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#pwme

11 posts8 participants1 post today
JB 🐎 :neuro:

Hopeful question for the #MECFS community:

In what ways can perimenopause (and menopause and beyond) impact pre-existing ME/CFS?

I’m looking for any info at all: your personal experiences, links to helpful websites or forums, or scientific studies. I’m open to anything.

ME-related websites seem to only have rather generic info about perimenopause/menopause. And I’ve only found scientific studies looking into how peri and gynae issues can mean someone is more likely to get ME/CFS for the first time at peri / meno age (which is not my question).

It’s getting easier to look up perimenopause info, thank goodness, but I want to know how it could impact pre-existing ME/CFS. For example, I’m wondering if it could be responsible for triggering the significant decline in my baseline and the fact I very much have all the criteria of POTS now. However, these things could also be due to a previous burnout or over exertion in recent years, too, not peri. I’m wanting to build a picture of what’s possible to try to understand my current and future experiences and help guide my future decisions.

#pwME @mecfs #POTS #myalgicencephalomyelitis #chronicfatiguesyndrome

Tom Kindlon

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"

thesicktimes.org/2025/07/09/li

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

ahimsa

"Severe ME Artists Project 2025"

meaction.net/2025/07/10/severe

#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.

@mecfs

#MEAction Network · Severe ME Artists Project 2025Learn more about this year’s project
#MEcfs#PwME#SevereME
Continued thread
ahimsa

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.”

@mecfs @longcovid

#MEcfs#PwME#LongCovid
Tom Kindlon

"Experts call new Canadian Long COVID guidelines “contradictory” and “deeply concerning”: Guidelines recommend exercise and therapy as treatments, following attempted influence from Paul Garner"

thesicktimes.org/2025/07/08/ex

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

Tom Kindlon

Authors of official Hungarian recommendations for the treatment of ME/CFS change their views after intervention from Prof Jonathan Edwards

Google translation:
telex-hu.translate.goog/techtu

Image is from the latest Science for ME weekly update

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

Continued thread
Tom Kindlon

2/

"findings suggest that immune dysregulation in ME may be linked to enhanced cleavage of membrane-bound SMPDL3B by PI-PLC."

However Science for ME forum commentary identified that the study may suffer from inadquate matching between patients and controls.

#MEcfs #CFS #PwME
@mecfs

Continued thread
Tom Kindlon

2/

"We performed a prospective, open-label pilot trial"

"Six out of 10 patients experienced clinical improvement during follow-up."

"there was a significant correlation between baseline number of NK cells in peripheral blood and clinical improvement"

#MEcfs #PwME #CFS
@mecfs

Tom Kindlon

New funding opportunity announcement from one of the UK taxpayer-funded research bodies:

"Post-acute infection syndromes, including #longCOVID & myalgic encephalomyelitis/chronic fatigue syndrome"

nihr.ac.uk/funding/post-acute-

I find some of the wording a bit hard to understand

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

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