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I definitely agree with that. I think many of PWME's symptoms are perceptions of feelings without the physical/chemical abnormalities that typically cause them. It probably only takes one misfiring neuron to produce the perception of lethargy, or pain in some part of the body, or some other...

One of these days there will be a study showing some markers that supposedly differentiate people who spend a lot of time complaining about symptoms vs healthy controls. ;)

Yes, we ask ourselves "After all those doctors saying "Sorry, can't help you.", and looking at the pile of pill/supplement bottles that didn't help, is there any hope in the foreseeable future?" If you've had a string of days that were nothing but suffering, the questions arises: "Is there any...

Sounds like useful research for ME, as well as other diseases.

I think none of the symptoms should be cumpulsory, since there will always be some individuals that have a quirk that avoids or overcomes some particular symptom. I managed to stop my PEM, but none of my other ME symptoms, so do I no longer qualify as a PWME?

I doubt that they considered direct chemical responses. Niacin made me strongly suicidal. I believe the mechanism involved quinolinic acid, which is known to induce suicidal ideation.

Voice input? I have no idea what's available these days, but I'm guessing it's practical. You could lay there and compose your responses, and either have a monitor overhead, or have it read the text back for you. Maybe there should be a thread for technology aids for people with severe ME...

Yes, that would require a lot of effort for some people. To do it properly I'd have to go back through all my records. I kept meaning to maintain a list of foods I reacted to, but never got around to it. After all, it's so clear at the time, we'll never forget it, right? At present, I look...

They certainly sound like a candidate for ME's mechanism. They meed my criteria for something that responds quickly enough to account for the rapid switch from ME state to fully healthy state (and sadly, back again :(). I generally discount ME theories that lack this potential for rapid...

Yes, and it's probably not even conscious error. People's memories get adjusted by what they want to believe. Their guesses about how much they ate would probably be more erroneous over time, but the 'adjustment' process probably starts immediately.

I strongly disagree. My physically-induced PEM seemed to be due to t-cell activation from muscle damage (consistent 24 hr delay). My PEM did not affect my physical energy production/accessibility. Even my more severe PEM episodes wouldn't have reduced my body's ability to bike 40 km; the...

The records really need to be done immediately. Human memory is too fallible and subject to self-falsification or simple confusion. Maybe I remember eating three pieces of chocolate, but was that yesterday or the day before, or maybe even the week before? The little extras are hard to keep...

That's why we're still waiting for clinical markers: none of our symptoms are clearly defined. We know what they feel like, but communicating that to someone else is problematical. Unfortunately, that leads to 'experts' who come up with theories based on misunderstanding of our symptoms. ME...

It's easier than doing good research. Since the garbage-producers are unlikely to produce useful research even if they tried working hard at it, producing meaningless junk is more rewarding for their careers. Sadly, the system is set up so that they do get rewarded for producing garbage.

Me too! I must have ME! Oh right, I do. I just forgot. :rolleyes: PEM made me want to lie down, but doing so didn't affect my PEM.

If 23/30 mild cases didn't show the virus, then maybe it's not part of ME? My guess is that any immune system activation, from viral infections, tissue damage, or whatever else, will increase the severity of ME symptoms. It's just an extra load on top of ME's symptoms due to the immune system...

Yes, since we don't know the field of view necessary to find ME's abnormalities, we might need studies at different scales. If a brain-wide scan shows abnormalities, they can probably get funding for a higher-resolution, smaller FOV study. Patients are likely to show abnormalities in different...

I like that they're using more than healthy controls. Since I believe ME is neurological (or neuroimmunological), this is the kind of ME research I like to see.

Comparisons with healthy controls are likely to show the differences between 'sick and inactive' people and 'healthy active' people, rather than be ME-specific. This morning I was trying to get an old chainsaw to work. There are three adjustments for the carburetor, and they all have to be set...

I was thinking more about this one. Are there any ME symptoms that absolutely 100% cannot be due to neurological dysfunction? Even muscle dysfunction could probably result from neurological dysfunction, possibly through many steps, but the brain is the master controller for the body. It may...