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Brilliant article, thanks for posting.

I totally agree. I'm on a facebook group for ppl with long covid trying to offer what little wisdom I have to help them. (I'm mostly trying to help them learn from my mistakes - they are being prayed upon by the same snake oil salesmen we've dealt with for so long and they're not prepared!)...

I don't think emotional energy expenditure has to be related to cognitive activity. The body responds physically to emotions - heart pumping, muscles tightening etc., it takes energy for your body to mount that response. The response equates to activity like any other activity can cause PEM. I...

I think this is really good - clear and covers all the important areas. I personally don't find the phrase 'emotional energy' problematic. I definitely find that anything that requires emotional energy is more draining. A confrontation, disagreement or a worry that gets adrenaline flowing can...

Oh I see. That does make more sense! Although I don't think the question's clear. I did have an MRI of my brain and various scans to rule out gynaecological issues. Plus hundreds of blood tests. Can't think of anything else... Never had an xray.

Thank you, that's good to know.

I think I'd need more information about who the authors are and how they will be using the data before I complete this.

I've started this. There's a question that says, How many investigations of your ME/CFS (blood tests, X-rays, scans, etc.) have you had? How many blood tests? I'm not sure I know. I've been ill for a long time.

I agree - this would be very interesting!

Just reading this summary, it doesn't sound too bad to me. I'm all for investigating how to better support the mental health of pwME (whilst also acknowledging that this is never going to be a treatment for the ME itself). Maladaptive perfectionism is generally linked to depression and anxiety...

Yes!! Exactly this.

Oh brilliant! Thanks so much for that. This is such an important debate I think. It really helps me to have things theorised in this way. I definitely feel that the social model has something to offer us - if society was set up to include us, we might not be 'healthy' but we could have a better...

Thank you. I am a terribly slow reader too. I mostly listen to audio books but do manage a few bits. I printed that Tom Shakespeare essay out and read it in parts over a week. The length of the energy impairment report from the chronic illness inclusion project intimidated me but perhaps I will...

Oh interesting. Is Tom Shakespeare still of the view that the social model was useful but needs updating? What are the counter arguments? I guess those who think that the social model must remain central? Or is that a huge simplification? I'm trying to get my head around different theories...

I'm happy to identify as disabled although I usually add 'and chronically ill' because it gives more info - lots of disabled people aren't ill. I'm really interested in disability theory. I've just read an article by Tom Shakespeare (a rockstar in the disability studies arena it seems and...

Ooo, I'm in the middle of listening to the audio book of this! :):):)

I love this blog.

It's heartbreaking. From what I've picked up, these healers became popular because they seemed to listen, care and understand when others didn't. It is so sad that this had to come along with the 'you can heal your life' message and the associated guilt. Why can't people just stop at listening...

I find the Better spray really good too. I took expensive tablets and didn't make a difference but with the spray I would say that it *might* stop me getting as many colds during the winter. I been using it the last few winters and haven't had my levels tested during this time so I don't know if...

A while ago a close relative of mine was suffering from severe prolonged leg and hip pain. She kept saying, 'it feels like it's inside my bones'. The dr thought it was just general aches and pains until she eventually had bloods done and it turned out she had advanced non-hodgkin's lymphoma and...