ThisisMEtweeting
@thisismetweety.bsky.social
Apparently I don’t like viruses. #MEcfs as a child; post viral syndrome as an adult; now #LongCovid; #fibro; #hypermobility;
#hEDS #pwME. Kiddo with #LC. #ND. #HealthPolicy research. (Yes I know it’s Skeeting & hashtags don’t work the same. Give me time.)
#hEDS #pwME. Kiddo with #LC. #ND. #HealthPolicy research. (Yes I know it’s Skeeting & hashtags don’t work the same. Give me time.)
Thank you for sharing this information. I honestly had no idea how you could have done this even if you’d set your mind to it, and I was finding all the theorising about it distracting.
September 30, 2025 at 3:30 PM
Thank you for sharing this information. I honestly had no idea how you could have done this even if you’d set your mind to it, and I was finding all the theorising about it distracting.
I knew about this (thanks to you & others) but still couldn’t prevent my mum being floxd. I was in hospital at the same time so couldn’t advocate. Daughter with ME & she’s hypermobile so high risk but was fobbed off & told it was fine. She would get an ME (mild) dx now if she sought one. 😔
September 15, 2025 at 1:17 AM
I knew about this (thanks to you & others) but still couldn’t prevent my mum being floxd. I was in hospital at the same time so couldn’t advocate. Daughter with ME & she’s hypermobile so high risk but was fobbed off & told it was fine. She would get an ME (mild) dx now if she sought one. 😔
So, I don’t understand the IT well, but the UK civil service use VPNs to enhance security I believe.
August 21, 2025 at 8:02 PM
So, I don’t understand the IT well, but the UK civil service use VPNs to enhance security I believe.
Reposted by ThisisMEtweeting
I think we like the comforting notion that journals know what they're doing.
That there's a natural path we can follow to do science right, and that the "authorities" and "institutions" are following that, and that everything is working fine.
Sorry guys, but that ain't true.
That there's a natural path we can follow to do science right, and that the "authorities" and "institutions" are following that, and that everything is working fine.
Sorry guys, but that ain't true.
August 13, 2025 at 5:40 PM
I think we like the comforting notion that journals know what they're doing.
That there's a natural path we can follow to do science right, and that the "authorities" and "institutions" are following that, and that everything is working fine.
Sorry guys, but that ain't true.
That there's a natural path we can follow to do science right, and that the "authorities" and "institutions" are following that, and that everything is working fine.
Sorry guys, but that ain't true.
Don’t worry, this will all be changed by The Plan! This nurse will opt in to the optional online training & realise the error of her ways immediately I’m sure of it!
August 18, 2025 at 9:17 PM
Don’t worry, this will all be changed by The Plan! This nurse will opt in to the optional online training & realise the error of her ways immediately I’m sure of it!
See also this post if you’re over at the other place x.com/abrokenbatte...
Adam on X: "This is also common for Children with #MECFS. 1 in 5 parents of children face child protection proceedings because professionals don't understand or believe in the condition. Action for ME Survey 2017 https://t.co/tihLlfu5Tp" / X
This is also common for Children with #MECFS. 1 in 5 parents of children face child protection proceedings because professionals don't understand or believe in the condition. Action for ME Survey 2017 https://t.co/tihLlfu5Tp
x.com
August 1, 2025 at 6:25 PM
See also this post if you’re over at the other place x.com/abrokenbatte...
A very much less dramatic version of this happened to us. When I reached out to the community, it surfaced others who I’d had no idea had faced the same issue. I cannot tell you how utterly terrifying it is & how near powerless you are as a parent to protect your child. The experience has changed me
August 1, 2025 at 6:19 PM
A very much less dramatic version of this happened to us. When I reached out to the community, it surfaced others who I’d had no idea had faced the same issue. I cannot tell you how utterly terrifying it is & how near powerless you are as a parent to protect your child. The experience has changed me
Reposted by ThisisMEtweeting
Personally, this has taught me an incredibly important lesson, one that I wish all my fellow health journalists will take to heart, which is:
If there is a divide between what patients are saying, and what the researchers/clinicians are saying, believe the patients.
If there is a divide between what patients are saying, and what the researchers/clinicians are saying, believe the patients.
November 20, 2024 at 5:42 PM
Personally, this has taught me an incredibly important lesson, one that I wish all my fellow health journalists will take to heart, which is:
If there is a divide between what patients are saying, and what the researchers/clinicians are saying, believe the patients.
If there is a divide between what patients are saying, and what the researchers/clinicians are saying, believe the patients.
Reposted by ThisisMEtweeting
These are the patients that disappear, because they get worse under a doctor’s care, or because a doctor becomes hostile when they try and tell them it isn’t working. (ASK ME HOW I KNOW THIS.)
November 20, 2024 at 5:35 PM
These are the patients that disappear, because they get worse under a doctor’s care, or because a doctor becomes hostile when they try and tell them it isn’t working. (ASK ME HOW I KNOW THIS.)
Reposted by ThisisMEtweeting
There are a few important lessons in these two studies for those of us who are interested in studying exercise:
1. Patients will always try to do what we ask them to do, even to their overall detriment
2. If we base success on patients simply doing exercise, we will be correct most of the time
…
1. Patients will always try to do what we ask them to do, even to their overall detriment
2. If we base success on patients simply doing exercise, we will be correct most of the time
…
November 16, 2024 at 7:22 AM
There are a few important lessons in these two studies for those of us who are interested in studying exercise:
1. Patients will always try to do what we ask them to do, even to their overall detriment
2. If we base success on patients simply doing exercise, we will be correct most of the time
…
1. Patients will always try to do what we ask them to do, even to their overall detriment
2. If we base success on patients simply doing exercise, we will be correct most of the time
…