The FRONT page of the San Francisco Chronicle today! This is such great awareness and publicity of MECFS! Wow!
Janet Dafoe
12.3K posts
Janet Dafoe
@JanetDafoe
Caregiver for very severe ME/CFS son, advocate and fundraiser for End ME/CFS PROJECT at OMF and CFSRC at Stanford. The rest of my life is on hold...
Joined June 2014
- Just found myself wondering what the compensatory and punitive damages should be for all the times ME/CFS patients have been told they’re not sick, it’s all in their heads, it’s psychological, they have false illness beliefs, etc
- Happy 40th birthday to Whitney. I hope there are moments of goodness in your day today.❤️💔
- Happy birthday to this incredible guy! May he run on the beach again soon!❤️❤️❤️❤️
- The Stanford Working Group on the molecular basis of MECFS is meeting next week. Ron has invited over 150 great scientists working on this disease. We made a video tonight with him telling you about it. Should come out in a couple of days.
- I thought I should tell you that I haven’t been active on here lately because I’ve just discovered I have breast cancer again and I got pneumonia pretty bad. All at the same time. The cancer is small and should end up fine but I’ll have to go through some kind of surgery TBD
- Stanford working group annual meeting on the molecular basis of MECFS starts tomorrow and goes for four days. I will tweet as much as I can. #MECFS23
- Just had great video call with 2 high level officials at WHO. We explained who Ron is, describe the latest science, and advocated for better more accurate or useful information on their website. Ron has worked at WHO in the past. They seemed open to working with us. @DrTedros
- Im having a thyroidectomy tomorrow for thyroid cancer. It’ll be fine! ❤️🪶🙏🏼
- I just listened to the congressional hearings on long COVID. I don’t know whether to scream or cry. All this intense sympathy for people and statements that they can’t wait for 1 to 2 years for solutions. MECFS patients have been suffering for over 40 years with no solutions.
- I attended this inquest hearing remotely. There were over 90 people remotely attending. The only people I could see where the coroner and two lawyers from the trust. There were a lot of things that happened that shocked me and I consider egregious.“The state was unable, and to some degree, unwilling to treat her.” As his daughter with severe ME was dying "a painful and difficult death", Times journalist Sean O'Neill says he had to “fight” for her palliative care "because doctors didn't believe in ME”. @TimesONeill
00:00
