Another great blog post by Samuel.. https://www.samuelkronen.com/p/greatest-medical-scandal-of-the-century
From this interview with the NIH Director:...
18 deaths in six years from malnutrition in very severe ME? This is even more than I knew of or would have expected. This is crazy.
Jonathan.. You’ve mentioned this hypothetical scenario twice.. is this a hint at an early finding? :)
Quote from Nath.. ???!!!!
Amazing.. about $46k.. good for them for doing this. Great way to show the disease.
Please tweet at the Weekly Show to ask Jon Stewart to cover ME.. lots of the 250+ tweets are ME and LC related.. [MEDIA]
https://www.biorxiv.org/content/10.1101/2024.06.17.599450v1?ct= [MEDIA]
I think the problem is that too many patients who do have what is considered “normal imaging” present with symptoms which are ME + some of the...
Limb girdle muscular dystrophy mentioned in this article, amazingly albuterol is the treatment — it would be an easy med for ME patients to try,...
Find it so interesting that clinicians talk up LDN and mestinon.. Have never spoken to a patient where either help primary ME symptoms, and most...
@Trish I used the word “harp” which seems to have upset you. I don’t know if people are continuing to voice disapproval, or if he is just upset at...
I agree with you. Everything you say is spot on, and you could see the hurt / frustration in his facial expression. He simply is not used to being...
Avi Nath doubled down on criticizing patients for being critical. Jeannette Burmeister tweeted about it. [MEDIA] Jeannette Burmeister...
Coincidental improvement / perceived feeling of improvement that may be temporary.
Errors, omissions, potential bias: Why some ME experts are calling for a retraction of the NIH intramural study...
That’s great to hear.. Do you feel the quality of sleep you’re getting is better, or that it is improving your ME symptoms or baseline? I would be...
I use a product called Frutin gastro gel for reflux, I can’t tolerate PPIs. I thought I had asthma for about a year bc reflux was silent to...
So Koroshetz thinks this is a very important, completely valid finding. I don’t get it. These are smart people. How can the patient scientists on...
A severe patient, Elizabeth, made this site and film very slowly over 6 years (with help from a designer) Maybe be less critical..? I think she...
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