Meraki_mmy

[Deborah Holloway 😷 🇺🇦🇨🇦 @DebHolloway]

"Matt Fitzgerald, 55, an endurance athlete, author and coach who has written nearly 40 books about running (with another, “Dying to Run,” coming out in September) and finished 50 marathons, got long Covid in 2020 and found himself unable to walk. “With most injuries, you can still find something else,” he said. But Mr. Fitzgerald found out through trial and error that exercise made him feel worse." https://t.co/f1dOK9pXjz

[SEND Warrior Mum making a difference! @martinimarie]

Whatever happened to the following?

“Parents are the experts on their own children”

“Every Child Matters”

“The child is the most important voice”

“”Say it once”

[Carole Bruce @CaroleBruce17]

David Tuller’s interview with Guardian columnist George Monbiot on the mistreatment of #ME and #LongCovid patients ... 37”
This sums up why we patients all remain endlessly and terribly ill. ☹️
https://t.co/OIAwfBr3Tw via @YouTube

[‏ً @omgsidewalks]

Nobody wants data centers everywhere. Nobody wants flying cars. Nobody wants a city on Mars. Nobody wants AI in every app. Nobody wants a robot butler. All we want is clean water, we want bees to survive, and we want a habitable planet.

[Patrick @frmlss]

@izaugsmei @atranscendedman https://t.co/aVGzx0NI50

[Wayside Scribbles @waysidescribble]

– Surely you had pre-existing conditions?

[Meraki_mmy @Meraki_mmy]

@Lumideee_ @ncrawfordmd As a woman, the more data you provide, the more anxious you are!

[Meraki_mmy @Meraki_mmy]

@DrJohnMDAPD @amymitchellart @VintageKidsNL @AdamVanBavel Worth a read

https://t.co/AEDfL6hUdc

[tern @1goodtern]

Covid infection affects every part of the body, every body system, and every body function, but it *loves* the lungs.

So how does that play out in hospital episode data...

[Bill Madden @maddenifico]

It doesn't have to be this way.

[ThePOTSPostman @ThePOTSPostman]

People really need to stop evaluating those with chronic illness every time they see them.

They see a few moments and subconsciously start building a case against your illness.

“They’re walking okay.”
“They stayed for two hours.”
“They were laughing.”
“They carried groceries.”

A handful of observations later…

They reach a verdict about how sick you really must really be.

They’ve convinced themselves they understand an illness they’ve never lived with.

It’s exhausting knowing that, for some people, every interaction feels more like being evaluated than understood.

[Meraki_mmy @Meraki_mmy]

@joshual_tm @chydorina Ooh, no. We did it a while ago. I'll dig it out and give it a go. Very kind of you to share, thank you!

Do you mind of i ask what kind of actionable data you got from the aristotle? Are treatments vitamins / hormones etc?

[Meraki_mmy @Meraki_mmy]

@joshual_tm @chydorina That's really encouraging! We did the OAT test and it didnt give us too much to go on. Just cut sugar and started pectin. I'd do anything to increase his baseline.

[Adam @ABrokenBattery]

Caroline Kingdon speaking about functional impairment and mortality in #MECFS

Biobank research has shown people with ME/CFS to be more functionally impaired than people with MS. And between 2001–2016, ME/CFS was mentioned on 88 death certificates in England and Wales.

[𐌁𐌉Ᏽ 𐌕𐌉𐌌𐌉 @OrevaZSN]

I don't think people fully understand how much 1 billion is. If your salary was $100k with no tax, it would take you 10 years to become a millionaire, but 10,000 years to reach a billion. It is unethical for one person to be hoarding this much wealth while others cannot eat.

[Carole Bruce @CaroleBruce17]

‘The withholding of lifesaving care is not a theoretical concern: it is a documented, devastating outcome of misapplying psychosomatic models to a serious, organic illness.’
BMJ opinion piece on treatment of #ME patients.
Too many die Too many suffer for decades.
#MEAwarenessDay

[Carole Bruce @CaroleBruce17]

One of James Strazza’s final poems. released today for #MEAwarenessWeek by his mother Gale Warden. James, a musician and poet, died last week, he had suffered from severe #ME since 2019.

[Adam @ABrokenBattery]

“The bad news is that it’s been a battle every inch of the way, and continues to be every single day. Savannah’s safety is still far from guaranteed and we are struggling to hold the ground we have gained in the face of hostility and disbelief.”

https://t.co/akyahJ19Xt

[Adam @ABrokenBattery]

What is #MECFS?

A brief overview of symptoms, diagnosis and management based on the 2021 NICE guideline. It’s not being tired all the time, patients have an energy impairment that dramatically limits their activity.

[Adam @ABrokenBattery]

Short German TV clip. #MECFS cases have doubled since 2020, many linked to #LongCovid. Patients describe lives wiped out overnight, years housebound or bedridden, and having to choose between showering or playing with their child.