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Re the symptoms of swollen glands and fevers, makes sense they’d be related to what kicked off the ME, as well as possibly the length of illness. I believe my case started with an enteroviral illness.

I question when I hear again of fever and swollen lymph nodes. Didn’t this originally come from a definiton from the US based on a post Epstein Barr illness? I am forgetting. I certainly have neither. My understanding is that most of us have low body temperature and low other things in keeping...

I had a balance problem during my first year and needed to grab for the wall too. At the time I still had a horse. Fortunately she was very smooth gaited and cooperative; also we had a ring to use on that property. So I limited my riding only to slow, careful riding in the ring by ourselves...

@MeSci Thank you! I skimmed through your blog entries on animal models as I feel horror towards it and agree it is one of the more evil things human beings have done—along with so many others. Killing an animal for food and using a animal to help with transportation, when done respectfully in...

@MeSci Even if the study shows structural damage to the brain and microglia activation? Why is so much research done on mice if it isn’t closely related to what happens in humans? I would think that a study like this would at least establish a possible long term consequence for those...

https://www.sciencenews.org/article/flu-virus-brain-memory-mice This is progress—damned slow in coming. Annoying that they didn’t note any connection between these types of effects on mouse brains and memory performance with ME, post-Lyme or other post-infectious neurological effects. But maybe...

I got one. I was suspicious but clicked on the first link. When I saw they had my information but wanted me to fill out credit card details and—hurry, hurry, offer about to end—I stopped. I went to the website by regular means, questioned it but did not hear back. It’s disturbing how vulnerable...

It is worth looking at this letter again, I think. The 4th is for all patients. The afternoon of the 3rd is open to patients but my impression is that the conversation will be focussed on the situation in Canada for research and patient care. Asking ME/FM Action Network would clear that up, or...

https://mailchi.mp/b7f5e109ee2a/montreal-research-conference?e=412dfbb2cd Here was a letter today from ME/FM Action Network about this conference. Hope it is ok to link to it this way. It explains how this conference came about and more about what will happen during the 3 days.

I wonder how accessible it will be in terms of language, English and French? How is that handled?

Well, it is still valuable to bring people up to speed, and it looks like they are aiming on having a crowd. So it’s encouraging. It takes numbers of people to learn and understand something before a paradigm is apt to change. And it’s a good time because the science is strong and research field...

I am impressed that they have taken the disappointment and trying to move in other more fruitful directions. The history of funding and research for this disease in the U.S. and other places is that research ideas which have been studied by means of poorly designed projects with inconclusive...

@ukxmrv Wow! There’s a list to save. I seem to be intolerant of so many medications, often getting nauseated, so I will never continue after this reaction sets in. It has made me wonder realistically what will happen, what I will do, as I am get sicker and older. My bottom line has always been...

@BurnA I think Dr Ron Davis had mentioned a while back that it is something in the serum. Did Dr. Newton notice this too? Maybe someone else will remember.

When asking the ME body to perform at normal levels of exertion, there’s a lot of fallout, such as more oxidative stress, more lactic acid in the brain and muscles causing brain fog and aching, more work for the liver to process the products of anaerobic metabolism (Hope I have this vaguely...

Dr. Chris Armstrong’s team in Australia has done metabolomics studies using two types of machines, the kind Naviaux uses, Mass Spectrometry (MS) as well as a machine which does Nuclear Magnetic Resonance (NMR). Armstrong said it is ideal to be able to use both as each excells in a different way...

I also wonder what the vascular and endothelial problems are such that body tissues aren’t as well served by the circulatory system as they need to be? This can lead to damage/destruction of small nerve and autonomic fibers. Mella didn’t refer to that in his brief overview, but the autonomic...

Mella said in the lecture above that the research on ME is showing it not to be an autoimmune disease, not primarily autoimmune. Is the point of doing further research on strong immunosuppressants of any kind to elucidate more about what is going on in ME? That idea seems sound enough. Or is the...

For anyone reading this thread who hasn’t watched the video (I know it is hard for a lot of us to do—It was hard for me) Mella clearly advised patients not to try to get treated anywhere outside of a research study with Rituximab, or Cyclo, or any other major immunosuppressant with significant...

I was very impressed by this lecture, not only by all the research his team at Bergen are doing but also by his (their) intelligent, wide-ranging review of the best recent research in the field. Quite a good summary! As far as I understand, researchers are supposed to do this, a thorough review...