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wamesmecfs.bsky.social

@wamesmecfs.bsky.social
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 20h
Benefits and Work is urging people to begin challenging the Timms review right now, rather than waiting until its final report is published. They’re providing some suggestions about issues you can raise with your MP. tinyurl.com/267hurm8
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 20h
Facebook support group: #MEAction Seniors Connect. People with ME who have been sick for decades and are aging, share information and support each other. tinyurl.com/38pjp53x
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 20h
Dr Carmen Scheibenbogen talks about Auto-antibodies in ME/CFS. [22 mins] +Transcript +Chapters www.youtube.com/watch?v=fL4p...
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Carmen Scheibenbogen, MD, PhD, Charité University, Berlin
YouTube video by MECFS Collaborative Research Center at Stanford
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 20h
Musician with severe ME, James Strazza talks to Daniel Moore on how to make meaning. This was recorded in Sep 2024 but remained unreleased until Sep 2026. James died on 4 May 2026. [55 mins] +Transcript tinyurl.com/yu8pnxmj
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 20h
'Benefits and Work' is a company that aims to provide independent and accurate information about how to claim and keep your benefits. A 1 year membership of £19.95 gives access to all their guides. Their forum is free for everyone to read, but only members can post. benefitsandwork.co.uk
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 20h
Discussion of the research study into Facility-Measured sleep electroencephalographic microstructures in Long COVID & ME/CFS. [1 h 7mins] +Transcript +Chapters tinyurl.com/2jz8ymbk
tinyurl.com
Sleep EEG Microstructures
Why do people with Long COVID and ME/CFS wake up unrefreshed, even when a standard sleep study looks close to normal? A 2026 study in the journal SLEEP points to the fine-grained structure of sleep itself. In this Open Medicine Foundation Journal Club, Dr. Danielle Meadows walks through "Facility-Measured Sleep Electroencephalographic Microstructures in Long COVID" (Sun et al., 2026), from Dr. Janet Mullington's team at Beth Israel Deaconess Medical Center in collaboration with OMF's Computational Research Center for Complex Diseases. WHAT THE STUDY FOUND Researchers recorded overnight in-lab polysomnography (a clinical sleep study) in 28 people with Long COVID, 28 age- and sex-matched healthy controls, and 19 people with ME/CFS. They analyzed sleep EEG microstructures: detailed patterns in brain activity that standard sleep staging doesn't capture. Compared with healthy controls, both the Long COVID and ME/CFS groups showed: - Sleep spindles (short bursts of brain activity tied to memory) that lost frequency more steeply, called a more negative spindle chirp - Spindles firing too early relative to slow oscillations, the large, slow brain waves of deep sleep - Higher infraslow oscillation power, a very slow rhythm linked to the brain's overnight waste-clearance (glymphatic) system In Long COVID, earlier spindle timing correlated with worse self-reported rest quality. That ties an objective brain measure to the lived experience of unrefreshing sleep. The ME/CFS group showed additional features, including more widespread infraslow elevation and more alpha-delta sleep, which suggests related but distinct biological profiles. Limitations: sample sizes were small, ME/CFS participants came from a single clinical center, and the healthy control group differed in racial composition from the patient groups. These findings generate hypotheses and need replication in larger, more diverse cohorts. This video is for education only; please talk with your clinician about any medical decisions. CHAPTERS 0:00 Welcome and housekeeping 2:20 Why standard sleep studies can miss unrefreshing sleep 3:57 Study design: Long COVID, ME/CFS, and healthy controls 7:31 What EEG and polysomnography measure 9:19 Sleep macrostructure vs. microstructure 10:25 Slow oscillations and sleep spindles 12:16 Spindle chirp and infraslow oscillations 15:06 Who was studied and conventional sleep results 18:10 Brain activity by sleep stage in Long COVID 24:19 ME/CFS comparison: beta power and alpha-delta sleep 26:09 Spindle chirp in Long COVID and ME/CFS 30:10 Spindle timing: early coupling with slow oscillations 34:44 Infraslow oscillations and brain waste clearance 37:32 Shared sleep signatures in Long COVID and ME/CFS 40:45 Linking EEG findings to how rested patients feel 44:31 Recap of key findings 46:07 Glymphatic function, neuroinflammation, and spinal fluid research 49:36 Thalamocortical loop and overlaps with Alzheimer's and autism 52:50 Possible treatment implications and sleep biomarkers 55:25 Distinct ME/CFS and Long COVID profiles 57:34 Audience Q&A 1:05:23 Closing Q&A topics include sharing this research with your doctor, supplemental oxygen, access to advanced sleep EEG analysis, ME/CFS vs. narcolepsy type 1, 40Hz sound, and CPAP. RESOURCES Read the paper (SLEEP, 2026): https://doi.org/10.1093/sleep/zsag090 Join Research Insiders for more Journal Club sessions: https://lp.constantcontactpages.com/sl/BLsWz83/OMFJournalClub Support this research: https://www.omf.ngo/?form=donatenow ABOUT OMF Open Medicine Foundation is a global nonprofit accelerating discovery, diagnostics, treatments, and cures for ME/CFS, Long COVID, and related multi-system chronic complex diseases (MSCCD).
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 20h
Bridge Between Continents Conference: Beyond the diagnosis, understanding complex chronic illness. Bringing together "leading Icelandic and international experts in ME, Long COVID, Environmental illness and POTS" Live streamed in English. Registration closes 20 Oct. tinyurl.com/bdzkebej
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BRIDGE BETWEEN CONTINENTS conference
Beyond the Diagnosis, Understanding Complex Chronic Illness. A international conference bringing together leading Icelandic and international experts in ME, Long COVID, environmental illnesses, and PO...
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 20h
Support for unpaid carer survey - share your experiences On Thurs 15 Oct, Alison Bennett MP will lead a debate in Westminster Hall on support for unpaid carers. Survey deadline: Wed, 14 Oct. tinyurl.com/3kbawrsf
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Support for unpaid carers
Share your experiences with Alison Bennett MP for her debate in Westminster Hall.
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 20h
Todd Davenport discusses PEM: Moving the field of ME/CFS research from Post-Exertional ‘Malaise’ to Post-Exertional ‘Mechanisms’ [32 mins] +Transcript +Chapters tinyurl.com/y7thx4dv
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Todd Davenport, PhD, University of the Pacific
Todd Davenport, PhD, University of the Pacific PEM: Moving the Field of ME/CFS Research from Post-Exertional ‘Malaise’ to Post-Exertional ‘Mechanisms’
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 20h
The Right to Food commission report was launched at the Labour Conference. It reports on the scale & scope of UK food poverty & hunger. The Disability Poverty Campaign Group (DPCG) gives evidence on the depth of food poverty for Disabled people. The PM has vowed to take action. tinyurl.com/ydztbnw5
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Right to Food commission release report on food poverty
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 20h
OMF briefly explains that Gut Dysbiosis is an imbalance in the microorganisms—bacteria, fungi, and viruses—that live in your digestive system. There is evidence that the gut plays a role in driving or worsening symptoms. An OMF project has explored this relationship. tinyurl.com/26d3xpd2
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Gut dysbiosis - Open Medicine Foundation
Gut dysbiosis disrupts immunity and brain communication. OMF's Melbourne Collaboration explores how an imbalanced microbiome may drive ME/CFS symptoms.
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 20h
Commissioner is inviting older ppl living in rural communities in Wales to share their views & experiences abt best things abt rural life, plus some of challenges & changes that would have biggest positive impact. Help influence policy and support positive change. tinyurl.com/2p9n3kzj
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Rural Voices - Older People’s Commissioner for Wales
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 20h
Cort Johnson explores why ME & FM have rarely been studied together, altho similarities have been noted. Studies of LC & ME are more common. He suggests that now similar biological pathways are showing up in ME, FM & LC, then an effective LC tx cd also be applicable to ME & FM tinyurl.com/ysk7huw6
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The Eternal ME/CFS Fibromyalgia Question: How Close Are They? And Why it Matters - Health Rising
Geoff’s Narration The GIST   So much for the ME/CFS community depends on the answer to the question: “How close a match is ME/CFS to long COVID?” Symptomatically and physiologically, the two diseases ...
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 05/10/2026
The type of assessment you have for PIP or the WCA makes little material difference to the outcome, according to a trial involving over 350,000 randomly assigned assessments covering face-to-face, telephone and video. Switching assessment types does however make a difference. tinyurl.com/msuxbf2w
tinyurl.com
Face-to-face assessment makes little difference, but switchers do better
Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments...
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 05/10/2026
Abby explores why keeping in touch with friends via texting might be hard for ppl with energy limiting conds. She suggests thinking of it as an 'occupation' & finding new ways to tackle it. tinyurl.com/y6vexsc
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Why Is Texting So Hard? How to Make Staying in Touch Easier
A closer look at why staying connected can take more work than we expect.
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 05/10/2026
A Sunflower lanyard can discreetly identify that people living with invisible illnesses like ME may need support, help, or just a little more time in shops, transport, or public spaces. Individuals, charities & businesses can apply for membership. tinyurl.com/jxudrsre
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What is the Hidden Disabilities Sunflower?
Some disabilities, conditions or chronic illnesses are not immediately obvious to others. For some people, this can make it hard to understand and believe that someone,
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 05/10/2026
4th PRIME online workshop on Wed 28th Oct 2-5pm GMT will cover: why neurology has become such an important area of research in ME/CFS; how findings are shaping future studies; & their potential to improve diagnosis & identify therapeutic targets. Register in advance tinyurl.com/49aksujj
tinyurl.com
Register for the 4th PRIME webinar: The Neurology of ME/CFS
Register for the 4th PRIME webinar about neurology in ME/CFS. The webinar is part of the PRIME research project and is online.
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 05/10/2026
Home secretary has been asked why she is delaying implementation of a “long overdue reform” that wd take an “important step” towards equality for disabled victims of hate crime. Section 145 of act needs to be “commenced”. Some sections came into force last month, but not s.145 tinyurl.com/5ybakanc
tinyurl.com
Home secretary delays implementation of ‘long-overdue’ measure on disability hate crime
The home secretary has been asked why she is delaying the implementation of a “long overdue reform” that would take an “important step” towards equality for disabled victims of hate crime. The chan…
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 05/10/2026
David Tuller talks to George Monbiot about why he felt it was time to give a 2026 update to the ME/CFS scandal in his Guardian column, how he became engaged with these issues in the first place, and related topics. [23 mins] +Transcript tinyurl.com/zzwm9fp4
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Interview with George Monbiot about Guardian column on ME/CFS
Last week, George Monbiot, the British investigative journalist and longtime contributor to The Guardian, published a corker of a column about the mistreatment and abuse of people with ME/CFS, including those with Long COVID. Previous Monbiot essays on the issue were equally blunt about the failures of the medical and academic establishments in this domain.  Monbiot hadn’t paid much attention to controversies over ME/CFS until he experienced a bout of COVID-19 early in the pandemic. To his surprise, it took him months to recover. He wrote about the experience—and then found himself tagged as a Long COVID super-spreader. The tagger was Professor Michael Sharpe, who gave a presentation at an insurance industry gathering and claimed Monbiot’s column would trigger more reports from people who thought they had Long COVID. Monbiot then wrote about Professor Sharpe’s accusation—in the process learning about the entire debate, including the history of the fraudulent PACE trial. Here’s the headline of Monbiot’s latest column: “Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed.” And the subhead: “Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors.”  Monbiot and I spoke yesterday about why he felt it was time to take up the topic again, how he became engaged with these issues in the first place, and related topics. Here's a link to last week's Guardian column: https://www.theguardian.com/commentisfree/2026/sep/24/abandoned-dismissed-and-gaslighted-me-sufferers-betrayed
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 05/10/2026
MERUK shares some of the responses to their recent survey, noting how ME fatigue is not everyday tiredness, nor is it normal fatigue experienced by healthy people. It is a crushing symptom that weighs individuals down and can be felt throughout the entire body. tinyurl.com/5n97e4ez
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 02/10/2026
The Women's Health Plan for Wales sets out how NHS orgs in Wales will improve health services for women. Researchers would like to speak to 60 people via a zoom session about measuring the success of the plan and what needs to change. Respond by Mon 5 Oct @1200 tinyurl.com/3hnue3py
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 02/10/2026
Online support group: A US group invites people with ME/CFS, FM & Long COVID to join. Topic: Managing common chronic illness symptoms. Tues 6 Oct @8pm UK time. Register in advance. tinyurl.com/yjc99mym
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Online Support Group
These support groups are tailored for individuals living with ME/CFS, FM, Long COVID, and co-existing conditions. Supporters and loved ones are also welcome to join.
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 02/10/2026
Timms, the disability minister has performed a rapid U-turn and agreed to do more to involve disabled people in producing his cross-government disability strategy, but his efforts have still been described as “back to front and feeble”. tinyurl.com/26ycwthx
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Minister makes ‘feeble’ U-turn after criticism of failure to coproduce government’s Plan for Disability
The disability minister has performed a rapid U-turn and agreed to do more to involve disabled people in producing his cross-government disability strategy, but his efforts have still been describe…
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 02/10/2026
MESiG - The monthly Zoom meeting of Glamorgan's ME support group will be held on Mon 5 Oct 3-4pm All welcome. us05web.zoom.us/j/8685765150... Meeting ID: 868 5765 1501 Passcode: Mesig tinyurl.com/yth8xpzu
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 02/10/2026
Timms, the minister leading a UK gov review of PIP has refused 4 times to rule out cuts to spending, but he has promised no disabled person will be forced to accept products or services instead of cash payments. tinyurl.com/57j6ypm8
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Timms refuses four times to rule out cuts to PIP, but makes firm promise on cash payments
The minister leading a government review of personal independence payment (PIP) has refused four times to rule out cuts to spending, but he has promised no disabled person will be forced to accept …
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 02/10/2026
MERUK highlights Dysautonomia Awareness Month, an annual campaign to raise awareness, reduce diagnostic delays, improve resources and research, and advocate for patients. People with ME/CFS often report dysautonomia symptoms. tinyurl.com/3xwray9u
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 02/10/2026
Over the past 6 mths, UK ME/CFS Biobank has distributed 1,300+ biological samples to research groups across the world, supporting studies aimed at improving understanding of ME/CFS. They send thanks to every participant, the ME Association for funding and to all the researchers. cureme.lshtm.ac.uk
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 01/10/2026
Anil responds to comments in the press and talks about how his illness is not part of his identity even though he talks about it a lot. "The community has everything to be proud of and it's fantastic that people express themselves..." [4 mins] +Transcript tinyurl.com/48a6yb5n
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My illness is not part of my identity
Some late‑night, off‑the‑cuff rambling about the notion that some people make their illness part of their identity. I may write more coherently about the subject later. This was partly in response to that Telegraph article, which I’m not linking because we’ve all seen this tired claim recycled elsewhere, plus it doesn’t need any extra views. I’m still crashing, so recording a video wasn’t the smartest idea, but I always feel a bit better at night and did it spontaneously. I’ll crawl back into my PEM cave now. Lator! #pwme #MECFS #millionsmissing #severeME #PAIS
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 01/10/2026
The Disability Advice Project Wales helps people with issues around their long-term health conditions/disabilities and issues that affect their carers. They provide independent advice on welfare rights and care services. tinyurl.com/3akw945u
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 01/10/2026
Arnaud Denis, a 43-year-old French director & actor, passed away via euthanasia in Belgium in Sep, following a few years of a very severe form of ME/CFS after surgery. He wanted everyone to know how badly he had been treated by the French medical establishment. tinyurl.com/32kxanh6
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Ik heb het gehad met medisch gefaal
Arnaud Denis, een 43-jarige Franse regisseur en acteur, is overleden in België op 22 september 2026. Enkele jaren geleden kreeg hij na een operatie een zeer ernstige vorm van ME/CVS. Hij koos ervoo…
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 01/10/2026
Dr Klimas explains what latent viral infections are, their role in developing long COVID and why the COVID virus itself may be persisting in some LC patients. She also addresses why siloed medicine consistently fails ME/CFS and LC patients. [39 mins] +Transcript +Chapters tinyurl.com/296t8af9
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ME/CFS and Long COVID: From Viral Reactivation to Treatment with Nancy Klimas, M.D.
Donate to the Institute: https://givenow.nova.edu/assaf-family-and-community-me-cfs-endowed-fund-campaign/?a=1 In today's episode, Haylie Pomroy sits down with Dr. Nancy Klimas, Director of the Institute for Neuro-Immune Medicine, to answer the community's most pressing questions about viral reactivation in ME/CFS and long COVID. Dr. Klimas explains what latent viral infections are, how Epstein-Barr virus reactivation is one of the strongest predictors of who develops long COVID, and why the COVID virus itself may be persisting in the GI tract of some long COVID patients long after the acute infection resolves. She walks through the specific tests patients can request to assess viral reactivation, why the IgM and IgG interpretation taught in medical school is outdated, and what the immune response patterns actually reveal about whether a virus has recently reactivated or gone quiet. The conversation also addresses why siloed medicine consistently fails this patient population, why one treatment will never be enough for an illness that imbalances the endocrine, immune, autonomic, and inflammatory systems simultaneously, and why this is the worst possible time to give up. This is the field's best and most essential message for anyone still searching. Tune in to the Hope and Help For Fatigue and Chronic Illness podcast. Key points: 00:00 Introduction 01:53 What viral reactivation means 02:27 EBV reactivation as a predictor of long COVID 05:55 Is it old viruses reactivating or is COVID still in the body? 07:46 Monoclonal antibody trial for long COVID 09:57 Why antivirals have had limited success in ME/CFS 11:01 How siloed medicine misses the connective picture in ME/CFS 13:45 How to test for EBV reactivation 18:54 What high IgG and normal IgM really mean 21:42 PCR for EBV and the full EBV panel 25:31 What cytokine panels and flow cytometry reveal 29:23 Why complex illness requires multiple interventions 33:44 Why the INIM approach does not give up Dr. Nancy Klimas, a clinical immunologist by training, is the director of the Institute for Neuro-Immune Medicine, who has allotted her life to helping other people find cures for their complex illnesses that were once considered helpless. She works with her fellow medical experts in researching and analyzing the deeper causes of such diseases, particularly on the neuro-immunity side, to provide the best option suited for every single case or story they handle. LinkedIn: https://www.linkedin.com/in/nancy-klimas-49255178/ Instagram: https://instagram.com/nancyklimas Twitter: https://x.com/ngklimas?s=20 Haylie Pomroy, Founder and CEO of The Haylie Pomroy Group, is a leading health strategist specializing in metabolism, weight loss, and integrative wellness. With over 25 years of experience, she has worked with top medical institutions and high-profile clients, developing targeted programs and supplements rooted in the "Food is Medicine" philosophy. Inspired by her own autoimmune journey, she combines expertise in nutrition, biochemistry, and patient advocacy to help others reclaim their health. She is a New York Times bestselling author of The Fast Metabolism Diet. Website: https://hayliepomroy.com Instagram: https://www.instagram.com/hayliepomroy Facebook: https://www.facebook.com/hayliepomroy YouTube: https://www.youtube.com/@hayliepomroy/videos LinkedIn: https://www.linkedin.com/in/hayliepomroy/ X: https://x.com/hayliepomroy Thank you for tuning in to the Hope and Help For Fatigue and Chronic Illness Podcast. Sign up today for our newsletter. 👉 https://nova.us4.list-manage.com/subscribe?u=419072c88a85f355f15ab1257&id=5e03a4de7d Enjoy our show? Please leave us a 5-star review so we can bring hope and help to others This podcast is brought to you by the Institute for Neuro-Immune Medicine. Learn more about us here. Website: https://www.nova.edu/nim/ Facebook: https://www.facebook.com/InstituteForNeuroImmuneMedicine Instagram: https://www.instagram.com/NSU_INIM/ Twitter: https://www.twitter.com/NSU_INIM TikTok: https://www.tiktok.com/@nsu_inim Your support goes a long way toward the advancement of clinical research. Donate here. 👉 https://www.nova.edu/nim/donations.html #MECFS #LongCOVID #ViralReactivation
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 01/10/2026
DRUK hilites invisibility of working age Disabled ppl in Prime Minister's 'vision for future' at Labour Party Conference. "I realise that speech had to be big picture, but we make up 24% of population. Don’t we have a right to be included in vision for future?" tinyurl.com/3h3pfj7u
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Are Disabled People Invisible?
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 01/10/2026
#MEAction Partner Caregivers Support Group invites caregivers who are spouses, partners etc of ppl with ME/CFS or Long COVID (& associated conditions) to connect, share & support each other via zoom - first Sunday of the month. 4 Oct @ 8pm BST Contact kim@caregiverwisdom.net tinyurl.com/mrydhna2
tinyurl.com
#MEAction Partner Caregiver Support Call | #MEAction
The Partner Caregivers Support Group invites caregivers who are spouses, partners, or significant others of people with ME/CFS or Long COVID (and associated conditions) to join us to connect, share, a...
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 01/10/2026
MERUK highlight a Norwegian study which asked a small group of women what they needed from supported self-management. They wanted support that was 'personalised, delivered in manageable stages, and embedded in a consistent care pathway with ongoing review and follow up.' tinyurl.com/5n949pts
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 30/09/2026
Not long left to register for the Swansea Bay webinar on their ME/CFS service now. Don't miss out if you live in this area and want to find out what they have to offer you. Registration closes at 9am on 2nd October. tinyurl.com/3a83hfz9
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 30/09/2026
David Tuller slates a medical journal for publishing as a research article an account of recovery from ME/CFS via the mind body programme, the Lightning Process. He questions why the many experiences of failure to recover, or symptom deterioration, are not worth publishing. tinyurl.com/d8uekfmh
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 30/09/2026
Disability Empl Chrtr sets out acts 300+ orgs & empls believe UK Gov shd take 2 impr working lives of disabled ppl. For far 2 long disabled ppl have not enjoyed same empl opps as wider wrk age pop. Empl gap btwn disabled & non-disabled ppl has remained persis large at apchg 30% tinyurl.com/2r5whcsv
tinyurl.com
Home | The DEC
The disability employment charter sets out the actions we believe the government should take to improve the working lives of disabled people.
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 30/09/2026
MERUK sums up more from the ISLC-PAIS conference including: the role of systems thinking in understanding PEM; why the term ‘PAIS’ may not encompass all cases of ME/CFS; and why publishing null or negative research findings is essential. tinyurl.com/yyedphkp
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 30/09/2026
Me Time is a series of online activities for carers in Wales. October's activities include: Book club (5th): Finding Joy in the Ordinary (7th); Bookbinding Workshop (14th); Understanding Menopause (20th); Dwr Cymru support (21st); people from the past (27th) tinyurl.com/bde73hys
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 30/09/2026
How close are we to Precision Medicine for ME/CFS & LC? Steve Gardner speaks with Dr Chris Armstrong, an OMF researcher, about how metabolomics, patient stratification and precision medicine could help move the field forward. [1 h] +Transcript +Chapters tinyurl.com/4v4dwewf
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 29/09/2026
Dr Komaroff, Dr Chu & Dr Bateman share current evidence about biological abnormalities with ME/CFS, Long COVID & other chronic illnesses along with treatment options and best practices for caring for patients. [56 mins] +Transcript +Chapters tinyurl.com/bdhutwz5
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Underlying Biological Abnormalities in Long COVID & ME/CFS - Sept 2026
Long COVID and Post-Infectious Syndromes ECHO A Practical Approach to Complex Long COVID & ME/CFS Patient Cases Bateman Horne Center and the University of Utah Health Project ECHO teams join forces once again to provide a case-based learning series illuminating strategies for assessment and management of Long COVID (PASC), ME/CFS, and related comorbid conditions. Patient cases are shared in this session for educational purposes. In some instances, the information does not relate to an individual and instead represents a compilation of disease presentation. In cases involving individual patient information, the patients have authorized the discussion of their case in this setting. In this ECHO session, Dr. Anthony Komaroff, Dr. Lily Chu, and Dr. Cindy Bateman share current evidence about biological abnormalities with ME/CFS, Long COVID, and other chronic illnesses along with treatment options and best practices for caring for patients. Dr. Komaroff shared how multiple biological abnormalities can contribute to a variety of symptoms that result in a vicious cycle of neuroinflammation, autonomic dysregulation, mitochondrial damage, and overall disruption of multiple body systems. Dr. Chu shared a framework for unravelling the pathophysiology of ME/CFS and highlighted research that identifies unique abnormalities in ME/CFS including exercise/activity intolerance, cognitive dysfunction, and unrefreshing sleep. Dr. Bateman shared practical tips for addressing the vicious cycles of ME/CFS and how clinicians can support patients who are stuck in these cycles. Key topics include: Biological Abnormalities Neuroinflammation Autonomic Dysfunction Mitochondrial Dysfunction Cerebral Perfusion Exercise and Activity Intolerance Cognitive Dysfunction Unrefreshing Sleep Post-Exertional Malaise Activity Pacing Time Stamps: 0:00 Housekeeping 1:10 Introduction 1:37 Dr. Komaroff Causes of Symptoms 10:35 Symptom Persistence 14:26 Dr. Kamaroff Summary 18:25 Q&A 27:15 Dr. Chu Unravelling Pathophysiology 31:36 CPET Research 25:37 Cognitive Dysfunction Research 39:06 Unrefreshing Sleep Research 43:37 Dr. Bateman What Do We Do Now? 48:35 Discussion & Q&A Note to community members: We advise viewers to always speak with their medical care team before making any adjustments or changes to their current care regimen. Bateman Horne Center’s involvement in this program is made possible with the additional support of the Open Medicine Foundation. 📘 Download the Clinical Care Guide: https://bit.ly/4jScKFu 🖥️ View the Slide Deck: https://batemanhornecenter.org/wp-content/uploads/2026/09/9_1_26-Komaroff-Chu-Bateman-Biological-Abnormalities.pdf
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 29/09/2026
Share & learn is a series of online activities for carers. October's activities include: Home Energy Advice Team give advice on energy bills (1st); Active listening (13th): Fun energising fitness (15th); Zumba (23rd); Poems on caring for dementia (29th) tinyurl.com/2hawyk3a
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 29/09/2026
The Timms Review workshops on PIP are part of a £1 million co-production contract, and have been criticised for their lack of detailed information and for using tokens and a sheet of coloured paper to get attendees’ feedback. tinyurl.com/yc6p7btm
tinyurl.com
One short call could prevent PIP claims proceeding
Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments...
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 29/09/2026
Pillow writers host a range of online grps where new & experienced writers & crafters can meet to share their work &/or ideas. They are open to anyone with ME/CFS or Long Covid. There’s no obligation to write, to speak or to get out of bed. tinyurl.com/bdephz8z
tinyurl.com
Pillow Writers
An ME/CFS writing group
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 29/09/2026
Cort explores research using a new drug, Bezisterim, designed to tamp down inflammation in body & brain. It had a significant effect on ppl with long COVID with 'more severe' fatigue, PEM and cognitive issues. They now hope to get funding for a phase III trial to uncover more. tinyurl.com/263tpf8j
tinyurl.com
Bezisterim - the Best Long COVID Drug Trial Yet? BioVie Aims for a Big, Phase III Trial - Health Rising
Bezisterim produces moderate and broad treatment effects in several different long COVID subsets. BioVie, the drug manufacturer, hopes to move forward with a big phase III trial.
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 29/09/2026
DRUK has written to chancellor ahead of autumn budget, asking UK Gov to take short & long-term measures that lift Disabled people out of poverty & combat discrimination and exclusion. “The budget on 28 October should start the journey towards a fairer and more equal UK” tinyurl.com/ycfe3sv9
tinyurl.com
Chancellor urged to treat Disabled people fairly
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 29/09/2026
MERUK discusses the MERUK-funded research projects presented at ISLC-PAIS 2026. These talks covered topics spanning muscle and blood-vessel abnormalities, post-exertional malaise (PEM), cellular waste, gene regulation, fat metabolism, and subtle changes in brain tissue. tinyurl.com/2tm6ehne
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 28/09/2026
If u live with ME/CFS in Swansea Bay & Neath Port Talbot area u need to know yr options. Join our webinar on 2 Oct, 12.30–13.30 to hear what NHS support is available from SBUHB. Registration closes 9am on 2 Oct. Video will be shared with all who register. Please share widely tinyurl.com/mrnn8yxp
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 28/09/2026
Are UK gov's current emergency planning provisions falling short for Disabled people? Not everyone can afford to stockpile food & water. Julie says we need more than evacuation plans, we need a guarantee that our independence and dignity will be upheld no matter the emergency. tinyurl.com/yn6shtwp
tinyurl.com
“We need more than an evacuation plan” – Where Do Disabled People Fit
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 28/09/2026
MERUK invites people to take part in a survey about fatigue in ME/CFS. They "are collecting anonymous quotes from individuals with confirmed or suspected ME/CFS on various core symptoms to be used at our discretion online, in print, and for internal organisational education." tinyurl.com/3pz82xpb
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