Sarah

Forty-something retired biologist and ME advocate. Lover of birds and yarn. Former athlete.

[Sarah @BirbsAreReal]

@Sabrina_Poirier My situation is different than yours, but I can very much relate to pain following eating. Have you found anything relatively "safe" to eat that you can fall back on when things are especially bad?

[Sarah @BirbsAreReal]

Sabrina does so, so much for the ME community. A must-read for anyone in any way involved in ME research.

[Sabrina Poirier (On Hiatus) 🇨🇦 @Sabrina_Poirier]

Hey everyone. I was invited to write about Myalgic Encephalomyelitis (ME) and our inclusion into much needed clinical trials.

Please read, like and share? 💙

https://t.co/y2vKZpH4Og

[Sarah @BirbsAreReal]

@curemetogether Helped me immensely but not safe to use long term.

[Sarah @BirbsAreReal]

@Sabrina_Poirier @PutAimovigOnNHS @dysclinic She blocked me for calling her out for mocking a patient. I wasn't even rude about it. Says a lot about her openness to learning and allyship.

[Sarah @BirbsAreReal]

@makemevisible24 Depends on the tone. If someone is preaching that we MUST all do X, Y, & Z and we'll surely be cured, and that if it doesn't work it must be some error we've made, then they're deserving of some backlash.

It's all dumb luck at this point, so a little humility goes a long way.

[Sarah @BirbsAreReal]

@RipperMD41 Interesting. Thank you for sharing your experience. I think that class of drug is already being considered for ME research, but not certain. I'm sorry that it didn't help your ME as well as the PsA.

[Sarah @BirbsAreReal]

Still looking for info...
#MECFS #myalgicencephalomyelitis #severeME #MEresearch

[Sarah @BirbsAreReal]

Anecdotes and wild speculation more than welcome: What class of biologic drug is most likely to help pwME? If you had to choose one class to study, which one and why?

1. TNF-a inhibitors
2. Interleukin 12/23 antagonists
3. Integrin Receptor Antagonists

[Sarah @BirbsAreReal]

@rubin_allergy @ngklimas

If you had ME plus IBD, which biologic class would you try 1st? Blunt instrument TNFa inhibitor? More cautious with the interleukin 12/23 antagonists? Skip these and try JAK/STAT inhibitor?

Please help us work this out. GI has no experience with ME.

[Sarah @BirbsAreReal]

Anecdotes and wild speculation more than welcome: What class of biologic drug is most likely to help pwME? If you had to choose one class to study, which one and why?

1. TNF-a inhibitors
2. Interleukin 12/23 antagonists
3. Integrin Receptor Antagonists

[Sarah @BirbsAreReal]

Exactly this.

[Jack | amatica health @JackHadfield14]

The main thing people with ME/CFS struggle with is doing less than they should, not more.

The average patient is already doing too much for their body and recurrently triggering PEM - and if they noticed improvement in how they feel, they normally do too much way too fast.

[Kathryn @kadamssl]

🚨 Friends, this is important in a stop what you’re doing and sign right now kind of way.

The Canadian Aerosol Coalition has created a petition in support of implementing CSA mask standards in Canadian healthcare settings.

We’re talking about nearly universal respirators‼️

🧵

[Sarah @BirbsAreReal]

@Nick_Wellings Nobody who had moderate or severe ME, then stumbled across a cure, would ever DREAM of charging other pwME for it. To withhold relief of suffering is unconscionable. To grift the ill & desperate is even worse. If I ever find a cure, I'll pay for as many ppl to get it as possible.

[Sarah @BirbsAreReal]

Trying again. Someone out there must have a theory.

#mecfs #cfsme #pwME #myalgicencephalomyelitis

[Sarah @BirbsAreReal]

Anecdotes and wild speculation more than welcome: What class of biologic drug is most likely to help pwME? If you had to choose one class to study, which one and why?

1. TNF-a inhibitors
2. Interleukin 12/23 antagonists
3. Integrin Receptor Antagonists

[Sarah @BirbsAreReal]

Anecdotes and wild speculation more than welcome: What class of biologic drug is most likely to help pwME? If you had to choose one class to study, which one and why?

1. TNF-a inhibitors
2. Interleukin 12/23 antagonists
3. Integrin Receptor Antagonists

[Sabrina Poirier (On Hiatus) 🇨🇦 @Sabrina_Poirier]

We desperately need a revolution, in our ME research and advocacy spaces.

We need a 0% tolerance policy for egos, outdated knowledge and understanding, and the spreading of harmful information.

We cannot move the needle forward otherwise.

[Sarah @BirbsAreReal]

@Feisty_Waters Corner Gas!

[Kelly @broadwaybabyto]

When you become disabled - you don’t just lose your health. You lose your autonomy, independence, freedom and often … your friends & family.

Help doesn’t magically arrive. No one comes to save you.

In fact - most people will blame and abandon you. 🧵

[Sarah @BirbsAreReal]

@RipperMD41 She's right back at it this morning, calling every disagreeing statement an "attack" on her.

Hope she follows through on her promise to delete her account.

[Sarah @BirbsAreReal]

@ishbelfrazer @dysclinic She blocked me long ago. I had the nerve to tell her that mocking patients on Twitter is a bad look.

[Sarah @BirbsAreReal]

@elle_carnitine No danger to HER if you walk to the bathroom. PwME can all go ahead and further cripple themselves and she won't feel a thing!