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Sidenote: The America’s Cup Race is the oldest international sporting competition in the world, begun in 1851 by the Royal Yacht Club. It was immediately dominated by the New York Yacht Club every time, until the race of 1983 when a boat named Australia II won it for Perth. The last time New...

I definitely agree. I think these researchers are looking in the right place to get a handle on the neurological elements and dynamic of our illness. Here is to the Australian competitive spirit—America’s Cup Races, here we go. Even if earlier studies from Griffith University may have promised...

I wonder whether impingement or impairment of the nerves involved with the autonomic nervous system, nerves which begin in the brainstem to my knowledge, are a big part of the problem? Hope someone will comment, as I feel too ignorant to understand how this research, whether what has been done...

https://www.omf.ngo/wp-content/uploads/2019/09/2019-MECFS-Clinician-Summit-Post-Summit-Announcement.pdf https://www.omf.ngo/2019/09/01/new-guidelines-for-diagnosing-and-treating-me-cfs/ The second link above includes the kind of information that may be relevant here. I wanted to link to Dr...

This is the most exciting discussion I have read lately.

I have been on 4.5 mg for 9 months and it has done nothing at all except produce some sleep disturbance. I will be very interested to learn why it helps some and not others of us, if we ever learn.

@Jonathan Edwards makes the point that there is no evidence that ME/CFS is an inflammatory disease. My own lack of any discernible benefit from drugs to treat my supposed Mast Cell Activation Syndrome as well as SIBO, and my theoretical neuroinflammaton by LDN, sure seem to bear out this idea...

Impaired/slowed signalling from the brainstem is a finding/theme in the work of Leighton Barnden and also Michael VanElzakker. I wanted to bring this up as soon as I scanned this thread, to add it in to your considerations. Personally, I do see the brainstem as the headquarters of the problems I...

I would strongly second an interest in more brain stem studies as that is where I believe some key information can be found relating to slow processing speed, autonomic dysfunction and neuropathy, odd transient paralysis, breathing stoppages—?

Without remembering the exact details and words in that part of the presentation, I think the idea was that if it is a virus, it is a « genius » virus vs a « dunce » virus. They were making a joke as well as a good point, while talking about the different history of our illness vs others like...

I was at the Symposium and happened to read this, so I asked Maureen directly if she believed that the cause is a virus. She made a point of refusing to specify or state this at all. She said that what she thinks matters is what is happening/being done—the action rather than a presumed actor...

Infantilizing—is one way to put this. The fact that most of us are female is the reason this happens, as females in sexist, unconscious cultures get treated as if we were children. No one, including children should have their/our lives disrespected.

I found Naviaux’s long paper well worth reading, as hard as it was without an education in medical science. I could only tackle it on a good day, skimming what I couldn’t understand and diving in after every single point and pattern I could pick up. I will not try to summarize any of it here...

That is interesting. Though most of my body is usually cooler than other peoples, if not outright cold, I like ice water too and find it makes me feel better. Of course I like hot coffee a lot too!

I expect that the scientists among themselves in all their meetings and conversations probably discussed and maybe answered some of our question. Maybe it is obvious, but the amount they were able to convey in the time allotted to patient presentations is not everything that they hashed out...

When I was young, people might wear an ice bag designed for the purpose on the tops of their heads when they had a fever. You would just put in three or four ice cubes, just enough for one layer on the bottom of the double-layered bag. It would flatten out on the bottom so that it would stay up...

Yes, and I would enjoy meeting any other patients who will be there. What about a signal, since we won’t be seated in a particular area or have “patient” printed on name tags, as far as plans had developed a month back. Maybe an overhead arm wave is a bit too energetic or flamboyant for our...

I have had a dry eye problem since nearly the start of this illness 22 years ago. I learned to treat it with a boric acid eyewash I make myself. I couldn’t afford the eye drops or prescription remedies, but was lucky in that the eyewash I make and use at least twice a day is even more effective...

Isn’t that amazing—a doctor who outright refuses to see ME patients! Is that even legal?

I got diagnosed with SFN some years back and later went to a neurologist specializing in dysautomia. In the video, Dr. Systrom recommended that ME/CFS could look for doctors listed with Dysautonomia International, wasn’t it? The autonomic specialist I went to tried me on Mestinon, in addition to...