#PwME

7 hours ago

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

https://www.s4me.info/threads/chronic-fatigue-syndromes-real-illnesses-that-people-can-recover-from-2023-the-oslo-chronic-fatigue-consortium.35388/page-5#post-495640

9 hours ago

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

https://melivet-com.translate.goog/2023/09/24/utdatert-hypotese-presenteres-som-nyhet-av-universitetet-i-oslo/?_x_tr_sl=no&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

10 hours ago

Outdated hypothesis [from Oslo Chronic Fatigue Consortium] is presented as news by University of Oslo

Google English translation:

#MEcfs #CFS #MyalgicE #PwME @mecfs

https://mitteremitage-wordpress-com.translate.goog/2023/10/01/universitet-sprider-falska-uppgifter/?_x_tr_sl=sv&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

10 hours ago

“Universities spread false information” [on the The Oslo Chronic Fatigue Consortium statement]

Google English translation:

#MEcfs #CFS #MyalgicE #PwME @mecfs

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

12 hours ago

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.

12 hours ago

"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

https://shorturl.at/dFQ49

13 hours ago

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

15 hours ago

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)

@chronicillness
@spoonies
@mecfs
#MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #neisvoid
#chronicillness
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

15 hours ago

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

BlueSky Invites for the Chronic Illness Community
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Katie Johnstone

16 hours ago

DHSC consultation crib sheet!!! With four days to go, here is a set of answers you can copy or modify as you respond online to the government's consultation on its plan for ME/CFS. #pwME
https://mecfs.substack.com/p/dhsc-consultation-crib-sheet

https://meglobalchronicle.wordpress.com/2023/09/29/violation-of-the-dutch-code-of-ethics-for-psychologists-with-current-cfs-guideline-part-2/

1 day ago

Extract from: "Violation of the Dutch Code of Ethics for Psychologists with current CFS guideline – -part 2"

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @mecfs

Likelihood of psychological harm also real

Besides physical harm, the likelihood of psychological harm is also real. Because CBT for CFS operates on a flawed theory, it fails to teach the patient to recognize and adequately interpret symptoms and bodily signals relevant to ME/CFS. Conversely, it is likely that the patient will learn (to an extent) to ignore and/or wrongly interpret these. This essentially teaches the patient to not trust their own ability to assess an essential part of themselves.

If the treatment does not yield the desired progress, chances are that the patient will unfairly hold themselves responsible because the protocol of CBT for CFS explicitly cultivates a positive expectation in which the amount of progress is to a significant degree a function of the patient’s efforts (Knoop & Bleijenberg, 2010; Geraghty et al., 2019). A patient will struggle to obtain professional, social and societal support if the narrative of the disease is wrong and it is assumed that the patient has control over their illness trajectory (Health Council, 2018). Harm from inappropriate treatment can also lead to medical trauma (van Hemert, 2021).

https://www.s4me.info/threads/chronic-fatigue-syndromes-real-illnesses-that-people-can-recover-from-2023-the-oslo-chronic-fatigue-consortium.35388/page-3#post-495411

1 day ago

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

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

#MEcfs #CFS #MyalgicE #PwME @longcovid @mecfs

https://www.researchsquare.com/article/rs-3335919/v1

New pre-print from New Zealand:

Immune cell proteomes of #LongCOVID patients have functional changes similar to those in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome

"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

Abstract
Of those infected with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), ~ 10% develop the chronic post-viral debilitating condition, Long COVID (LC). Although LC is a heterogeneous condition, about half of cases have a typical post-viral fatigue condition with onset and symptoms that are very similar to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). A key question is whether these conditions are closely related. ME/CFS is a post-stressor fatigue condition that arises from multiple triggers. To investigate the pathophysiology of LC, a pilot study of patients and healthy controls has used quantitative proteomics to discover changes in peripheral blood mononuclear cell (PBMC) proteins. A principal component analysis separated all Long COVID patients from healthy controls. Analysis of 3131 proteins identified 162 proteins differentially regulated, of which 37 were related to immune functions, and 21 to mitochondrial functions. Markov cluster analysis identified clusters involved in immune system processes, and two aspects of gene expression-spliceosome and transcription. These results were compared with an earlier dataset of 346 differentially regulated proteins in PBMC’s from ME/CFS patients analysed by the same methodology...

#MEawarenesshour #LongCovid

#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

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

News from NIH: ME/CFS Research Roadmap Webinar Series-- Immune system, October 19

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

The next ME/CFS Research Roadmap webinar will take place on October 19, 2023, starting at 11am ET. Focusing on how ME/CFS impacts the immune system, presenters will describe current research, knowledge gaps, and future research opportunities in this area. There will be Q&A sessions during which attendees can ask questions and contribute ideas. Researchers, clinicians, advocates, those living with ME/CFS, and anyone invested in or impacted by ME/CFS are encouraged to attend. The webinar will be recorded. The video recording and transcript will be posted online after the event for future viewing.

Please visit the webinar series event page for details about the agenda and speakers, and upcoming webinars. To register for the immune system webinar, please visit: https://roseliassociates.zoomgov.com/webinar/register/WN_7VLhZg0USom5C1SFKOnl4A#/registration.

Learn about the overall roadmap process, including information on how you can provide input, on the NANDSC Research Roadmap Working Group page. The final research roadmap will be presented at the NANDS Council meeting on May 15-16, 2024.

https://www.emerge.org.au/researchdigest/research-digest-28-9-2023/

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

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME @longcovid

https://meassociation.org.uk/0jra

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.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PostCovid #research

#MEcfs #PwME #LongCovid #DecodeME #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)

Must have an ME/CFS diagnosis, age 16+, live in UK

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC
@chronicillness
@spoonies

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

@longcovid @mecfs #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

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
#LongCovid #PwLC #postcovid #postcovid19 #LC @mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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

#MEcfs #PwME #Research #NewYork #PutrinoLab

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.

Participants wanted — if you were diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) prior to 2020:

We are recruiting participants who were diagnosed with ME/CFS prior to 2020 to be ‘controls’ in a research study investigating the long-term symptoms experienced by people with post-acute COVID-19 syndrome (Long COVID).

The research study involves providing a blood sample (approximately 1 fluid ounce or 2 tablespoons) during a single research appointment. There is no usually no longer term follow up or participation involved.

If you are interested, please contact: preovid@mountsinai.org

Research study location:
Department of Rehabilitation & Human Performance
Level 6, 5 E 98th Street, New York, NY 10029

Mount Sinai IRB STUDY-20-01758 Princpal Investigator: Dr David Putrino

#MutualAidRequest #MillionsMissing #EDS #pwME #LongCovid #MedStadon #MESpine #POTS #MCAS #Mito

People can also donate here:
Venmo: Emily_rj
CashApp: $ERoseJ
PayPal: emilyrjohnson

I’ll add any cashapps donations to my GFM fall neurosurgeries goal, ty 💜 https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer

https://solvecfs.org/wp-content/uploads/2021/09/PEM-REST-Combined.pdf

Solve M.E. Patient and Caregiver Resource Guide: Post Exertional Malaise (PEM) and Rest

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

Solve M.E. Patient and Caregiver Resource Guide: Post Exertional
Malaise (PEM) and Rest

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

I have an infection so no energy to do many tweets like I have raising funds for others

$22K only covers neurosurgery care now — I may need more neurosurgery next year

Pls share if you can’t donate! #LongCovid #DisabledSocial #MedStadon #EDS #pwME #POTS #MCAS #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

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

Petition:
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

Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
Started
4 September 2023
Petition to
Cochrane
Signatures: 7,529Next Goal: 10,000
7,529
10,000
Signatures
Next Goal

@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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👍👏

https://melivet-com.translate.goog/2023/09/24/utdatert-hypotese-presenteres-som-nyhet-av-universitetet-i-oslo/?_x_tr_sl=de&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

Outdated hypothesis is presented as “news” by the University of Oslo
Google English translation:

@mecfs

#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

https://www.healthrising.org/blog/2023/09/23/study-me-open-medicine-foundation/

StudyME (Please!) The Open Medicine Foundation’s Project to Accelerate ME/ #CFS, #FM & #LongCOVID Research

"I know of at least two #MECFS studies that failed to get completed because they failed to find enough participants. That’s a horrible thing to have happen in a field that needs every research dollar it can get its hands on."

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME @longcovid
#PwLC #postcovid @fibromyalgia
#Fibromyalgia #Fibro #FMS

StudyME (Please!) The Open Medicine Foundation’s Project to Accelerate ME/CFS, FM and Long COVID Research
StudyME OMF
We all know what the way out of diseases like ME/CFS, fibromyalgia, and long COVID is - it's more more research! Research studies, though, require participants, and finding people to participate in them can be one of the more costly and burdensome parts of an already very expensive process.

The Open Medicine Foundation, though, has found a way called StudyME to cut down those costs and accelerate and improve research studies by zinging people with these diseases to the researchers who are studying them. It's brilliant!

Want to make a difference with these illnesses? All it takes is about 5 minutes of your time. Check it out in

Study ME (Please!) The Open Medicine Foundation’s Project to Accelerate ME/CFS, FM and Long COVID Research

Kirstie Sivapalan

https://writingandme.com/2023/09/25/to-all-fnd-bps-opinion-piece-generators/

BPS/FND lot have been at it again briefing useful idiot churnalists eager to cut and paste some press releases to minimise LC and M.E.

Have had more than enough of this, so have written a robust response to anyone who comes up with this nonsense. Will be using this as a time saver in the future.

#pwME #pwLC #medicalgaslighting #MECFS

#PwME #MEcfs #LongCovid #ChronicIllness

@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.

#MEcfs #LongCovid
#PwME #PwLC #MyalgicEncephalomyelitis
#MillionsMissing

#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.

Text from an email sent by #MEAction:

"Now that we’ve created a Home for the Millions Missing, please take action to spread the word about ME:

TAKE ACTION:

- Re-share your pillowcase on social media, and say why you wanted to tell your story on the Mall. Include a link to our site: millionsmissing.org, use the hashtag #MillionsMissing and tag @meactnet.

- Share the site on your social, and say what Millions Missing has meant to you. Pick a pillowcase and share why it affected you, or share a photo of yourself (wearing an Millions Missing shirt if you have one), or pick a speech that resonated with you and share why.

- If you see one of our Millions Missing photos in the media, let them know what the photo means. Share a friendly, brief explanation, for example: Isn’t that photo powerful? It was from a protest that #MEAction held in DC to bring attention to ME and Long Covid. Learn more at millionsmissing.org."

https://mailchi.mp/meaction/nih-comes-up-short-once-again-2271014

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:

#MEcfs #LongCovid
#PwME #PwLC #MyalgicEncephalomyelitis
#MillionsMissing

#MillionsMissing is a global movement calling for justice for people with myalgic encephalomyelitis (ME), also known as ME/CFS.

#MEAction has organized 10 #MillionsMissing demonstrations since 2016 with hundreds of cities across the world demonstrating. Together, we are fighting for equitable research funding, clinical trials, medical education and public awareness for M.E.

In 2022, we protested in front of the White House calling for the Biden administration to address the crisis of M.E. The pandemic has quadrupled the number of people with M.E. in the U.S. to an estimated 9 million. In 2023, #MEAction set up a massive display of 300 beds on the Mall in Washington, DC to call attention to the crisis of M.E. and Long COVID.

https://www.meaction.net/event/writing-from-our-me-lives/2023-09-28/

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:

#MEcfs #PwME #Writers #Writing

"Writing From Our ME Lives, Thursdays at 11 am Pacific Time"

Background photo shows a person's hand writing in a notebook - upper part of the person is not shown. They appear to be sitting up in bed under a blanket. A cup of coffee and eyeglasses are in the foreground.

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

#MEcfs #PwME #LongCovid #ChronicIllness #Massachusetts

#EpsteinBarr virus-acquired immunodeficiency in #myalgicencephalomyelitis —Is it present in #longCOVID?

Free full text:
https://tinyurl.com/25e8vwt4

Hypothesis paper discussing the role of #EBV in #postCovid

@longcovid #PwLC #PostCovidSyndrome #LC @covid19
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @mecfs

#MEcfs #CFS #MyalgicE #PwME #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS

Isla

@Miriamm Yes, finally #pwME (people with ME/CFS) are on trend!

https://tinyurl.com/5t3vm6ht

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

@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

https://youtu.be/MN2LXemIUOI
@mecfs
#MEcfs #CFS #PwME @longcovid

David Tuller: With so many #longCovid patients being diagnosed with ME or ME/CFS, it’s essential physiotherapists (or physical therapists in US) - grasp the essentials of the disease, & in particular the existence of post-exertional malaise". "I recently spoke with 2 of the authors of A Physiotherapist's Guide to Understanding & Managing ME/CFS about why they wrote the book, how they formed Physios for ME, etc.”

https://tinyurl.com/bddvny9m

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

Understanding, diagnosing, and treating #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome – State of the art: Report of the 2nd international meeting at the Charité fatigue center

Full text not free:
https://www.sciencedirect.com/science/article/abs/pii/S1568997223001866

#MEcfs #CFS #PwME #MyalgicE @mecfs @mecfs_de

Abstract
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a devastating disease affecting millions of people worldwide. Due to the 2019 pandemic of coronavirus disease (COVID-19), we are facing a significant increase of ME/CFS prevalence. On May 11th to 12th, 2023, the second international ME/CFS conference of the Charité Fatigue Center was held in Berlin, Germany, focusing on pathomechanisms, diagnosis, and treatment. During the two-day conference, more than 100 researchers from various research fields met on-site and over 700 attendees participated online to discuss the state of the art and novel findings in this field. Key topics from the conference included: the role of the immune system, dysfunction of endothelial and autonomic nervous system, and viral reactivation. Furthermore, there were presentations on innovative diagnostic measures and assessments for this complex disease, cutting-edge treatment approaches, and clinical studies. Despite the increased public attention due to the COVID-19 pandemic, the subsequent rise of Long COVID-19 cases, and the rise of funding opportunities to unravel the pathomechanisms underlying ME/CFS, this severe disease remains highly underresearched. Future adequately funded research efforts are needed to further explore the disease etiology and to identify diagnostic markers and targeted therapies.

"Chronic fatigue syndromes: real illnesses that people can recover from"

Some wishful thinking from the biopsychosocial school

Free fulltext:
https://www.tandfonline.com/doi/epdf/10.1080/02813432.2023.2235609

What was supposed to be the definitive trial, the £5M #PACEtrial, found no increased recovery rates with CBT or GET using the protocol recovery criteria:
https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

Chronic fatigue syndromes: real illnesses that people can recover from

The Oslo Chronic Fatigue Consortium,Tomas Nordheim Alme,Anna Andreasson,Tarjei Tørre Asprusten,Anne Karen Bakken,Michael BJ Beadsworth,Birgitte Boye,Per Alf Brodal,Elias Myrstad Brodwall,Kjetil Gundro Brurberg,Ingrid Bugge,Trudie Chalder,Reidar Due,Hege Randi Eriksen,Per Klausen Fink,Signe Agnes Flottorp,Egil Andreas Fors,Bård Fossli Jensen,Hans Petter Fundingsrud,Paul Garner,Lise Beier Havdal,Helene Helgeland,Henrik Børsting Jacobsen,Georg Espolin Johnson,Martin Jonsjö,Hans Knoop,Live Landmark,Gunvor Launes,Mats Lekander,Hannah Linnros,Elin Lindsäter,Helena Liira,Lina Linnestad,Jon Håvard Loge,Peter Solvoll Lyby,Sadaf Malik,Ulrik Fredrik Malt,Trygve Moe,Anna-Karin Norlinac Department of Health, Medicine, and Caring Sciences Pain and Rehabilitation Center, Linköping University Hospital, Linköping, Sweden,Maria Pedersen,Siv Elin Pignatiello,Charlotte Ulrikka Rask,Silje Endresen RemeORCID Icon,Gisle Roksund,Markku Sainio,Michael Sharpe,Ruth Foseide Thorkildsen,Betty van Roy,Per Olav Vandvik,Henrik Vogt,Hedda Bratholm Wyller &Vegard Bruun Bratholm Wyller show less
Received 17 Feb 2023, Accepted 07 Jul 2023, Published online: 23 Sep 2023
Cite this article https://doi.org/10.1080/02813432.2023.2235609

Received 17 Feb 2023, Accepted 07 Jul 2023, Published online: 23 Sep 2023
Abstract

ColleenSteckel

https://open.substack.com/pub/colleensteckelmeiccinfo/p/coping-with-symptoms-while-waiting

New article posted in my Substack - Coping with Symptoms While Waiting for a Cure.

Links to many tips for coping with symptoms. Not Medical advice but a lot of wisdom from long time chronic illness sufferers.

#MyalgicEncephalomyelitis #pwME

https://www.energysavingselfcare.com/

"Energy-Saving Self Care Cards" from Ricky Buchanan

The cards are not free but she does post some examples on the associated social media pages
e.g. https://www.facebook.com/energysavingselfcare/

#chronicillness #chroniclife #Spoonielife
#Spoonies #Spoonie #LongCovid @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @chronicillness
@spoonies
@disability
@longcovid

Realistic self care for the chronically ill and in pain
Self-care suggestions like "go to the movies" or "walk the dog" are not helpful if you can't actually do them because you're chronically ill or in pain.

I've designed a unique set of self care cards with chronically ill people in mind. These cards are customised for your needs, and are written by someone who's been sick and often homebound or bedridden for over 20 years.

Each beautiful Energy-Saving Self Care card offers you a specific gentle action to support you in taking care of your mind and body. The deck offers 60 action cards, plus 5 blank cards you can personalise with your own actions, and instructions about adapting cards to your own ability level.

Some travel tips for people with ME/CFS

TABLE 2. Strategies to provide ME/CFS patients for testing.

From:
Cardiopulmonary Exercise Test Methodology for Assessing Exertion Intolerance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
https://www.frontiersin.org/articles/10.3389/fped.2018.00242/full

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

https://www.s4me.info/threads/news-from-scandinavia.647/page-89#post-494955
or
https://www.uib.no/med/164929/uib-får-11-millioner-i-støtte-til-me-forskning

2/
The University in Bergen has written an article about the new #MEcfs research funding:

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

The University in Bergen has written an article about the allocation.

Professor Karl Johan Tronstad comments:
- This allocation means a lot for our research on ME/CFS. The goal for this project is to achieve new knowledge about the mechanisms behind the disease, og to look for biomarkers which hopefully can be used for diagnostics and targeted treatment.

The article also includes a short summary of the project in English:

"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating disease which usually occurs after an infection, also sometimes in patients with post COVID-19 condition (Long-COVID). The mechanisms of initiation and symptom generation are still unclear, and we are lacking effective biomarkers and treatments. Supported by published and preliminary data, we hypothesize that tissue hypoxia due to impaired microcirculation is a key element that perturbs cellular energy metabolism in the patients. To address this, we will investigate biochemical signatures of hypoxia, and changes in relevant cellular interactions in blood samples from patients and controls. These insights will hopefully provide new understanding about the mechanism of ME/CFS, and possibly reveal novel avenues for future research and clinical applications."

https://www.uib.no/med/164929/uib-får-11-millioner-i-støtte-til-me-forskning

https://www.s4me.info/threads/news-from-scandinavia.647/page-89#post-494915

Good news from Norway:
"Forskningsrådet (The Research Council) has awarded the team at Haukeland 11 million NOK to their research on ME/CFS and energy metabolism"

This is equivalent to €957,902/US$1,024,396/ST£827,980

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

#MEcfs #PwME #Research #GiftLink #GiftArticle

@mecfs
For those who missed it Brian Vastag wrote a great article about this in the Washington Post.

Gift link ➡️ https://wapo.st/3EK5iJK

https://www.nih.gov/news-events/nih-research-matters/protein-may-be-linked-exercise-intolerance-me-cfs

From the NIH:

"Protein [WASF3] may be linked to exercise intolerance in ME/CFS"

"A study suggested that high levels of a protein may reduce energy production in the muscle cells of people with ME/CFS."

"Blocking this protein in cells in the lab restored energy production, suggesting a potential new strategy for treating the condition."

#MEcfs #PwME #Research #NIH #WASF3

Begrudging Recluse

Today I quit physical therapy and I'll see whenever I get enough courage and optimism back to search for a new one.

I recently got an injury I couldn't solve myself, so I searched help from a PT. The first one I got helped decently with this injury caused by #hypermobility, even though she didn't understand #MEcfs and all that comes with it.

After a few appointments she went on long sick leave (looks like long covid) and I got a replacement PT. The new PT didn't understand ME or my injury. She talked to me like I was a child and constantly said muscles and joints were supposed to hurt, invalidating my pain. I went twice and cancelled my other appointments, not wanting to go back.

The replacement PT started working less (looks like long covid) and a second replacement PT showed up. I had one appointment with her. She didn't understand ME, hypermobility or my injury. She kept telling me that I shouldn't be so scared of pain (I'm not) and that I shouldn't avoid movement (I don't). She accused me of lying when I told her I'm as active as I can be. Even when I explained I know the difference between good pain in muscles that are healing, and pain of something going really wrong in your body, she never listened to me. She said it's all in the mind and that I should just distract myself. She said that I should just exercise and I will be well again.

She refused to listen to my boundaries and physically pushed my hip with the injury into a painful position, worsening it in the process. I told her to stop and she took it as evidence that I'm a pain avoider. I've been to plenty of extremely painful PT sessions and I know that some types of pain are for my own good, but man, this definitely wasn't it. This was extremely misinformed treatment that actually harms patients. I am never going back.

I feel hurt, upset, and humiliated, even though I've had encounters like these dozens of times already! You never truly get used to it. ME/cfs and hypermobility often aren't taken seriously. But, it also didn't help that I was wearing a mask to avoid #covid and that I was immediately perceived as a hypochondriac. I didn't even stand a chance at being taken seriously.

Wearing a mask is such a disadvantage in healthcare now. I have several other illnesses that are generally recognized and not as contested as #MyalgicEncephalomyelitis. However, since mask mandates ended in healthcare settings half a year ago here, doctors have slowly started to approach these illnesses with doubt and skepticism too, because I refuse to unmask. It's starting to get more difficult for me to get my regular prescriptions.

I genuinely fear for my future and quality of life, if more and more care becomes inaccessible, both because of #covid19 infection risk and because of the way healthcare workers now treat people who try to avoid infection. This is starting to become the norm.

#pwme #CovidIsNotOver

Latest
#DecodeMEstudy e-newsletter is here:
https://s4me.info/threads/uk-decodeme-recruitment-open-online-questionnaire-postal-spit-kit-12pm-12th-sept-2022.29463/page-30#post-494577

It shows they have less than 16,000 DNA samples (they have funding for 25,000). Hopefully the ME community will make a big effort to reach more people in next 8 weeks.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing #DecodeME

https://tinyurl.com/4y3scxty

What Long #COVID investigators can learn from four decades of ME/CFS research - Jason et al.

"The current article provides guidelines for developing a case definition for #LongCOVID & discusses the significance of psychometric issues and criterion variance, including how to specify symptoms, develop thresholds, subtypes, & exclusionary conditions"

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @longcovid
#PwLC #LC

https://tinyurl.com/yhue96bf

Myalgic Encephalomyelitis—Chronic Fatigue Syndrome Common Data Element item content analysis

The authors reviewed common data elements for ME/CFS and found that relatively few items assess the impact of ME/CFS symptoms on activities and participation. Their findings support the development of ME/CFS-specific patient reported outcome measures.

@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

https://tinyurl.com/59fwuvha

New Blood Test For #ChronicFatigueSyndrome Has 91% Accuracy

On the preliminary results from a study by Jiabao Xu et al on a blood cell-based test for ME/CFS. "The blood test differentiates between the properties of a type of blood cell called peripheral blood mononuclear cells (PBMCs) in people with an without ME/CFS, using a technique called Raman spectroscopy and an artificial intelligence (AI) tool"

@mecfs
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis

@mecfs
#CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Washington Post article on in-house NIH research: “She wrote to a scientist about her fatigue. It inspired a breakthrough” by
@brianvastag

https://wapo.st/3Pem0G4

“Nine out of 14 had similar overabundance of WASF3 as Twinam, and, on average, the [#MEcfs] group’s levels of this protein were higher than that of healthy volunteers”

Mentions a drug trial is planned

https://meassociation.org.uk/2023/09/the-me-association-a-very-successful-count-me-in-campaign/

ME Association (UK):

Count ME In Campaign

Initial survey results from over 6000 people with ME/CFS showed mostly poor experience of the NHS, with no change since the 2021 NICE guidelines.

@mecfs

#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

In Video 7 of the PEM series, Dr. Brayden Yellman highlights the critical importance of resting and utilizing a careful regimen of both physical and cognitive pacing to avoid entering a physiological state of post-exertional malaise.

Full video at:
https://www.youtube.com/watch?v=oLC2tZMPbsE

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
#pem #pese #pene

@chronicillness @spoonies @mecfs @longcovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

"On the days that I decide I don’t have the recovery time or overall energy to take a shower, I give myself a baby wipe bath (which is just wiping myself down with a bunch of baby wipes), apply dry shampoo to my hair, and throw a little cold water on my face."

#chronicillness #chroniclife #Spoonielife #Spoonies #Spoonie @chronicillness @spoonies @mecfs #MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid #LongCovid #PwLC #postcovid #postcovid19 #LC

4. Deciding how to respond to “I hope you feel better soon!”

5. Deciding if you’re actually able to do ‘The Thing.’

6. Deciding how much social interaction you can handle.

7. Deciding when to ask for help.