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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5h

Scientists say a lot of work needs to be done on blood test 4 ME/CFS. “This test needs to be fully validated in better designed & independent studies before it's considered for clinical application. Even if validated, test will be expensive."
t.co/0BICGBjbny

https://tinyurl.com/5t3u7tuw

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5h

PET imaging with a novel radiotracer has revealed a potential new biomarker for memory impairments (brainfog) in patients with lon COVID, Japanese researchers have reported. Suppression of AMPAR activity in the brain may be a viable treatment strategy.
tinyurl.com/ydact448

PET reveals mechanism underlying brain fog in long COVID

Brain regions where C-11 K-2 radiotracer was increased were negatively correlated with long-COVID patients’ performance on cognitive tests.

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5h

BHC explains how the drug Tonmya was shown to improve deep, restorative sleep and pain in FM with only mild and temporary side effects.
tinyurl.com/5f4m56u3

New Hope in Fibromyalgia Treatment: Understanding Tonmya

Quick Take Fibromyalgia has long been a frustrating condition for both patients and doctors. It causes widespread pain, poor sleep, exhaustion, “fibro-fog” (trouble with memory and concentration)…

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5h

Norfolk researchers have developed a blood test to diagnose ME/CFS using EpiSwitch 3D Genomics tech examining how DNA is folded, with 92% accuracy. Dr Shepherd says it needs further testing to be able to distinguish between other illnesses. Prof Ponting says could cost c. £1,000
tinyurl.com/bfryu46c

‘Breakthrough’ as scientists develop first-ever test for debilitating condition

Academics have made a ‘breakthrough’ in the diagnosis of myalgic encephalomyelitis, also known as chronic fatigue syndrome

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 1d

Simon Wessely has been appointed to chair a review to decide whether some mental health and neurodivergence issues are being overdiagnosed. In 2011 the Times called Wessely “the most hated doctor in Britain” for popularising the idea that ME/CFS is a psychological condition.
tinyurl.com/yc6vrzsn

Controversial professor to investigate overdiagnosis of mental health and neurodivergence for Labour

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...

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 1d

MERUK believes that the English Under-Secretary of State may have signalled that the charity, patient and researcher backed ‘ME/CFS and Post-Infectious Disease Research Platform’ proposal has not been looked upon favourably
tinyurl.com/2p9uyrsp

“Establishing a research hub for ME/CFS would not provide the same level of flexibility”

When Tom Morrison MP tabled a Written Question (UIN 72045) to the Department for Health and Social Care on "how much funding his Department has allocated for Myalgic encephalomyelitis research in each...

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 1d

New research from Disabled Motoring UK’s Baywatch 2025 survey revealed widespread misuse of disabled parking bays and a severe lack of accessible EV bays across UK supermarkets, with little evidence of improvement since the survey was last held in 2022.
tinyurl.com/ytx3bu8c

Baywatch 2025 Reveals Widespread Misuse of Disabled Parking Bays

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 1d

OMF briefly describes the importance of blinding in rigorous clinical trials. Blinding is a process in where the treatment that a participant is given as part of the trial (e.g., the drug being studied vs. a control) is kept from specific people involved in the study.
tinyurl.com/3udh6xuy

Science Wednesdays: What is Blinding? - Open Medicine Foundation

Learn more about blinding, why it’s important in ME/CFS research, and how blinding happens.

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 1d

Cort explores research which found that the 'stimulating non-stimulant' mestinon also improves handgrip strength in ME/CFS.
tinyurl.com/ywbacc9e

Exertion Enhancer? Mestinon (Again) Moves the Needle on a Key Marker in ME/CFS - Health Rising

Mestinon improved handgrip strength - a key factor in overall health - in ME/CFS.

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 2d

Portugese hybrid conference: Scientific & Clinical Advances in ME & LC. 12-13 Nov. In Portguese & English. Speakers include Nuno Sepúlveda, Chris Ponting, Linda Tannenbaum, David Putrino, Pretorius, Systrom, Klimas. 10€ Register online.
tinyurl.com/4ry997pa

2ª Conferencia Internacional sobre EM/SFC e Covid Longo

2ª CI Avanços Clínicos e Científicos em EM/SFC e COVID Longa NOVEMBRO 12-13 2025 NA ORDEMDOS MEDICOS NO PORTO Junte-se a nós, presencialmente ou online

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 2d

DNS says information from Labour ministers and other party sources at the Labour conference has shown beyond any doubt that the government is preparing for further attempts to cut spending on disability benefits over the next 12 months.
tinyurl.com/bdf7ccze

All the evidence from Labour conference points in one direction: More cuts to disability benefits

Information from Labour ministers and other party sources has shown beyond any doubt that the government is preparing for further attempts to cut spending on disability benefits over the next 12 mo…

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 2d

Metabolism is the process by which the body turns food into energy. OMF briefly explains how this is studied in ME/CFS.
tinyurl.com/2jf8u8p3

Metabolism - Open Medicine Foundation

Explore how metabolism is studied in ME/CFS, including mitochondrial function and metabolomics.

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 2d

A series of blogs aims to look in detail at the first analysis of the #DecodeME study results. It begins by looking at SNPs and heritability.
tinyurl.com/4bznkvy3

DecodeME: the biggest ME/CFS study ever - ME/CFS Science

The first results of DecodeME are in, the largest research project ever undertaken on myalgicContinue readingDecodeME: the biggest ME/CFS study ever

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 2d

MERUK gives an introduction to Mast Cell Activation Syndrome (MCAS) and says its possible that MCAS is underdiagnosed, since its symptoms are broad and often mistaken for other conditions. There is also an overlap in symptoms with ME.
www.meresearch.org.uk/what-is-mcas/

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

The #CureME Free Sample Campaign offered high-quality samples from the Biobank at no cost to those with the best outline research proposal. Among the winners are Dr Sarah Annesley (Oz) & Dr Kempuraj Duraisamy (USA) who are working on an MERUK project.
tinyurl.com/4sftr5aw

Free samples from the UK ME/CFS Biobank – Winners announced

Earlier this year, the team at the UK ME/CFS Biobank asked ME Research UK to highlight a new initiative, referred to on X as the ‘#CureME Free Sample Campaign’, which offered high-quality samples from...

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

DRUK highlights what the COVID Inquiry has learned so far about the pandemic's effect on Disabled people - that they were failed by the government and healthcare systems. The Inquiry makes recommendations but it is unknown if they will be implemented.
tinyurl.com/2s2wx8rk

What has the Covid Inquiry has uncovered about the pandemic's effect

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

Specialty food shop owner Rachel Riggs had to completely reinvent herself and her relationship with food when she got ME/CFS. Her new cookbook contains nutrient-dense cooking—food that fuels long-term health without sacrificing flavour.
tinyurl.com/yeymnsfn

In Good Health: How Chronic Illness Redefined My Relationship with Food - Health Rising

In Good Health cookbook by Rachel Riggs

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

A series of 6 webinars by people living with PoTS will run throughout October. beginning on the 6th. Register in advance.
tinyurl.com/bdfcdh2u

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

David Tuller explains why a diagnosis of functional neurological disorder (FND) for people with long COVID (or ME) can lead to delays in appropriate care for symptom relief and inappropriate focus on psychotherapy &/or physical therapy. He suggests how to deal with it.
tinyurl.com/4murfwxx

Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you. - The Sick Times

Some people with Long COVID are receiving potentially unhelpful diagnoses of functional neurological disorder (FND), a condition in which people experience neurological symptoms that cannot be attribu...

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

DNS says the Labour party has used its annual conference to stress – once again – that its focus is on supporting “working people”, rather than disabled people who are unable to work.
tinyurl.com/26zaf2x8

Labour uses conference to sideline disabled people… unless they are working

The Labour party has used its annual conference to stress – once again – that its focus is on supporting “working people”, rather than disabled people who are unable to work. In his 6,300-word spee…

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

Online event with US clinicians exploring the BHC's Clinical Care Guide. Advance registration required. Wed 8 Oct, 5-6pm BST
tinyurl.com/bzsrsrwn

Coffee with a Clinician

Join expert medical providers to learn how BHC manages care for individuals with ME/CFS, Long COVID, and co-existing conditions.

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 6d

David Tuller speaks to Prof Iwasaki about the Symposium on “Long COVID & Other Post-Acute Infection Syndromes", the current state of LC research, the debate over viral persistence, research on prolonged symptoms after COVID-19 vaccination etc. [20 mins] +Transcript
tinyurl.com/3kc5jyw4

Interview with Yale immunologist Akiko Iwasaki

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 6d

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 6d

MERUK explains dysautonomia and the conditions that fall under this umbrella, as many people with ME experience symptoms of light headedness, temperature dysregulation, palpitations, breathlessness etc.
tinyurl.com/4ub52tk2

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 6d

A report by the National Association of Welfare Rights Workers (NAWRA) demonstrates how Access to Work (AtW) is failing disabled claimants through a combination of delays, unnecessary bureaucracy and the lack of any appeal process.
tinyurl.com/33tuc22z

How Access to Work is failing disabled people

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...