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Agreed. Absolutely. I do hope so.

:(

A really good point. It will be that other patient groups have also been targeted for similar or identical tactics of coercion. As there is such an abundance of reports collected by people with M.E. this would make great material for an investigation into this specific angle. The extent and...

I’ve watched or rather listened to the whole episode. It’s pretty slow paced so not too difficult to follow. I found it interesting as I’ve OI. Peter Rowe MD is in favour of lots of experimentation to improve his patients condition and function with their OI. He seems like a lovely fellow. It...

interesting and horrifying.

Oh @Maat. I don’t have words. Your father deserved better. :emoji_blossom:

Yeah. That just normal recovery if you’re lucky with virus like this one.

Yes :broken_heart:

Yes I thought so too. There were little jabs dotted throughout. Also shoddy of them to get comment from Cochrane and not from pwME who put up the petition, and have all the facts and personal experience.

:thumbup: Bastian admits Cochrane has been appalling. & Proff JE gets to counter Cochranes claims. But not loving to see more of Cochranes attitude.

:pensive:

I love this bullet point run down @Hutan You’re writer in chief for our information sheet; Doctors Why Are They Like This?

Yes. An ill child may present in a state of distress from their horrible illness experience or encounter with one of these paediatricians. Or else be too exhausted to perform engagement and energy at consultation. Seems most of these paediatricians don’t think; ahh yes poorly child quite usual...

‘Science unravelled’ the science is the subject not us. I like it because of this reversal specifically. It’s the quality of the science that is unravelled for us. On our behalf. As it should be but isn’t.

Science unravelled. Rather. Unspooling good science to understand and interpret this. Unravelling ‘bad’ science or BPS propaganda posing as science. I think it is very apt. In Depth is also good.

I have to say the ME/CFS part of a name really messes up readability and style of any name. The slash and sheer number of upper case characters. Distracting and unpleasant to look at. So I do wonder if it’s possible to make somewhat less obtrusive by down grading it to the end of a title. Or...

ME/CFS Science I don’t like because it is too broad. It could work if your blog gets famous enough. But it isn’t very memorable at first glance and gives no clue as to what you specifically do in the field. Science unravelled is better I think as it’s more descriptive of what you do. I like the...

Understood. It wouldn’t provoke them if a few people with ME or long COVID used the term between themselves. But if it took off as an advocacy term in a bigger way then yes it would. The reason for not provoking them into a conversation about the term in question is that we’d be on weak ground...

Yep. Unbearable. Great, I’ll look on BlueSky. All best for 2025 to you & family! :heart:

I don’t think it comes across like you’re diverting money anywhere. It’s clear you’re on a mission to spread the word and gather support for people with ME!:hug: Are you on other platforms from Twitter as was? I used to keep up with your updates on there but you have to sign in now and it’s...