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As my mother would say, "Give me 5 minutes alone with them in a room".

Yes (1mg 3 days a week), and nope, haven't noticed any eye sight improvement.

ditto

Thanks @wigglethemouse and @Leila - I copied the pertinent bits into my notes for when I see my doctor - I have a H1 blocker too that has helped with nausea and sleep, but didn't think about taking them together. I can only imagine how low my quality of life would be if not for the collective...

Yes, I forgot to mention that: it is more likely to occur if, when I return from going pee, I lay on either side -- the gurgling will start immediately and I'll turn onto my back and sometimes that can help and it won't advance, and sometimes not...

But it didn't cure your ME, I'm guessing. Still, any improved quality of life is appreciated.

I know, right? Part 2 gets published next Monday, and I asked him your question right near the end - he still sleeps in 2 four shifts, and sets his alarm to wake him up (I was expecting him to say he'd just wake naturally, as his earlier big insight into healing, or not getting sicker, was to...

It could be -- not sure what the 'automatic' thing gets triggered from going pee in the middle of the night. If Pepcid, a H2 blocker, helps, that's indicative of MCAS stuff I'd think. But yes, will have to go back to my doc, ask to see a gastro - and for h. pylori test.

That's a good idea, and not just for this issue, so will get on that.

It started last summer -- I got my GP to send me to an allergist (that had done a lecture on MCAS, so thought he'd be good) -- but he said it didn't fit with allergies or MCAS and gave me req form anyway for serum tryptase testing within 2 hours of one of these events -- so that's not gonna...

Yes, that happens too -- 'normally' I'm cold so wear multiple layers, but I start sweating and have to peel off the layers -- usually once the sweating starts, the worse is about to come. Have you found anything that helped (beyond Pepcid)? I suspect a delayed gastric functioning type thing.

I don't eat after 6pm. I always wake around 2 - 3am to go pee. Sometimes that will cause my stomach to start gurgling and within 10-15 minutes I'm simultaneously vomiting and defacating. Recently I discovered that immediately taking Pepcid (or Tagamet) at the first 'gurgle' will stop the...

People of a certain age will remember Howard Bloom from his influence on rock music. Howard also spent 15 years mostly bed bound with ME --- 5 of those years he couldn't speak --- but now he takes a bunch of drugs and he's symptom free...

Thanks all for the comments and information.

We have yet to see the ME community use the same tactics the AIDS activists / ACT UP used to great effect. And that type of 'in your face' activism will be harder moving forward in a constant COVID world. Also, advocacy and fundraising for ME is exponentially harder now that the whole world...

Echoes of Temple Grandin?

Lead author Rosie Twomey is originally from the UK before switching career path and moving to Canada -- this bit was interesting: "...Very early in my research career, I was at the bottom of a hierarchy within an all-male team of senior researchers who were engaging in questionable research...

ah, he's the creator of CBT Watch, I though he was an Ontario doctor.

Thanks -- I left a comment and am trying to track him down, but his name is pretty common.

On my 23andme / Genetic Genie.