Sabrina Poirier (On Hiatus)
@Sabrina_Poirier
Followers
6,069
Following
5,962
Media
704
Statuses
26,448
Community Builder / Passionate Collaborator / Chair - #MedicalEducation Group / #ResearchPartner / #MECFS #LongCovid Advocate / #PwME / #MCAS / #POTS / #Fibro
Halifax, Nova Scotia
Joined December 2011
Don't wanna be here?
Send us removal request.
Explore trending content on Musk Viewer
#ไฟไหม้รถบัส
• 548462 Tweets
GLORIOUS REBECCA IN PFW25
• 515055 Tweets
Nigeria
• 213597 Tweets
#JENNIExCHANELSS25
• 212599 Tweets
JENNIE FOR CHANEL
• 192051 Tweets
Happy New Month
• 118487 Tweets
JO1 WHERE DO WE GO
• 73733 Tweets
世界4位
• 26780 Tweets
Devlet Bahçeli
• 24121 Tweets
Iniesta
• 22245 Tweets
Fate/Zero
• 16028 Tweets
夕刊フジ
• 15909 Tweets
対象作品
• 15289 Tweets
集英社秋マンガチャ開催
• 13243 Tweets
DOYOUNG FIRST LOVE OUT NOW
• 12815 Tweets
PSN障害
• 12187 Tweets
Pinned Tweet
Exercise does not cure
#MECFS
. We wish desperately that it did.
What I wouldn’t give to have my life back; to hike, swim, skate and bike with my kids all the time.
It’s too sad to even think about. It’s too cruel to suggest we haven’t tried hard enough.
#ENDmecfs2021
39
108
554
My heart is bursting with joy and community after seeing all your beautiful eyes and masks. 💛💛💛
Thank you to each person doing this, if and/or when they can. Every little bit helps too. It is so appreciated.
My family and I are still masking too. 💙💙💙
#YallMasking
30
182
2K
I was in a CBT pain program.
Psych sat next to us as we completed surveys.
If we gave a lesser score, we were asked why. Then it was implied that there was “more work to do” because of our “perfectionism”.
We all wanted OUT OF THERE. 5/5 got us discharged.
It was survival.
@sunsopeningband
Pain clinics overwhelmingly use CBT. At end of treatment, patients report less pain. 3-6 months later, pain is same or worse than before treatment. Patients are blamed when they were simply victims of gaslighting.
4
25
359
32
291
1K
My 12 year old and I were just chatting, and I told him how it takes about 17 years for research to translate into improved clinical care.
His shocked reply: “What?! That’s ridiculous! Don’t they realize people are SICK and waiting on them for answers?!” 🤯
28
157
1K
Hey
#LongCOVID
friends:
What is the most up to date protocol for dealing with a COVID infection, to try to support the immune system? (For friends, not me)
REST + Hydration
Paxlovid, if possible
Antihistamines
Mast cell stabilizers
Vitamins D, C
Zinc, magnesium
What else?
208
201
1K
This illness, in its worst moments, leaves us feeling like we’re dying slowly.
And the idea that we get used to that and no longer ask for, or expect, help is really all you need to know to understand the level of neglect we have experienced by the medical system.
20
227
1K
Maybe it shouldn’t hurt, but it does, when advocates who are still new to post viral illness think they started this fight and try to erase our efforts.
Maybe they don’t realize it, but they’re standing on our shoulders.
The ME community has been here for decades. DECADES.
22
153
860
#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.
1/
23
134
689
Feeling profoundly sad and isolated.
I’ve had only a few hours out of bed in months. That makes me one of the lucky ones. How about that.
So much medical and societal neglect. It’s sickening.
I want my life back. It was a beautiful vibrant life.
49
50
645
It can take YEARS to recognize PEM (post exertional malaise) in yourself.
I made so many excuses to myself for feeling so awful, but it was always PEM. I needed someone knowledgeable to help me see the pattern.
Imagine the impact of that reality on research.
23
75
575
Sharing our stories is hard. But it’s unfortunately necessary, to help create empathy & understanding.
Thank you to Timothy Cooke and the Otter for this long form article on
#MyalgicEncephalomyelitis
.
So much went into this. Please read and share. 🙏
13
230
516
Anyone who kicks the
#MECFS
or
#POTS
community when we’re down (which is always, seeing as we have the LOWEST quality of life scores of any chronic illness) is VILE.
When you do it from a position of extreme wealth & privilege though…I just don’t have words.
#BoycottHerBooks
11
78
498
That doctors need more training and humility when dealing with complex, chronic illnesses.
🙋♂️ What’s your unpopular opinion in medicine that will get you in this position?
#MedTwitter
175
41
207
10
107
481
Struggling with…
The RELENTLESSNESS of
#MyalgicEncephalomyelitis
.
The lack of options/access to clinical care.
Society’s lack of empathy, community care, curiosity or scientific literacy.
The apathy towards all of us.
The ongoing abuse of our energy.
The grief.
#NEISvoid
25
95
466
For those new to living with long term post infectious illness, we need to talk about risks with future infections.
With each new infection, your body can struggle to return to baseline.
This can happen immediately or within a few months after the infection has passed.
1/2
6
103
449
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/
8
38
443
Most “POTS specialists” or dysautonomia “experts” will push exercise because it helps POTS, but no one is assessing effectively or watching for PEM.
And most of these individuals with POTS (and undiagnosed ME) become bedridden.
So much harm. No accountability.
12
110
436
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
1/
13
127
438
My kid broke his arm last year. He healed it with positive thinking and neuroplasticity.
(The specialists he saw and the cast they put on had nothing to do with it.)
This sounds ridiculous right? Good.
Now, let’s take our common sense and respect and apply it to
#MECFS
.
12
71
428
It’s got to be brain damage.
I have almost completely lost my ability to speak my second language & doing math for 2 mins makes my brain feel like it is burning.
Reading & writing is now limited in general.
#CognitiveDysfunction
just doesn’t seem to do the experience justice.
I have worked with Alzheimer’s and Dementia clients for years.
The cognitive decline I am seeing post COVID infection is alarming and devastating.
This is not brain fog, it’s brain damage.
#WearAMask
70
1K
4K
26
86
397
I might be depressed.
Is it depression though, if the circumstances I have to live with as a
#pwME
, and fight against endlessly, finally get me down after 12 years?
If I finally believe, what I’ve been told by society - that I don’t matter?
I’ve definitely lost my spark. 😕
59
30
388
Your diet did not cure Long COVID or MECFS.
If it helps you, great. How fortunate you are to get relief from such an intervention and to be able to maintain it.
#privilege
But it is not the cure we (gestures wildly) have all been missing.
21
39
389
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.
1/
15
87
386
After about 5 straight weeks of being bedbound (not for the first…or likely the last time), today I woke up able to sit up for a meeting and stand briefly to cook something (in stages).
There is no reasonable explanation why this is so.
I am no less grateful.
This is
#MECFS
.
21
22
373
With every new infection I have caught over the years with ME, my function has been reduced.
COVID was a threat I saw coming and did everything in my power to avoid. I begged others to do the same.
1/
9
70
376
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…
1/
9
81
368
If you care about others, masking is still a must (regardless of vaccination status).
That’s what the science has shown.
#LongCovid
and
#ME
is still a significant risk.
Anyone saying anything different are either actively misleading you or ignorant to the reality and risk.
5
104
354
To all those feeling very sad or angry today, because once again, our illness has been misunderstood and misrepresented, I see you.
The ableism and gaslighting is brutal.
I am reaching out to scientists and advocacy colleagues about how to respond.
12
41
352
To those who follow: Please stop saying that COVID exposed gaps within the healthcare system for the first time.
No, no it didn’t.
Those gaps have been highlighted by many of us (w/ chronic illnesses) for YEARS.
Less people cared. Sure.
Doesn’t change the facts though.
4
85
343
Post viral illness is not new.
Post viral advocacy is not new.
Post viral research is not new.
Truth is that we stand on the shoulders of many who came before, and we must lift up those who will come after.
#TrueSolidarity
5
61
345
Please stop trying to erase
#MyalgicEncephalomyelitis
from the discussion.
You’re not just erasing a name, a history and quite a bit of science at this point…
…you’re erasing people and their suffering.
1
54
345
Is there such a thing as a support group for advocates?
It’s lonely, gruelling work, filled with rejection, that can be hard on the soul.
Not to mention that we’re doing advocacy work in the context of broken systems, ableism and toxic positivity.
19
38
344
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…
1/
24
94
347
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.
1/
11
48
346
A team of us worked together on this publication, just out in the Journal of Fatigue: Biomedicine, Health & Behavior.
We really hope it helps.
#LongCovid
#MyalgicEncephalomyelitis
#MedTwitter
28
126
331
I am continuously struck by how much damage a few ill-informed post infectious advocates can do to a movement, that pre-dates them by decades.
It’s exhausting to have to constantly remind them that
#MECFS
is part of the discussion, when we discuss
#LongCOVID
.
#LearnTheHistory
6
54
321
They can’t possibly begin to understand what we live with everyday, even if they try.
So this is a message to support you in standing up for your needs and limits. You are not alone and you are not failing at pacing, if you can’t “keep up” with their plans.
Trust yourself.
4/
11
26
321
Currently taking heat in a
#LongCovid
group because incorrect and outdated information was shared about ME and post infectious illness.
When several of us gently shared some clarification and resources, we were told we know nothing on the subject.
I can’t make this shit up.
48
23
312
New podcast out with a long time “ME expert” pushing CBT to help with “recovery” because patients “catastrophize”.
I’m so sick of waking up to such disrespectful/thoughtless nonsense.
We really need to attract new and intellectually curious clinicians to support us.
20
42
298
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).
1/
23
47
291
And by the way, back then I had no understanding of research.
I was just a very sick person. Vulnerable. Terrified. Willing to try anything.
So I did not understand the harm I was doing to the research by saying what I needed to, to get out of there. Still ashamed.
9
17
292
@LauraPowellEsq
You’re lucky to have such a dentist. Many of us wish our healthcare workers were so thoughtful and aware of the science.
2
7
285
“It takes a village…”
I need a village. My family needs a village.
Genuine question:
How am I to build a new village when I have no energy to connect and when I do, it’s too hard to be vulnerable and not fall apart doing so?
(My previous village basically forgot I exist.)
10
35
283
Understand that while your healthcare workers may say that they are trained to support you with post infectious illness and pacing…they are actually completely new to it and (hopefully) still learning.
And if they have never experienced
#LongCovid
or
#MECFS
themselves…
3/
2
28
281
It’s about time MEN start speaking up and condemning this hatred.
Jeremy Clarkson should never work another day in his life.
I am so sick of this kind of behaviour getting a pass. We cannot stay silent when this happens.
Thank you Mayor
@SadiqKhan
.
#WeStandWithMeghan
As Jeremy Clarkson should well know - words have consequences. The words in his piece are no joke - they’re dangerous and inexcusable. We are in an epidemic of violence against women and girls and men with powerful voices must do better than this.
4K
5K
29K
6
46
259
If you minimize
#MECFS
, you will be blocked.
The seriousness of this illness and experience are not up for theoretical debate.
Being new to this is not an excuse to minimize, gaslight and attack very sick patients.
10
34
271
@TheRealDoctorT
I cried reading this thread.
Listening, without ego or deflection, is such a gift to someone dealing with grief.
Yes, there is an undercurrent of rage sometimes. Often, it’s fear, masked.
Our healthcare systems hardly allow for these moments anymore…glad you made space.
3
8
265
Why are so many pretending post viral illness is new?
I’m truly at a loss here.
It is crushing my soul to watch this notion be promoted by healthy people who have no idea what this illness is like every day.
I’m not sure how much longer I can keep fighting this fight. 😞
14
31
264
Please say the name of my illness correctly. Especially on a webinar focusing on the topic.
It’s not ME/CSF. 🙄
16
5
263
Something I don’t talk about much, is how much my processing speed has decreased and fluctuated since having Myalgic Encephalomyelitis.
People say they don’t notice it much, but I notice it in every interaction.
My brain used to be so fast, I could hardly catch it.
Having low processing speed affects everything. It impacts basic communication with people, like texting & talking. Not only how long it takes to actually communicate, but how much you ingest about what you are reading/hearing. Relationships become hard to maintain.
#LongCovid
3/
8
287
3K
15
33
261
@DeanEggitt
This tweet feels like maybe you don’t really understand the experiences of your housebound patients? It feels very privileged and a bit out of touch.
Maybe that’s not your intention…but if not, please take the time to learn about disability and ableism.
1
8
258
I am so fed up with being trapped in a body that isn’t working. It’s physically and emotionally draining just to exist at the moment.
#NEISvoid
#MyalgicEncephalomyelitis
11
24
251
If you are researching
#LongCOVID
and not closely monitoring for post exertional malaise (
#PEM
), you are being irresponsible with your research and the patients who have put their trust in you.
This is not new information either.
So why don’t you know it yet?
1
49
250
My little one just finished his sign for Saturday’s
#ME
Awareness Event in
#Halifax
and is very pleased with his efforts! (I helped with the letters.)
#SuchACutie
16
64
244
Fed up with this illness. Just fed up. 😞
30
11
237
To anyone with a complex chronic illness:
Please do not lose your money to grifters who promise to treat/cure our illnesses with brain retraining or neuroplasticity (they’re just using a more scientific word for the same nonsense).
It won’t work and you’ll be blamed.
Please don’t spend your £€$ on this,
#LongCovid
fam. I did, worked hard, and ended up distressed and sicker. Turns out my mind can’t break up micro clots, repair endothelial damage, heal T cells and kill viral reservoirs. Try
@InsightTimer
for free meditations.
#TreatLongCovid
19
79
378
10
62
234
I stand 100% with Long COVID patients in their fight for biomedical research, increased care and treatment, and recognition for the reality of what they’re living with.
And I am thankful to those who return that kindness, support and solidarity to our
#MECFS
community.
4
45
239
@joshuamcclure
Not eating them is not a treatment or cure for PAIS.
I’m a WFPB 99% of the time and I have not seen any improvement in my ME symptoms. My condition has continued to deteriorate.
When you’re this sick too, you don’t need extra guilt and shame added to what little you can eat.
4
4
234
If we’re not able to brush our teeth or wash our hair, it’s because we’re too damn ill!
Not because we’re depressed or don’t want to (which is what doctors clearly assume is happening).
Psychiatry is killing women with its ableist, judgemental take on women’s health.
#MaeveInquest
Dr Prague suggested washing hair and cleaning teeth would make her 'feel better'.
Shows she clearly doesn't understand
#SevereME
#VerySevereME
12
49
278
4
55
233
I have been awake since 4:30 am.
In so much pain, I could not open my eyes, talk or ask for help. Breathing felt like entirely too much.
This happens a lot, so last year I was sent to 2 pain specialists.
One suggested I increase my magnesium. The other suggested meditation.
45
16
234
Working on a
#pacing
workshop - for & by patients - for a local ME group.
(Got tired of seeing pacing misrepresented to
#pwME
and
#LongCovid
. No one really understands pacing until their quality of life depends on it.)
#pwME
, any tips/best practices you want me to include?
59
36
224
3 years ago, I travelled to Palo Alto, California, to meet with my new doctor, Dr. Chheda.
She and Dr. Kaufman specialize in complex chronic illness and have helped MANY individuals living with
#MyalgicEncephalomyelitis
, as best they can.
Below, Dr. Kaufman talks to doctors.
13
56
219
Wow. This is so accurate in
#MECFS
and
#CommonComorbiditues
research.
Well intentioned researchers/clinicians often get poor data because of how they’re measuring symptoms, whether it be PEM, orthostatic intolerance or another.
Saving this for future presentations.
7
60
218
So fed up with being so ill. 😔
11 years already and no end in sight.
How much more are we suppose to take?
I want to be well so bad. 🙏🙏🙏
I have so much still to accomplish. So much positive change to create. So much love and light to contribute.
#pwME
#StuckInBedAgain
23
18
213
I’m getting very close to being done with all of this, if something significant doesn’t change soon.
We cannot be expected to exist like this, suffering endlessly.
We have no $, clinical care or support system.
This is inhumane.
I will say it until someone listens.
12
34
207
This is
@thephysicsgirl
and she has
#LongCovid
and
#MECFS
.
She’s being targeted with hate and misogyny online, so if you want to help, look at the quotes and comments and report all abusive ones.
Do not reply. Just report.
She doesn’t deserve this. None of us ever have.
I've been bedbound since January with long Covid, but I still love to dress up for Halloween. So my husband made me this costume (posted by Kyle, the husband.)
1K
2K
50K
10
41
209
Today is an important day to support our
#LongCovid
friends, family, colleagues and collaborators. 💛
I am sending you all my love.
I hope you can always be gentle with yourselves…and fierce against those who stand in the way of change.
#LongCovidAwarenessDay
1/
7
57
208
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/
@WildNycgirl
@ahandvanish
Omg. Seriously?!
There is a similar study in Canada too.
How are we still stuck here and why isn’t anyone respecting patients in this discussion?
2
3
40
5
52
207
@DrMarinaHarris
In the end, I went to the US and saw an infectious disease specialist.
She knew her stuff and was able to diagnose and treat my
#MyalgicEncephalomyelitis
and comorbidities.
Then I found my amazing community. And they helped too.
They saved my life. Not the psychiatrists.
8
8
204
As a patient living w/ chronic pain, fueled by chronic illness, I feel chronic pain research is failing us terribly.
If you’re a chronic pain researcher, please know that complex chronic illness communities would love to work with you, to drive a new research agenda.
9
35
204
Those who pretend to be “afraid” of
#LongCovid
or
#MECFS
“
#activists
” are some of the weakest people ever.
Can you imagine…being afraid…of a bunch of people slowly dying in their beds…while they tweet or text…😱
So scary! (Shiver)
No. You’re afraid to lose power.
4
41
204
To all those new to pacing, we might have forgotten to tell you that
#Christmas
is almost impossible to pace effectively, especially if you have children.
So it’s ok if
#pacing
is a struggle right now. It is for most of us at this time of year. 💙
#MECFS
#LongCovid
#NEISvoid
5
29
202
Another MYTH is that we “fear exertion”.
We do not “fear exertion” at all.
We have learned, through our experience, what works and what doesn’t for
#MECFS
. We try to make informed decisions based on that evidence.
Pacing is a tool for managing our illness.
6/
2
11
199
The first advocates & researchers out warning of chronic illness and disability post-COVID, were from the
#MECFS
community, at the very beginning of 2020.
And we have been here, working alongside our Long COVID collaborators and friends, EVERY DAY since.
We fight together. 💙
4
24
196
Lots of comments about the neglect of ME as one of the biggest scandal of the past 100 years. It’s true and we need someone to investigate it properly.
Please go and like these comments! 🙏
3
47
193
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.
2/
4
9
191
To those advocating in the
#LongCOVID
space, please be very careful about the research you support and promote. 🙏
We have some sketchy UK figures trying to protect their outdated theories (& profits) re post viral illness &
#pwME
by researching
#LongCOVID
now. Be very careful.
5
50
191
Dear Spoonies,
We need to stick together and have each other’s backs more, against a system of continued harm.
Please stop defending shitty doctors who disrespect and grift off of
#MECFS
, because they “seem nice”.
If they are hurting *any* of us, they are hurting *all* of us.
8
21
190
I am sharing this, because prevention is one of our only tools in keeping ourselves and our immune systems safer.
So please keep masking, distancing, limiting exposures wherever possible and resting aggressively if you do get a new infection.
#LongCovid
#MECFS
2/2
2
30
184
Pacing is not a cure.
But it can help with some semblance of stability and sometimes prevent further decline.
Honestly, I wish I had more fear of exertion sometimes. I regularly need to be reminded to slow down and do less. Not the other way around.
7/
2
11
188
Most people have no idea how terrifying it can be to deal with cognitive dysfunction and how much we have to accommodate this particular aspect of our disability.
"Brain fog" is really serious cognitive impairment. I can't process input. I don't understand what you're saying. I can't access the words I need to express myself. I can't make decisions, even if I understand the question. I'm trapped, I'm often TERRIFIED and can't even show it.
98
3K
12K
3
34
183
I never wish for anyone to get sick with
#MECFS
, because it is so awful.
But, like Natalia, I do wish we could create a short experiential learning opportunity for everyone to get a taste of our lived experience.
It would perhaps open up hearts and minds. 💙
I wish everyone in the world could spend a day living in the body of a person with severe ME/CFS. Imagine how quickly attitudes would change.
32
81
694
9
29
182
I got a few messages in my DMs about this post yesterday.
Have I “tried increasing physical activity”? Have I considered trauma work because “that is the reason for chronic illness”.
These messages also suggested that I should try treatment x, y and z.
1/
Had a shower.
I am so beat down, bones deep exhausted and in pain because of it.
How is this my life.
8
11
140
16
27
185
It’s inhumane the amount of suffering that
#PwME
are expected to tolerate. No clinical care. No meds/treatments. Poor quality research or low funding.
But a man with erectile dysfunction or that’s losing his hair…?
Give them ALL the research and treatments. 💰 💰 💰
🤬
5
26
183
We cannot just accelerate ME research by increasing funding…and assuming all the other issues will be gone.
We need to also address WHAT is researched, and HOW that research is designed and executed to finally get the most meaningful answers.
10
41
182
@ShannonSevigny
Could you walk me through that one more time?
There seems to be a disconnect and I’d like to understand how we can work through that to move forward effectively.
0
5
174
Every time a person with ME has GI issues, this is what happens.
It’s why many of us avoid the hospitals at all cost. It’s not right that we should have to though.
#BringMillieHome
#DontLetMEDie
Millie is in 🏥 suffering from gastroparesis caused by severe
#MyalgicEncephalomyelitis
. Drs insist she has an eating disorder. There's a risk she could starve to death if she's forced to stay there + not treated properly. Pls
#BringMillieHome
.
#DontLetMEDie
@gmcuk
@RCPhysicians
8
297
511
1
54
179
The first MYTH: People with
#MyalgicEncephalomyelitis
(or other chronic illnesses) must be “afraid of getting better”.
What utter nonsense.
4/
2
11
179
Disappointed anytime I see
#LongCovid
guidelines that do not include a clear and respectful understanding of
#MyalgicEncephalomyelitis
and/or
#DynamicDisability
.
0
22
178
This is so disappointing
@CBCNews
.
No one should be recommending exercise-based (or exertion-based) interventions to those with
#LongCOVID
unless they have been adequately assessed for
#PEM
.
(And they should be watched carefully for adverse effects.)
3
29
176
I’m coming to the realization that this might be my last year of service to the
#MECFS
community.
My health deteriorates every year and nothing I am doing to fight it is even slowing it down.
Meeting my infectious disease doctor in the US soon. Hoping for new ideas/meds. 🤞🙏
21
24
175
@RedefiningMECFS
Could we perhaps downplay the exuberance until we are quite sure.
Lord knows the ME community has been through too many false hopes over the years.
Tell us when you’re certain.
5
7
176
Want to see what an appointment for most complex chronic patients looks like? (It’s 1 minute.)
This is so accurate…I wasn’t sure whether to laugh or cry.
This is what’s wrong with
#medicine
.
#MedEd
#MedStudentTwitter
9
46
174
Dr. Akiko Iwasaki
@VirusesImmunity
is not only an amazing researcher at
@Yale
, but she is also a champion and ally to all those with post acute infectious illness (including
#PwME
) but also a role model for many of us.
Learn more about her here.
3
36
174
Think I’m done now? No.
We haven’t even addressed the medical trauma, gaslighting, misogyny, racism, ableism, dismissal and ineffective systems that we have to deal with.
There is so much to unpack with each of these. But I’ll share a few examples for those new to this…
6/
1
10
167