Janet Dafoe
@JanetDafoe
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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
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The FRONT page of the San Francisco Chronicle today! This is such great awareness and publicity of MECFS! Wow!
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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
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Happy 40th birthday to Whitney. I hope there are moments of goodness in your day today.❤️💔
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Happy birthday to this incredible guy! May he run on the beach again soon!❤️❤️❤️❤️
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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.
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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
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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
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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
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Im having a thyroidectomy tomorrow for thyroid cancer. It’ll be fine! ❤️🪶🙏🏼
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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.
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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
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Ron Davis statement on NICE pausing new guidelines:
NICE has abruptly paused the publication of its new guidelines for ME/CFS, arguing that those who are treating patients need to agree with the guidelines. This is a false argument. Medical advice must follow the evidence 1/
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We were interviewed on zoom today for 2 hours for a PEOPLE MAGAZINE story! I sure hope we did a good job. Such good publicity for the story of this disease. The people at the mag really love the book! There’ll be a video too. I didn’t know ahead of time so my hair was a mess. Ha!
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Hiking “with Whitney” in one of his favorite redwood trails on his birthday.
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The surgery went well. I’m still in hospital because they want to monitor me. I have pain but they are controlling it pretty well. ❤️ Thank you so much for all your lovely messages!
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Structure of dopamine earrings gift on NEW YEAR’s Eve. Ron explained that that’s the neurotransmitter that gets triggered when you fall in love! 😍❤️😍🥰
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New buddies doing amazing things for MECFS. I cried today because I was so happy and hopeful. Braydon Yellman, the doc working with Cindy Bateman, was there all afternoon. He was GREAT! So knowledgeable and helpful. Impressive. Hard to describe what’s going on here. ❤️🎉
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Ron and I can make a video talking right to those people, telling them of our experience with Whitney and going on to explain that it’s a real disease and how to take care of their loved one. then you could give it to the person who is a problem. what do you think? 2/2
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We are in Norway with Ashley and Theo and kids and Theo’s relatives. Monday we begin visiting MECFS patients, researchers and caregivers in Stavanger, Bergen and Oslo.
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You can’t? I guess you haven’t heard of MECFS which affects 2.5 million people for over 50 years and has been ignored the whole time. The same disease. Yes. It’s very hard to believe that so much suffering can be ignored!
I cannot believe that we're essentially completely ignoring a condition that's affected 1.5 million people, of which 700,000 people affected now for more than a year. Ignoring long COVID will be our undoing- given the huge impact it's clearly having.
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Ron spoke to a whole big lecture room full of Stanford MD/PhD and MD students yesterday. People standing in the back. All about ME/CFS, the neglect, lack of understanding and medical care, bio basis, his research. They were really shocked and interested and asked lots of Qs.
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Here we are in England for the Invest in ME conference (Fri) and science meeting (Wed &Thurs). Rob Phair, Wenzhong Xiao, Ron Davis, David Systrom and me.
#IIMEC15
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Wow! Amazing new article all about Ron and the possibility that he might be able to solve MECFS and even lung Covid. In the times of London.
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@TimesONeill
I wondering why nobody’s posting this photo of Whitney in December 2016 I took the picture. you have his & my permission. I’ve sent it to you. It’s what Sarah & Maeve saw so they knew that tube feeding was possible. The red is from ice he put on his stomach.
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This is so cool because he has a control group of healthy people who had to be on bedrest for 60 days!
#mecfs24
Robert Wust talking about PEM. Exercise is NOT good medicine for ME. Muscle abnormalities in PEM. LC and ME groups. Not due to inactivity. Studies muscle biopsies.
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Happy New Year! With hope for treatments and cure for MECFS! ❤️🎉
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Amazing happening! Jen Brea was visiting for the first time in a long, long time and Whitney asked for Ativan while she was here! I asked if he'd like to meet her and he said yes! So she went in his room and they cried and she talked and he pantomimed for a while. Rare.
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How a scientist finally proved chronic fatigue syndrome is real
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I’m having surgery on my spine tomorrow for spinal stenosis. I am hoping it will help with the back pain and enable me to walk more without hurting.
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I’m home since dinner time. Food tasted so good. Pain managed ok. Waiting for pathology results ( 5-7 days) to find out if margins are clear and if I have to have another surgery. Probably need radiation for 3 weeks. Hope I can still attend Invest in ME iin June! Thank you for ❤️
I'm asking the
#MECFS
and
#LC
community to join me in sending
@JanetDafoe
thoughts, prayers, and positive vibes. Her pneumonia has cleared. She's scheduled for a lumpectomy on Monday.
Wishing her a wonderful Mother's Day tomorrow, successful surgery, and complete healing.
Share!
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#mecfs24
Robert Wust talking about PEM. Exercise is NOT good medicine for ME. Muscle abnormalities in PEM. LC and ME groups. Not due to inactivity. Studies muscle biopsies.
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I just got an idea for a new video. I see so many posts about people whose carers or family members or friends do not understand the disease and who are not helpful and do things that hurt and make it worse. 1/2
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I have surgery tomorrow for a lumpectomy to take out a few risky cells. Should be straightforward and fine, but not fun.
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People Magazine Is putting out a big issue dated April 12 that will reach millions of people and it will have a four page spread with photographs talking about “the Puzzle Solver” and Whitney and Ron and our family. It will be released a few days before that. I hope it’s good!
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@DrTedros
@WHO
The director of Dr Tedros’ office just called me. Ron and I spoke with her at length. She is lovely! We were able to tell her a lot of things and Ron offered to work with WHO like he did in the past and she was just really interested in all of it. Tedros will follow up soon🎉
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On Severe ME/CFS Awareness Day I’m sharing this scale Whitney created to document his improvement on Abilify, when he always remained at “0” on all other scales.
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I’ve recovered enough to sit up for a few hours with my babies! MRI tomorrow
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@NINDSdirector
EFFORT PREFERENCE?!!!!! Are you even on the same planet as us? This is HARMFUL!!!! This is going to progress that we’ve been fighting for for so long. If you could see Whitney he would know this has nothing to do with preference! I am so outraged I can barely stand it.
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Ron Davis is now spending 2 days with bio & bioengineering depts at U Texas talking about developing hi tech. He's focusing on ME/CFS. 300 scientists focused, interested, and being blown away, both by the technology and by the enormity of such a major disease being neglected.
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Whitney has had such a bad day today and yesterday. I don’t wanna go into the details but please send him prayers and good thoughts. I think he feels especially miserable. 😨
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This is just plain ridiculous. Where is he getting this idea that long Covid is so much worse than MECFS? He just continues to cause problems. It’s unbelievable. He’s very aware of how bad Whitney is. We just had lunch with him in England.
Very disappointed in Dr. Avi Nath's comments today:
"The population affected by long COVID is so much larger, and symptoms are so much more severe compared to ME/CFS that we decided that what we should do is focus on long COVID."
Would he like some photos of ME/CFS patients?
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@DrTedros
@WHO
You were said you were going to contact us. Ronald W. Davis, PHD, professor of Biochemistry & Genetics, Stanford univ, who is doing full-time research on MECFS and is a leader in the field. We never heard from you. He used to run a program at WHO. I am his wife. Offer still open!
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I told him all about his new life and what was in store for him. He took it all in. Three days old.
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Coming soon! Series of weekly updates on Ron Davis lab’s research with me interviewing him. I’m excited!
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@MrkStdngr
Please let me know how Ron and I can help. I can send links to a bunch of articles that will make it clear that this is inappropriate. Ron and I can talk to whoever you want. Please let me know.
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Whitney (on Ativan) asked for Jen Brea to come back for his next Jtube change in hospital. It happened Monday. She rode in ambulance & spent 14 hours with him. They had time to "speak" alone. How great for him to have a friend. It was so wonderful.
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These people say that there’s no cure for ME so they can’t do anything. They won’t even treat the symptoms. Can you imagine saying that because cancer or MS or Parkinson’s or lupus is not curable that they won’t treat the symptoms or give them food if they can’t eat?
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Ron and I just changed the bandage on Whitney’s Hickman port. One the few times we can touch him. He’s warm and alive. Can’t respond or look at us. I feel so sad and I miss him so much. A reminder of how totally motivated we are to find answers.
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I’m going with Ron to London Invest in ME conference!
I hope to see lots of you there!
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Ron and I with 2 hour old new granddaughter. "Hi Grandpa!"
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The last 2 days at Invest in ME have been really goood. New young investigators and fab “old” intrepid ones. From many countries. New this year were a LOT of references to interventions, treatments, clinical trials. Lots of research progress. I’m tired! And exhilarated.
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#MECFS19
Hello to all you patients out there. We are thinking about you. This group is so dedicated to getting you better! ❤️
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We’re going to the invest in ME conference near London leaving Monday. It’s always so hard to travel and really hard to leave Whitney for that long. Kind of scary but he has good caregivers.🙏🏼
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I attended the first meeting of this inquest on Monday. It was shocking to me
“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
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He pioneered technology that fueled the Human Genome Project. Now his greatest challenge is curing his own son
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The hospital was efficient for a change and we got home at 4. We told Whitney it is our 49th anniversary and he hurried up and kept gesturing for us to leave and go out to eat! He was so sweet. So here we are!
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I just sent this video that Whitney made to Avi Nath at NIH. To give him information that long Covid is not worse than ME.
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We are so sad to hear of the passing of Dr Paul Cheney. The whole ME/CFS community owes so much to him. His courage, tenacity and insight. Dedication. We are so grateful to him. ❤️🌹🌸🌺🌷🌻🌼🌹❤️
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Fantastic comprehensive series on PEM, cardinal symptom of ME/CFS. This needs to be re-posted everywhere. GET DOCTORS AND EVERYONE EDUCATED!
PEM is unique to
#MECFS
and has not been documented in ANY other illness, absent even in those suffering post-chemotherapy complications. Access the full series here:
@OpenMedF
@LBatemanMD
#PEM
#PESE
#LongCOVID
#MedEdMatters
#medicaleducation
#MERC
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@MrkStdngr
I just talked with your dad and told him that the most important thing he can do for you is that you don’t have to exert yourself or do any exercise and that you are not stimulated with too much noise or light or any kind of interactions and that will make you worse.
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#mecfs24
Ron Davis. Initiating discussion of how to integrate the various theories to really explain this disease. Connect our theories.
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I attended this by video. This is good coverage.
NHS wards not capable of treating ME patients, expert tells Exeter inquest | ME / Chronic fatigue syndrome | The Guardian
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It has to get better over there. They are killing people. Sarah and Sean were amazing and they are doing a service to all ME patients in the UK, fighting for better policies that would enable treatment for the horrific ME symptoms.
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and not personal beliefs or political positions. If doctors treating ME/CFS patients do not agree with evidence-based guidelines, they should not be treating these patients. This is why we have guidelines. When guidelines contain treatments that don’t work or are harmful, then 2/
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Please! It’s so important to sign this petition asking NICE to publish their recommendations and not hold them up for ridiculous reasons like everyone has to agree, for Pete’s sake.
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Today was our 51st anniversary. We had a lovely day socially distancing watching our granddaughter and chatting with Ashley and Theo. I am so grateful to have spent my life with this man.❤️
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I made a poster of Whitney's message to patients. I want it to be available to anyone who wants one. We will send high res coot for you to get printed. Let me know if you want it. That's his fist through the keyhole of his door. Fighting for himself and everyone.
#MECFS19
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Welcome Amalia Rose! 6 pm. 8.5 lbs. Beautiful little girl. Ashley and baby and everyone happy and healthy and blissed!
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Merry Christmas to our friends and fellow warriors around the globe!
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Wow! I just got to 6001 followers! Amazing. So happy to be connected to such a wonderful group of people and doing my best to end or ease the suffering. Looking forward to a world tour when Whitney and you guys are better!
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Whitney going to hospital tomorrow to get j tube replaced and to get an MRI under anaesthetic of cervical, thoracic, and lumbar spine and brain. Will be a long hard day.
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Mohsen talking about all roads lead to mitochondria. Mito dysfunction and oxidative stress. Cause of PEM. He added this IN RESPONSE to my telling them that the
#1
symptom patients would love best to be fixed is PEM.
#MECFS2022
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Our son is so sick with ME/CFS that he can’t talk or eat. He is fed through a j tube and has been lying in bed since 2011. So sensitive to sound He has to wear headphones, unable to tolerate human contact.
#MEAwarenessHour
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physicians all over the world continue to recommend inappropriate and harmful treatment for ME/CFS patients.
@NICEComms
6/6
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#mecfs24
Working Group on Molecular Basis of ME/CFS starting now! Sept 3-6. Lots of great speakers. It’s confidential so they can present unpublished data. I will tweet agenda
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Ron Davis “The effort to understand this new virus is exactly what we’ve been doing for ME/CFS for years. The diff betw our progress & theirs: lack of support from our federal govt!” Scientists are unraveling coronavirus with unprecedented speed & openness
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