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Image has a longer description of the story of the stack of lever arch files.
#MyalgicEncephalomyelitis #CFS
@mecfs @IrishMECFSAssociation
A well-written account of someone with #SevereME and some of the issues she has to deal with. #pwME #MyalgicEncephalomyelitis
https://virology.ws/2026/01/27/trial-by-error-an-essay-on-living-with-severe-me/
I just wanted to say a huge thank you to MEAction Network (https://www.meaction.net/) and Visible (https://www.makevisible.com/) for the Visible band I won last month 👍 Having had ME/CFS for over 15 years I thought I knew everything about pacing but the Visible band has even taught this old dog some new tricks. Very cool 😎
#MECFS #MEAction #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigue #ChronicFatigueSyndrome #ChronicIllness #CFS #Spoons #Spoonie #Pacing #Health #Visible #Visibleband
An error by the US CDC in 1994 resulted in enterovirus ME/CFS being ignored in the US for decades
cross-posted from: https://lemmit.online/post/8176711 [https://lemmit.online/post/8176711] > ##### This is an automated archive made by the Lemmit Bot [https://lemmit.online/post/14692]. > The original was posted on /r/cfs [https://old.reddit.com/r/cfs/comments/1sltjo6/an_error_by_the_us_cdc_in_1994_resulted_in/] by /u/Hip_III [https://old.reddit.com/u/Hip_III] on 2026-04-15 02:41:59+00:00. > *** > From the 1970s onwards, a number of studies by British researchers found persistent enterovirus infections in ME/CFS patients’ muscles. These many UK studies are detailed in an MEpedia article here [https://me-pedia.org/wiki/List_of_enterovirus_infection_studies]. > > The CDC saw all this research coming from the UK, and in 1994, conducted an in-house unpublished study on US ME/CFS patients to see if they could find enterovirus. > > But the CDC made a fundamental mistake in their study: the CDC tested ME/CFS patients’ blood for enterovirus by PCR, and could not detect the virus. So the CDC concluded that enterovirus was not involved in ME/CFS. And from that time onwards, enterovirus was largely ignored in the US as a causal factor for ME/CFS. > > British researchers, however, were aware that the virus was not to be found in the blood, and knew the virus lived the tissues, so they tested muscle tissue samples for enterovirus, and were able to routinely detect enterovirus in ME/CFS patients. But for some reason, the CDC did not follow this methodology. > > So this set back enterovirus ME/CFS research in the US for decades, until Dr John Chia came along and published his seminal 2008 study [https://pubmed.ncbi.nlm.nih.gov/17872383/] where he detected enterovirus in the stomach tissues of 82% of US ME/CFS patients. > > Source: Dr John Chia, Invest in ME International ME Conference, London 2009: Diagnosis and Treatment of ME/CFS Associated With Chronic Enterovirus Infection [https://www.youtube.com/watch?v=YSgcNSqssTI&t=22m30s]. Timecode 22:30.
(US)
Tell Congress: Fund ME/CFS Research Now
Deadline is April 15 I believe
https://solvecfs.quorum.us/campaign/157943/
Image is from the AMMES April 2026 newsletter
#MEcfs #PwME #ME #MyalgicE
@mecfs
#CFSME #MEeps #CFIDS #SEID #NeuroME #CFS #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
"Professor Chalder Downgrades Definition of 'Recovery'" by David Tuller
https://www.sciencedirect.com/science/article/pii/S0965229926000506
Screenshot from latest Science for ME weekly update
#MEcfs #PwME #ME #MyalgicE
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
ME Advocates Ireland - advice for Occupational Therapists
https://meadvocatesireland.blogspot.com/2026/01/occupational-therapy-care-working.html
Screenshot from latest Chronic Living Therapy newsletter
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How to Cite:
Things I’m Missing Out On (A Few Words About Myalgic Encephalomyelitis And Loss). (2026). PhysiOdyssey: Exploring Human Physiology, 2(1), 34-36. https://doi.org/10.36399/t61j1h47
One month to go
A great opportunity to raise awareness and understanding. Also the month (and the associated awareness day/week) can be used for lobbying, fundraising, and other forms of activism.
Tom Kindlon
Colin-Roy Hunter
Dave Underwood
Björn