sarah boothby

Blue heart with the text "Self-Care for Carers" in front. Emerge Australia logo is in the bottom left corner.

Being a caregiver often means putting another person’s needs first. @emergeaustralia.bsky.social's Self-Care for Carers guide offers strategies to help protect and balance their own wellbeing.

🩵 Read it here 👉 https://bit.ly/47xsysl

#mecfs #caregiverawarenessmonth #unitedforme

I was learning to type. We all fled the boredom for the TV in the student common room.

People are so stupid. They (dissociating consciously) always think they're being clever.

I love that. Pacing the good by starting early.
Not leaving good as a reward if you're lucky and can join everyone else that doesn't have to pace.
Top tip 🙏🏼 I get a lot of clinicians wanting to offer positives. This is one such 🙏🏼

Sounds like an interesting study.
How long would you give it?

I'm confident they did.
The question I put to you is: what method(s) they should use to analyse these interviews so that a normative finding can be made?
In England, for example, CFS was not ME. In America there was no diagnosis of ME.
International consensus matters.

Hoping @restispolitics.bsky.social

will cover this shocking story
of the BBC quivering rather
than staying true to its purpose
especially in The Reith Lecture.

Tim Schnyder’s Rule -
don’t obey in advance
is being totally ignored
by the BBC along with so many
in the US

Introducing “Energy Limiting
Conditions”
The Emergence and Evolution of a New Impairment
Concept
Catherine Hale
Independent Researcher, UK
Dr Anna Ruddock
Independent Researcher, UK
Ana Bê
Senior Lecturer in Disability Studies, Liverpool Hope University, Liverpool, UK
#ME/CFS #LongCOVID

journalists asking cabinet ministers why there’s so much chaotic crazed speculation about the Budget might want to question their own role in this

X is designed to do this.
Please do not be a Musk fall guy.
He's autistic, raised under SA apartheid, & believes we can colonise Mars as our way out of burning the bridge to Earthbound ecology. Good luck to him. I prefer it here.
🙏🏼 @bsky.app

It's normal in the UK
They funded specialist NHS CFS services without any longitudinal studies. Ever.
Billions £££ wasted.
Part of 'our' productivity problem.

7/ The proportion of people who go on to develop Long Covid remains uncertain, but WHO estimates 10–20% of infected people may be affected.

This is a large-scale public health crisis that demands governtment coordinated action.

Too many have waited years for informed care. BHC’s Access to Care Model brings multidisciplinary evaluation, personalized plans, collaboration, and real support closer to home.

Learn more: https://bit.ly/3Xf1SIf
#BuildingAccessNow

Did you?

Please do not let perfection be the enemy of good.
We have to start somewhere. After decades (close to a century) of idiotic neglect.

It’s a little better in the US. There a couple ME centers and the Drs here are not locked into national protocols. You might be able to convince your GP Dr by giving them research articles to read. My was willing to try LDN based on info from me. They don’t know much but some are open minded. Some.

Plus my insurance allows for self referral to specialists. That’s not true for everyone unfortunately, but I have been able to find helpful Drs by searching all over the country. I live in PA but have to FL for an ME literate Dr. luckily I can manage that.

Thanks for sharing.
Did you skip the badly/wrongly phrased questions?
Study design is never easy and avoiding confirmation bias in analysing free text responses is, to my thinking, always a risk.
Do you know a method you can recommend for this?

Good points, well made. Stop Rest Pace. Pick up where you left off. Stop Rest Pace. Repeat.
You are not alone. We are here for you. Stay hopeful.

& how carrying on anyway has consequences.
Treating OI early seems to mitigate some of this but without ANY UK based longitudinal studies we are clueless.
The abolition of NHS England may help. Reform means positive & rigorous action. Not convinced Government remembers what that is.

🙄

Please do not apologize!
I share your frustration. It's like we are through a looking glass: we see them but they can't see us and EVERYTHING is back to front.
When/if you have capacity, copy & paste your post into an email attn Rob Wüst and send to ali.kaplan@meduniwien.ac.at

Done. Is it just me or do all of these questionnaires just seem to miss the point? I live a world of such extremes. The peril from the most innocuous task can be severe, other days I accomplish a lot. It’s so hard to answer. Also, the difference between 1 football field and 10 seems like from here

To the moon! How can both be in the same category? Same for standing 5 min vs the next option of 30 min? Increments of 1 minute are more applicable for me. Every day, every symptom, every crash trigger is so different I can’t average it out. Sorry, it’s just so frustrating.

I’ll never forget the horror of the Covid wards | The Observer

Powerful piece by @drrachelclarke.com on the COVID inquiry. Those who say it’s easy to be wise in hindsight are being utterly disingenuous. Many of us spoke out at the time, and it’s in the public record.
@independentsage.bsky.social

observer.co.uk/news/nationa...

@davetuller1.bsky.social

"I have seen study designs adapted to accommodate the patients' needs, by having a calm room to lay down and allowing for breaks, or by visiting patients at home, or sending the questionnaire days in advance"
@hildabast.bsky.social was ME research not worthy of similar PPI in study design?

Thanks for the caution. Save and return any time. No deadline for completion.
If you use a wearable, compare how you feel with what it's telling you.
🙏🏼

#pwME #LongCovidME please help Rob Wüst with establishing a clincial definition of #PEM.
"= Minimum age of 18 years
= Physician-confirmed diagnosis of ME/CFS
= Ability to read and answer the questionnaire in German or English
= Voluntary consent to participate"
www.soscisurvey.de/V-PEM-AQ_eng...

Hypothesis: Lockdown could have been avoided if there’d been an early mask mandate.