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ugh, how awful! I'm sorry you're having to go through this. It's so hideously typical. It's horrible knowing so much more than your doctor, I feel for you, it's bad enough being the person with ME but it must be incredibly hard being a parent in these circumstances. Trying to walk the tightrope...

For what it's worth - which is very little in the scheme of things - but as one small voice within a whole... I am entirely comfortable with that perspective being accurate, and, were you my dr as an individual, it'd be such a relief that my doctor understood (as much as it's possible to). I...

Do just want to mention, lest we forget, that all this mind-over-disease thing is rampant in the cancer world too though. My mother was told, by an nhs nurse, during her chemo, that if she didnt let go of her (perfectly normal justifiable) anger, the cancer would kill her, that negative...

yes exactly this for me too Yes for me too. PEM = worseinging of original symptoms plus new ones that are only there in PEM yes exactly

I agree

Do you think that line is about doctors' perceptions of whether the patient can 'help it' or not? - as in the idea that while their refusal to eat is a behaviour - its abnormal but 'they cant help it'. I have had several friends with anorexia N over the years, 1 who still struggles with it. Her...

that's the opposite to me The more exhausted I am the worse my sleep is, PEM causes insomnia for me. Because it causes the shift into 'wired but tired'. Which I have discussed at length with many PwME over the yrs so I know its common. So sorry to hear you had such an experience with your...

yes because the truth is so incredibly uncomfortable. I worry for Miranda, I really do. How many times have we heard of people doing the LP and thinking they were so much better only to spectacularly crash later. Placebo is a very powerful thing, but it doesnt alter anything objective, so if...

But there is where i fundamentally disagree. 23yrs ago I believed that. I believed that telling myself how i felt made me feel that way - telling myself i felt great made me feel great, telling myself i felt awful is what would make me feel awful. But y'know what? it didnt work! I tried to talk...

Hi Aldebaran's Star welcome to S4 It depends what you mean by a 'better' day? If you mean whether more sleep predictably improves ME/CFS symptoms? then no not necessarily. Disrupted sleep is part of the symptom profile, but disrupted sleep is not the cause of the symptom profile. So while...

Are grand Rounds private Jonathan? I mean i know theyr'e not open to the public, but I have thought a few times that i wish your GRs could be made available to interested physicians etc, outside of UCL, wondered if it were possible to have it recorded, if only on a phone

I second all this @JohnTheJack wishing you luck with it all

OMG :rofl::rofl::rofl: this describes my ME experience exactly, I mean things are just jumbled so completely that I do the most absurd things. And what gets me about it is the incredulity, the repeated attempts at doing something incorrectly, but not being able to work out whats wrong with the...

Absolutely necessary in this arena for sure!!! I'll be using it from now on! Thanks :)

Can i suggest that we edit the title of this thread? To start with either 'Crowdfunding' or 'Trial By Error', and to drop the 'DrPH' part (just for the thread title - it confused me & I doubt i the only one). I thought it was a thread about David crowdfunding on behalf of a doctor called 'DrPH'...

Its even harder to express how grateful we are to YOU David! It makes me feel a bit nauseated to think where we'd be without Trial by Error and all your subsequent work!

:rofl: This, when I am in polite society, shall hence forth be known as 'Dear Little Off'

10 Bucks says its Wessely :eek::eek::eek: :D:D:D

i agree. I think Miranda is likely intending to refer to the mitochondria there, which AIUI do multiply with exercise. But hey if only it were that simple!

I didnt read all of it, but what i did was good. I'm not suggesting it shoudnt be sent, indeed it's necessary to have these things out there, but I hope no one expects her to respond other than in the way she already has. Indeed the flak/'nay-saying', will only serve to 'prove' that our problem...