#MEcfs
2/
The newspaper writes that during the last year they have been in contact with more than 200 carers and patients who tell the same story about failure from the Danish health system leading to deterioration for the patients.
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS @mecfs
Danish newspaper B.T. writes about the terrible story to #severeME sufferer Morten Brandt who recently passed. Due to this disease being viewed as a"functional disorder" in Denmark, Morten was refused help and advised to go for a walk when he no longer was able to control his muscles or eat.
Google English translation:
https://tinyurl.com/yc8pbb4e
@mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #MyE #ME #millionsmissing #CFSME #CFIDS
1/
via Richard Vallée:
ChatGPT response to:
"Can you offer a critique and evaluation of this [Oslo Chronic Fatigue Consortium] research article, its scientific value and accuracy, as well as the validity of the claims made by the authors?"
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
Outdated hypothesis [from Oslo Chronic Fatigue Consortium] is presented as news by University of Oslo
Google English translation:
“Universities spread false information” [on the The Oslo Chronic Fatigue Consortium statement]
Google English translation:
2/
GET proponents claim that harms from GET are from not doing it correctly but with Lighting Process there is a free for all about how one behaves after it. You are basically signalling you are not truly concerned about the safety of patients if you promote LP.
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
"a gradual and controlled approach to increasing activity is crucial for rehabilitation".
From:
Chronic fatigue syndromes: real illnesses that people can recover from
https://www.tandfonline.com/doi/full/10.1080/02813432.2023.2235609
There is nothing controlled or gradual about how you are supposed to behave after LP. The 2 approaches are diametrically different, you basically can't support both!
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/
#Passagierkapazitäten von #Flugzeugen:
Boeing 747-8 Intercontinental: 605
Boeing 777-300ER: 550
Airbus A350-1000: 480
"Corona in den USA: Lage verschlechtert sich – Mediziner besorgt
Wöchentlich sterben in den USA 500 bis 600 Menschen an Corona. Ob die Variante Pirola schwerere Verläufe auslöst, ist noch offen."
#Corona #Coronavirus #COVID19 #LongCovid #PostCovid #MECFS #POTS
The Norwegian Chief of Defence is married to Linn Therece Kristoffersen who suffers from ME, and has written an honest and moving opinion piece in a medical newspaper about having to adjust to a very different life. He calls those who are living with ME sufferers to get more involved with the cause, gain more knowledge and raise awareness.
Google English translation:
@mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE
"Corona: Wer Maske trägt, ist kein Schisser, sondern ein Beschützer"
#Corona #Coronavirus #COVID19 #LongCovid #PostCovid #MECFS #POTS
3/
A respected ME activist Trish Davis has done a line by line critique of this [Oslo Chronic Fatigue Consortium] abstract here
https://s4me.info/threads/chronic-fatigue-syndromes-real-illnesses-that-people-can-recover-from-2023-the-oslo-chronic-fatigue-consortium.35388/page-5#post-495573
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid
(click link above rather than preview to go directly to the post)
A great initiative being organised by Julie Rehmeyer.
https://docs.google.com/forms/d/e/1FAIpQLSeWgCCEpr5p9b7I0RuvB9LmvQcC6rm1dx_CgCYBzU9VtTBj6A/viewform
I'm on there already. I will probably give my codes to this initiative.
Incidentally, you can find my social media channels including on #bluesky here
https://me-pedia.org/wiki/Tom_Kindlon#Online_presence
@chronicillness
@spoonies
@mecfs
#MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #neisvoid
#chronicillness
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
@DrKelleHerfurth
NIcht wir und unsere Unterstützenden vergeuden mit der Aufklärung unsere kostbare Lebenszeit, sondern diverse Akteure in diesen Kampagnen vergeuden unser Leben.
Die Auswirkungen von #mecfs werden vermutlich, wie in den Jahrzehnten davor, dafür sorgen, die Erkrankten wieder mal erfolgreich zu diskreditieren, damit wir weiter still in unseren Kammern liegen.
Bis in einigen Jahren eine neue Generation den Kampf für Diagnose und Therapie aufnimmt.
Our News in Brief post, covering the #MECFS, #LongCovid and related news from w/c 25th Sept, is out now.
Find headlines and links to further reading for the following topics:
News, articles and advocacy
Research news and commentary
In memory
Coming events
& ME/CFS and Long Covid research
https://www.s4me.info/threads/news-in-brief-september-2023.35197/#post-496477/
Wie geht man mit Berichten um, in denen die Existenz, Evidenz und Schwere von #LongCOVID und #MECFS angezweifelt wird?
Wenn Medien #Desinformation, #Verharmlosung und #Psychologisierung legitimieren?
Über die Gratwanderung zwischen Diskriminierung und Aufklärung - und was wir als Unterstützende tun können:
i sooooo tiiiiirreeed but i have survived the GDoC Expo! It was amazing! I mised most of the talks but that's ok they will be on the youtubes eventually. i so tired. much more ded this year than last year :( I sure hope that like next year not-the-more-ded at least. something something its hard to break up with recovery, but you and i probably should yknow?
Extract from: "Violation of the Dutch Code of Ethics for Psychologists with current CFS guideline – -part 2"
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @mecfs
Heute auf der #liegenddemo in Köln:
350 #mecfs -Betroffene und ihre Stellvertreter*innen haben sich für
- Aufmerksamkeit,
- Forschung und
- Versorgung
stark gemacht! Danke!
2/
A cogent response to the weak, waffle-filled, wishful thinking from graded activity proponents [Oslo Chronic Fatigue Consortium]
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE @mecfs
Of these apps, though, I did find one that claims #HIPPA compliance: Wave Health. And its features look promising. I’ve only just downloaded it so I have no observations to share, let alone a review to offer.
I’m also trying out Heart Analyzer and WatchME.
The biggest hack needed, though, is in my head: learning to accept I have this #disability. After 3½ years it’s about time.
It turns out there are several apps in the #iOS App Store that claim to help. Most are too simple, years outdated, or merely replicate what Health app already does.
A few look promising, plugging into Health app & surfacing helpful info & making it easy to manually record symptoms, pain, mood…
But what’s disheartening is how many of these apps seem to be data-collection mills. Some even track you outside the app!
Always watch for the grift!
…
So I’ve been looking for health apps to help me stay on top of my stats & symptoms to better stay within my #MECFS limits & avoid repeatedly overdoing it & crashing & #PEM not only ending the day but limiting or outright wrecking days/weeks that follow.
Apple Health app is a great start, secure & private, but focused on able-bodied life. Other apps can record/read data it collects, governed by granular privacy permissions settings. Maybe there are apps out there that can help living w ME/CFS?…
3/
I sent the journalist the following with regard to people with ME/CFS:
People made worse with Lightning Process with working links:
https://www.s4me.info/threads/anyone-know-of-any-stories-of-people-with-long-covid-who-were-made-worse-by-the-lightning-process-gupta-or-similar.35462/#post-496185
New pre-print from New Zealand:
Immune cell proteomes of #LongCOVID patients have functional changes similar to those in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome
https://www.researchsquare.com/article/rs-3335919/v1
"suggesting the two conditions have similar immune pathophysiology as a prominent feature, and mitochondrial functions involved in energy production were affected in both conditions"
@mecfs
#MEcfs #CFS #PwME #MyalgicE @longcovid
#PwLC #postcovid #postcovid19 #LC #Covidlonghaulers
#VladsMEdiary Ep 148
Let's talk dynamic disability.
Vlad Vexler:
From: https://twitter.com/vladvexler/status/1453428887548047367
If people know of any of Vlad's other social media channels where he talks about ME, #chronicillness etc., please let me know.
I know he has a very popular YouTube channel on Russian politics but that's not particularly relevant for those who might be interested in this video.
@mecfs @longcovid @chronicillness
@spoonies
@disability
#MEcfs #CFS #PwME #MyalgicE
Thread by @ABrokenBattery on Thread Reader App – Thread Reader App
https://threadreaderapp.com/thread/1707777957119353077.html
@ABrokenBattery: QT -The Guardian calling out The Science Media Centre 🧵The SMC also has a long record of promoting & defending Graded Exercise & CBT for #MECFS. These treatments were withdrawn by NICE in 2021 becau...…
News from NIH: ME/CFS Research Roadmap Webinar Series-- Immune system, October 19
Clickable links in image:
https://event.roseliassociates.com/me-cfs-research-roadmap/
https://roseliassociates.zoomgov.com/webinar/register/WN_7VLhZg0USom5C1SFKOnl4A#/registration
https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
Emerge Australia Research Digest (099)
"We highlight the discovery of WASF3, a key protein linked to exercise intolerance in ME/ #CFS. We also explore the use of health survey tools to better convey the burden of #MECFS in Australia...we delve into the analysis of plasma samples, identifying promising metabolites for diagnosing #LongCOVID ."
The digest concludes with discussing 2 media articles
https://www.emerge.org.au/researchdigest/research-digest-28-9-2023/
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME @longcovid
From: ME Association
ME/CFS Research Published 19 - 25 September 2023
There have been six new ME/CFS studies and twenty-three new Long Covid studies this week.
Paper five (5) is a preprint which looks into long gene sequencing to help explain severe fatigue disorders including ME/CFS.
https://meassociation.org.uk/0jra
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PostCovid #research
From Action for M.E.:
"This morning, our CEO, Sonya Chowdhury, appeared on BBC Radio Leeds demystifying ME/CFS [and] emphasising the wide range of symptoms & levels of severity. She also discussed the DecodeME study, providing details on how to take part, and urging people with ME to participate ahead of the closing date."
(quote expands hashtags and user names)
Sign up: https://www.decodeme.org.uk/portal/
Must have an ME/CFS diagnosis, age 16+, live in UK
I've just set up an account on #Bluesky tomkindlon.bluesky.social https://bsky.app/profile/tomkindlon.bsky.social
I intend to post similar posts there to those I post here
My other social media channels can be found here:
https://me-pedia.org/wiki/Tom_Kindlon#Online_presence
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC
@chronicillness
@spoonies
Given my earlier work on the reporting of harms https://www.researchgate.net/profile/Tom-Kindlon/research I was informed of an upcoming special issue of Trials on assessing #harms in clinical trials, "The collection, analysis and reporting of adverse events in randomised controlled trials"
https://www.biomedcentral.com/collections/CART
These days I focus on @IrishMECFSAssociation but perhaps of interest to somebody. With all the exercise and other #LongCovid trials, it remains important
2/
This journalist has also now told me they would be interested in hearing of people with #LongCovid made worse by other programs that are somewhat similar e.g. Gupta. I talked to them for 20 minutes yesterday. An interesting & important project
@longcovid @mecfs #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
Anyone know of any stories of people with #LongCovid who were made worse by the Lightning Process? A journalist is looking at this issue. I shared with them some stories of people with ME/CFS in this scenario
@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC @mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
From Putrino Lab:
"We've reopened recruitment for the ME/CFS arm of our work with Prof. Akiko Iwasaki (@VirusesImmunity)!
If you have been diagnosed with ME/CFS PRIOR TO 2020 and live within a 50-MILE RADIUS of the upper east side of Manhattan you may be eligible. If you are bed- or house-bound we will come to you."
Please contact prcovid@mountsinai.org for more info.
Medical Education from the Bateman Horne Center:
"The Untreated Epidemic: Understanding and Treating Long Covid and ME/CFS"
Educating healthcare providers, medical students, patients, and caregivers
Keynote Speaker: Lucinda Bateman, MD
Monday, November 6
Noon to 4 pm Eastern Time
Pre-register here: https://docs.google.com/forms/d/e/1FAIpQLSdHfxsY-SflFNmEzMy1X2d58ZAaf99eTeTALtGMXQzMGZDt3w/viewform
In person and virtual attendance options
#LongCovid #MEcfs #MedEd #MedicalEducation #MedMastodon #CME #BatemanHorne
A few weeks back, I was interviewed about my life with #mecfs, what I’ve learned, how I cope. The interview took its toll, so I also recorded a short addendum during the aftermath to show the real impact activities like an interview have on us, which few people see. #LongCovid
Petition to retract the Cochrane review recommending Graded Exercise Therapy.
"No one ever said to me this is grief"
Rae Katz interviews Emily Bazalgette, author of the Grief Sick newsletter.
https://raekatz.substack.com/p/this-is-grief-emily-bazalgette
#ChronicIllness #Grief #Disability #DynamicDisability #Disabled #MEcfs
Solve M.E. Patient and Caregiver Resource Guide: Post Exertional Malaise (PEM) and Rest
https://solvecfs.org/wp-content/uploads/2021/09/PEM-REST-Combined.pdf
A shorter version of this was in their latest e-newsletter
https://solvecfs.org/wp-content/uploads/2023/09/Solve-Summer-2023-Digital-Resources-Chronicle.pdf
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @longcovid
#LongCovid #PwLC
Recently @ashhultman, me and others wrote to @NIH to request research funding covers the brutal intersection of #MECFS, #EDS and spinal issues
Many doctors don’t know how severely these conditions escalate — millions of us are left untreated, then end up severely more disabled and needing more serious and complex surgeries #MEspine #pwME #POTS #MillionsMissing #LongCovid #MCAS https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer
Neglected tethered cord syndrome #TCS caused a lumbar herniation, scoliosis, multiple herniated cervical discs, stenosis, bone spurs, degenerative disc disease, nerve damage, craniocervical instability #CCI
I may have to get neck neurosurgery too so please give what you can! #EDS #MESpine #pwME #MECFS #LongCovid #MillionsMissing #MCAS #POTS https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer
I need a tethered cord release with lumbar disecotomy — doctors in Nebraska, Georgia, Iowa didn’t help (or even look) so I must see the $$ #EDS tethered cord expert and her colleague in Rhode Island
#TCS has been disabling me since birth #MedTwitter #pwME #MCAS #MECFS #POTS #Mito #LongCovid #MEspine https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer
"move your legs"
I'm bedbound with severe ME, I move as little as possible, sib
I know it was said with love but yknow, disability things.
Petition:
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
I signed saying: The 2019 review is fatally flawed. See “Problems with the amended version" by Michiel Tack https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/detailed-comment/en?messageId=266353165# for a carefully argued, well-referenced critique which built on earlier critiques by Robert “Bob” Courtney and myself.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
5/
Thanks very much to everyone who has gone to
https://www.paypal.com/fundraiser/set-favorite-charity & searched for Irish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association . We've just received €75 more through this scheme (presumably mostly from the competition) for which we are very grateful👍👏
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
I am a much much more tired person this year watching #GDoCExpo than I was last year >_<
It means you have symptoms when in an upright position, usually when standing still, but also can happen when sitting upright for a longer time. Can be diagnosed with tilt table test or NASA lean test.
Attached image is from a CDC document that talks about ME/CFS symptoms.
Source = https://www.cdc.gov/me-cfs/pdfs/interagency/What-are-MECFS-Symptoms_508.pdf
(edited for typos)
@shaknais
I realize folks are awkward, and don't know what to say, but "You don't look sick" is pretty ridiculous! 🙄
I hope folks will boost this cartoon ⬆️
Help educate folks so they'll stop saying it so much!
Like @maggiemaybe , sometimes I say "Good thing I don't look as bad as I feel!" with a smile 😉
Folks with disabling chronic illnesses often mask symptoms while doing errands. And folks see us only when we're well enough to leave the house.
#MEAction is asking folks who have ME / Long Covid to take action to spread the word:
- If you sent a pillowcase for the Millions Missing demonstration re-share it on social media and say why you wanted to tell your story.
- Share the #MEAction site on your social media, say what Millions Missing has meant to you.
- If you see a Millions Missing photo with a news story add a comment to explain more about the photo.
#MEcfs #LongCovid
#PwME #PwLC #MyalgicEncephalomyelitis
#MillionsMissing
Email from #MEAction
"Exciting news!! We have created a Home of the Millions Missing where we showcase our historical movement for ME.
We continue to see photos of our Millions Missing demonstrations on the National Mall and in front of the White House circulate throughout the media, and we want to make sure the world knows the full story of ME behind those protests!"
Full email here:
https://mailchi.mp/meaction/nih-comes-up-short-once-again-2271014
#MEcfs #LongCovid
#PwME #PwLC #MyalgicEncephalomyelitis
#MillionsMissing
Reminder that #MEAction hosts a weekly online writer's group, on Thursdays at 11 am Pacific Time, called "Writing for Our ME Lives" for people with ME.
The next one is Thursday, September 28.
Full details here:
https://www.meaction.net/event/writing-from-our-me-lives/2023-09-28/
Massachusetts ME/CFS and FM Annual Event
"ME/CFS: Changing the Narrative"
October 28, 1-3 PM Eastern Time (on Zoom)
Guest Speaker: Ed Yong
Fee is $10 for non-members
Full details: https://www.massmecfs.org/news-events/866-me-cfs-changing-the-narrative
Downside of today's internet install; the tech worker seemed *so* offended when I asked if he could wear a mask since I'm immunocompromised/chronically ill and didn't seem to understand why he should mask up. In the end he begrudgingly put one on but asked me to leave while he worked since he thought he'd catch my chronic illness🤔 #ChronicIllness #MECFS
UK #DecodeME recruitment ending on November 15
"...we still need more people, and this is the last chance to be part of this ground-breaking study. So, if you, or someone you know, are 16 or older, live in the UK and have a diagnosis of ME/CFS, please do take part now to help us decode ME/CFS.."
@mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS
The research council of Norway has allocated 11 million NOK (approximately $1 million) to a study titled "Impaired microcirculation and tissue hypoxia as a possible mechanism in ME/CFS". The study is led by Professor Karl Johan Tronstad in cooperation with Professors Øystein Fluge and Olav Mella.
Google English Translation
https://tinyurl.com/26ar7ydd
@mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS
Long Covid und ME/CFS Patientïnnen bekommen in der Spezialambulanz der Uniklinik Ulm keine Termine mehr für ihre Behandlungen. Was sind die Gründe für den Behandlungs-Stopp? (€) @martinruecker
https://www.riffreporter.de/de/wissen/uniklinikum-ulm-stoppt-behandlung-long-covid-off-label
Independent (UK):
“A woman who survived breast cancer twice may have inadvertently furthered #longCovid research”
“Dr Hwang is now focused on curing ME/CFS, and says this goal is what keeps him going. His team of four scientists is planning a clinical trial to determine whether a drug that’s new to the market may help patients with the condition.”
@mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #millionsmissing
We just need 350USD more!
- cashapp & venmo: evelbrute
- https://ko-fi.com/aldercone
- https://buymeacoffee.com/aldercone
- https://patreon.com/aldercone
our rad stuffs!
- https://aldercone.itch.io/
- https://www.inprnt.com/gallery/evel/
- https://www.buymeacoffee.com/aldercone/extras
- https://www.inprnt.com/gallery/cassowary/
- https://k-23.bandcamp.com/
#MEcfs #disability #mutualaid #settlerSaturday #transCrowdfund #begpost #indieDev #Aldercone