Cyrus
@cyruxime.bsky.social
Energetically compromised (bedridden) by severe #MECFS. All systems operating at minimum capacity & overloaded. In a previous life: comp sci x math, powerlifting. #LongCovid ally.
Debating if I should spend $250 on acotiamide, a medication for postprandial distress syndrome.
It won’t help with blood pooling into my stomach due to #POTS or avoid PEM from eating more than I can tolerate, but if it can make digestion somewhat less painful…
😮💨
#MECFS #NEISvoid #gastroparesis
It won’t help with blood pooling into my stomach due to #POTS or avoid PEM from eating more than I can tolerate, but if it can make digestion somewhat less painful…
😮💨
#MECFS #NEISvoid #gastroparesis
May 29, 2024 at 8:16 AM
Debating if I should spend $250 on acotiamide, a medication for postprandial distress syndrome.
It won’t help with blood pooling into my stomach due to #POTS or avoid PEM from eating more than I can tolerate, but if it can make digestion somewhat less painful…
😮💨
#MECFS #NEISvoid #gastroparesis
It won’t help with blood pooling into my stomach due to #POTS or avoid PEM from eating more than I can tolerate, but if it can make digestion somewhat less painful…
😮💨
#MECFS #NEISvoid #gastroparesis
So I wasn’t making it up after all. Increasing my daily amount of (tube) feed does cause post-exertional malaise to some extent.
The hallmarks of my body struggling to process food are an elevated heart rate and a pounding headache that last for hours, and they’re back.
#MECFS #POTS #NEISvoid
The hallmarks of my body struggling to process food are an elevated heart rate and a pounding headache that last for hours, and they’re back.
#MECFS #POTS #NEISvoid
To justify not increasing my feed, I’ve been telling them for months that it causes intestinal pain. I think it did happen a bit in the beginning but it hasn’t since, so it’s just been a convenient lie (or so I hope — I’d rather not find out that it isn’t when I start increasing my feed).
May 29, 2024 at 6:07 AM
A long overdue update
-
-
-
TW: severe #MECFS, eating difficulties / weight loss / #gastroparesis, hospital
-
-
-
I’ve been fairly stable since I started being tube fed last year. I haven’t lost weight but haven’t put any back on either (IMC still ~14.0).
#NEISvoid
-
-
-
TW: severe #MECFS, eating difficulties / weight loss / #gastroparesis, hospital
-
-
-
I’ve been fairly stable since I started being tube fed last year. I haven’t lost weight but haven’t put any back on either (IMC still ~14.0).
#NEISvoid
May 26, 2024 at 7:53 AM
A long overdue update
-
-
-
TW: severe #MECFS, eating difficulties / weight loss / #gastroparesis, hospital
-
-
-
I’ve been fairly stable since I started being tube fed last year. I haven’t lost weight but haven’t put any back on either (IMC still ~14.0).
#NEISvoid
-
-
-
TW: severe #MECFS, eating difficulties / weight loss / #gastroparesis, hospital
-
-
-
I’ve been fairly stable since I started being tube fed last year. I haven’t lost weight but haven’t put any back on either (IMC still ~14.0).
#NEISvoid
Thank you to every #pwME #pwLC who replied to my post, it cheers me up to see that the #MECFS #LongCovid #NEISvoid communities are active on Bluesky 🙂
I’m sorry that I can’t reply to you all individually but I’ve made sure to follow you.
I’m sorry that I can’t reply to you all individually but I’ve made sure to follow you.
May 26, 2024 at 7:51 AM
Thank you to every #pwME #pwLC who replied to my post, it cheers me up to see that the #MECFS #LongCovid #NEISvoid communities are active on Bluesky 🙂
I’m sorry that I can’t reply to you all individually but I’ve made sure to follow you.
I’m sorry that I can’t reply to you all individually but I’ve made sure to follow you.
May 24, 2024 at 7:31 PM
Reposted by Cyrus
I wrote an op-ed for the NYT about what reporting on long COVID has meant to me—how I approached it, the impact it had, and how it taught me to be a better journalist.
This piece is sort of a manifesto for a journalism grounded in compassion, rigor, and care.
www.nytimes.com/2023/12/11/o...
This piece is sort of a manifesto for a journalism grounded in compassion, rigor, and care.
www.nytimes.com/2023/12/11/o...
Opinion | Reporting on Long Covid Taught Me to Be a Better Journalist
Covering long Covid solidified my view that science is not the objective, neutral force that it is often caricatured to be.
www.nytimes.com
December 11, 2023 at 3:06 PM
I wrote an op-ed for the NYT about what reporting on long COVID has meant to me—how I approached it, the impact it had, and how it taught me to be a better journalist.
This piece is sort of a manifesto for a journalism grounded in compassion, rigor, and care.
www.nytimes.com/2023/12/11/o...
This piece is sort of a manifesto for a journalism grounded in compassion, rigor, and care.
www.nytimes.com/2023/12/11/o...
Wake up
Get my feeding tube going for the day
Take some domperidone for my #gastroparesis, to be able to digest my oral rehydration solution for #POTS
Check X, see yet another thread about a #pwME with #LongCovid seeking assisted suicide x.com/nateb_panic/...
Sigh
Go back to resting
#MECFS
Get my feeding tube going for the day
Take some domperidone for my #gastroparesis, to be able to digest my oral rehydration solution for #POTS
Check X, see yet another thread about a #pwME with #LongCovid seeking assisted suicide x.com/nateb_panic/...
Sigh
Go back to resting
#MECFS
November 28, 2023 at 10:39 AM
Wake up
Get my feeding tube going for the day
Take some domperidone for my #gastroparesis, to be able to digest my oral rehydration solution for #POTS
Check X, see yet another thread about a #pwME with #LongCovid seeking assisted suicide x.com/nateb_panic/...
Sigh
Go back to resting
#MECFS
Get my feeding tube going for the day
Take some domperidone for my #gastroparesis, to be able to digest my oral rehydration solution for #POTS
Check X, see yet another thread about a #pwME with #LongCovid seeking assisted suicide x.com/nateb_panic/...
Sigh
Go back to resting
#MECFS
Reposted by Cyrus
In May 2023, the ME Association requested the latest mortality data from the Office for National Statistics (ONS) and discovered that between 2001 and 2021,150 deaths in England and Wales were partly or fully attributable to ME/CFS.
Read more: meassociation.org.uk/kw5d #pwME #MECFS
Read more: meassociation.org.uk/kw5d #pwME #MECFS
November 28, 2023 at 9:20 AM
In May 2023, the ME Association requested the latest mortality data from the Office for National Statistics (ONS) and discovered that between 2001 and 2021,150 deaths in England and Wales were partly or fully attributable to ME/CFS.
Read more: meassociation.org.uk/kw5d #pwME #MECFS
Read more: meassociation.org.uk/kw5d #pwME #MECFS
I wish my health issues boiled down to theoretical concerns over minute things.
#NEISvoid #MECFS #pwME #POTS #gastroparesis #Disability #ChronicIllness
#NEISvoid #MECFS #pwME #POTS #gastroparesis #Disability #ChronicIllness
November 22, 2023 at 10:39 PM
I wish my health issues boiled down to theoretical concerns over minute things.
#NEISvoid #MECFS #pwME #POTS #gastroparesis #Disability #ChronicIllness
#NEISvoid #MECFS #pwME #POTS #gastroparesis #Disability #ChronicIllness
Reposted by Cyrus
Woohoo! @workwellfoundation.bsky.social has arrived. Follow follow!
November 3, 2023 at 8:38 PM
Woohoo! @workwellfoundation.bsky.social has arrived. Follow follow!
Reposted by Cyrus
Wow, 26,000 #PwME completed the questionnaire, creating the world's biggest #MEcfs sample. 21k invited to give DNA.
Next:
Looking for genetic clues to ME causes: 1. 4k people yet to return DNA samples asked to do so ASAP 2. DNA will be extracted, analysed & compared with UK population
1/2
Next:
Looking for genetic clues to ME causes: 1. 4k people yet to return DNA samples asked to do so ASAP 2. DNA will be extracted, analysed & compared with UK population
1/2
DecodeME: Closed to recruitment and thank you message from the management group
Sonya, Chris and Andy say thank everyone who has participated in the DecodeME study and explain what will happen next. If you have been invited to send in a ...
www.youtube.com
November 18, 2023 at 11:35 AM
Reposted by Cyrus
J'insiste sur l'importance du rapport du Covars sur le Covid long. Tout professionnel de santé devrait le lire pour comprendre la réalité du problème. On a rarement fait un rapport aussi panoramique sur une pathologie difficile à cerner. 👏👏👏
www.enseignementsup-recherche.gouv.fr/fr/avis-du-c...
www.enseignementsup-recherche.gouv.fr/fr/avis-du-c...
Avis du Comité de Veille et d’Anticipation des Risques Sanitaires (COVARS) sur le syndrome post-c...
Cet avis entre dans le cadre des réponses différées du COVARS à sa saisine sur la Covid-19 adressée par M. F Braun, Ministre de la Santé et de la Prévention (de 2022 à 2023) et par Mme S. Reta...
www.enseignementsup-recherche.gouv.fr
November 8, 2023 at 9:57 PM
J'insiste sur l'importance du rapport du Covars sur le Covid long. Tout professionnel de santé devrait le lire pour comprendre la réalité du problème. On a rarement fait un rapport aussi panoramique sur une pathologie difficile à cerner. 👏👏👏
www.enseignementsup-recherche.gouv.fr/fr/avis-du-c...
www.enseignementsup-recherche.gouv.fr/fr/avis-du-c...
@exceedhergrasp1.bsky.social @grachstephanie.bsky.social This sounds like cause for concern: Mayo is supposedly advising #LongCovid patients that they must do “brain retraining” to recover. Have you heard anything like that?
November 13, 2023 at 4:34 PM
@exceedhergrasp1.bsky.social @grachstephanie.bsky.social This sounds like cause for concern: Mayo is supposedly advising #LongCovid patients that they must do “brain retraining” to recover. Have you heard anything like that?
Reposted by Cyrus
Le 7 novembre, le COVARS a émis un avis dans lequel il traite des enjeux médicaux, sociaux et économiques du Covid Long (nommé SPC ou syndrome post-covid), en l’intégrant dans l’ensemble plus large des syndromes post-infectieux dont il affirme la réalité organique et physiologique.
1/8 👇
1/8 👇
November 13, 2023 at 3:25 PM
Le 7 novembre, le COVARS a émis un avis dans lequel il traite des enjeux médicaux, sociaux et économiques du Covid Long (nommé SPC ou syndrome post-covid), en l’intégrant dans l’ensemble plus large des syndromes post-infectieux dont il affirme la réalité organique et physiologique.
1/8 👇
1/8 👇
Reposted by Cyrus
Your usual reminder that CBT has *never* been shown to improve *actual physical symptoms* in #MECFS patients.
Self-reported well-being is often higher after CBT; but that's what CBT does -- it gets people to look at things more positively.
Actual strength, endurance, mobility etc all UNAFFECTED
Self-reported well-being is often higher after CBT; but that's what CBT does -- it gets people to look at things more positively.
Actual strength, endurance, mobility etc all UNAFFECTED
Does the effect of cognitive behavior therapy for chronic fatigue syndrome (ME/CFS) vary by patient ...
Does the effect of cognitive behavior therapy for chronic fatigue syndrome (ME/CFS) vary by patient characteristics? A systematic review and individual patient data meta-analysis
www.cambridge.org
November 6, 2023 at 4:55 PM
Your usual reminder that CBT has *never* been shown to improve *actual physical symptoms* in #MECFS patients.
Self-reported well-being is often higher after CBT; but that's what CBT does -- it gets people to look at things more positively.
Actual strength, endurance, mobility etc all UNAFFECTED
Self-reported well-being is often higher after CBT; but that's what CBT does -- it gets people to look at things more positively.
Actual strength, endurance, mobility etc all UNAFFECTED
First syringe of octreotide injected. Let’s see what it does for my #gastroparesis — hopefully not worsen it, because delayed gastric emptying is a known and frequent side effect (and is listed as such on the leaflet).
🤞
#MECFS #pwME #POTS #NEISvoid
🤞
#MECFS #pwME #POTS #NEISvoid
November 3, 2023 at 9:45 AM
First syringe of octreotide injected. Let’s see what it does for my #gastroparesis — hopefully not worsen it, because delayed gastric emptying is a known and frequent side effect (and is listed as such on the leaflet).
🤞
#MECFS #pwME #POTS #NEISvoid
🤞
#MECFS #pwME #POTS #NEISvoid
Reposted by Cyrus
Alarming thread/convo.
A high-profile paper on #LongCovid contains a mystery section apparently written by AI that perpetuates unfounded ablist stereotypes, presumably skewed by LLM verbiage.
One of the authors is even listed as affiliated to an "AI lab"!
Great sleuthing by @lucibee.bsky.social
A high-profile paper on #LongCovid contains a mystery section apparently written by AI that perpetuates unfounded ablist stereotypes, presumably skewed by LLM verbiage.
One of the authors is even listed as affiliated to an "AI lab"!
Great sleuthing by @lucibee.bsky.social
There's something bothering me about this review.
Something about it is very odd.
🤔
Something about it is very odd.
🤔
A new, very good review on Long Covid
www.nature.com/articles/s41...
www.nature.com/articles/s41...
November 2, 2023 at 12:21 PM
Alarming thread/convo.
A high-profile paper on #LongCovid contains a mystery section apparently written by AI that perpetuates unfounded ablist stereotypes, presumably skewed by LLM verbiage.
One of the authors is even listed as affiliated to an "AI lab"!
Great sleuthing by @lucibee.bsky.social
A high-profile paper on #LongCovid contains a mystery section apparently written by AI that perpetuates unfounded ablist stereotypes, presumably skewed by LLM verbiage.
One of the authors is even listed as affiliated to an "AI lab"!
Great sleuthing by @lucibee.bsky.social
Reposted by Cyrus
November 2, 2023 at 6:23 PM
Reposted by Cyrus
DecodeME study needs more participants with ME/CFS in the UK. The more, the better. The recruitment will end in two weeks.
If you have been sent a spit kit but did not return it, please return it now.
Sign up here www.decodeme.org.uk/portal/
If you have been sent a spit kit but did not return it, please return it now.
Sign up here www.decodeme.org.uk/portal/
November 1, 2023 at 9:36 AM
DecodeME study needs more participants with ME/CFS in the UK. The more, the better. The recruitment will end in two weeks.
If you have been sent a spit kit but did not return it, please return it now.
Sign up here www.decodeme.org.uk/portal/
If you have been sent a spit kit but did not return it, please return it now.
Sign up here www.decodeme.org.uk/portal/
Reposted by Cyrus
This trial has funding to analyse 25000 samples but is well short.
To register/find more info, go to: decodeme.org.uk/portal
Please tell others.
This article explains why the study is important: www.healthrising.org/blog/2023/10...
#MyalgicEncephalomyelitis #DecodeME #MEcfs #CFS #PwME
To register/find more info, go to: decodeme.org.uk/portal
Please tell others.
This article explains why the study is important: www.healthrising.org/blog/2023/10...
#MyalgicEncephalomyelitis #DecodeME #MEcfs #CFS #PwME
November 1, 2023 at 1:44 AM
This trial has funding to analyse 25000 samples but is well short.
To register/find more info, go to: decodeme.org.uk/portal
Please tell others.
This article explains why the study is important: www.healthrising.org/blog/2023/10...
#MyalgicEncephalomyelitis #DecodeME #MEcfs #CFS #PwME
To register/find more info, go to: decodeme.org.uk/portal
Please tell others.
This article explains why the study is important: www.healthrising.org/blog/2023/10...
#MyalgicEncephalomyelitis #DecodeME #MEcfs #CFS #PwME
Reposted by Cyrus
There's a new update on the petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review" with a summary of a 5 part formal complaint we submitted yesterday to Cochrane about their broken promises and processes.
www.change.org/p/cochrane-w...
www.change.org/p/cochrane-w...
Complaints to Cochrane
Cochrane has a system whereby complaints, defined as 'an expression of unhappiness about a failure of process or an important misjudgement' are accepted and are responded to.
Today, the Science for ME...
www.change.org
October 31, 2023 at 9:13 PM
There's a new update on the petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review" with a summary of a 5 part formal complaint we submitted yesterday to Cochrane about their broken promises and processes.
www.change.org/p/cochrane-w...
www.change.org/p/cochrane-w...
Reposted by Cyrus
The ME Association and ME Research UK announce funding for a study that aims to create a diagnostic test for ME/CFS
October 30, 2023
meassociation.org.uk/2023/10/the-...
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
October 30, 2023
meassociation.org.uk/2023/10/the-...
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
The ME Association and ME Research UK announce funding for a study that aims to create a diagnostic ...
The ME Association and ME Research UK are funding a new study using nanoelectronic testing which could produce a diagnostic marker for people with ME/CFS.
meassociation.org.uk
October 30, 2023 at 5:29 PM
The ME Association and ME Research UK announce funding for a study that aims to create a diagnostic test for ME/CFS
October 30, 2023
meassociation.org.uk/2023/10/the-...
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
October 30, 2023
meassociation.org.uk/2023/10/the-...
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Reposted by Cyrus
ME Research UK is delighted to announce funding to Dr Zack Shan @usceduau for the world’s first controlled study directly assessing neuroinflammation in the brains of people with ME/CFS. Read more: meres.uk/shan062 More detailed description: meres.uk/shan062info #MECFS #PwME #CFS
Using MRI to assess brain neuroinflammation and the lymphatic system in ME/CFS
meres.uk
October 30, 2023 at 4:24 PM
ME Research UK is delighted to announce funding to Dr Zack Shan @usceduau for the world’s first controlled study directly assessing neuroinflammation in the brains of people with ME/CFS. Read more: meres.uk/shan062 More detailed description: meres.uk/shan062info #MECFS #PwME #CFS