wamesmecfs.bsky.social
@wamesmecfs.bsky.social
.@WAMES have been fighting for 25 years for appropriate services. It is nice to see some interest in ME now.
Nation Cymru: “Living in darkness’: Senedd shines light on Wales’ ‘invisible’ ME crisis”

‘Plaid Cymru’s Adam Price shared the harrowing story of a constituent who needs palliative care aged 33 to highlight the devastating impact of myalgic encephalomyelitis (ME)’

nation.cymru/news/living-...
‘Living in darkness’: Senedd shines light on Wales’ ‘invisible’ ME crisis
Joe Woods Thousands of people in Wales are “invisible” to society and living behind blackout blinds – unable to bear light, sound or touch – the Welsh Parliament has heard. Plaid Cymru’s Adam Price sh...
nation.cymru
December 12, 2025 at 2:25 PM
A new booklet from the MEA explains visual disturbances & underlying conditions, including visual symptoms often related to ME/CFS, maintaining good eye health & research findings. Free to download.
tinyurl.com/3hzc4kew
Brand new information booklet: Vision and ME/CFS - The ME Association
Introduction Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, multi-system […]
tinyurl.com
December 12, 2025 at 1:37 PM
Dr Chris Armstrong's team recently published a paper on which genes were most impactful to metabolites in ME/CFS & which were most impactful in controls. Read the paper &/or sign up for an online discussion 17 Dec @ 9pm
tinyurl.com/2s4yrzfr
Exploring a genetic basis for the metabolic perturbations in ME/CFS using UK Biobank - Open Medicine Foundation
Explore new paper looking at which genes were most impactful to metabolites in ME/CFS and which were most impactful in controls.
tinyurl.com
December 12, 2025 at 1:36 PM
Two weeks on from the budget, it is still unclear how DWP & its ministers intend to cut £85 million next year, £310 million in 2027-28, £520 million in 2028-29, £580 million in 2029-30 & £455 million in 2030-31, from spending on disability benefits.
tinyurl.com/2fmvdxm3
Minister misleads MPs as mystery deepens over new £2 billion cuts to disability benefits
The disability minister has refused to apologise after misleading MPs about concerns over nearly £2 billion in new cuts to disability benefits. The Department for Work and Pensions (DWP) has added …
tinyurl.com
December 12, 2025 at 1:34 PM
Prof Warren Tate’s team list a number of conditions with overlapping symptoms: ME; FM; LC; EDS; MS; PoTS; MCAS. Although distinct conditions they suggest that by looking at them as an overlapping set of conditions this could aid understanding and management of them.
tinyurl.com/khjd4s4m
December 12, 2025 at 1:33 PM
MERUK comments on the Senedd debate, noting that the 5 proposed UK hubs for collaborative translational research is a new idea to them, and was not in the English ME/CFS Delivery Plan. Adam Price is calling for a research hub to be placed in Wales.
tinyurl.com/ja6rnppe
Senedd Cymru/Welsh Parliament debate on ME – 10 December 2025
Although delayed, the Senedd held a Member's Debate on ME on 10th December 2025 at behest of Adam Price MS (Motion NDM8884) in the chamber of the Senedd and responded to by Jeremy Miles MS Cabinet Sec...
tinyurl.com
December 12, 2025 at 1:31 PM
Gipsy Hosking, ME patient, reports how deep-rooted assumptions about health and functioning, also known as ableism, hinders participation in research e.g. inaccessible premises, allowing perfume, deodorant, detergent smells on clothes, background noise and lighting.
tinyurl.com/3bnaa7sr
Validisme in wetenschappelijk onderzoek: wanneer het lichaam niet “past”
Wetenschap is niet neutraal Wetenschappelijk onderzoek wordt vaak gepresenteerd als objectief en universeel. Maar hoe universeel zijn de resultaten wanneer hele groepen vrouwen met chronische aando…
tinyurl.com
December 11, 2025 at 1:48 PM
£1.1m has been awarded by the MEA to investigate links between ME/CFS and Long Covid. Professors Danny Altmann and Rosemary Boyton will lead the search for an immunological profile of the two diseases.
tinyurl.com/5b9bwpb9
£1.1m awarded to investigate links between ME/CFS and Long Covid
A new landmark study funded by The ME Association will help scientists to uncover shared pathways between ME/CFS and Long Covid.
tinyurl.com
December 11, 2025 at 1:47 PM
BBC invite people of any age, disability or background in Wales to apply for apprenticeships in Production by Sun 11 January. Search by location, click 'apply' beside the job you are interested in & complete the disability form.
tinyurl.com/4756pf3x
Home | Jobs and Careers with the BBC
We're one of the most creative organisations in the world, offering a rewarding, exciting and impactful career. Learn more about careers at the BBC.
tinyurl.com
December 11, 2025 at 1:46 PM
A US group invites people with ME/CFS, FM & Long COVID to join. Topic: Freedom from Thinking Traps Amidst Chronic Disease. Advance registration required. Tues 16 Dec 8pm UK
tinyurl.com/32edxxav
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.
tinyurl.com
December 11, 2025 at 1:43 PM
A profile of Prof Ron Davis covers his background, his son Whitney Defoe’s illness & his research efforts. He has uncovered "an unbelievable number of things wrong” with people with severe ME, but he has developed hypotheses to guide his research.
tinyurl.com/nhd9zuuk
Innovations to help chronically ill people thrive
Stanford Medicine experts are developing innovative approaches to preventing, diagnosing and treating chronic diseases so people can live healthier lives.
tinyurl.com
December 10, 2025 at 12:49 PM
Years of scapegoating rhetoric and politicians casting disabled people as “scroungers” have reinforced prejudices about the blue badge parking scheme and led to “envy and resentment” instead of equal access, according to a four-year research project.
tinyurl.com/3483rv3c
Years of scapegoating rhetoric has led to ‘envy and resentment’ of those with blue badges, research finds
Years of scapegoating rhetoric and politicians casting disabled people as “scroungers” have reinforced prejudices about the blue badge parking scheme and led to “envy and resentment” instead of equ…
tinyurl.com
December 10, 2025 at 12:48 PM
"What it's like to drown, while healthy people just go on living sometimes it's hard not to hate healthy people... This life does not belong to me, this is not my disease. That I am sick is as strange as a fish that lives in a tree..."
tinyurl.com/yc5u84un
December 10, 2025 at 12:47 PM
The 2nd Reading of the Railways Bill took place in Westminster on the 9th Dec. The Bill will create Great British Railways (GBR), a new public body that will oversee and coordinate the UK’s rail system. DR UK want GBR to deliver better access for passengers.
tinyurl.com/2ufxsxpu
DR UK Calls on Government to Commit to Rail Reform
tinyurl.com
December 10, 2025 at 12:45 PM
Debate on ME/CFS in the Senedd this afternoon, led by Adam Price MS, Wed, 10 Dec. Part of an all-afternoon Plenary Session - start time is approx.
Timetable: tinyurl.com/5f3z3xak
Motion: tinyurl.com/npkbe5b2
Watch: www.senedd.tv
Agenda for Plenary on Wednesday, 10 December 2025, 13.30 | Senedd
All published information, including reports, for Agenda for Plenary on Wednesday, 10 December 2025, 13.30
tinyurl.com
December 10, 2025 at 12:43 PM
Solve ME asks Prof Chris Ponting from the #DecodeME project "What has changed in ME/CFS research over the last year?" and if he is hopeful about ME research. [8 mins] View on YouTube for Transcript.
tinyurl.com/4d296wv8
"What's New in ME/CFS?" A New Series from Solve M.E. - Solve ME/CFS Initiative
We're rolling out our "What’s New in ME/CFS?" interview series, where we go straight to the source: the scientists on the front lines of ME/CFS research. We’re asking the questions that matter, and br...
tinyurl.com
December 10, 2025 at 12:41 PM
Motability answers concerns over the UK Government's plans for the scheme following the November 2025 Budget. 860,000 PIP recipients currently lease a vehicle so they can get around safely and independently.
tinyurl.com/5r8cjw24
Motability answers concerns over the Governments plans for the scheme
tinyurl.com
December 9, 2025 at 1:28 PM
MERUK sponsored a medical research virtual 'poster' competition at the IACFS/ME conference. Winners were Jolien Hendrix (epigenetic changes & autonomic dysfunction) and Anne Gardella (circulating cell-free RNA signatures).
tinyurl.com/nhc9y36u
December 9, 2025 at 1:27 PM
Changes to the way 999 calls to the Welsh Ambulance Service are managed aim to enable the service to quickly identify & respond to people with a range of serious, time-sensitive conditions like suspected stroke & heart attacks, which need to be prioritised.
tinyurl.com/4fr34tfw
New 999 call categories to improve patient care and ambulance response | GOV.WALES
Further changes to the way 999 calls to the Welsh Ambulance Service are managed will come into force from Tuesday 2 December.
tinyurl.com
December 9, 2025 at 1:24 PM
A national survey in Canada has found that virtual healthcare services are essential for Long Covid patients. Post-exertional malaise (PEM) is cited as an important reason these services are needed.
tinyurl.com/yvk9rbwz
National survey finds virtual health ‘essential’ for Long COVID support: SFU report
Researchers at the SFU Faculty of Health Sciences surveyed Canadian Long COVID patients, and found that many people with the condition consider virtual care "lifesaving and essential," while also noti...
tinyurl.com
December 9, 2025 at 1:23 PM
Feeling overloaded from Christmas already? Dr Xand & Dr Chris van Tulleken discuss how to get better at saying no.
tinyurl.com/52x75n36
Overwhelmed by Christmas already? How to say no and take back control
We often agree to do things we don’t want to do at this time of year. Here are three ways to help you say no.
tinyurl.com
December 9, 2025 at 1:22 PM
Cort reports on a Dutch autopsy study which found "the HPA axis with the dramatic reduction of CRH-producing neurons in the hypothalamus, a shutdown of the pituitary, & lower cortisol levels, appeared to be pretty much of a wreck in these autopsied patients with ME/CFS."
tinyurl.com/3w47at7h
December 9, 2025 at 1:20 PM
Do you shop online by PayPal? Why not name WAMES as your favourite charity this Christmas, so whenever you give a donation to the PayPal Giving Fund you help WAMES. Just add your preferences in your account details.
tinyurl.com/32zfenfu
WAMES Fundraising – donate with PayPal & eBAY
When shopping – pay by PayPal, Donate to WAMES   Do you shop on eBay or pay by PayPal? Why not name WAMES as your favourite charity, so whenever you shop you can give a donation to the P…
tinyurl.com
December 8, 2025 at 2:52 PM
David Tuller interviews Canadian journalist Simon Spichak, who has written about the lack of attention to PEM in Long COVID exercise studies. Many people with Long COVID, the proportion is debated, experience PEM & qualify for ME/CFS diagnoses. [16 mins] +Transcript
tinyurl.com/3eeenkd8
Interview with journalist Simon Spichak on lack of attention to PEM in Long COVID exercise studies
According to the headline of a recent article in The Sick Times, “less than 20% of Long COVID trials involving exercise even mention post-exertional malaise.” The news organization analyzed the registration records for clinical trials and found that only a small minority assess or take into account post-exertional malaise (PEM), the defining characteristic of ME/CFS. Many people with Long COVID—the proportion is debated—experience PEM and qualify for ME/CFS diagnoses. For these patients, exercise programs can be contra-indicated. The author of the Sick Times piece, Toronto journalist Simon Spichak, has an MSc in neuroscience. He is the founder of a low-cost online therapy clinic for students called Resolvve and runs a newsletter about underreported health and disability issues in Canada. I recently spoke with him about the issue.
tinyurl.com
December 8, 2025 at 2:50 PM
Ministers have been forced to admit that the proportion of Access to Work claims they are rejecting has leapt by more than a fifth this year, with disabled campaigners describing the figures as “unacceptable” and “clearly worrying”.
tinyurl.com/3ckjee6v
‘Unacceptable’ new figures show rejections of Access to Work claims have shot up this year
Ministers have been forced to admit that the proportion of Access to Work claims they are rejecting has leapt by more than a fifth this year, with disabled campaigners describing the figures as “un…
tinyurl.com
December 8, 2025 at 2:49 PM