Sicksplaining Podcast

Video #podcast focused on #chronic and #invisible #illnesses - on YouTube! Hosted by @Sabrina_Poirier

[Sicksplaining Podcast @Sicksplaining]

Episode 2 of #Sicksplaining is LIVE! 🎤

My guests and I discuss parenting with a #chronic and #invisible illness. The challenges, the impact, the growth and the guilt.

Please check it out and SUBSCRIBE by clicking the red button on @YouTube ! https://t.co/a4R3zEyJaH

[Ravi Veriah Jacques @RaviHVJ]

The NIH is the only institution with the resources to save ME/CFS patients from decades of crushing chronic illness. And yet that very same NIH has never skipped an opportunity to profoundly fail those with ME/CFS. 1/4

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

It's striking that the term "Post-exertional malaise" (PEM) - which the more reliable diagnostic criteria consider the cardinal symptom of #MECFS - isn't mentioned once in the introduction to the NIH study. What's that about? 🧐

[Channel 4 News @Channel4News]

M.E.: Lives devastated - and sufferers are told it's made up https://t.co/tAFEo5ueS9

[@richardvallee.bsky.social @richardvallee]

Something's deeply broken with medicine. Decades of being insulated from accountability and oversight from outside the bubble have lead to a stagnation unlike any profession ever faced.

Adaptation, cognitive flexibility, is the root of intelligence. And they aren't adapting.

[Channel 4 News @Channel4News]

Myalgic encephalomyelitis: Lives devastated - and sufferers told it's made up

[Dr Jay Watts @Shrink_at_Large]

As #MyalgicEncephalomyelitis is trending, I want to acknowledge once more the role my profession has played in the historical and current gaslighting of ME/CFS patients. I fully support increased funding and greater respect for biomedical research in this field. Ditto Long Covid.

[Professor Karim Khan @ProfKarimKhan]

From Dr Watts. Hear hear. Some conditions (such as ME) don't have a biomarker yet. The diagnosis should be made on clinical grounds. And the patients should receive the benefits they are entitled to. That's the purpose of benefits.

[Putrino Lab @PutrinoLab]

Felt this hard today.

Every clinician/researcher who has touched #LongCovid, #MECFS and chronic #lyme should see this as the unacceptable price for decades of underfunding, stigma and ignorance.

Every patient who is seeing this and being affected: Please hold fast if you can ❤️‍🩹

[Imogen @inadarkroom247]

My partner, who was convinced that I'd improve, has now accepted that I'm dying of this. We've talked about my final wishes and what to do when I'm no longer able to communicate. Nobody should have to do this at 25 #SevereMEKills

[Kendra @SurvivingCFS]

The chronic illness community on twitter is hands down the kindest online community I have ever experienced, truly.

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

“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.)

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

#MECFS is a severe, chronic illness. The fluctuating nature of the symptoms may give a false impression that patients are not that ill—because you see them during peaks—but the fluctuations are a problem in themselves as they make planning difficult. #MEAwarenessHour

[Alice Wong 王美華 @SFdirewolf]

I recently identified as someone w/ chronic pain even though I lived w/ it for my entire life but wasn’t sure if my pain was ‘severe’ or ‘unremitting’ enough

My tolerance for it was so high it was normal for me & I didn’t take it seriously until more people talked about it

[Putrino Lab @PutrinoLab]

After seeing severe #LongCovid and #MECFS, it is exactly this sentiment that drives my urgency and fight. Thank you for sharing this. 🙏🏻

[Hazie Thompson @haziethompson]

The ‘we just took our masks off to have a quick drink/take a cute picture’ crowd needs to really let this sink in.

[Sicksplaining Podcast @Sicksplaining]

@chydorina @remissionbiome No. There is no best diet. We have some who swear by one and others who swear by the opposite. But no one has cured or even significantly improved their condition with diet.

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

Please everyone, do NOT click on the Guardian article to read it.

It is another outdated and factually inaccurate piece that continues to gaslight some of the sickest people in the world…while uplifting our grifters and oppressors.

Nothing new to see here.

#NoClicks 🙏

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

A quick ask of our ME researchers:

Please do not sign on to questionable “holistic” conferences that take aim at us for their own profits. (These “free conferences” are recruitment tools.)

Your reputations are lending credibility to very harmful individuals.

You’re bait.

[davidtuller @davidtuller1]

This is quite a frank condemnation of the field of psychiatry from a long-time practitioner. This definitely appears to be the case when it comes to post-viral conditions and other complicated illnesses that generate non-specific symptoms.