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lol when i was about 19 my grandmother was in hospital after a severe stroke, was pretty much only able to move her eyes. I fed her, i was given no advice just a bowl of slop which i gave her with a teaspoon.

In theory. But i dont have any. Staying in bed doesnt relieve my symptoms, its reduces them but i still have plenty at rest, & pain relief is hard to come by when they think the pain is 'functional'. They want us all to meditate the pain away now. Access to pain relief is entirely dependant on...

But that would be spectacularly transformative! My QOL is at least 50% lower because of stigma, prejudice & abuse, of all the health care professions and government agencies that i am reliant upon. Perhaps for those 'mildly' affected it wouldnt make that much difference but just having it...

so why not just wait until you publish your findings? doing this... is grotesquely inappropriate. If he knew how our emotions how our mechanisms for hope had been assaulted over the past 3 or 4 decades... the hope of having a life back, of being able to not just stop suffering but reverse the...

but has he actually published these findings? I'm under the impression he's just publicly chatting about them, without all the details so nobody can really dig into the findings, & announcing them in teaser posts on twitter. If theyve been published in a peer reviewed journal then fair enough...

Indeed. I go back to my original thoughts which are that he should say nothing until he can say all of it. As John says it could simply be an illustration of lack of activity. Getting hopes up when you cant give all the info is cruel and irresponsible IMHO no matter how well meant.

oh for crying out loud. Is this seriously a researcher saing this? i mean ??????? things like this just make me despair

I also have a lot of respect for the work of Ellen Goudsmit a Health Psychologist, who was very active in advocacy & with the charities 15-20yrs ago ish. i seem to remember she wrote a good paper on historical bias towards psychologisation of ME in the BMJ & the LAncet, & she was part of the...

thanks for explaining that :)

Sorry unclear why you quoted me? were you agreeing or disagreeing? My understanding of GIGO is that if you give a computer data to process that is inaccurate, then the answers it gives based on that data will also be inaccurate. Which is what would happen when it spots a pattern (for example)...

:D I feel more & more like Marvin every day:rolleyes: i couldnt answer the poll because theres no option for 'dont know'. One thing that worries me is 'Garbage IN Garbage Out', so AI worries me a bit, similar to what @Hutan said. The other answer is that i dont care, it can come from a sewer...

thats extraordinary, even for BPS/FND crowd. what was the initial tweet which he condescended to 'take seriously'? So saying 'you dont listen when you should' is abuse now? crikey i hope he's told pretty much every married couple in Britain lol! Oh yes and every parent in the world had better...

no, but unless you want to risk complaining about them, it means that the recommendations to exercise & the 'difficult/uncompliant' etc, type slurs being quietly added to your records when your argue/refuse/politely point out the new NICE GL. I say 'risk' because you'll likely be tarnished with...

it certainly would! it isnt supposedly about sympathetic appreciation, but these are human beings and their preconceived ideas cannot help but be the filter through which all information they here is run. Regardless of what any guidance says. As @Simbindi says, in my experience the DWP Decision...

indeed, its a bit scary iyam! but that counts for nothing in modern medicine anyway. It matters not what human beings 'know', because without a test result proving it, the human being 'knowing' they are ill is simply wrong. This to me is the thin end of the wedge towards taking the person's...

theoretically yes, its not the diagnosis but the assessment of function. But in practice the dx is at the heart of the assessors decision. If they dont believe ME can cause the difficutlies we have then they simply discount them. My initial PIP assessment was littered with 'claimant says...

thats interesting thank you, i was aware they tended to specialise but i thought that was in certain conditions like MS for example. Thats worth knowing thank you. I dont need to know right now, but i may do in the future, thank you

so sorry to hear that Mij, how awful, it must be hard watching it being raised again

precisely, and as for using Ghee as a 'butter substitute because the fat content & smoke point are near identical', well i'm guessing they would be... since Ghee is butter. Melted butter with the milk solids removed, to be precise. Better Than Butter? Separating Ghee Fact From Fiction –...

my family read this rag. I give it a wk before i am sent a copy. What i want to say is For Goodness Sake! do people seriously think that if any of this stuff worked i would still be ill? Do they not realise that over the DECADES, we have tried EVERYTHING that is accessible, years ago. Good...