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#pwme

32 posts14 participants6 posts today
Public
Tom Kindlon

116th Research Digest! “We explore emerging blood-based biomarkers for ME/CFS and share findings from a study highlighting the high burden of chronic overlapping pain conditions and their impact on health and quality of life. From the long COVID field, new research links persistent spike protein in the brain to lasting neurological symptoms. We also share Sarah’s story”

emerge.org.au/researchdigest/r

#mecfs @mecfs #pwme #longcovid @longcovid

www.emerge.org.auResearch Digest | Issue 116 – Emerge Australia
Public
Tom Kindlon

At David Tuller's 2024 Irish talk, I was reminded of:

-how important his work is
-how good he is at highlighting & challenging problematic statements
-how glad I am that I've been able to pull back from such work

So happy to be able to support him
crowdfund.berkeley.edu/project

This was my second donation as he is struggling to reach his target

@david @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #NeuroPASC

David Tuller's Trial by Error Spring 2025
UC BerkeleyDavid Tuller's Trial by Error Spring 2025Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Spring 2025. Your gift will make a difference!
Public
Tom Kindlon

Great to see ME/CFS drug trials like this, particularly with lots of objective outcome measures:

[Tokyo, Japan] Study of the Efficacy and Safety for Rituximab in ME/CFS

s4me.info/threads/tokyo-japan-

Was very disappointing when Norwegian trial of this failed

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

Detailed Description The efficacy and safety of rituximab (genetical recombination), a CD20 antibody, on ME/CFS symptoms after administration to patients with myalgic encephalomyelitis/chronic fatigue syndrome will be compared in an exploratory, placebo-controlled, double-blind fashion. In the subsequent secondary evaluation period, subjects who received rituximab in the primary evaluation period will receive placebo, and the timing and duration of rituximab's effect will be explored throughout the entire evaluation period. Subjects who received placebo during the primary evaluation period will receive rituximab during the secondary evaluation period to explore changes in endpoints before and after switching from placebo to rituximab in the same subjects. Study Start (Actual) 2025-04-09 Primary Completion (Estimated) 2026-09-30 Study Completion (Estimated) 2027-10-31 Enrollment (Estimated) 30 Recruiting at National Center of Neurology and Psychiatry (NCNP)
Public
ahimsa

🗣️ Help us send out a strong SOS message on May 12th, International ME/CFS Awareness Day

This video from Laurie Jones, executive director of #MEAction, invites you to join our protest in Washington, DC, or online

Please join us - we need as many folks as possible!

More details here:

meactions.org/millionsmissing2

Thank you! ❤️

(see replies for full text of the video)

@mecfs
@longcovid
@disability

#MEcfs#PwME#LongCovid
Public
Tom Kindlon

UK: A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

Screenshot is from the latest Science for ME weekly update

Links:
psp-me.co.uk/campaign-strategi

s4me.info/threads/uk-a-proposa

meresearch.org.uk/academics-re

organise.network/actions/petit

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

UK A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform "A new campaign has been launched today by Action for ME, ME Research UK and the ME Association based on the work of a group of academics, practitioners, clinicians, charity representatives and people with lived experience of ME who have been working together to input to the cross-government Delivery Plan on ME/CFS." The proposal is for a government funded group of research hubs with a single coordinating centre. Proposal | Thread with links to related documents MERUK article | Thread Signatories are invited for an open letter to the UK government supporting the proposal. Letter | Thread
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