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I was prescribed mestinon by my neurologist as an additional "test" for myasthenia gravis. I didn't respond to mestinon, and was at a fairly high dose. I didn't have a bad reaction either. I just felt overall a little worse on mestinon.. a bit more "malaise".

I would agree with you for most supplements. But with a bit of cold, I don't see the risk or uncertainty. People have been doing things that cool their body temperature since the dawn of time. I used to sometimes jump in Pacific Ocean water so cold it gave me a headache when I was mild. Some...

Younger's ice suggestion, and someone's keto diet reference were the only treatments I heard at the symposium that didn't come with a warning. Ice has always helped my cluster headaches. Never tried whole brain cooling, though.

Yes, that is my impression. Though how to define "recovery" seems to be an ongoing issue for us. ;) Montoya and the CDC seem to be at odds with each other. I wonder if the new CDC educational materials will more closely resemble the CDC's current position of always prescribing some exercise or...

I'm noticing some disagreement between Montoya and the CDC on exercise. Both say there are opportunities for some ME/CFS patients to increase exercise capacity. Montoya: ME/CFS patients in a recovery phase can increase exercise. CDC: ME/CFS patients who "listen to their bodies" and have had...

What a great video. Wow.

The CDC has stated in the past that their ME/CFS physician education materials (for Continuing Medical Education credit) would be available sometime in Fall, 2018. Given that the CDC's ME/CFS "Information for Healthcare Providers" was 6 months late, I am skeptical about the timeline. However...

Agree 100%. Given that doctors already understand and accept that some pulmonary patients physically cannot increase their exercise capacity reduces medical skepticism about exertion intolerance in ME/CFS. Even if the causes, details and treatments of the two conditions are very different. One...

Heart or Lungs? Uncovering the Causes of Exercise Intolerance in a Patient with Chronic Cardiopulmonary Disease https://www.atsjournals.org/doi/abs/10.1513/AnnalsATS.201802-073CC Clinical paper about exercise intolerance in cardiopulmonary disease. I don't have a subscription, so don't know if...

Have to weigh the possible benefits of a flu shot against the likely crash from the overexertion of traveling to get a flu shot. Things healthy people don't have to consider.

Scientific American article on the search for an Alzheimer's biomarker, and how both the FDA and Bill Gates have made finding an inexpensive blood test for Alzheimer's a priority. We Need New Biomarkers for Alzheimer's Disease They're essential to coming up with better treatments, and a new...

Abstract - https://www.nature.com/articles/s41593-018-0227-9 Article: Lymphatic Vessels of Brain Carry Messages That Appear to Promote MS, Study Reports https://multiplesclerosisnewstoday.com/2018/09/20/brains-lymphatic-vessels-carry-messages-that-may-promote-ms-study-reports/

Of perhaps some relevance, the US Centers for Disease Control and Prevention (CDC) says in their new "Info for Healthcare Providers" under ME/CFS Etiology and Pathophysiology: Seems that emotional trauma is still on the table as a cause of ME/CFS.

This is essentially what Healthwise said (in addition to citing NICE guidelines) when they downgraded GET/CBT, but didn't remove them. Healthwise asserted GET/CBT anecdotally remained helpful for some patients, and didn't want to completely remove this treatment option. It took another year...

I'll simply say it's not Komaroff and it's not Gluckman doing the updates and responding to my emails. :rolleyes:

Thanks. Note if you have a Spotify subscription, you can listen to full Anette Gilje albums in the Spotify client software.

Noticing some changes on the UpToDate website. There is no longer any mention of GET/CBT the front page. The article, however, still uses the bizarre term "CFS/SEID"...

Because it's blue, the cock would clearly benefit more from CBT than SMC.

Revisiting UpToDate again. After a strongly worded message yesterday, I got a ping back today. I requested UpToDate remove the old inaccurate ME/CFS content until the new content is available.

AfME stops talking when it is pointed out that their "do all kinds of research and see what works" philosophy can harm patients. AfME can't accept that poorly done research can be worse than no research at all. After all, they are just trying to help. :banghead: