Tom Kindlon

10 March 2026 Chronic fatigue over chronic fatigue reform 4 minute read Chronic Disease Political By Euan Kielly A parliament hearing has heard from ME/CFS advocates on where and how healthcare needs to step up to address the under-recognised field. Long covid was the focus for lawmakers, clinicians, researchers and people with lived experience at today’s annual parliamentary friends of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) gathering.

(Australia)
"Long covid was the focus for lawmakers, clinicians, researchers and people with lived experience at today’s annual parliamentary friends of ME/CFS gathering."

www.medicalrepublic.com.au/chronic-fati...

Sympathetic article

#LongCovid #PASC #PwLC #postcovid #postcovid19 #auscovid19

#MedSky this👇is what continues to happen to #pwME,
it's how the vast majority of Drs & HCPs respond to #pwME, this attitude has lead to the deaths of #pwME, it's how you broke our trust & why a huge number of us avoid seeing you when we need to.

#ME #MEAwareness

Or in my case “you have post viral fatigue syndrome” as the Dr stands there holding the door open and the look of ‘f’ck off wasting my time’. And that’s the extent of support the NHS has ever given me. This was a GP who I had a lot of respect for up until then.

i’ve had *mild* ME/CFS about 20 years and have had all these symptoms.

did you know how similar long covid is to ME/CFS?

#MaskUp #CovidIsntOver

George and his ME/CFS 3 panel cartoon of an individual at their doctor 1st panel: patient: I suffer fever, vertigo, cold extremities, insomnia, brain fog, shortness of breath, weakness, fatigue, noise and light sensitivity... 2nd panel: patient: ... tinnitus, IBS, muscle pain, migraines, sore throat, trouble swallowing, tender lymph nodes, food intolerances... 3rd panel: Dr: okay… I'm going to recommend medication for anxiety

🧵
A talented individual (WantedAlive) thought up these cartoons and employed Rick Menard to illustrate them.

Well done to them for this initiative. 👏👍

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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Charting the circulating proteome in ME/CFS using cross-system profiling to uncover mechanistic insights — August Hoel et al. "the serum proteome in ME/CFS reveals a distinct pattern characterized by reduced release of intracellular proteins and increased secretion of extracellular proteins, indicating widespread tissue involvement and disturbed systemic homeostasis." "The reduced release of intracellular skeletal muscle proteins appears to represent a distinct ME/CFS phenotype that is supported by our data."

From Norway

Charting the circulating proteome in ME/CFS using cross-system profiling to uncover mechanistic insights

www.cell.com/cell-reports...

Screenshot from Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Plasma proteomic profile reveals persistent immune activation in post-acute sequelae of SARS-CoV-2 infection — Fineschi et al. "our extended proteomic analysis shows that key proinflammatory cytokines characterizing the acute phase of SARS-CoV-2 infection remain dysregulated in individuals with PASC, even long after the initial infection." "This persistent immune perturbation suggests a failure of proper immune resolution that may not require detectable viral persistence in plasma"

From Sweden

Plasma proteomic profile reveals persistent immune activation in post-acute sequelae of SARS-CoV-2 infection

www.frontiersin.org/journals/imm...

Screenshot from Science for ME weekly update

#LongCovid #PASC #PwLC #postcovid #postcovid19

Post COVID-19 condition is associated with altered regional cerebral blood volume as revealed by dynamic susceptibility contrast MRI — MacIntosh et al. "The findings revealed a pattern of lower rCBV in the PCC group relative to controls in ROIs that have previously been reported in analogous structural and perfusion neuroimaging studies."

From Canada:

Post COVID-19 condition is associated with altered regional cerebral blood volume as revealed by dynamic susceptibility contrast MRI

www.frontiersin.org/journals/neu...

Screenshot from Science for ME weekly update

#LongCovid #NeuroPASC #COVIDBrain #PASC #PwLC #postcovid #postcovid19

HLTH Chat Podcast Episode 8: Treating ME and Long Covid with Dr Binita Kane @binitakane.bsky.social

m.youtube.com/watch?v=pk00...

Screenshot from Science for ME weekly update

#LongCovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Norwegian guidelines for chronic fatigue and ME/CFS Drafts for these guidelines were published last month by the Directorate of Health to big disappointment for being outdated. Three patient organisations have taken dissent. Patients are calling for a separate guideline for ME/CFS. Blog posts and opinion pieces on the guidelines are shared in the thread. The Norwegian ME Association has a survey, open until March 22nd, where patients with ME or Long Covid can give input for the association's response to the guidelines draft. David Tuller has written two articles summarising the issues: - Norway's Problematic Draft Guideline Combining Long-Term Fatigue and ME/CFS - More on Norway's Problematic Draft Guideline for "Long-Term Fatigue-including ME/CFS" Survey l Thread

Norwegian guidelines for chronic fatigue and ME/CFS

Survey:
www.me-foreningen.no/innspill-til...

Other links:
virology.ws/2026/03/02/t...

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

Screenshot from Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

UK Parliament Sharon Hodgson MP has been appointed as the new Minister for Public Health and Prevention Following Ashely Dalton’s resignation, Sharon Hodgson has been appointed as the replacement to this role in the Department of Health and Social Care. Sharon has previously taken part in the APPG on ME and has tabled written questions on ME/CFS. A video of one of these appearances in Parliament can be found below. Website | Video | Thread

Sharon Hodgson MP has been appointed as the new Minister for Public Health and Prevention

www.actionforme.org.uk/new-minister...

www.s4me.info/threads/brok...

Screenshot from Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

UK #ThereForMe Guest post from Tessa Munt MP The Liberal Democrat MP for Wells and Mendip Hills in Somerset and current chair of the APPG on ME covers the case for change for people with ME/CFS, the need for government action, and how people can get involved.

#ThereForMe @thereforme.bsky.social Guest post from Tessa Munt MP @tessamunt.bsky.social

www.thereforme.uk/p/the-case-f...

Screenshot from Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Screenshot of ME Association article/obituary on Robert Courtney

Remembering ME activist (& my friend) Robert "Bob" Courtney, who passed away on March 7, 2018

This is from the @meassociation.org.uk magazine

One can read about some of the specifics of Bob's work here: me-pedia.org/wiki/Robert_...

#MyalgicEncephalomyelitis #MEcfs #CFS #MyalgicE #PwME #ME

New Peer-Reviewed Study Confirms over 1.13 Million Canadians are Living with MCS A newly published peer-reviewed study in the International Journal of Environmental Research and Public Health confirms the sustained prevalence of Multiple Chemical Sensitivity (MCS) in Canada. Robins, Molot, and Peris (2026) analysed national data collected by Statistics Canada between 2000 and 2020 and found that over 1.13 million Canadians live with a diagnosis of MCS. Approximately 72% are women, underscoring the important gendered dimensions of this recognized disability. The analysis further shows that MCS prevalence increases with age for both sexes. Although women are diagnosed at nearly three times the rate of men overall, age-stratified findings indicate that males account for a notable share of diagnosed cases within younger age groups. This highlights the importance of early prevention and exposure reduction strategies. To read key findings and press release click here. Attributed quote: “This study confirms what our community has long known — multiple chemical sensitivity is measurable, documented, and nationally recognized. With over 1.13 million Canadians affected and more than two decades of federal data tracking the condition, MCS demands evidence-based policy, accommodation, and prevention strategies. Recognition must translate into real accessibility, including fragrance-free, lowest-VOC emissions and the use of least-toxic products, so that people living with MCS can participate fully and equally in society.” Rohini Peris, President & CEO Environmental Health Association of Canada (EHAC-ASEC);Environmental Health Association of Québec (ASEQ-EHAQ). Robins, S., Molot, J., & Peris, R. (2026). Prevalence of Multiple Chemical Sensitivity in Canada Between 2000 and 2020. International Journal of Environmental Research and Public Health, 23(2), 236. https://doi.org/10.3390/ijerph23020236

New Peer-Reviewed Study Confirms over 1.13 Million Canadians are Living with MCS

www.mdpi.com/1660-4601/23...

Screenshot from MCS-Aware March 2026 Newsletter

#MultipleChemicalSensitivity #MCS

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“(Contd) They protect capacity without requiring the body to justify itself. The environment does some of the work so the body doesn’t have to.”

#mecfs #longcovid #pwme #cfs

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“From an occupational therapy lens, these micro-adjustments alter the energy equation of the entire day. They reduce friction, lower cognitive load, and dial down sensory and autonomic demand in ways that don’t require motivation, explanation, or willpower. (contd)” #mecfs #longcovid

Our latest News in Brief summary has headlines and links to further reading for ME/CFS, Long Covid, and related news for the week of Mar. 2 - 8:

Topics:
News, advocacy, articles
Coming events
Research news and commentary
Published research

www.s4me.info/threads/news...

#MEcfs #LongCovid

I was nodding along to this article.

I was able to get out into the glorious sunshine yesterday and pot up some bulbs thanks to the many little energy-saving decisions I had made over the previous few days.

Those decisions don't make my life smaller, they let it expand.

RESILIENCE: The International Conference on Multiple Chemical Sensitivity (MCS) 2026

aseq-ehaq.ca/en/resilienc...

Organised by the Environmental Health Associations of Canada and Québec.

This follows similar conference held in 2025:
aseq-ehaq.ca/en/resilienc...

#MultipleChemicalSensitivity #MCS

Image of a brain Brain and muscle chemistry in myalgic encephalitis/chronic fatigue syndrome (ME/CFS) and long COVID: a 7T magnetic resonance spectroscopy study "The changes in lactate in ME/CFS are consistent with the presence of energetic stress and mitochondrial dysfunction. A reduction in total choline in long COVID is of interest in the context of the recently reported association between blood clots and 'brain fog', and earlier animal studies showing that choline might prevent intravascular coagulation. Importantly, differences in findings between ME/CFS and long COVID suggest that the underlying neurobiological mechanisms, while leading to similar clinical presentations, may differ." Read more here>>

UK research study

Brain and muscle chemistry in myalgic encephalitis/chronic fatigue syndrome (ME/CFS) and long COVID: a 7T magnetic resonance spectroscopy study

www.nature.com/articles/s41...

Screenshot from AMMES March 2026 newsletter

#MEcfs #LongCovid #CFS #PwME #COVIDBrain #NeuroPASC

Exactly this.

“What if the question isn’t, “How can I tolerate more?” but, “Where can I remove friction?”
What if progress isn’t measured by how much you push, but by how much strain you no longer have to carry?
What if sustainability (not endurance) is the metric that actually matters?”

The Quiet Work of Making Life Possible Why sustainability (not effort) is the foundation of meaningful life. Abby Dec 29, 2025 Here’s a thing that’s easy to miss: Small changes rarely make a scene. They don’t announce themselves. They don’t arrive with a before-and-after photo. They’re not marked as milestones. They don’t even feel especially satisfying at first. Sometimes they feel almost… disappointing. Too small. Too ordinary. Too quiet to matter. Easy to dismiss. Easy to forget. And yet (and this is the part I keep returning to gain and again) they’re often the exact changes that hold everything together. I’ve watched this pattern long enough that it’s hard to unsee. In work with people living with energy-limiting conditions, the moves that restore a sense of life aren’t dramatic. They’re precise. They’re humble. They tend to slip under the radar because they don’t look like progress the way we’ve been taught to recognize it.

No long list of tips in this particular blog post by this knowledgeable OT but I agree with the general points e.g. small changes in things like energy conservation and routines can make worthwhile differences.

onelifelivedwell.substack.com/p/the-quiet-...

#MEcfs #LongCovid #CFS #PwME #POTS

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My take

bsky.app/profile/tomk...

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"Honestly, as quickly as possible," Porzingis said. ‘Even if I am exhausted out there [on the basketball court], I want to still push myself. ...’”

A natural attitude for a high performance athlete. Unfortunately it’s risky if it is ME/CFS.

#MEcfs #CFS

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“Doctors told him his POTS was probably caused by the upper respiratory viral illness he contracted...He sat out 8 consecutive games, telling reporters after his return that he was still dealing with "lingering fatigue" because of a lasting problem they weren't able to identify yet”
#POTS #PwME

But when Porzingis addressed reporters afterward, before the fifth question, he let out a yawn. An uncontrollable, extended yawn. Porzingis apologized, as if to make sure he wasn't being perceived as rude. Then he yawned again, sending out a hidden reminder of the persistent exhaustion that is threatening to derail his NBA career: The 30-year-old former All-Star was diagnosed last year by Celtics doctors with postural orthostatic tachycardia syndrome (POTS), an autonomic condition that can dramatically increase heart rate and cause dizziness and fatigue. "I felt all right. Far from being in perfect shape," Porzingis said. "But I think for [the] first game back after a while, getting some energy back, feeling good. ... I think it's just a matter of time to get in a better rhythm." Three mornings later, Porzingis woke up sick in his team-provided San Francisco hotel room and called the training staff. He went from being the spotlight story of the ABC afternoon game against the Denver Nuggets to being so ill that he couldn't even come to the arena.

Long article on 'mysterious' illness of NBA's Kristaps Porzingis

www.espn.com/nba/story/_/...

Just parts on his health:
www.s4me.info/threads/well...

Viral onset plus these symptoms suggest ME/CFS as a big possibility. Best for his long term health I think to take an extended break

#CFS #MEcfs

Tomorrow is the last day you can submit input.
#LongCovid #SGB

1) 🇰🇷 A study from South-Korea shows that Metformin (the diabetes drug) and Ursodeoxycholic Acid (a bile acid) are not effective in Long Covid.

Most patients improved at lot, even those in the placebo group.

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