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

The MEA have updated their booklet on flu vaccines to help people with ME/CFS to decide whether you ought to have the jab against this potentially unpleasant and even harmful illness.
tinyurl.com/27r2may9

Updated Booklet: Flu Vaccination & ME/CFS 2025/2026 - The ME Association

We have released an updated version of our flu information […]

tinyurl.com

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

The Access to Work scheme is failing disabled people & has caused them “real harm”, with some support cut by 80%, according to a detailed dossier of evidence prepared by Action on Disability. This has been sent to the National Audit Office for its investigation into AtW.
tinyurl.com/mrx6khta

Access to Work dossier of evidence shows ‘real harm’ and job losses caused by DWP cuts and failings

The Access to Work scheme is failing Deaf and disabled people, and its “decline” in the last two years has caused them “real harm”, with some support packages cut by 80 per cent, according to a det…

tinyurl.com

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

Australian ME researcher Sarah Annesley finds the discovery of a diagnostic blood test for ME/CFS promising and much needed, as early diagnosis & rest is key to recovery. She outlines the further research needed to make this 'proof-of-concept' study reality.
tinyurl.com/2uvct66n

Can a new blood test really detect ME/CFS? An expert unpacks new research

Diagnosis for myalgic encephalomyelitis/chronic fatigue syndrome currently relies on sometimes controversial diagnostic criteria – and can take years.

tinyurl.com

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

MERUK explores a study of specialised care for people with severe ME in a private clinic in Norway which uses a four-step supportive therapy programme. Not all patients experienced an improvement in disease severity but symptoms were not reported to worsen for anyone.
tinyurl.com/323t2hj5

Specialised care for people with severe or very severe ME/CFS in Norway

Røysumtunet, a private clinic and not for profit institution founded in 1965 in Norway, is primarily known for providing care to patients with severe epilepsy. However, in recent years, the institutio...

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

Still time to ask your local Constituency/Regional MSs: to take part
senedd.wales/find-a-membe...

Find a Member of the Senedd

We are the Welsh Parliament, made up of 60 Members. You are represented in the Senedd by five Members (MSs) - one for your local area and four for the region of Wales you live in.

senedd.wales

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

Debate in the Senedd next Wed 15 Oct to discuss Severe ME & services for ME generally - Adam’s Price MS Motion 8884
record.senedd.wales/Motion/8884

Motion - NDM8884 - Welsh Parliament

The Welsh Parliament is the democratically elected body that represents the interests of Wales and its people.

record.senedd.wales

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

The Big Issue explains the energy price rises taking place this month, with suggestions on how to cope.
tinyurl.com/bedsncwx

Energy bills to rise in UK as price cap increases. Here's how to get help

This is everything you need to know about how much energy bills are going up along with Ofgem's energy price cap – and where to get help.

tinyurl.com

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

Lives We Cannot Live, a photographic exhibition by documentary film-maker & photographer Jeremy Jeffs is now on YouTube as a virtual walk-through [4 mins] "The images displayed were a powerful representation of people who often feel invisible and lost by society"
tinyurl.com/36y2xxn7

Photography Exhibition 'Lives We Cannot Live' Walkthrough

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

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

Prof David Putrino presents pilot trial on rapamycin in Long COVID. Macrocyclic antibiotic & m-TOR inhibitor has immunosuppressive effect in high doses. Aim is 2 identify suitable biomarkers of tx-responsive subjects & plan larger study[14mins]+Transcript
tinyurl.com/52sr63jp

David Putrino | International ME/CFS Conference 2025: Low-dose Rapamycin for Long COVID

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

tinyurl.com

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

David Tuller is crowdfunding for his salary & expenses. He outlines the many ways in the past year he has challenged the promotion of psycho-behavioral interventions & inappropriate FND diagnoses, exposed research & reporting errors, and promoted positive research. Ends 7 Nov.
tinyurl.com/ymj5x78r

David Tuller's Trial by Error Fall 2025

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

tinyurl.com

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

ME Centraal reports death by euthanasia of 32 year old Dieuwertje de Wit, after 14 years of 'unfair battle with the disease ME'. "We are sad that she is no longer here, but there is also relief that her suffering is over."
tinyurl.com/25e3c2kx

In Memoriam: Dieuwertje de Wit (✰ 1 september 1993 † 26 september 2025)

Bezoek het bericht voor meer.

tinyurl.com

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

The next APPG meeting will be held on 23 Oct. Invitations have been sent to all existing members of the APPG. The meeting will continue on from the last evidence hearing session as part of the Groups Severe ME Inquiry.
tinyurl.com/yr5m6pp2

Meetings - All-Party Parliamentary Group on ME

Meetings

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 3d

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

t.co

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 3d

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.

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 3d

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)…

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 3d

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

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 4d

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...

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 4d

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...

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 4d

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

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 4d

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.

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 4d

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.

tinyurl.com

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

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

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

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…

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

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.

tinyurl.com

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

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

tinyurl.com

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