Week beginning 16th February 2026
News, advocacy and articles
UK #ThereForME “Six months since the publication of the Final Delivery Plan for ME”
The UK government policy paper was published on 22 July 2025. In a blog post #ThereForME summarise developments since then:
“What progress has been made? Are there signs the plan is making a difference? Today we’re taking a whistlestop tour of the latest developments in three priority areas.”
Blog |
Plan |
Thread
UK Open Letter to BACME
In late 2025 the British Association for Clinicians in ME/CFS released a document titled ‘ME/CFS Guide to Therapy 2025’. Professor Jonathan CW Edwards, Dr Michelle Bull and Joan Crawford have written an open letter in response to this.
“The document represents a failure to move forward to an evidence-based approach to an illness that is recognised as being long term for many people and, at present, of unknown mechanism. It appears to serve interests of BACME members rather than patients and from our perspective involves a deception that can only perpetuate the lack of trust ME/CFS patients have in the healthcare system.
With limited resources, we believe the focus must be on medical care of severe and very severe cases, including nutrition and other life support, to reduce unnecessary deaths.”
David Tuller has interviewed Jonathan Edwards about BACME and the open letter.
Interview l
Thread
UK ME Local Network is asking for experiences of app usage for symptom tracking.
“This short questionnaire gathers experiences of people with chronic illness, using apps to help manage or track symptoms. We will produce a report about patient experience of using apps in order to promote more debate and awareness as these are being discussed widely in the NHS. Your responses will be anonymised and your email will not be used for anything further except to send you the report with the collated results if you wish. Please respond by 28th February to be included in the collated report.”
Survey |
Bluesky |
Thread
The Boston Globe “A doctor watches his 28-year-old daughter suffer from long COVID. He clings fiercely to hope.”
Profile of a woman living with severe Long Covid who has “developed the symptoms of ME/CFS.” “To this day, [her father] gets well-meaning advice from physician friends who show surprising ignorance about his daughter’s condition.”
Article |
Thread
Austria
The Long Covid outpatient clinic planned at the psychiatric department of Vienna General Hospital will not be approved, the hospital announced. There has been strong criticism from experts of the proposed treatment concept, which was seen as equating Long Covid too closely with depression.
Article (German) |
Thread
Trial by Error by David Tuller “More on the Controversy over Invisible Illness”
A good summary of the debate on the book "Invisible Illness: A History from Hysteria to Long COVID" by medical anthropologist Emily Mendenhall. “...Mendenhall’s vision does not include a call for ramping up research programs into biological causes and treatments of these complex chronic conditions. That’s what patients—at least the ones I know—desire more than anything. Given this absence as well as the book’s overall orientation, it is not surprising that many in the patient community have flatly rejected it.”
Article l
Thread
Solve ME “Advocacy Update: Three Crucial ME/CFS Federal Budget Wins”
Advocacy Director Monique Wike gives an update on U.S. federal funding for ME/CFS.
Article |
Thread
Solve ME “Watch! Protecting the Ones You Love: Legal & Insurance Tools for ME/CFS Caregivers”
Video and slides from their webinar on long-term disability (LTD) insurance and long-term care (LTC) planning. Primarily meant for US residents.
Article |
Thread
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Coming events
Bateman Horne Center - Free Online Support Group
Tuesday, March 3, 1 - 2 pm MDT
Topic:
Communicating Needs with Confidence
Advance registration required, registration link shows time in your time zone.
Registration |
Thread
Bateman Horne Center - “Coffee” with a Clinician
Wednesday, March 11, 10 am MDT (9 am PT / 11 am CT / 12 pm ET)
Topic:
To Be Announced
Free to attend, optional $5 donation.
Registration |
Thread
Germany
It is now possible to register for the International ME/CFS Conference in Berlin from 7 to 8 May 2026. Speakers include Christopher Armstrong, Chris Ponting, Oystein Fluge, David Putrino, Carmen Scheibenbogen, and many other ME/CFS experts.
Announcement |
Registration |
Thread
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Research news and commentary
Australia Government's Medical Research Future Fund
$1m awarded to Dr Christopher Armstrong's team in Melbourne, to study energy inefficiency in Long COVID and ME/CFS.
Announcement by OMF |
MRFF |
Thread
UK AfME announce phase 1 of SequenceME
“Sequence ME & Long Covid is a £20 million research initiative designed to explore the root causes of ME and Long Covid using long-read, whole-genome sequencing.”
“Having now secured a portion of funding for phase 1, and with 9,000 ME samples already in place through DecodeME, our focus will now move to putting all the foundations in place for this study. This includes building strategic partnerships and securing funds to undertake the remaining phases of the study.”
Website |
Thread
UK MEA provide update from ME/CFS Biobank Steering Group
Included are details of discussions on the DHSC Delivery Plan, Research Case Definition for ME/CFS, the Danny Altmann Rosetta Stone study, the Jackie Cliff HHV-6 and Electrophysiology studies as well as Caroline’s Retirement Plans.
Website |
Thread
UK MEA announce funding for study into biological markers in ME/CFS and Long Covid
Based at the UK Dementia Research Institute’s Fluid Biomarker Laboratory at UCL the 12-month research project will analyse proteins linked to the immune system and the brain in people with ME/CFS and Long Covid. It will use samples from the UK ME/CFS Biobank and the UCLH STIMULATE ICP Long Covid study and compare them to healthy controls.
“The project will use ALAMAR Bioscience’s NULISA platform, a next generation technology with extremely high sensitivity. It can detect more than 300 proteins involved in immune function and central nervous system processes — including many that cannot be measured using standard immunoassays”
Website |
PDF |
Thread
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Research
Long Covid research
Widespread ncaas Imprints in the Serum Proteome of COVID-19 Convalescents Uncovering Immune System Sequelae — Kun Liu et al.
"Consistently, the dysregulated and sustained [non-coded amino acids] in COVID-19 convalescents were functionally correlated with the pathways relevant to immune responses, complement activation, and coagulation, suggesting the biological impacts of the molecular imprints."
Article |
Thread
Assessment of dynamic cerebral blood flow changes during cognitive tasks in patients with post-COVID-19 syndrome — Kutz et al.
"PCS patients displayed disturbed intermittency in blood flow regulation as indicated by a more rigid blood flow signal structure particularly during the N-back task, which targets working memory and sustained attention."
Article |
Thread
Pediatric long COVID is characterized by myeloid CCR6 suppression and immune dysregulation — Jon Izquierdo-Pujol et al.
"Our findings indicate that pediatric long COVID is associated with a dysregulated immune response characterized by altered innate immunity and overactivated T-, B- and NK-cell responses."
Article |
Thread
Early administration of neutralizing monoclonal antibodies and post-acute sequelae of COVID-19 — Jinghao Nicholas Ngiam et al.
"In our cohort, we found that early treatment with mAbs did not significantly alter the overall risk of PASC." "We observed that patients who received mAbs had a higher risk of developing post-acute autoimmune sequelae (adjusted HR [aHR] = 2.20 [1.22, 3.97])"
Article |
Thread
Persistent inflammatory cytokine signature in long Covid-19 patients: a meta-analysis— Dornas et al.
Review. "Elevated cytokine levels in patients with PASC support the role of persistent inflammation in the pathophysiology of ongoing symptoms."
Article |
Thread
Single-cell transcriptomics reveal intrinsic and systemic T cell aging in COVID-19 and HIV — Alan Tomusiak et al.
"By highlighting both cell-intrinsic and systemic aspects of immune aging, our approach offers novel insights into how diseases such as COVID-19 and HIV differentially impact the immune system at the cellular level."
Article |
Thread
Association Between Post-COVID-19 Infection and Fibromyalgia: A Controlled Case–Control Study — Ayse Oz and Tulay Yildirim
"Patients with a history of COVID-19 showed significantly higher odds of meeting ACR 2016 fibromyalgia criteria, as well as worse clinical symptom burden, compared with controls."
Article |
Thread
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S4ME social media:
Forum,
Mastodon,
Bluesky