Sabrina Poirier (On Hiatus) Profile picture
Community Builder / Passionate Collaborator / Chair - #MedicalEducation Group / #ResearchPartner / #MECFS #LongCovid Advocate / #PwME / #MCAS / #POTS / #Fibro
Mar 18 13 tweets 2 min read
Brain retraining programs in #MyalgicEncephalomyelitis, #Fibro, #ChronicPain, etc are a scam, directed at very vulnerable patients.

They are sometimes named “neuroplasticity” or “cognitive” programs to make them sound more credible and harmless.

#Pseudoscience

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They are popular within healthcare because…

1-They absolve the healthcare system of any responsibility.

They tell the patient it *will* work…

…or they’re doing it wrong.

#Convenient

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Feb 26 20 tweets 4 min read
If I went into remission tomorrow from #MyalgicEncephalomyelitis, my life would be different but amazing.

I would have to rebuild the crumbled parts…but would do that happily.

And I would carry with me the lessons from this terrible experience always.

I share this…

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I am frustrated when I hear researchers or clinicians making assumptions about something they have never lived with/do not understand.

It may seem harmless enough at first glance. But when these assumptions and biases go unchecked, they greatly affect our access to care.

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Jan 30 17 tweets 3 min read
Friends, I am at a crossroads.

I am so fed up with the constant neglect, gaslighting, dismissal, bad faith arguments, casual disrespect, misogyny, sexism and ableism our #MyalgicEncephalomyelitis community has to endure…on top of a debilitating illness that never relents.

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While it’s always been extremely challenging work, I’ve heard from many of you that it’s become considerably harder to be an advocate or research partner, over the past few years.

We are often excluded from spaces and tables that should value our knowledge and experience.

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Nov 13, 2023 21 tweets 4 min read
Long COVID. It’s a new name coined in 2020.

However, it does NOT represent a new or unique outcome after someone has had an acute infection.

Before that name was created, we all existed and suffered.

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Different infections had led us to each other over the decades.

And yes, we had multiple presentations of illness back then too, because infections have always been able to cause damage in all the ways we see with LC.

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Nov 5, 2023 7 tweets 2 min read
Low dose naltrexone or #LDN is a medication worth trying if you have an infection-associated chronic illness.

But you’ll drop it too quickly, if it’s not managed correctly.

Should be dosed very low and slow (start at 0.1 mg, liquid prep is easiest for first month or two).

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I increased every 3 weeks and only by a tiny bit (0.1-0.2) for the first few months.

More than that and the side effects would overwhelm me.

I really do think our bodies need to get used to this medication very slowly. And we need to rest hard the first few days.

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Feb 12, 2023 30 tweets 7 min read
Had someone message me to say that they cured themselves with exercise so they are happy to see these studies.

No. They had chronic fatigue.

Not to be confused with what I and millions of others have, a debilitating multisystem illness #MyalgicEncephalomyelitis or #MECFS.

1/ One is a symptom of MANY conditions. (Chronic fatigue.)

One is a serious and complex multisystem illness that leaves us in a terrible state with up to 100+ symptoms and several comorbidities. (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.)

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Oct 3, 2022 28 tweets 11 min read
#MECFS never gets easier to accept.

Every Fall/Winter my health declines significantly. In the Spring/Summer, my health improves a bit.

Each year though, my overall baseline declines.

It feels like dying slowly and painfully. Never knowing when your body will just quit.

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And no. I’m not depressed or anxious. (Though it would certainly be understandable if I was.)

In fact, I continue to be in awe of myself and my community’s emotional strength in the face of this relentless physical suffering.

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Jul 5, 2022 4 tweets 2 min read
For those new to #pacing with #LongCovid and/or #MyalgicEncephalomyelitis, healthcare workers will tell you to block time.

Example: 30 minutes of activity. 30 minutes break.

But…

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Sadly, that 1:1 ratio does not work for most of us.

We may have to rest 10-12 hours, to get 30 minutes of activity a day. If that’s where you are, it’s ok.

Our limits need to be respected, to maintain a stable baseline. Trust yourself. Protect your energy.

And…

2/
Jan 24, 2021 15 tweets 3 min read
Precisely. This is how the PACE trial authors got away with harming patients without much in the way of repercussions professionally.

The harm was being reported. No one wanted to listen. I would encourage everyone in research and healthcare, treating patients with complex chronic illnesses and/or chronic pain, or funding the research, to please read this.

You’ll learn a lot and you’ll understand why patients are constantly having to educate and advocate.
May 2, 2020 6 tweets 2 min read
Feeling really down lately. This illness really kicks you in the face some weeks.

It’s hard to have no answers when everything in your body seems to not be working. No medications. No cures. No understanding. No access to supports. No voices fighting for us...except us. So many of us have lost so much to this illness.

Our health. Our beloved careers. Our financial security and independence. Friends. For some, their families. Freedom. Access to nature. Ability to be active. Recognition of our skills and accomplishments.