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It speaks to the harm done by a society and healthcare system that treats us terribly. No amount of psychotherapy can fix that. The problem is not how we think.

Because as I explained most of the distress I have seen is caused by that denial and malpractice. Beyond that there’s just a need for acceptance of the reality of the condition. Is that hard? Sure. But it’s something a whole range of people could help with. And do with most other incurable...

And doctors are supposed to be about the full range of a patients needs. I’m questioning why you are distinguishing here, I’m not sure its helpful. On this I disagree a bit. There is probably a role for people who need psychotherapy for non ME/CFS needs, I’m less sure beyond that as things get...

But we know that’s not the case with huge swathes of people. To use your earlier point, is no medical doctor of any use unless they have done their due diligence to familiarise themselves with ME/CFS? Okay… Actually… Do we give up and say ‘well anyone can call themselves a doctor’ or do we try...

Some people may want psychotherapy to help with things unrelated to ME/CFS.

Is there any way they may be open to a refined edited down version?

I get why people are scared of saying they don’t know. It can be hard accepting there are no answers. It can be difficult for your own ego to say it when people come to you for answers as the expert in a field. But it’s a necessary step on the path to finding those answers. Not knowing is how we...

Ah, for psychotherapists? There’s nothing available that I know of yet but @Joan Crawford (co-author of this open letter) has been working on guidelines for the british psychological society. More info in this thread...

Based upon nothing but vibes… this seems to in some ways trying to do the old thing of linking to depression and the idea of less serotonin (although I can’t see the whole paper so can’t be sure). But the idea of possible receptor affinity seems interesting to me. There so much else hinting at...

The Heparan Sulfate Proteoglycan Metabolic Process was one of the things that popped up from Enrichr when I was looking at the PrecisionLife data

Are you thinking about receptor affinity in the context of other potential neurological things cropping up around synapses, GPCRs and ion channels @ME/CFS Science Blog ?

Looks like the Charities Commission

I wonder how much his has all cost the MEA, has here been any info released? Looking at a grant like this, seems 30k well spent and there’s other good stuff the Ramsay fund is being spent on (where it is only biomedical research and they seem transparent).

Macrophages: shapes and functions Lendeckel, Uwe; Venz, Simone; Wolke, Carmen Abstract Macrophages are cells of the innate immune system and represent an important component of the first-line defense against pathogens and tumor cells. Here, their diverse functions in inflammation and tumor...

It’s amazing how many respected scientific communicators are ;) We had this when pubmed had DNS issues, some people who understood computer networks tried to explain, but nobody listened because some people with very big social media platforms who also regularly appear on TV were shouting that...

I think it’s telling that even then there was talk of the need for domiciliary care for the severely affected. And it never happened. We’re seeing some charities like the MEA make the same mistake now, two decades later, saying that services for mild/moderate that we know are imperfect are a...

The error only recently started and is a perfectly normal one for a service having issues, as it is if you try to access the archive of any site at the moment (I see errors for the bbc for example’. No conspiracy to see here.

Thinking more on the dysregulation and rehabilitation model and the way it’s used by some, you could apply this to just about any illness. It seems to speak of a mindset beyond ME/CFS that any illness can be seen as a physiological or psychological state performing outside its ‘normal’...

DT: “Their concept is a dysregulation model, can you explain what that is, what that means in their terms?” JE: “No, and I don’t think they can either” :laugh:

Oh this is great to hear! Thanks @dave30th and @Jonathan Edwards lovely to hear you both, brings a smile to my face. Less Joy in the Morning, more Jo in the Morning Audio only here for people who have youtube problems https://u.pcloud.link/publink/show?code=VZwcEl5ZJdVmzM2igh0iIF9Uy3tyszU6CIik