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@Perrier it certainly isn't fun not knowing when there will be a treatment. I was a young man when i fell ill. Now I'm an old man. Not sure how much time I have left. Not only no treatment, but no dispositive biomarker, or irrefutable understanding of what is going on to make us so ill. Bill

I never experienced "contempt" towards ME/CFS. I did keep my condition quiet in my work life, but that's because I was in a highly competitive field where one needed to be able to perform, but that's different than feeling I'd be subjected to derisive contempt as a result of having ME/CFS. I...

I missed this point earlier. In my experience the term ME is virtually unknown and unused in the general US population and it is not that much different among people who have "CFS." ME seems to be mostly embraced by a subset of people who consider themselves activists, but it has not been the...

As to your point that the CDC "now" uses the term ME/CFS as opposed to CFS that is correct and that's why I used the qualifier "at the time." Prior to the adoption of CFS in the United States we who were ill with this illness had no commonly available term to describe our illness. It was a...

I've had the best luck trying not to actively "suck" or bite on the sliver of ginger (which is tempting for me as I like ginger), but to sort of let it float on one's tongue. That way a sliver lasts for hours and slowly bathes the throat. I believe ginger has analgesic and antiseptic qualities...

Having a sliver of raw ginger root to (not to suck on exactly, but in one's mouth) is a polarizing option, but for me nothing has proven better for relieving a sore/irritated throat. It's not for everyone, but since you like ginger tea perhaps it is an option to try? Bill

Yes, of course, this is an international forum which includes many places that have different histories with the illness and the terms used to describe it. The point I was attempting to make is that CFS is the term used in my little corner world for many decades prior to my having ever hearing...

I try to comfort myself by saying we did not even know that this illness was. AIDS was actively killing people who i knew in my circle and having a "mystery illness" that I wasn't sure wasn't contagious didn't make being open easy. The film industry is a harsh mistress. Careers can disappear...

ETA: Sorry I edited out half my post when trying to fix a typo. Stupid brain fog. I will try to reconstruct the first paragraphs I was 26 when I was stuck with my illness. At the time I was working in the highly demanding television and film industry in Los Angeles and things were going well...

I think it is odd that I've never thought about a link given the amount of hydrating I do. I can't say that I'm driven by a feeling of extreme thirst, but I drink a lot of water in a day. I feel the need even if "thirst" isn't what motivates me directly. Perhaps i drink so frequently and...

This is interesting. I've never given it a thought before, but I realize upon reading this that I always try to stay very well-hydrated and I think that's especially true when I'm stressed or feel under threat of a PEM crash. When I was still working I'd purchase water by the caseloads and suck...

I would love to have a personal physician who I felt had a basic (or better yet, advanced) understanding of what it is like to have ME/CFS and who kept abreast of the research. And if they had to say "we don't know" to a lot of my questions and were slow to suggest trying things that might cause...

In my own case, I've never experienced a "deep burning pain" in my legs (or anywhere else in my body) after exertion, nor do I have myalgia, so I'm not too keen on Ramsey's definitions as characterized here. Nor with a name like ME that presupposes one has myalgia by definition. Nor do I...

I have a persistent intolerance (strong chemical sensitivity) to acetone. When/if I'm exposed to this solvent I experience of cascade of negative reactions with include violent fits of coughing, difficulty breathing, wheezing (what I imagine asthma--a condition I don't have--might feel like), a...

Not sure, but I don't experience (as best I understand it) muscle fatigability weakness following exertion, I have fatigue and symptom amplification that always includes increased brain fog. My muscle strength remains fine, i just lack the energy to use them without triggering a crash. So Ramsey...

We have very different perspectives over the term CFS. It was a huge step forward for the CDC to come up with a highly improved term from what had been called in the media "yuppie flu." I don't agree--from my perspective--that the term CFS was "like a military coup and was designed to destroy...

With due respect, to refight old battles over the name and to claim that CFS is just fatigue reopens old wounds for those of us who live in places where CFS is the dominant name used to describe our illness. I do not agree that the name choice of CFS is a "deliberate ploy" to destroy ME as a...

That isn't what CFS means--now, or ever. CFS is ME. Bill

Unfortunately, it appears that Dr Steve Olsen has retired from NorCal Kaiser. I tried to reach him up in Santa Rosa to see if he knew of a physician in SoCal Kaiser who he'd recommend to me when I discovered he'd retired. Thanks to the heads-up and hard work by Jeff @Webdog I was successfully...

Like a metaphorical bandaid that protects for one day and then rips open the wound and makes it much worse the next. Certainly dead-end for me. For sure. Still, I have not been able to toss out my "supply." After 5 years (or so) I think I have the original "monthly" bottle with 26/30 remaining...