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I saw on the Survivor Corps website that they are asking people to send in questions for Dr. Fauci: Presumably they will select some of these questions to ask during the webinar.

Solve ME/CFS tweeted this today:https://twitter.com/PlzSolveCFS/status/1319407326621827078 I wanted a bit more info so I searched their website and found this (scroll down past the invisible disabilities week info)...

This line is so important! I had one friend who had multiple bouts of cancer (breast cancer, ovarian cancer). She finally died from it. During most of that time she was a lot more functional (able to work at least part time, needing less rest, able to socialize daily) than I was. I'm not...

I skimmed the NHS announcement and saw that they mention CPET. Is this an opportunity for someone to suggest doing 2-day CPET on COVID patients and then comparing those results to past studies with ME patients? Or is that a bad idea for some reason?

LOL! And this is why auto-generated subtitles are often called CRAP-tions instead of captions. When it's a minor error it's no big deal but some of the errors are pretty bad. I can hear pretty well. I can usually figure out what's being said (although sometimes accents throw me off). But I...

30 positive COVID tests: https://twitter.com/LisaDNews/status/1313178416477282305 (@PressSec means Kayleigh McEnany)

I checked the number of co-sponsors for HR 7057 yesterday and saw that the number had been updated to 43! :) It looks like 11 names were added showing a co-sponsor date of Oct. 1: https://www.congress.gov/bill/116th-congress/house-bill/7057/cosponsors?r=7&s=1&searchResultViewType=expanded I...

Ditto:mad: I'll just be over here, banging my head against the wall, don't mind me. :banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead:

I thought I'd add a link to Tom's announcement on twitter which provides more context for the interview. https://twitter.com/TomKindlon/status/1313115336028360704

https://www.youtube.com/watch?v=2hrPnK1OWXQ

For those not in the USA, it's looking like there may have been a "superspreader" event at the White House Rose Garden - announcement of candidate for the Supreme Court vacancy - that may have been the source for many of the recent cases - POTUS, FLOTUS, a couple of US senators, some...

On Thursday, Sept. 24, I started making daily calls to my congressional representative to ask her to support HR 7057. Her office is closed, but the message says they check voicemail. So I've been leaving messages every day. In the past, I've emailed her office about this every very week or two...

Thanks @Sly Saint ! I had missed this tweet for the teaser trailer. I posted on another thread (in the advocacy sub-forum - Mod note - now merged here) that the film-makers have put out a call for patient interviews...

(bolding mine) Thanks @Colin for transcribing those encouraging lines from the audio (TV?) program.

It looks like the ME Action website has been changed - that link used to work but it does not any more. Here's the new link - https://www.meaction.net/meaction-new-york-co-hosts-free-webinar-for-clinicians-on-september-30th/

Someone posted a link on twitter about a planned documentary called Relevium. https://glematiroad.com/relevium-documentary I don't know anything about this other than what I've read just now on this website, but I'm hopeful. If anyone on the forum has more info about this please share! At...

I didn't answer the poll because it's just too hard for me to disentangle all the different types of exertion. I think I'd have to purposely structure my activities to avoid different types of exertion for a while and then carefully record what happened. It's too hard to try to do that type of...

I have orthostatic intolerance all the time but it is worse during PEM. It's also worse right after any exertion. If I've been resting with my feet up for a couple hours then I can stand for a bit longer time before I get that "you need to sit down right now" feeling. But if I've just walked a...

Stories like yours are why I did not do a full sleep test at a lab. I've heard so many stories from ME/cfs patients saying that it was a waste of time, except for a few cases where apnea was found and a CPAP machine helped.

I'm just a patient, sick since 1990, who is sharing some thoughts. I hope this makes some kind of sense. I think that first statement is wrong. I don't think that most researchers who work on this illness [ME/CFS/SEID/PVFS?/etc] use CFS as "the term for the psych alternative." But even if I...