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There were many factors for my ME onset, but one was moving into a brand new house. I didn't notice a smell or anything at that time, but I did notice that my intolerance of perfume and cigarette smoke went off the charts once I moved in there. I say this bc even if you can't smell the chemical...

@Sasha, I think the core temperature shifts during various phases of sleep, at least in my direct experience this seems so. That's why I've devised the least-sleep-interrupting scheme for self-regulating, bc it seems to have more to do with internal temperature than external. But of course...

Call me an idealist, but I would like to think that medical doctors, rather than accepting the "easy pass" of MUS, would be appalled and offended at the idea that as yet unexplained symptoms are by default magically caused by the patients' neuroses, and thus under the purview of psych. I would...

Oh yes, Mrs S reminds me that I also drape a pashmina over my head (and eyes, for the light) as head covering is essential for temp regulation. Quite the elegant sleeper, I am :bag:

My hack for this is to keep a cozy throw-sized blanket under the sheets with me. This way it is really easy to push or kick it aside when any part of me is too hot, or gather it back when I get cold. SO much better than sitting up to fuss with extra blankets on top, plus acts as a draft barrier...

Yes. And the numbers are growing each day as the f-people add more illnesses to their imaginary-imaginary diseases. I think we also would do well to galvanize medical science to take their territory back from the BPS people. It is hard to fathom how anyone capitulated to these ridiculous ideas...

Thank you so much @Gary Burgess for going public and using your significant professional connections to bring awareness and truth to the largest possible audience. It would surely be easier to stay incognito, so I thank you for your courage, forthrightness and bold intention for the benefit of...

I know 80-90 year olds with way more energy/verve/active life than I, so yeah, defo prematurely aging on the inside. Had a doctor years ago suggest that telomere attrition was an issue for me, but of course there was no solution so I promptly forgot all about it.

@Liv aka Mrs Sowester, so touched by your choir, and all the details down to blue robes and (we hope) bluebells in blossom. Brought a tear to my eye, and I do hope we get to watch a livestream.

Add to all this the fact that as we speak the UK NHS is forwarding the worldwide trend of corporatizing health services, which is a gigantic motivation for instantiating MUS. We can't let this be one tiny David against a many-headed Goliath. There are so many patient groups worldwide that could...

Maybe like a full-page spread in multiple high-profile newspapers that is half comprised of signatories from huge organizations that value actual science and actual medicine. Letters appealing to all the world's medical councils and science orgs, with the same massive list of signing agencies...

I was just posting thoughts in another thread about illnesses banding together to get things done. It's clear BPS people have been deliberately using their significant PR arms and networking to pepper the world with the MUS fantasy. We need to nip this in the bud before it gains any more...

I do have a co-Dx of CIRS, so this may not apply to all here. I have had several terrible exposures to mold, which is a known symptom-exacerbator for me. It's early days, as I've only been taking it for ten days, but the initial response is so positive! I had three days of feeling Wow! and then...

And just FYI I realise the artist has a focus on depression, but I think with tweaks to existing art or commissions for ME-specific art, this artist's work captures well the way it feels to have ME. For example, it would be simple to erase the "motivation" from the batteries above to shift it...

(mods: if this is the wrong forum please move it. wasn't sure where it belongs.) Stumbled on this artist and thought some of Avogado6's illustrations would be so helpful in media coverage in place of the usual limp female holding her head...

FWIW dysautonomia was made dramatically worse for me by taking a round of Cipro. Not realizing that was the case, five years later I let someone Rx me another round for an infection. Worse still. Lesson learned: added Cipro to my "allergies and adverse reactions" list. That stuff should be...

Yay! Thank you Andy for contacting him and letting us know. Wishing him the very best, and with such gratitude for all his contributions in transforming SMCI into the bold and dynamic organisation it is today.

Pineapple are restoring my faith in humanity :angel: Thank you /u/pine!

Likely all three rings of one big rotten circular self-serving circus.

I had this (both formication and relentless itchiness) earlier on in my illness progression, it does suck! I don't remember what I did for it then, if anything; but I do take benfotiamine when I get other weird skin burning/hypersensities now and it works well.