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From what I understand, time changes can be really awful for people with narcolepsy --- I wonder if it might be worth seeing if an org related to narcolepsy would get on board with helping...?

I did not find anything else and was quite surprised ME wasn't listed....

Apologies!!

@Sasha Floor Stand Kindle Holder with Remote Page Turner for Reading in Bed, Tablet Mount with Clicker, Kindle Accessories Tablet Stand Holder for Kindles Tablets iPhones 4.7-12.9 inch(Black)...

@Sasha I know someone who uses which is a floor stand for a Kindle and a remote to turn the pages... They have been able to read more because they no longer have to hold the Kindle or reach to change pages, etc.... I hope you find something that works well for you! ETA Deepest apologies for...

Are you thinking of something like this (Common Data Elements for ME)? note - apparently revisions are underway https://www.commondataelements.ninds.nih.gov/Myalgic%20Encephalomyelitis/Chronic%20Fatigue%20Syndrome

It's nice that RFK Jr was able to answer these questions and in a manner that I approve of, but for me that does not detract from the many things he did NOT answer or answered incorrectly. He said, for instance, that kids under 6 are not at risk for COVID. Uhhhhh... That's not the same as saying...

One of the things that seems to be held against PwME and PwLC is that so many different parts of their bodies are affected and affected so profoundly. Many healthcare professionals look at lengthy lists of someone's symptoms (or diagrams of where they are) and they feel certain that this cannot...

@Oni - I am sorry you have to have surgery. I hope it goes smoothly. Perhaps some of the following might be useful? https://ammes.org/anesthesia-recommendations-for-mecfs-patients/ MCAS and surgery https://tmsforacure.org/perioperative-management/ These are about surgery and anesthesia in...

Thanks @forestglip - I should have worded it as taking these meds since before the pandemic.... (I will edit my post.)

I've mentioned it before and hope it's okay to bring up again. (Mods please delete if it's not okay) Has anyone talked to/studied the PwME who have been on anticoagulants, low dose aspirin, and/or statins to see how/if their level of function has changed since they started taking them? EDITED...

Perhaps this is to justify the existence of CDC's ME work? I mean, it's not as though anyone else has used the voice of the patient to help drive understanding of illnesses... Right? ;)

For something unrelated I was doing today I searched for a definition of PEM/PESE. This came up (I hadn't seen this portion of the site Library Of Medicine before) Postexertional symptom exacerbation MedGen UID: 752115 •Concept ID: C2732413 •Sign or Symptom Synonyms: Excessive...

@Mij And in the discussion section it says The references include the Walitt et al deep phenotyping article

In the section on implications it says

How does one use a Rankin Scale or a Modified Rankin Scale if one already had disabilities?

I am very glad to hear this and look forward to reading the article!

This is interesting. It would be nice if there were a way to take into account the change in wages of those who care for PwME....

As I understand it there isn't sufficient bipartisan support for it. So even if it were brought for a vote, the likelihood of passage is minimal at best. (Prove me wrong Congress!! I will celebrate if you prove me wrong.)

Ah! That makes more sense. I too hope it isn't all Benadryl (and generics). Here's another article the proposal. (there is an upcoming public comment period mentioned) https://arstechnica.com/health/2024/11/fda-proposes-ditching-common-decongestant-for-being-completely-useless/