Pris Campbell

I just discovered on Amazon that the price of my book, Truth and Other Lies, has dropped. I’m assuming that will also be the new price ay Nixes Mates Books, publisher.Thank all of you for buying a copy. I hope more of you will now with the price lowered. #freeverse #vietnamwife

@Naomi_D_Harvey @DafoeWhitney @siimland i wish more people, especially in the medical field , were aware of this.

@siimland Unless you have ME/CFS or Long Covid with PEM in which case, excerise can literally harm you and make you sicker. People need to be more aware of this than ever now we’re in the Covid era. Old ideas that doing more *always* makes things better can cause harm.

Even small amounts of stair climbing can provide great health benefits Climbing 6–10 flights/day (~60–100 steps) is associated with: - 10% lower all-cause mortality - Lower cardiovascular disease risk - Better metabolic health - Improved cognitive function Nobody deliberately climbs stairs - stairs add incidental physical activity throughout the day - the increased physical activity is what drives these results Evidence: PMID: 37813170; PMID: 33543604

@DafoeWhitney I’ve gone through phases like that.

I think I might be stuck in a hyper sleep chamber in an alien movie. And you know what the alien is! #MECFS Just one of those weird phases where you can't stop sleeping, it will pass. But seriously, let me get into a backhoe and shove ME/CFS out the airlock! 😅

@DafoeWhitney I’m in one of those spots now and am depressed over it. I can move with my power chair between den sofa and bed but my head is too muddle to do the things cognitively I could do when better. Thank you for saying what I was feeling. I don’t feel so alone.

Feeling depressed because you can't do anythig but lie in bed is so hard. When you can be at least a little active you can write about the sadness, you can do something nice for someone you care about, you can make something like a craft even if it's trivial. You can find a way to work through the sadness or bring you out of it. When you're depressed because of the inability to do anything at all, you're just stuck in a dark hole and it often feels like there is no way to get out. There is a way out though - time. It is always fleeting. And we have to remember that - I have to remember that right now. There are so many beautiful, heartwarming, loving, life affirming times to come. But in the moment, it can be devastatingly dark. #MECFS #LongCovid

@DafoeWhitney My hand is up.

Raise your hand if you woke up feeling like an animal hit by a truck, hyperventilating on the side of the road 🙋

@DafoeWhitney That nastiness was uncalled for. I’m glad you posted this. Your folks deserve a round of applause for all they do.

Misinformation spreading about Ron and Janet - RE: masking I try to avoid Twitter/X drama and ignored the original post, but it seems misinformation is still spreading so I’m going to set the record straight and have a few words.  When drama turns into misinformation, I feel that is when something must be said. Janet shared the picture below and was immediately attacked by @SalvMattera (who has great influence with 12k followers) accusing Ron of being a bad researcher and more because he doesn’t mask.  @SalvMattera has now deleted that post and locked their account, but a screenshot of their original post is below along with 2 follow up comments by them, and you can see it in the quoted post below. So... everyone, let’s take a breath and rewind this and I will tell you what is actually happening in this picture and say a few words about @SalvMattera ’s comments. What makes this so misleading is that it's just one picture with zero context.  Ron and Janet DO MASK (it seems caps are needed here for some people), and they also for example do not even go to crowded places indoors.  They are extremely careful about Covid - more careful than anyone they know.  This picture was taken outdoors (looking indoors) while they were eating (you cannot mask while you eat, they wore masks before and after eating) you just can't tell that from the picture.  And they rarely even go to restaurants, this was a meeting 3 hours from home with a fellow ME/CFS researcher, Eric Gordon (the other person in the picture, an excellent doctor and ME/CFS researcher and a brilliant mind and colleague).  They needed a place to meet. Worse still is that Ron and Janet were 3 hours north of home where Eric Gordon lives because they were at a funeral for a dear friend of theirs.  It was a somber day and they were grieving.  But instead of just going home to have a quiet day in remembrance, they realized they were close to Eric Gordon and took the opportunity to meet with him and discuss ME/CFS and new ideas.  They literally put ME/CFS first no matter what is happening. Ron has given up a renowned career in genetics research that was fully funded to research ME/CFS to try to find a cure for us (and @SalvMattera) and now none of his research is funded and there is absolutely nothing glorious about it.  No recognition.  No awards.  Ron likely found a diagnostic test that would have been cheap enough to have in every blood lab in the world (like Labcorp here in the US) called The Nano Needle, and NIH wouldn’t fund it. Ron deserves nothing but gratitude for selflessly pursuing a cure like no one else.  He even thinks about ME/CFS research in his sleep and wakes up with new ideas. Insulting Ron - without even bothering to google his name - based on nothing but a picture taken out of context with no knowledge about their lives, or what they were doing that day, or what is happening in the picture, and some ruthlessly absolutist ideas stacked with assumptions built on assumptions is very low even for X. I don’t want to be writing this post. My energy is extremely limited, and I’ve spent a lot of it today on this. Attacks like this don’t just affect the people they target, they drain energy from the entire ME/CFS community, whether through the emotional toll of seeing them, and while Ron doesn’t care, the hurt a vulnerable patient might feel if they are personally attacked (and the very real danger if they are suicidal), or the effort it takes to respond. As a community of severely sick people with limited energy, we need to be more responsible with the power of a high follower count, and we need to treat each other better. The post below 👇 by the brilliant @VladVexler is a great take on @SalvMattera ’s post, but the original picture of Janet, Ron and Eric still needed context to put this to bed and avoid the spread of misinformation and more hot takes. Masking is serious, especially when Covid can be so harmful for immunocompromised and chronically sick people, so it is important to address. Thank you for reading. Love, Whitney 💙 #MECFS #LongCovid

@VladVexler @DafoeWhitney Sounds like a community averse to opposing opinions,

Good example of toxic behaviour in the ME/LC community. Let’s draw the right lesson! This account with 12k followers just blocked me for not understanding that the spread of Covid causes ME/LC - even though I can’t walk, sit or breathe properly after getting Covid a year ago 🤯 (on top of 22 years of ME) The account attacked the work of ME researchers as useless because they don’t mask in public. I responded that this was very silly. Then the account blocked me. Let’s draw the right lesson: Yes, ME/LC researchers don’t mask at conferences or socially. That makes some patients, whose lives got upturned by the spread of Covid, wince. There is a childish and a grown-up way to respond. Childish take: the researchers suck and their research sucks. Grown-up take: they’re heroes doing great work on tiny budgets - but I’m concerned they don’t mask, or at least curious how they balance that with their research. #pwME #LongCovid

@DafoeWhitney That second link leads to a 404 page not found message, the first link has a long list of images but I don’t see her name. Help?

Please help Donia, a beautiful person and fellow ME/CFS warrior not lose housing.  This is urgent.  🚨 You can buy something from Donia's ebay store here: ebay.us/m/LPFOmw Or artwork from Donia's website here: donialilly.com You can also send Donia funds via Venmo here: venmo.com/u/Donia-Lilly Or Paypal funds to Donia here: paypal.com/paypalme/donia… Please share 🔁 we have noone but each other in this f’d up world.  💙

@DafoeWhitney I can totally relate.

There's so much cool shit I want to do. Sometimes I feel frustrated, sometimes I feel angry at the world, sometimes I blame myself, sometimes I just feel like crying. I can see it all happening and the ripple effects of what i'd do but I can't do it. #MECFS #LongCovid

Check out this publication. Michael Parker and I are second down. A surprise. mosstrill.wordpress.com

@dog178234 I’m in a weak period now and can no longer walk. I’m continuing to pace in hopes that brings me back.

Severe ME/CFS. After a mild PEM a week ago, I’ve been getting weaker each day 😞 Feel like I’m about to fade away. Even lifting a glass give me muscle pain. Anyone been through this and found a way out? I’m scared I’ll soon be too weak to eat 🥺 #MECFS #SevereME #PEM

@DafoeWhitney Yes, it can be awful. Truly awful.

I've had such a bad week I can't hardly recognize things I wrote a week ago. How can an illness make you so much sicker that you can't recognize yourself and no one even knows why or has any answers? I feel like a ghost of myself. A crappy clone. A shadow. #MECFS #LongCovid

@DafoeWhitney I hope you don’t kill yourself, though I do understand that feeling. The hoplessness……

We cannot treat each other this way 👇 Do you know how much plastic it requires everyday to keep me alive? A little pile. Everyday. for over a decade now. Probably a lot more harm to this world than my life contributes to this world. Should I kill myself? Maybe @kristinaEBP can let me know in the comments because she clearly knows the correct answer to everything and I'll just do whatever she thinks is ethically right 🙄 We cannot make assumptions about what other people's lives are like and then shove absolutist ideals at them and judge them for breaking those ideals. We not only all have different ideals, we more importantly all have different abilities to live up to ideals. And there are zero absolutes in this world. No one is omnipotent or telephathic. Compassion is much more powerful and profound than judgement. And you will never, ever change this world or change minds by condenming people and judging them. Let's start with compassion before judgement, ridicule, harrassmant and insult. And remember that even the ideals we hold most dear are not absolute and we don't know what someone else's circumstances are.

@DafoeWhitney It surely does!

Ever since I saw the trailer for this recent Star Wars movie this scene has come to mind as a symbol of what ME/CFS feels like.

@DafoeWhitney How can we help? A few dollars, which is about all I have to give since my illness eats my money too, won’t get her out of that awful situation.

Please help out a beautiful soul and dear friend of mine. The world needs Rhi. 🙏

@DafoeWhitney I feel so isolated from family, too. So many of us do. It’s so hard.

With my wonderful sister and her amazing son Benny taken October last year.  They are such a light!  And she also has a brilliant daughter Amalia.  Seeing them makes me so happy, but also profoundly sad knowing how much I am missing; The uncle they should have but don’t and the influence that would have on all of our lives.  I would love being an uncle and they would have so much fun with me.   I want to be that uncle they can come to when they have no where else to go, for advice about things they don't know how to talk about with anyone else or are scared to, or to just vent when they need to - a friend who is also family.  And most importantly a constant reminder of how to be a goofball!  😊  I get little glimpses of that with them, and they love me, but it’s just this little tiny fraction of what it could be, they’re still shy around me because they have spent so little time with me.   These are the stories of our lives. Tiny fractions of what they could be.  Tiny fractinos that we make whole lives out of.  No one knows what that is like except ME/CFS/Long Covid patients.   Let’s fill up the bucket with life and love!  Come on reseaerchers, it’s time for a cure, I’ve got people to see and things to do!   Whitney  #MECFS #LongCovid

@DafoeWhitney You would think things would become easier but they don’t.

The medical industry needs to comprehend the real world affects their decisions have on millions of people. We are not numbers, we are real people. Because some cheese-head at a big corporation made a decision with profits in mind that lead to a 1000ml saline shortage, I'm stuck with 500ml bags. No big deal right? I still get saline? Well... -There have been shortages of all saline before in the US. -Every time I change saline bags I risk infection which is a dangerous sort of infection with a PICC line that is highly likely to cause sepsis. So I'm now twice as likely to get a severe infection that sets back my health for months or permanently. PICC line infections are already very common. -I physically can't keep up with changing saline bags 4x per day to get my needed 2000ml per day and so am now always dehydrated which is so so bad for ME/CFS. All because someone at some huge company made a decision with numbers in front of them instead of humans. I'm just one person, this is affecting millions. And it's just one tiny little fairly inconsequential (in comparison to all the horror stories) example of how misaligned the medical system is in the US and around the world.

@DafoeWhitney Today is an especially hard day and your post gave me more courage to face it. ❤️

Unseen Courage Starting a new day with ME/CFS, with full awareness of the suffering that lies ahead and the helplessness of a reality with no effective treatments, no suport from the world around you, and no concrete knowledge of a cure; This is one of the most profound acts of courage.  And we are millions.  All around the world.  Rising.  Everyday.  To live another day with ME/CFS. Unbenknownst to the muggles of this world, there is a courage building in the shaddows all around them, a wave of strength people liken to Superheros in Hollywood movies.  And yet it’s right here in front of them.  It exists, but they either don’t care or don't know to look;  Just to the left of their gaze, hidden away in that house they never see.  Houses all through their communities they don’t ever see.  In the back room where the light never shines;  A courage is building. As the tide rises, the wave of our courage will someday crash onto the shores of this world and soak all the muggles with the truth of our suffering, the power of our endurance, and the magnifcence of our will to survive anything.  Just to know the precious beauty of life for one more day.  And this penetrating awareness gleened from the bloody backs of years of suffering - having seen deeply into the nature of life - will change the world forever. Love, Whitney ❤️ ♿ Accessibility: Listen to this piece aloud: whitneydafoe.com/mecfs/audio/25… #MECFS #MECFSAwarenessday

@BernieSanders You know he’ll find a way to accept it and a Republican majority in Congress will allow this terrible breech of the rules about accepting gifts.

I don't know who needs to hear this, but NO, Donald Trump cannot accept a $400 million flying palace from the royal family of Qatar. Not only is this farcically corrupt, it is blatantly unconstitutional. Congress must not allow this over-the-top kleptocracy to proceed.

@DafoeWhitney Get him off! Disgusting.

Picture this very common situation for an ME/CFS patient: Their health is getting worse fast and they are scared and don't know what the future holds. They have lost all of their friends due to prejudice about ME/CFS - being told the illness is not real and in their heads. Their parents aso do not believe ME/CFS is a real illness but the patient has nowhere else to go and has to live with them and so is constantly subjected to ridicule and harrassmant from their parents about being a failure and not trying hard enough and being lazy, etc. They have no ME/CFS specialists near enough for them to see especiall given their health, and all their local doctors think ME/CFS is a mental affliction, not a physiological illness. But they have to see them in desperate attempts to try to stop getting worse. They just got back from a doctor appointment where their doctor wouldn’t even listen to them, dissmissed everything they said and would not help them with their symptoms because they said they were "in their head". They just got back from the doctor and are crashing and panicking and terrified and feel hopeless and helpless and lost and like there is not anywhere on earth for them to exist. They take out their phone to try to turn to the one place they have where they feel understood - the ME/CFS commiuniity on Twitter/X. And the first thing they see is someone writing "P-S-Y-C-H-O-S-O-M-A-T-I-C illness, stop whining and get off your laxy asses". This is the kind of thing that, in that moment, could push someone over the edge where they feel they have no options left and nowhere is safe and the whole world just wants them to not exist. Thank you all for reporting this account. There are some of you who can brush off these comments, but seen at the wrong time, it could be the last straw for someone. There is a reason suicide rates are so high among ME/CFS patients. But if we all watch out for each other, we can help as many of us survive as possible until there are real treatments and a cure. Which could be sooner than we think. Love, Whitney ❤️ #MECFSawarenessMonth #MECFS

@DafoeWhitney Sleep is very weird indeed,

As soon as I posted this I stopped being able to sleep again. 😂 FM. Last night I couldn't sleep even after taking both drugs. So I propped up on my wedge pillow and instantly fell asleep 😂 Problem is, propped up on my back = v low quality sleep. Sleep is just so weird.