Thanks to those who volunteered for this interview. We believe they intend to interview Dr Nigel Speight & a local mother of a 14-year-old.
People anywhere can listen live at https://www.northernsound.ie/
Hopefully a recording will be available
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
The Netherlands:
The UWV benefits agency wrongly told several patients with ME that they could work a large part of the week or full-time. The Central Appeals Tribunal (CRvB) ruled this today in an interim ruling.
Google translation:
https://nos-nl.translate.goog/artikel/2575416?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp&_x_tr_hist=true
via @me_valentijn
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
3/
"Signs and symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a multiorgan, life-changing disease that manifests with a range of symptoms that vary between patients. Emerging research across a number of fields is beginning to resolve involved pathophysiologies"
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid @covid19 @auscovid19 @mecfs
"BIO-INSIGHT was applied to gene expression data from patients with fibromyalgia, myalgic encephalomyelitis, and co-diagnosis of both diseases."
https://www.sciencedirect.com/science/article/pii/S0010482525009837
Image is from the Science for ME weekly update
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM
Coverage of the July 9 webinar which covered "new findings about the underlying biology of infection-associated chronic conditions (IACCs), as well as discussions about how patient engagement leads to better research"
Image is from the Science for ME weekly update
@thesicktimes
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
"Severe ME Artists Project 2025"
https://www.meaction.net/2025/07/10/severe-me-artists-project-2025/
#MEAction has announced their Severe ME Artists Project for 2025 in recognition of Severe ME Day on August 8th.
Anyone who identifies as having severe ME can participate.
If you need help submitting your artwork send email to sMEartistsproject@meaction.net
Submissions are due by July 24.
The Summer 2025 edition of Solve ME's journal, The Chronicle, is now available.
Summary here:
https://solvecfs.org/read-the-summer-2025-edition-of-the-chronicle/
Direct link to the summer 2025 issue (PDF) here:
https://solvecfs.org/wp-content/uploads/2025/07/Summer2025ChronicleFinal.pdf
Another quote:
“Infection is one of the most well-known triggers of ME,” says study author Suzanne Vernon, Ph.D., the research director of the Bateman Horne Center in Murray, UT, and one of the nation's leading researchers in ME/CFS.
“It was pretty obvious that this was going to be an issue, and RECOVER provided the perfect opportunity to put numbers to it.”
"With Long COVID, the Hidden Risks of ME/CFS Are Real"
https://www.healthcentral.com/condition/coronavirus/long-covid-may-trigger-me-cfs
"Researchers found that people who had COVID were nearly five times more likely to develop ME/CFS than those who never had the virus."
In 1986, Dr Melvin Ramsay, a British physician renowned for his advocacy on ME, published a book documenting cases of ME following various confirmed or suspected infectious outbreaks, including the notable 1955 Royal Free Hospital outbreak.
Read quotes: https://www.meresearch.org.uk/dr-melvin-ramsays-foresight-about-me-quotes-from-1986/
Germany
"The MIRACLE research project is now recruiting participants."
https://www.ukgm.de/ugm_2/deu/umr_kar/65384.html
Image is from the latest Science for ME weekly update
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs_de
"Experts call new Canadian Long COVID guidelines “contradictory” and “deeply concerning”: Guidelines recommend exercise and therapy as treatments, following attempted influence from Paul Garner"
Image is from the latest Science for ME weekly update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Authors of official Hungarian recommendations for the treatment of ME/CFS change their views after intervention from Prof Jonathan Edwards
Google translation:
https://telex-hu.translate.goog/techtud/2025/07/10/kronikus-faradtsag-ajanlas-orvosi-hetilap-felrevezeto-allitasok?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp
Image is from the latest Science for ME weekly update
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
"The Tiger Who Came to Tea… and stayed" by @LongCovidAdvoc
https://www.thereforme.uk/p/the-tiger-who-came-to-tea-and-stayed
Many important issues in this article: the language gap, lack of research, and lack of clinical care for severe ME/CFS patients.
Bedbound patients have a harder time getting any type of medical treatment. They'll be excluded from most research studies. And on top of that, their symptoms and lived experience are often questioned.
2/
Details for the next meeting of the Bray ME/CFS adult support group
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #Bray @mecfs
The next meeting of the Bray ME/CFS adult support group is on Friday, July 25. See next post for more details
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #Bray #PwME @mecfs
1/
8-minute interview on Irish national radio
https://www.rte.ie/radio/radio1/clips/22527468/
While ME is discussed a bit, the focus is more on the issue of living in a care/nursing home
#MyalgicEncephalomyelitis #chronicillness #PwME #SevereME @mecfs @chronicillness
@spoonies
@disability #mecfs
2/
Study used a broad definition of #CFS. "each cohort comprised 309,692 patients.Over an average follow-up period of approximately 12 years,influenza patients exhibited a significantly increased risk of developing CFS vs matched controls (aHR = 1.51; 95% CI: 1.48–1.55;p < 0.001)”
#MEcfs #PwME
@mecfs
