iiinova — where your digital self keeps evolving

Cyrus @cyruxime.bsky.social · 29/05/2024

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

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Cyrus @cyruxime.bsky.social · 29/05/2024

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

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Cyrus @cyruxime.bsky.social · 26/05/2024

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

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Cyrus @cyruxime.bsky.social · 26/05/2024

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.

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Cyrus @cyruxime.bsky.social · 24/05/2024

Are any #pwME & #pwLC in the #MECFS & #LongCovid bubbles still using Bluesky? And #NEISvoid?

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Ed Yong is offline @edyong209.bsky.social · 11/12/2023

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...

nytimes.com

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.

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Cyrus @cyruxime.bsky.social · 05/12/2023

Just watched the new GTA VI trailer. They better find a cure for #MECFS by 2025 so that I can get to play it! #NEISvoid #pwME

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Cyrus @cyruxime.bsky.social · 28/11/2023

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

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Dan Wyke @danwyke.bsky.social · 28/11/2023

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

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Cyrus @cyruxime.bsky.social · 22/11/2023

I wish my health issues boiled down to theoretical concerns over minute things. #NEISvoid #MECFS #pwME #POTS #gastroparesis #Disability #ChronicIllness

Selenium Toxicity from brazil nuts

For about 2 months I ate 4 Brazil nuts a day as well as eggs, beef and chicken. I probably went over the upper daily limit of selenium of 400mg. I have stopped the Brazil nuts now.
Has anyone actually experienced anything bad happen from brazil nuts?

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Simon McGrath @simonmcg.bsky.social · 18/11/2023

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

youtube.com

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 ...

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Stéphane Korsia-Meffre @stephanekm.bsky.social · 08/11/2023

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...

enseignementsup-recherche.gouv.fr

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...

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Cyrus @cyruxime.bsky.social · 13/11/2023

@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?

From Living Proof UK on Twitter (“recoveree-led non-profit social entreprise promoting mindbody recovery from chronic pain & illness”):

“Have just heard that the Mayo Clinic is advising patients that brain retraining is the only way to fully recover from Long Covid and that all patients who have recovered have this in common. Maybe the tide is turning!!! Go Mayo :)”

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Millions Missing France @millionsmissingfr.bsky.social · 13/11/2023

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 👇

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Brian Hughes @bmhughes.bsky.social · 06/11/2023

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

cambridge.org

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

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Cyrus @cyruxime.bsky.social · 03/11/2023

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

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Brian Hughes @bmhughes.bsky.social · 02/11/2023

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

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Ravi Veriah Jacques @ravihvj.bsky.social · 02/11/2023

2 weeks left to participate in DecodeME. Every sample counts! www.decodeme.org.uk/portal/

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ME/CFS News @mecfsnews.bsky.social · 01/11/2023

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/

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Tom Kindlon @tomkindlon.bsky.social · 01/11/2023

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

DecodeME Complete the DecodeME Questionnaire by 15th of November 5pm to Become a Participant Just two weeks to go Please highlight this opportunity widely, on and off-line. UK participants only but important to all of us around the world

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Trish Davis @ozfish.bsky.social · 31/10/2023

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...

change.org

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...

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Tom Kindlon @tomkindlon.bsky.social · 30/10/2023

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

meres.uk

Using MRI to assess brain neuroinflammation and the lymphatic system in ME/CFS

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Cyrus @cyruxime.bsky.social · 29/10/2023

Like people with #MECFS in Ukraine, I cannot even begin to imagine the horror that #pwME in #Palestine are going through. Not just right now because of the war but also before, considering that many live in poverty and don’t have access to appropriate healthcare and support (if any).

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Cyrus @cyruxime.bsky.social · 29/10/2023

I usually don’t post about politics and war, but it feels surreal to me to see that a nation that experienced a mass genocide less than a century ago is repeating it on other people. Surely they should remember that hate breeds violence, and it always ends up blowing up into a full scale conflict?

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Matthew Dalby @matthewjdalby.bsky.social · 26/10/2023

This is why while pacing energy, activities, and rest in ME/CFS is necessary it is also so challenging and so easy to get wrong. Pacing is necessary but unacceptable as illness management and we desperately need effective treatment.

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Living Not Existing @livingnexisting.bsky.social · 25/10/2023

Strong recommend👇 Finding others on the old Twitter going through the same thing has been one of the biggest supports to coping with what has happened to me #MECFS. Now I get to hear many of you too! It's lovely to hear your voices. Thank you for using your precious energy to produce this ❤️

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Matthew Dalby @matthewjdalby.bsky.social · 24/10/2023

If you're at a moderate severity of illness because you avoid living life you aren't really moderately ill. It is how you would feel after a full day of living life like a normal person with a full time job, a commute, a social life etc. That is how ill you really are.

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Brian Hughes @bmhughes.bsky.social · 24/10/2023

Preprint: Our revised submission to NeuroImage: Clinical "Inaccurate Reference Leads to Tripling of Reported FND Prevalence" Kudos to co-authors including @d2p.bsky.social @putrinolab.bsky.social @mhornig.bsky.social @doctorasadkhan.bsky.social + David Tuller for leading #FND #MECFS osf.io/24xf8

osf.io

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Trish Davis @ozfish.bsky.social · 22/10/2023

The latest weekly Science for ME news in brief is online with items on ME/CFS and Long Covid research, advocacy and coming events. You don't need to be a forum member to read the news. To suggest an item for future bulletins, join the forum and start a discussion. www.s4me.info/threads/news...

s4me.info

News in Brief - October 2023

This thread has a Science for ME 'News in Brief' post for each week in October 2023 by a team including @Trish, @Kalliope and @ahimsa. Scroll down to...

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Cyrus @cyruxime.bsky.social · 22/10/2023

I’m not sure why @openmedf.bsky.social is popular among #pwME. All we ever hear from them is “hope” and calls for donations. It has been that way for years, and meanwhile they have barely published any research (unlike e.g. ME Research UK or Solve ME/CFS). So, beyond the indecency of asking — 1/2

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Darren Dahly @statsepi.bsky.social · 20/10/2023

Study result: Drug no better than placebo for improving subjective outcome in a specific context. Widespread interpretation: PLACEBO JUST AS EFFECTIVE AS DRUG! THE POWER OF PLACEBOS LEEEEEEROY JENNNNNKINS!!!

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ME/CFS News @mecfsnews.bsky.social · 20/10/2023

The ME Association has formed a partnership with Manchester Brain Bank to allow ME/CFS patients to donate their brain and spinal cord to post-mortem medical research. meassociation.org.uk/2023/10/the-...

meassociation.org.uk

The ME Association announces new post-mortem research partnership with Manchester Brain Bank - The M...

The MEA Ramsay Research Fund will be funding detailed examinations of the brain, spinal cord and dorsal root ganglion.

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Anil van der Zee @anilvanderzee.bsky.social · 21/10/2023

More than 40 doctors and scientists from five academic centers will jointly search for the cause of #LongCovid with private funding. They no longer want to wait for the announced government subsidies and have put together four research groups, which will start next month.

youtube.com

EenVandaag Stichting LongCovid (Eng subs)

More than forty doctors and scientists from five academic centers will jointly search for the cause of #LongCovid with private funding. They no longer want ...

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Cyrus @cyruxime.bsky.social · 20/10/2023

Too many administrative and medical appointments lately, so I’m crashed. Still have to go to the hospital next week for a follow-up with the nutrition unit. I’m not looking forward to the gaslighting and the stress of them eventually pulling the plug on my tube feeding because they don’t want me

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Cyrus @cyruxime.bsky.social · 20/10/2023

I was officially fired 2 days ago, after occupational health declared me unfit for any kind of work because of #MECFS. Everything went as well as it could have with my employer. When I could still work, they provided me with all the accommodations I’d asked for. They weren’t pushing me out since —

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Ben H @benhmecfs.bsky.social · 15/10/2023

So good to see @bmhughes.bsky.social here! Brian’s work is absolutely invaluable for pwME, soundly refuting the BPS nonsense that has ruined so many lives. 100% follow! #MECFS #pwME

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Cyrus @cyruxime.bsky.social · 12/10/2023

I guess the #pwME version of being hung over the day after a party is PEM after a medical appointment, whether in person or remote. Except there’s no enjoyment to begin with, it’s rougher, and we usually have to ride it out longer before we get back to baseline. #MECFS

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Tom Kindlon @tomkindlon.bsky.social · 12/10/2023

Update from today’s webinar: over 20,500 kits requested (not all circulated yet). Over 15,500 returned. They have funding for analysis of 25,000 (including 5000 #PostCovid #Mecfs). So please keep highlighting recruitment & also the need to return kits #PwME #CFS #LongCovid #LC #DecodeME

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Simone @phoenixme.bsky.social · 12/10/2023

Emerge Australia is launching its new AusME Registry & Biobank, which will expand on the existing #mecfs registry to include young people (aged 12+), people with Long COVID, and people with both ME/CFS and Long COVID. More info here: www.emerge.org.au/ausme/ Medsky 🧵 1/2

emerge.org.au

AusME Registry & Biobank – Emerge AustraliaAccessibility ToolsIncrease TextDecrease TextGrayscaleH...

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Tom Kindlon @tomkindlon.bsky.social · 12/10/2023

(Oxford, UK) Volunteers who are healthy or who have #CFS or #LongCovid sought for research study organised by well-known Morten research group drive.google.com/file/d/1ksoS... #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #PwLC #postcovid #postcovid19 #LC

UNIVERSITY OF OXFORD
Nuffield Department of Women’s and
Reproductive Health

What causes FATIGUE?
We are looking for volunteers for a study of
how bacterial imbalances in the body may affect brain rhythms, reaction time
and memory tasks and blood circulation, to understand what causes fatigue.
If you are WELL, or have CHRONIC FATIGUE SYNDROME or Long COVID,
and you are aged 18-55 years old,
and interested in taking part in our single-visit study in one of our university sites in Headington, then we’d like to hear from you.
Travel expenses will be reimbursed.
For information in confidence, with no obligation to participate please contact:
Dr Inga Williams, e-mail inga.williams@wrh.ox.ac.uk

Participant Advert (Short) Version 1.0, 07.08.2023 Study name: Causal mechanisms in fatigue. Principal Investigator: Prof K. Morten CUREC ethics approval reference: R86827/RE001

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Julie Rehmeyer @julierehmeyer.bsky.social · 11/10/2023

Simon McGrath has arrived! When he’s well enough, he posts some of the best, most scientifically careful stuff around on #mecfs. Follow him at @simonmcg.bsky.social

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Cyrus @cyruxime.bsky.social · 11/10/2023

(Cross-posting from Mastodon) Sorry for going MIA. I’m still doing the same, bedbound and tube fed with no improvement. I just got the results of the muscular biopsy I did in July. While it doesn’t show any signs of mitochondrial disease, — #SevereME #pwME #ChronicIllness #Disability

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Cyrus @cyruxime.bsky.social · 11/10/2023

Hello #pwME in the #MECFS bubble. I’m just checking out Bluesky.

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