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My understanding from Cort Johnson’s two blogs on rapamycin on healthrising.org on July 6 and Nov 14, 2023 is that the Simmaron study is “designed to provide data needed to get funding for a more rigorous placebo-controlled trial.” More information on rapamycin treatment can be found on Dr...

MassME Annual Meeting October 28, 1-3 pm ET We are excited to announce that Pulitzer Prize winning science writer Ed Yong will be the guest speaker at our Annual Meeting this fall. MassME.org is one of the better state organizations for us. This meeting will be on zoom.

Yeah, we are the vanishing people. It would be nice if research could catch up to us before we turn into ghosts.

Researchers always seem stuck looking either for infection or inflammation. I find this to be a bore, coming out of the old view of illness as something hot and intense. Everything about my own condition is slow and low. I would like to see brain research that looks for inactivity, like a...

No, I never went to a concussion specialist. I did have 3 hard knocks to the back of my head from 3 backward falls in my early 40’s, but after only a very brief dazing, I seemed ok. Other parts of me were worse hurt, but I recovered ok. Did not bother with my primary (only) doctor who would not...

Power relations often dictate not only the perspective on reality and the interpretation of reality, but also what are considered to be the facts themselves. This is the basis for tragic errors, missed opportunities and grievous losses. Simply speaking, it is stupidity—stubborn, dedicated...

Yes, gaslighting and quite a bit of abandonment have been my experience too. But I've also had a lack of energy and initiative. The hurdle that is the communication gap has seemed greater too with mostly just zoom, email or phone to cross it. More deeply, there is a bridge between very...

@rvallee I really appreciated your humor above. I also think it is important for us not to take in any competitive sense a "finding" a researcher might get about a symptom which might come first or the one that is the most derailing for someone's life. ME arrives at different times in...

@Perrier Best to listen to Dr. Klimas' talk, to find out what she says in this overview. The organization interviewing her, Body Politic, had trouble with the video until around 12:20 into it, so start then or a few seconds beyond and click on Play. My imperfect memory says she does not specify...

Just a personal note that it was indeed the cognitive and memory problems I fell into 26 years ago that made it irresponsible/impossible to continue in my job. I had the sleep problems, fatigue, drop in stamina and other symptoms indicating drops in various hormones, but it was the cognitive...

I am so grateful I got to see most of this excellent talk, with slides--a must see, I think, for current information as well as the need for those of us in the U.S to advocate for our patient community to be included in the very large research budget that the NIH is going to be allocating to...

Is there a way to see it? I go to the link and it says it is livestreaming but can't see or hear it-- Success!

Thank you, Matt! Your article, by which I also mean you, and John Prine are well worthy of each other. I had not even known of this singer until I started reading about a few of the people who had been lost to covid, starting last year. His qualities shone the more I read and listened. I found...

@Sean said, "My muscles are not weak, they are not usable." I like how concise this description is! For twenty years my muscles continued to be firm and strong but I was actually pretty weak--unable to make use of that strength. But in recent years my increasing problems from old age as well as...

Effects, or resulting symptoms, that should be explored are: abnormal muscle tightness, abnormal aching and abnormal weakness after muscle use/exertion. This tightness can range from aching to spasm. For me this can take days of recovery involving careful stretching, massage and gentle movement...

Moderator note: This thread has been split off from Possibility of ME or PVFS after COVID-19 And merged with another thread about the same podcast. ________________ This morning, a public radio program in the USA ran a program on those with lingering symptoms, "the long haulers", post-Covid19...

Looking for good suggestions on how to get the fragrances etc out. I end up re-washing 4 or 5 times, one time with white vinegar. But even all this doesnt fully get rid of it. Manufacturers add sticking chemicals to the fragrances which make them bond closely with cloth. The fragrances...

Yes, they came up with clinical descriptions and criteria, also research criteria, before any really big, detailed studies were made. Do we even have those results yet? I think what we have so far is the accumulation of many small studies, plus »anecdotal » reports and what our few expert...

I appreciated Robert Naviaux for what an intuitive mind he has, so able to see patterns and interrelationships when others may not. The science will have to catch up, of course, before all the dots can be connected, and then the patterns discovered may turn out to be somewhat different than the...

Re: @Snowdrop « There is a bonus for psychologists who espouse this view ». The bonus is positioning themselves as superior to people who experience intense, recurring pain and who have the memory and cognitive capacity to know it will happen again. Coming up with a label and supposedly...