@wamesmecfs.bsky.social
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
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
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
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
Still time to ask your local Constituency/Regional MSs: to take part
senedd.wales/find-a-membe...
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
The Big Issue explains the energy price rises taking place this month, with suggestions on how to cope.
tinyurl.com/bedsncwx
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
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 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
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
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
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
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
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
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
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
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
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
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
Cort explores research which found that the 'stimulating non-stimulant' mestinon also improves handgrip strength in ME/CFS.
tinyurl.com/ywbacc9e
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
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
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
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
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/
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
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
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
A series of 6 webinars by people living with PoTS will run throughout October. beginning on the 6th. Register in advance.
tinyurl.com/bdfcdh2u
