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Apologies didn’t mean to judge, tried to make the point that for lifestyle diseases some responsibility should be shared and we should give more than equal weight and funding for diseases where lifestyle isn’t a factor at all instead of leaving communities high and dry. The documentary you’ve...

Again spending billions and billions on lifestyle diseases... and when those who have life destroying disease which is no fault of their own, sadly no money is left for us. Sad and disgusting. NASH didn't even exist 30 years ago, it was rare if someone had something like that in the 80s...

I think I did the already existing poll somewhere, though I thought they shouldve added three more: 11. Almost never, ME improves 12. Almost never, ME stays the same 13. Almost never, ME gets worse I would’ve answered 11 not 7 in that poll if they had these.

3 days. The ME is creeping back not any sudden return. I wonder if it’s, like I mentioned, the immune system signaling to ramp down as the cold virus is killed off and therefore also temporarily shutting off any ME chronic immune activation or, like the ME chronic infection people believe, the...

@Jenny I just had the same thing, first time since I got ME. For me a bit different I went ME-symptom free for 3 days as my cold started improving, definitely not just before it started.

I’ve just recovered from the first proper cold I’ve ever gotten since I fell ill with ME/CFS six years ago. The first 3-4 years I never once felt even a wisp of a cold/flu coming on, and the last couple years maybe twice I felt under the weather like a cold was coming on but it never did. The ME...

Blurring and problems focusing. Gets worse along with my other symptoms when overexerting and PEM builds. I have to stare much harder at computer and be closer.

SSRIs have very strong stimulatory effects and make it hard to sleep. I wouldn’t ever use them in ME/CFS they very likely will not work and because of the above will probably make you worse over time. Being amped up chemically isn’t the way to go with ME you will just crash even harder. And like...

I wouldn’t worry. There isn’t a paper yet, this is just an oral or poster abstract that they’d submitted for the annual ASH conference happening now in San Diego. Blood journal always publishes ASH abstracts as part of a volume supplemental each year.

I agree ESR isnt a good biomarker for ME Like others here while I had very low ESR early in the disease like 0-2 (and it was measure multiple different times a months or so apart), later tests showed normal ESR even as the disease worsened.

It’s the only one I have in the medicine cabinet :laugh: I thought maybe next time I get the pre-crash symptoms incl. my brain on fire and wanting me to shut off all stimulation I could try an NSAID. It certainly feels like neuroinflammation!

What are your thoughts on naproxen compared to ibuprofen?

What do you do to target inflammation? Also, where do you buy MAF? From gcmaf.se?

I’m less inclined to believe neuroflammation reduction is one of the principal reasons a ketogenic diet significantly helps a subgroup of PWME versus the metabolic/circumventing aerobic glycolysis block/ketosis theory. First because I think we would see a much bigger subgroup of PWME (or all...

@Hutan the answer to the question, “do I have PEM and then get the urge to eat carbs or do I eat carbs and get PEM” is both. They also aren’t independent. I’ve found that during PEM and before crashes my body cries for more energy and wants carbs like something is wrong. If I eat carbs then it...

@Hutan may i ask, and I definitely don’t mean to interrogate in any way, but why did you state that you only think the keto diet helps? Given what you’ve written to me it’s unequivocal that it helps you. Maybe I’m misunderstanding. Also it’s straightforward to prove that it helps or not by...

Sorry made some updates to post while you commented

For me the diet has continued to cause a significant reduction in many of my ME symptoms and, like others have stated in their follow-ups, increases my energy and activity envelope before PEM or a crash. It doesn’t prevent PEM or crashes when I try to stay at the activity level required to work...

When you deviate how do symptoms change? Did you go through any long enough period where you were really strict, measured glucose and ketones, and could evaluate any symptom changes?

Just checking in with those here who started a ketogenic diet? It’s been a few months or so, how are things holding up? Can you say now that it definitely improves symptoms (or not)? When you start eating carbs again and fall out of ketosis do your ME symptoms worsen? Have you measured your...