank you Google. Edit to add: you're advised to check with your GP for mental illness before calling.

I was genuinely curious about this, so i listened to the podcast It's exploring the limits of scientific knowledge and saying that having a name for something means that you can find community and remove blame and shame from the patient. It's an extremely nuanced argument about are we giving...

That would have been my expectation and understanding.

"Does naming your illness can take away some of its power?" Surely it's more like finding the right map and heading in the right direction, instead of repeatedly driving down a dead end street, which is what happens when you have the wrong diagnosis? It doesn't solve the problem but it points...

Two prevention of deaths orders in the last year would disagree that ME is not fatal though. Not on the same scale as cancer, but also not non existent. And both of those who died tried Graded Exercise, I believe.

Thank you, that's good to know. This, less so. What evidence was this based on? I know that there children do recover more frequently than adults, but also tend to relapse in adulthood so... still a bad idea?

Anyone else feeling queasy? As a psychology graduate myself and former member of the British Psychological Society (BPS) I strongly suspect there are ethics and guidance against research on children. Surely the approach should be “If the this has even the potential to be as dangerous as people...

This is excellent explanation of the patient position; The Patient Who Isn't Supposed To Exist "I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward." "The community does not reject CBT. I have taught CBT. What it rejects is CBT...

Slightly off topic, but it would be an interesting project, to collate as many ME and LC recovery and non recovery stories as possible and do a detailed interview on what actions both took/take to manage their health and that triggered their improvement or worsening and follow up for a couple of...

Exposure therapy suggests a phobia that needs deconditioning? The analogy in physiologically exercise intolerant conditions would be like trying to habituate a diabetic and increasing their tolerance to sugar by gradually increasing their intake.

Additionally, these studies and clinic interventions lack long term follow up, so there is no understanding that any short term recovery hasn't been sustained For example; https://www.actionforme.org.uk/wp-content/uploads/2025/04/Action-for-ME-FOI-report.pdf "Fewer than one in four NHS...

Yes. Exactly. After 30 years+, NICE reviewing the research landscape and declaring it low and very low quality, and s I many patients being left bed bound, or worse, at what point can we admit that this is not working and move on to a different approach and exhaust all biomedical avenues?

This is such a good explanation and I agree totally; I can't remember the last time I didn't have some symptoms of PEM, I think it was probably long before long covid added to my ME.

This was the exact point that I was making, is that people regularly overshoot their energy envelope because it is impossible to stay within such a minuscule amount of available energy, and based on my own experience, we are all regularly trying to increase our capacity to do more. This seems...

I would also add that, as an example, The Feel Better, Live More podcast, hosted by UK-based medical doctor and author Dr. Rangan Chatterjee, has surpassed 1.3 million and ranks consistently as one of the top health shows in Europe. He has Howard Schubiner on for the second time on this week's...

Thank you for joining the discussion @Learningandlistening No one with ME is avoiding exercise; we are desperately trying to do as much as possible with the energy still available to us and most, if not all of us, regularly overshoot that capacity. I think one of the first things most of us...

Excellent response.. particularly enjoyed;

Thank you very much :thumbup: