M.E., ME or just me? 🇸🇳🧟‍♀️💃🏽

Hi everyone. I am going to an #ME specialist in Belgium, Dr. Meirleir! I’m broke, so my sister created this #GoFundMe for me. Please retweet & donate if you can. #NEISVoid @bennessb , do your thing, girl! Help Rebecca get Treatment gofund.me/e3a447c2

Does anyone else think that we should challenge @susie_dent to create a new English word each week for a month and then we can all start using them. That would be amazing. Please RT if you agree!

@CraftyMissB Have you tried iron supplements? My hair loss was, in part, due to that. Also could hormonal changes. As to the sore scalp, I massage neem oil on my scalp. Seems to help a bit.

A BBC journalist is looking for someone with #severeME to talk about their experience of accessing care. Voice notes etc. accepted.

@blacklionking73 I *just* listened to him yesterday!

No matter how high you rate him Nas is still underrated. One of the smoothest flows of all time , like silk over mercury... Timeless youtu.be/e5PnuIRnJW8?si…

@roxy_mojo Nope. Opposite. Nauseous & can't eat

@OSufferer All of the above...

#ChronicPain #Fibromyalgia

@DiaryofaSickGrl Cymbalta...such bad side effects...

What’s the worst medicine you’ve ever taken?

@MEAssociation @Telegraph My issue has not been with alt med, but rather with medical docs pushing GET, CBT, pysch hosp admission.

. @Telegraph Media Request: Case Study needed: Negative experience of alternative therapies/healers for ME treatment Deadline: End of the Week (preferably by the end of the day on Wednesday) Journalist Sophie Wilkinson adds: "She would like to speak to people that have likely had therapies advertised towards them or otherwise pushed on them - and had a negative experience as a result." Please contact this freelance journalist using this email address: sophiewilkinsonjournalist@gmail.com #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #AlternativeTherapies

@DiaryofaSickGrl Same...

A uniquely chronic illness experience I’ve had a lot is people not ever checking on me, but asking others about me (I.e. my spouse or my mom) which to me makes it feel like gossip and not actual care or support.

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Please add your questions to this post!! Please also share so as many people as possible see!

@DiaryofaSickGrl I use vacay...

Is it “vacay” or “vaca”? I’ve always thought it was vacay but I always see people writing vaca

@CorAndME Oh god, I feel this every day! I'm just waiting for my youngest to be about 25!

@blacklionking73 I concur! I was just talking to my 16 yr old abt this. A Master class is Public Speaking from @BarackObama would be the ultimate course to take!

Listening to Barrack Obama speak is like what it must have been like hearing Lincoln. Finest orator ive ever heard . #DNC2024

Oh, yes. Very fast. My children are shocked!! Gen X. We took typing in school. 🤷🏽‍♀️ (I went to hs in the US.)

So relevant to me rn. I'm tryna come off tramadol b/c it's getting too complicated to get. I only take 50mg/day...for 8 yrs. I'm not addicted, but I'm treated like I'm "bad" for seeking care. W/o that 1 little pill, I can't get out of bed.

@Silas33 FFS...🤦🏽‍♀️ Most of my food is pureed. 1, for my messed up digestion, and, 2, because it is often too hard to chew.

@Sshh_ImReading @StephenKing The Shining, then The Talisman. I remember reading the Shining at 15 in the 80s alone at home at night.

@himmatb15 Also, I basically eat almost all pureed food.

@himmatb15 Have you tried activated carbon?

(TMI warning) What is a safe stool softener? I can't eat any fruit without causing GI distress so things like prunes are out. Feel psyllium husk will cause the same. I've started having significant bleeding due to constipation+poor posture (i need to use a bedpan).