Tom Kindlon

Blue badge symbol Years of scapegoating rhetoric has led to ‘envy and resentment’ of those with blue badges, research finds In a survey of 300 people, 74 per cent of disabled people said they had been accused of “faking” their impairments while using their blue badges. These types of encounters were particularly common for younger disabled people, with some told they were “too young” to be disabled. One of those who took part in the survey, who is 49, said: “A member of the public stopped me as I was parking in a Blue Badge space. “He knocked on my window, I wound it down and he told me I shouldn’t be parking there, and I had no right to be there. “I explained I was disabled. He said I was too young and there was nothing wrong with me. “I proceeded to get into my wheelchair and get out of the car, in fairness, he did look quite embarrassed when I got out of the car.” Read more here>>

Years of scapegoating rhetoric has led to ‘envy & resentment’ of those with blue badges, research finds

Note: blue badge = UK name for disabled parking permit

www.disabilitynewsservice.com/years-of-sca...

Screenshot from AMMES March 2026 Newsletter

#Disabled #chronicillness #Disability #Spoonie

The Diagnostic Challenge of Chronic Fatigue Syndrome

www.latimes.com/doctors-scie...

Screenshot from AMMES March 2026 Newsletter

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Outcomes of ME/CFS following infectious mononucleosis: seven-year follow-up of a prospective study — Jason et al. "Seventy-nine percent of those with Severe ME/CFS 7 years later continued to meet the criteria for ME/ CFS." "However, only 30% to 25% of those with either Moderate or Persisting symptoms had ME/CFS at the 7-year follow-up."

Outcomes of ME/CFS following infectious mononucleosis: seven-year follow-up of a prospective study

www.frontiersin.org/journals/med...

Screenshot from Science for ME update

Note here: severe ME/CFS = satisfies 2+ criteria; moderate ME/CFS = satisfies only one set of criteria

#MEcfs #CFS #PwME

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Summary thread
bsky.app/profile/mecf...

1) 🇩🇪 This study of hospital employees (HEs) infected with Sars-Cov-2 in three medical centres in Cologne, found that a year later, at least 3.2% meet ME/CFS criteria.

This paper by Karl Tronstad was published in the journal Cell Reports Medicine.

We made summary about it below 👇

Same old story from psychosocial researchers.
An unblinded CBT trial found modest gains in the subjective outcome of fatigue. Which is almost likely bias. They measured physical activity with wearables, but failed to publish the results, later acknowledging no gains.
So no evidence CBT works.

"Here is how bullshit replicates itself in today’s medical world: Conduct a flawed trial, declare success despite serious questions, then develop health policy based on these hyped-up claims."

Why even do studies if their results don't even matter?

News Release 5-Mar-2026 How viruses mess with our brains A team from the UNIGE and the HUG reviewed 900 scientific articles to better understand the impact of viruses on memory, attention, and concentration. Peer-Reviewed Publication Université de Genève FacebookXLinkedInWeChatBlueskyMessageWhatsAppEmail What impact does a viral infection have on our memory, attention, and concentration? The COVID-19 pandemic has reignited interest in this question, which has now been extended to other infections such as HIV, herpes, and hepatitis. A team from the University of Geneva (UNIGE) and Geneva University Hospital (HUG) reviewed over 900 scientific articles exploring the links between the immune system and cognitive functions. This analysis, published in Neuroscience & Biobehavioral Reviews, has identified several biological markers associated with cognitive decline in the context of infection. It also provides a solid foundation for future research.

News Release 5-Mar-2026

"How viruses mess with our brains: A team from the UNIGE and the HUG reviewed 900 scientific articles to better understand the impact of viruses on memory, attention, and concentration"

www.eurekalert.org/news-release...

#COVIDBrain #NeuroPASC #LongCovid #PASC #MEcfs #CFS

Support demanded to accelerate chronic fatigue research at Winchester event Patients and scientists appeal for government help in moving research forward.

Another important article about an *international* ME conference listed under "local news" by the BBC, rather than "health".

And please stop calling it "chronic fatigue"!!!

www.bbc.co.uk/news/article...

Dutch Agency Funds CBT Training Program Based on Flawed Long COVID Trial (5 March 2026) By David Tuller @davetuller1.bsky.social

virology.ws/2026/03/05/t...

#LongCovid #PASC #MEcfs #CFS

Oops, I used the wrong screenshot with this.
Here is the correct one for "Progressively Widening Healthcare Costs in Long COVID Over Five Years"

www.medrxiv.org/content/10.6...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC #PwLC #postcovid #postcovid19

Tom Morrison Liberal Democrat Cheadle Commons To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 5 November 2025 to Question 86003, if his Department will commission a specific comparative review, in collaboration with the Medical Research Council, into the relative level of National Institute for Health and Care Research funding for research into myalgic encephalomyelitis/chronic fatigue syndrome compared with other long-term conditions. Answer Dr Zubir Ahmed Labour Glasgow South West Commons Answered on 5 March 2026 The Department does not intend to commission a specific comparative review into the relative level of National Institute for Health and Care Research (NIHR) or Medical Research Council funding for research into myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), compared with other long-term conditions. We recognise that ME/CFS is an under-researched area, and we are committed to working with the ME/CFS community to identify and address barriers to research, with the ambition of supporting and funding more research and capacity-building programmes. As outlined in the ME/CFS Final Delivery Plan, there has historically been a relatively low amount of biomedical research funded on ME/CFS, compared with disease burden. Our efforts are focussed on delivering the actions outlined in the ME/CFS Final Delivery Plan to support and increase research in this area. Since our answer to Question 86003, we have hosted a showcase on post‑acute infection conditions, bringing together people with lived experience, researchers, clinicians, and funders to stimulate further research. A summary of this showcase has been published on NIHR Open Research. We have also made progress with our new funding opportunity for development awards focussed on the feasibility of a phase 2 platform clinical trial. This would test multiple repurposed pharmaceutical interventions and/or non-pharmacological interventions for the trea…

(UK)
House of Commons:

"We have also made progress with our new funding opportunity for development awards focussed on the feasibility of a phase 2 platform clinical trial"

questions-statements.parliament.uk/written-ques...

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Progressively Widening Healthcare Costs in Long COVID Over Five Years — Jingya Cheng et al. "The trajectory showed no inflection point suggesting stabilization, even at 60 months of follow-up. This distinction carries important implications for health system planning, as static cost projections based on short-term estimates will substantially underestimate the true economic burden."

Progressively Widening Healthcare Costs in Long COVID Over Five Years

www.medrxiv.org/content/10.6...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC

Symptom Patterns, Recovery, and Impact of Long COVID: Findings From a Longitudinal Survey

dx.doi.org/10.1093/ofid...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC #PwLC #postcovid #postcovid19

Association of G-Protein-Coupled Receptors autoantibodies with vasoregulation in Post-COVID— Felix S. Seibert et al. "Although certain autoantibodies were associated with parameters of vasoregulation, the present data do not provide evidence for a causal, pathogenic, or etiologically relevant role of these autoantibodies in Post-COVID."

From Germany

Association of G-Protein-Coupled Receptors autoantibodies with vasoregulation in Post-COVID

journals.plos.org/plosone/arti...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC #PwLC #postcovid #postcovid19

Announcement for ME/CFS Advocacy Week 2026 from March 23 to 27 with upward arrows and a megaphone graphic. Megaphone in top corner. Solve M.E. logo and MEAction logo under each arrow.

#MECFS affects millions but is NOT part of standard clinical training.

This Advocacy Week (Mar 23–27), Solve M.E. & #MEAction Network will ask patient safety agencies to support our mission to introduce ME/CFS questions into qualifying national medical exams.

Register: https://ow.ly/Tqet50YoPG7

Graphics all have black background with red accents and white writing. The #MEAction logo is in top corner. Graphic explaining upcoming Medicaid changes with mandatory work requirements. "Medicaid Facts. One of the upcoming changes to Medicaid is mandatory work requirements. While it is falsely made to sound simple- hey people with disabilities are excluded from that right? - in reality it will be anything but simple. Here are some very important facts to help understand the issues."

Thanks for joining in to learn more about Medicaid so we can prepare for upcoming changes!

One of the changes to Medicaid is mandatory work requirements. While it is falsely made to sound simple- hey people with disabilities are excluded from that right? - in reality it will be anything but simple.

I also learned from interviewing @edwincpark.bsky.social that there's no guarantee that people who get Medicaid through SSI will be exempt from work requirements either. Like, these are people who have gone through a lot of paperwork for the government to see them as disabled enough.

NIH Director Jay Bhattacharya says patients with ME/CFS, long COVID, vaccine injury and chronic Lyme are often gaslit and told their symptoms are psychological, making them feel crazy. He’s told NIH staff he wants to invest in finding real answers for these conditions.

Edited clip from German TV: 14-year-old Philipp developed ME/CFS following a Covid infection. He hasn’t been to school in a year and barely sees his friends. His mother says we have never felt so helpless in our entire lives. #MECFS #LongCovid

Discover ME abstract

Details of the VICI grant

Two major European funding awards highlight growing investment in ME/CFS & post-acute infection research.

Prof. Simon Carding secured €7.5M EU Horizon funding for DISCOVER-ME, while Prof. Jeroen den Dunnen received a €1.5M Vici grant — the first awarded to PAIS research.

TW: Assisted Suicide

Clip from German TV. Kim has #MECFS and describes how her illness has progressed, leaving her bedbound and sensitive to light and sound.

At 25, she talks about her decision to apply for assisted suicide, saying she can no longer live like this.

Intro to a 1993 documentary on #MECFS

When medicine doesn’t understand an illness, patients are often mistreated. New discoveries challenge existing beliefs, but in the meantime, for those suffering, life can be a living hell.

Clip from BBC Politics North:

A GP describes how #LongCovid ended her career after she needed a wheelchair within a year of contracting the virus.

She says patients are being forgotten by politicians and the NHS as the last dedicated clinic in the area prepares to close.

Clip 2 from BBC Politics North:

Dr Margaret O’Hara of Long Covid Support warns the condition is being “swept under the carpet” as clinics in the North East are set to close. Long Covid expert Dr Rae Duncan says Covid is not over and cases of long Covid are rising.

Clip 3 BBC Politics North:

Luke Akehurst MP says it’s “shocking” that #LongCovid services are being closed when ~2 million people live with the condition and about half consider themselves disabled. Covid is “not yesterday’s problem”, it is still causing events to be cancelled.

YouTube video by Broken Battery BBC Radio Sheffield | Fran Haddock on Long Covid & ME/CFS

Clip from BBC Radio Sheffield :

@franhaddock.bsky.social calls in to speak to Paulette Edwards about #LongCovid, #MECFS, post-exertional malaise, and why being “deconditioned” is not the cause of her condition. (10 mins) Aired yesterday.

youtu.be/uNbKpnxX3jU?...

Update:
Savannah self-discharged again & has been admitted to Royal Devon & Exeter (4hrs from London) which has a formal Severe ME pathway following the death of Maeve Boothby O’Neill.

Pain relief has been increased and care is described as kind and compassionate.

www.gofundme.com/f/severemerg...

Clip: Dr @binitakane.bsky.social explains how ME is an energy-limiting illness.

The hallmark symptom, Post-Exertional Malaise (PEM), means even normal activities can trigger a worsening of symptoms. Some of her patients have to choose between a shower or preparing a meal that day.