Search results

I guess they should’ve used an “active” placebo that also caused a similar gastro side effect as what metformin causes. Not sure how feasible that is though in practice. I’ve read trials with active placebos when a treatment has a certain smell or taste, though not wrt known side effects.

@Milo Even when I was less severe than I am now major travel always comes with this fear that I won’t be able to make it back! That I will overexert so much and crash so hard that all plans go out the window and I’m stuck wherever I am for days to weeks, praying I’ll improve enough to make the...

It will be end April or early May

I’m sure many people think we are agoraphobic or something but couldn’t be further from the truth

Fortunately we have two bathrooms, and the extra bedrooms and bathroom are on the opposite side of the house down a hallway compared to the living areas and master bedroom. Also good is that the master bathroom is en suite so I don’t have to go out to go After all the great advice here that...

I got to the point where I was in a semi-permanent crash in what I think is close to severe state for a couple months and was starting to become suicidal because I thought it would never end (it was non-stop torture level pain), fortunately it got a bit better. I couldn’t do anything during that...

I’m actually not sure what she knows, she’s my spouse friend but we visited each other multiple times over the years and she’s gotten to know me well. I never described my illness to her I thought it better left to my spouse to tell her whatever he thinks she should know.

I used to be able to do this and was willing to for most of the time I’ve had ME. But now it’s way worse, which I hope I’ve described in enough detail. Even if I watch enough stimulating TV with my spouse or laugh too much I will get enough PEM that I want to avoid the pain now. Even doing this...

@Hutan for sure I could try to do a couple specific short events to reduce risk of PEM. That is good advice Regarding being in the bedroom. I don’t know how to describe it, it’s not missing out at all, it just feels very weird, to me at least, when a guest who you know fairly well is in your...

@JemPD sorry I was having trouble quoting, but following your previous post I wanted to ask everyone that no matter how much you explain or show or they see do you find that healthy people can never really understand what this illness is like?

Yes it is hard for him. He says he sees how terrible and painful things are, during many crashes and symptom upticks I’ve given him real-time description of what’s happening (when I can talk). Plus he’s seen the physical symptoms that aren’t invisible and couldn’t be “made up” or exaggerated, my...

That’s definitely already a necessity and understood by my spouse without even needing any discussion. But even just a few hours during the morning and night over a couple days if I interact and get stimulation from lots of movement and talking around the house will cause me to eventually crash...

My spouse’s friend doesn’t have to stay at our house. The reason is since we last saw her years ago we moved to a new house and metro area and I think my partner wants to show her our new house. Also culturally, my partner and her are from the same country where seems more common if there’s a...

My spouse wants to have a friend visit at our house for a couple days. We live in a ranch home where the living space is on one floor and the size of a three bedroom apartment. The master bedroom where I spend my life is adjacent to the main living area (living, dining, kitchen). I am currently...

He was sent to Cuba to investigate Havana Syndrome cases. So to me there was a motive to incapacitate him right away. I don’t think they cared if it strongly suggested a malicious actor, they knew, and still know, the US govt has no real clue what’s going on.

Another useful reference https://www.s4me.info/threads/brainstem-abnormalities-in-me-cfs-a-scoping-review-and-evaluation-of-magnetic-resonance-imaging-findings-2021-nelson-et-al.24095/#post-400561 which take home message says need to focus on brain stem abnormalities

I think I could be wrong… because medulla, pons, midbrain all control areas like breathing, sleep/wake cycle, temp regulation, vision, hearing, motor control, alertness, heart rate, blood pressure… all unconscious processes and definitely all very strongly linking to symptoms we experience...

The original Havana brain imaging study found issues primarily in the cerebellum https://www.pennmedicine.org/news/news-releases/2019/july/advanced-neuroimaging-brain-matter-alterations-gov-personnel-developed-neurological-symptoms-cuba

The main conclusion: All regions part of brain stem. How does this correlate to the findings in Havana syndrome that have primarily cerebellum damage?

I have to review this in more detail but wondering how these more recent DTI MRI brain region findings and comparison to previous work connect to ME symptoms and overlap with Havana DTI findings...