Nostr notes by Tom Kindlon

This was posted today by Daniel Missailidis, PhD, a sympathetic ...

2026-05-01T13:39:23Z

This was posted today by Daniel Missailidis, PhD, a sympathetic researcher.
https://redcap.latrobe.edu.au/redcap/surveys/?s=XHX3CREK8Y49NTDM

He has added in other posts:

- it just requires one blood draw and a short survey
- We need ~25 more women with LC and ~5 more women with ME/CFS
- Healthy women also needed.

#MEcfs #LongCovid ME/CFS (npub1m6m…xked)
Long Covid (npub17l9…q7gy) #auscovid19

ME Advocates Ireland - advice for Occupational Therapists ...

2026-04-06T00:53:50Z

ME Advocates Ireland - advice for Occupational Therapists

https://meadvocatesireland.blogspot.com/2026/01/occupational-therapy-care-working.html

Screenshot from latest Chronic Living Therapy newsletter

#MyalgicEncephalomyelitis #MEcfs #PwME #ME #MyalgicE
ME/CFS (npub1m6m…xked)

Two months to go. A great opportunity to raise awareness and ...

2026-03-12T18:34:48Z

Two months to go.

A great opportunity to raise awareness and understanding. Also the day (and the associated awareness week/month) can be used for lobbying, fundraising, and other forms of activism.

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome ME/CFS (npub1m6m…xked)

News Release 2-Mar-2026 "Study identifies molecular cause of ...

2026-03-03T15:06:42Z

News Release 2-Mar-2026
"Study identifies molecular cause of taste loss after COVID"

"Research links persistent loss of sweet, bitter and umami taste to reduced levels of key taste-cell protein"

https://www.eurekalert.org/news-releases/1118387

Hashtags:
Long Covid (npub17l9…q7gy)
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

Nostr event nevent1qqs82nvqplt53ps0p6z4wznkyur3x2djuc0a5ayaxn7sked0vtc5g6qzyzmwhjsa8vkjcsmd0sjemazc2j2zrxfnd8jk7m45ca063jv599ey5ndslsw

2026-01-28T01:53:25Z

From:
https://bsky.app/profile/chromatowski.bsky.social/post/3liuymbcslc25

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
ME/CFS (npub1m6m…xked)

For people looking to cut down on their washing, this ...

2026-01-11T12:02:37Z

For people looking to cut down on their washing, this microbiologist argues convincingly it’s best not to wear your socks for more than one day:

“Can you wear the same pair of socks more than once?”

https://theconversation.com/can-you-wear-the-same-pair-of-socks-more-than-once-270615

#spoonie #spoonies

ME Research UK is pleased to announce an open call for ...

2025-11-25T15:25:19Z

ME Research UK is pleased to announce an open call for applications for PhD-level research funding, and we welcome proposals from researchers wishing to investigate the causes, consequences and treatment of ME/CFS. https://meres.uk/apply

#MEcfs #CFS #PwME ME/CFS (npub1m6m…xked)

From Germany: Transcriptome analysis of classical blood cells ...

2025-11-11T01:42:12Z

From Germany:

Transcriptome analysis of classical blood cells reveals down-regulation of proinflammatory genes in the classical monocytes of Long-COVID patients

https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2025.1710783/abstract

Screenshot from latest Science for ME weekly update

Long Covid (npub17l9…q7gy)
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

" @npub1tfw…07rw spoke with twelve people who went to ...

2025-09-22T00:47:06Z

" The Sick Times (npub1tfw…07rw) spoke with twelve people who went to rehabilitation clinics in Germany...patients feel pressured to partake in exercise-based therapies that can make their disease worse."

https://thesicktimes.org/2025/09/16/germanys-reha-clinics-arent-set-up-for-long-covid-and-patients-are-reporting-harm/

Screenshot from Science for ME weekly update

Long Covid (npub17l9…q7gy)
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID
ME/CFS (npub1m6m…xked)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

2/ "food insecurity was associated with increased odds of ...

2025-09-14T15:08:35Z

In reply to nevent1q…nwjm
_________________________

2/

"food insecurity was associated with increased odds of having current long COVID and with a reduced likelihood of recovery among those affected."

#LongCovid #PASC
Long Covid (npub17l9…q7gy)

From the US: "These findings suggest food insecurity may be ...

2025-09-10T13:00:18Z

From the US:
"These findings suggest food insecurity may be an important & modifiable risk factor for long COVID & strengthening access to programs like SNAP, raising awareness, and simplifying enrollment could help reduce the health burden of #longCOVID"

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2838652

Long Covid (npub17l9…q7gy)
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2

From ME Research UK: A small study has investigated whether ...

2025-09-08T18:56:24Z

From ME Research UK:

A small study has investigated whether pyridostigmine might increase hand grip strength in people with ME/CFS. Interestingly, the research team also considered whether the drug had an impact on orthostatic intolerance.

Find out more: https://bit.ly/3HMGFBx

#MEcfs #PwME #CFS

New UK research: Mitochondrial function is impaired in #longCOVID ...

2025-08-17T20:59:52Z

New UK research:

Mitochondrial function is impaired in #longCOVID patients

https://www.tandfonline.com/doi/full/10.1080/07853890.2025.2528167

"Correlations were observed between mitochondrial function and autonomic health, quality of life & time from index infection. Sex-specific differences were also observed”

longcovid group (npub10ng…m7ge)
#PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
covid19 group (npub1ezt…4taf) #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 #CovidIsNotOver #auscovid19 AusCOVID19 group (npub15gr…ztdn)

New US press release: Risk of #longCOVID increases with social ...

2025-07-29T13:22:31Z

New US press release:

Risk of #longCOVID increases with social and economic hardship: investigators led a nationwide study that found that financial hardship, food insecurity, lack of healthcare access, & other social risk factors are linked to higher risks of long #COVID

https://www.eurekalert.org/news-releases/1092743

Hashtags:
longcovid group (npub10ng…m7ge) #PASC #PwLC #postcovid #postcovid19 #Covidlonghaulers #PostCovidSyndrome #COVIDBrain
covid19 group (npub1ezt…4taf) #Coronavirus
#COVID19 #COVID #COVIDー19 #SARSCoV2 [@novid@chirp.social](https://chirp.social/@novid ) #novid novid group (npub198w…h7mq)
AusCOVID19 group (npub15gr…ztdn)

"Emergency departments aren’t trained for Long COVID [& ...

2025-06-13T22:19:09Z

"Emergency departments aren’t trained for Long COVID [& ME/CFS] — and patients are paying the price" by The Sick Times (npub1tfw…07rw)

https://thesicktimes.org/2025/06/02/emergency-departments-arent-trained-for-long-covid-and-patients-are-paying-the-price/

Among other things, recommends more medical education for healthcare staff in emergency rooms & elsewhere, plus better access to telehealth

MECFS group (npub1gxp…cjhq)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME longcovid group (npub10ng…m7ge)
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

1/

Going to the Doctor When You Have a Chronic Illness Hashtags: ...

2025-06-04T17:30:22Z

Going to the Doctor When You Have a Chronic Illness

Hashtags:
longcovid group (npub10ng…m7ge)
#LongCovid
#chronicillness #ChronicallyIll #hiddenillness
#invisibleillness ChronicIllness group (npub1er2…nz37)
spoonies group (npub15rc…ed38)
Fibromyalgia group (npub1xw3…cacd)
#Fibromyalgia #Fibro #FMS #FM #IBS ibs group (npub1yks…w4lw) #PosturalOrthostaticTachycardiaSyndrome #POTS pots group (npub1c76…gc5u) MECFS group (npub1gxp…cjhq)
#MEcfs

From Germany: Abnormal Coronary Vascular Response in Patients ...

2025-04-15T01:42:32Z

From Germany:

Abnormal Coronary Vascular Response in Patients with #LongCOVID Syndrome – a Case-Control Study Using Oxygenation-Sensitive Cardiovascular Magnetic Resonance

https://www.sciencedirect.com/science/article/pii/S1097664725000523

Image is from latest Science for ME weekly update

Hashtags:
longcovid group (npub10ng…m7ge)
#PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

covid19 group (npub1ezt…4taf) #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #CovidIsNotOver
AusCOVID19 group (npub15gr…ztdn) #auscovid19

1/

From ME Research UK: Second place in ME Research UK's ...

2025-04-14T14:53:16Z

From ME Research UK:

Second place in ME Research UK's Founders' Science Writing Award went to Krista Clarke, who is a postdoctoral research fellow at the University of Surrey. Here is Krista's entry on the development of quantitative diagnostic biomarkers for ME/CFS: https://tinyurl.com/38455t5u

#MEcfs MECFS group (npub1gxp…cjhq)

"Exercise Actually Makes Chronic Fatigue Syndrome Worse" ...

2025-04-13T00:23:40Z

"Exercise Actually Makes Chronic Fatigue Syndrome Worse"

https://www.youtube.com/watch?v=wxSwYUennBA

Image is from April 2025 AMMES Newsletter

MECFS group (npub1gxp…cjhq)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

(Australia) New post today on NCNED's Facebook page looking ...

2025-03-13T01:48:41Z

(Australia)
New post today on NCNED's Facebook page looking for participants for this trial:
𝗟𝗼𝘄-𝗗𝗼𝘀𝗲 𝗡𝗮𝗹𝘁𝗿𝗲𝘅𝗼𝗻𝗲 𝗖𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗧𝗿𝗶𝗮𝗹 𝗳𝗼𝗿 𝗹𝗼𝗻𝗴 𝗖𝗢𝗩𝗜𝗗

People can participate remotely without attending trial site

longcovid group (npub10ng…m7ge)
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
AusCOVID19 group (npub15gr…ztdn) #auscovid19

4/ “The consequences are staggering: (see image)” #CFSME ...

2025-03-08T23:50:52Z

In reply to nevent1q…8uzj
_________________________

4/

“The consequences are staggering: (see image)”
#CFSME #MEcfs
MECFS group (npub1gxp…cjhq)

3/ “Many [with ME/CFS] experience medical gaslighting, ...

2025-03-08T22:58:28Z

In reply to nevent1q…avnq
_________________________

3/

“Many [with ME/CFS] experience medical gaslighting, misdiagnoses, and treatments that fail to account for the disease’s hallmark symptom: post-exertional malaise (PEM)—where even minor exertion can lead to debilitating symptoms and functional decline.”

#MECFS
MECFS group (npub1gxp…cjhq)

2/ “Despite its widespread impact, up to 90% of people with ...

2025-03-08T22:41:25Z

In reply to nevent1q…uz9a
_________________________

2/

“Despite its widespread impact, up to 90% of people with ME/CFS remain undiagnosed, often after years of searching for answers.”

#PwME #ChronicFatigueSyndrome
#mecfs MECFS group (npub1gxp…cjhq)

🧵 "Far From Rare: A Common Disease Hidden in Plain Sight: ...

2025-03-08T18:38:00Z

🧵
"Far From Rare: A Common Disease Hidden in Plain Sight: Why ME/CFS Needs to be Recognized Now"

https://batemanhornecenter.org/a-common-disease-hidden-in-plain-sight/

Comment: While there is possibly nothing new here for many of us, I think it does summarise a lot of the important issues in the field

MECFS group (npub1gxp…cjhq)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

1/

"Most participants grieved for lost hobbies, abilities and ...

2025-02-18T00:07:28Z

"Most participants grieved for lost hobbies, abilities and opportunities and most participants spoke about inconsistent, fluctuating educational support for their ME/CFS needs"

https://research.manchester.ac.uk/en/studentTheses/what-is-the-psychological-and-educational-impact-of-being-an-emer

Screenshot from latest Science for ME weekly update

MECFS group (npub1gxp…cjhq)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

2/ Table 1. Never-words, their impact, and suggested alternatives ...

2025-02-14T19:40:18Z

In reply to nevent1q…emua
_________________________

2/

Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

https://www.mdpi.com/1660-4601/22/2/275

#LongCovid #MEcfs MECFS group (npub1gxp…cjhq) longcovid group (npub10ng…m7ge) ChronicIllness group (npub1er2…nz37)
spoonies group (npub15rc…ed38)
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

🧵 Unusual but sympathetic paper: Language Matters: What Not to ...

2025-02-14T18:12:01Z

🧵
Unusual but sympathetic paper:

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

https://www.mdpi.com/1660-4601/22/2/275

MECFS group (npub1gxp…cjhq)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME longcovid group (npub10ng…m7ge)
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

1/

From the Solve ME/CFS Initiative People w/ #LongCovid may ...

2025-01-28T14:34:15Z

From the Solve ME/CFS Initiative

People w/ #LongCovid may participate in a new clinical trial testing whether the drug baricitinib improves neurocognitive function & other functions diminished by Long Covid. Learn more about the trial led by Dr. Wesley Ely of
the Vanderbilt University Medical Center here:
https://ow.ly/paS250UOeWv

longcovid group (npub10ng…m7ge)
#PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
covid19 group (npub1ezt…4taf) #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2

New: Digital health app data reveals an effect of ovarian ...

2025-01-27T18:01:02Z

New:
Digital health app data reveals an effect of ovarian hormones on long COVID and myalgic encephalomyelitis symptoms

https://www.medrxiv.org/content/10.1101/2025.01.24.25321092v1

"Menstruation is associated with worsened symptoms in long COVID and ME/CFS"

MECFS group (npub1gxp…cjhq)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE Hashtags:
longcovid group (npub10ng…m7ge)
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

Unfortunately for some people with mobility issues, problems ...

2024-12-14T22:36:47Z

Unfortunately for some people with mobility issues, problems being upright (#OrthostaticIntolerance) mean they can't use traditional #wheelchairs or if they do, they can't be upright for long. This looks a interesting idea!

Not sure the context!

I found it here:
https://www.tumblr.com/mathew/765339413020622848?source=share

ChronicIllness group (npub1er2…nz37)
spoonies group (npub15rc…ed38)
Disability group (npub13wl…tq5r)
#Disability #Spoonie #MEcfs #Bedbound #SevereME SevereME group (npub1p6t…9u8p)
#SevereME
longcovid group (npub10ng…m7ge)
#LongCovid #dysautonomia dysautonomia group (npub18s8…mvrq) #POTS pots group (npub1c76…gc5u)
#homebound
#housebound
#Disabled

On its 13-year anniversary, just plugging my paper, ...

2024-12-09T00:37:03Z

On its 13-year anniversary, just plugging my paper, "Reporting of Harms Associated with #GradedExerciseTherapy and #CognitiveBehaviouralTherapy in #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome

Points raised are still very relevant now; if graded exercise/activity approaches are seen as safe, it's quite possible pressure could be put on some patients to undertake them.

https://drive.google.com/drive/folders/1vzCvi86gv-aManb9wywg-mJYKE9sjjky

#MEcfs #CFS #MyalgicE #PwME #ME MECFS group (npub1gxp…cjhq) #CBT #GradedExercise longcovid group (npub10ng…m7ge)
#LongCovid

Congratulations to Mark Vink on his new paper 👏 Using Exercise ...

2024-10-28T15:14:24Z

Congratulations to Mark Vink on his new paper 👏

Using Exercise Therapy for #LongCOVID Without Screening for Post-Exertional Symptom Exacerbation Potentially Increases the Risks for Patients Who Suffer from it: A Reanalysis of 3 Systematic Reviews

https://crimsonpublishers.com/rism/pdf/RISM.000748.pdf

Hashtags:
longcovid group (npub10ng…m7ge)
#PwLC #postcovid #postcovid19 #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
covid19 group (npub1ezt…4taf) #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2
AusCOVID19 group (npub15gr…ztdn)
#PESE #PostExertionalMalaise #PEM

7/ Simon McGrath’s “ME has cost so much, he told me: It’s ...

2024-10-23T21:20:45Z

In reply to nevent1q…9ma5
_________________________

7/

Simon McGrath’s “ME has cost so much, he told me:

It’s so isolating and there’s so much loss. I got ill in the prime of life. It cost me relationships, my social life, my career, the chance of a family, the chance to contribute. Everything. Plenty of people seem to think it’s a lifestyle choice. Nobody would choose this.”
MECFS group (npub1gxp…cjhq) #mecfs

6/ “ME exiles people from their family, friends, and hoped-for ...

2024-10-23T19:55:24Z

In reply to nevent1q…3942
_________________________

6/
“ME exiles people from their family, friends, and hoped-for futures. For most, this banishment is for life because nine in ten will never recover, and also because we expend too little effort to end this wicked disease.

That’s the irony – it’s society’s lack of effort to understand this illness and its treatment; our societal inertia; our failure to accept patients’ symptoms that perpetuate their exile.”

#MEcfs #PwME
MECFS group (npub1gxp…cjhq)

5/ Simon McGrath, a close friend of mine who has lived with ME ...

2024-10-23T18:46:21Z

In reply to nevent1q…myu9
_________________________

5/

Simon McGrath, a close friend of mine who has lived with ME and written about it for 20 years, tells me

I never know how much it is safe for me to do. It’s like I’m surrounded by an electric fence that will trigger a bad day if I touch it. But the fence is invisible, and moves every day.

MECFS group (npub1gxp…cjhq) #MEcfs #PwME

4/ “A brief conversation with a friend, or washing their hair, ...

2024-10-23T17:06:19Z

In reply to nevent1q…5ap3
_________________________

4/
“A brief conversation with a friend, or washing their hair, or a sudden movement causes their symptoms to flare. This intensifies a fatigue that sleep cannot alleviate, and heightens their muscle or joint pain, headaches, or sensitivities to food, light or sound.”
#MEcfs #PwME
MECFS group (npub1gxp…cjhq)

3/ “some lie still in their darkened rooms, masks on to protect ...

2024-10-23T15:54:21Z

In reply to nevent1q…z2zu
_________________________

3/

“some lie still in their darkened rooms, masks on to protect them from their light sensitivity, keeping within their limited energy level, unable to tolerate sound, food and touch – lives spent in the shadows, barely lived.”

#MEcfs #CFS #PwME
MECFS group (npub1gxp…cjhq)

2/ “Worse, when we don’t ignore them, we blame them, telling ...

2024-10-23T15:26:25Z

In reply to nevent1q…2gfp
_________________________

2/
“Worse, when we don’t ignore them, we blame them, telling them that they are all free to rise from their beds and wheelchairs, to walk away from the city. Doctors tell them they can free themselves of the disease by changing their belief systems. Make the effort, they say, and you will regain your health and previous lives.”

MECFS group (npub1gxp…cjhq) #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

🧵 "Ignored, blamed, & sometimes left to die – a ...

2024-10-23T15:19:34Z

🧵
"Ignored, blamed, & sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal"

https://theconversation.com/ignored-blamed-and-sometimes-left-to-die-a-leading-expert-in-me-explains-the-origins-of-a-modern-medical-scandal-241149

There's an audio version of this long but highly recommended article at link

This is a thread with some extracts

#MEcfs #CFS #pwME MECFS group (npub1gxp…cjhq)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
1/

I'm a bit late reading this (ironically I've been busy ...

2024-10-21T19:05:59Z

I'm a bit late reading this (ironically I've been busy organising 6 talks by Dr Tuller who is mentioned) but great to see this in the Guardian. For many years it was tough trying to highlight/challenge CBT/GET school misrepresentations

https://www.theguardian.com/commentisfree/2024/oct/18/maeve-bothby-oneill-me-chronic-fatigue-syndrome

#MEcfs #CFS #PwME MECFS group (npub1gxp…cjhq)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

New interesting UK #longCOVID study: Physical, cognitive, and ...

2024-10-19T20:47:39Z

New interesting UK #longCOVID study:

Physical, cognitive, and social triggers of symptom fluctuations in people living with long COVID

https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(24)00249-7/fulltext

"Cognitive, social, self-care and physical activities all triggered increased severity across every symptom"

Hashtags:
longcovid group (npub10ng…m7ge)
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
#PostExertionalMalaise
MECFS group (npub1gxp…cjhq)
#MyalgicEncephalomyelitis #PEM #MEcfs #CFS #PwME

1/

ME Research UK: The Autumn 2024 issue of Breakthrough magazine is ...

2024-10-14T19:48:05Z

ME Research UK:

The Autumn 2024 issue of Breakthrough magazine is now available online. This issue includes a look at two newly funded research projects on microclots and neurocognitive impairment, an article from Cort Johnson on severe ME/CFS, an interview with Tina Katsaros from La Trobe University, and much more.

Read it here:
https://www.meresearch.org.uk/research/breakthrough-magazine/

MECFS group (npub1gxp…cjhq)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

5/ [Person with ME] “‘says many people are stuck in the past, ...

2024-10-13T16:47:42Z

In reply to nevent1q…3tja
_________________________

5/

[Person with ME] “‘says many people are stuck in the past, believing that the condition is purely psychological.

‘It's the stigma that we're all lazy and we just need to exercise ourselves back to wellness that has stopped us getting the help we need’"

#PwME #MEcfs
MECFS group (npub1gxp…cjhq)

4/ “During the inquest into Maeve's death, the coroner ...

2024-10-13T16:28:13Z

In reply to nevent1q…t4sf
_________________________

4/

“During the inquest into Maeve's death, the coroner Deborah Archer said it became clear to her that there were no specialist hospital or hospices, beds, wards or other health care provision in England for patients with severe ME”

#SevereME #SevereCFS #SevereMECFS
MECFS group (npub1gxp…cjhq) #mecfs

3/ “People with severe ME can be in constant pain, have ...

2024-10-13T15:34:48Z

In reply to nevent1q…ln6u
_________________________

3/

“People with severe ME can be in constant pain, have hypersensitivity to touch and light, feel extremely weak and sometimes have difficulty speaking or swallowing. There are many different symptoms which cause significant disruption to everyday life”

#SevereME #PwME
MECFS group (npub1gxp…cjhq) #mecfs

‪2/‬ ‪“Maeve Boothby-O'Neill's final days were ...

2024-10-13T15:18:50Z

In reply to nevent1q…c8n0
_________________________

‪2/‬

‪“Maeve Boothby-O'Neill's final days were harrowing. The 27-year-old was confined to bed all day, unable to chew food and no longer able to sit up - she was severely ill with myalgic encephalomyelitis, or ME, and as a consequence severely malnourished”‬

‪#SevereMEcfs #MEcfs‬
MECFS group (npub1gxp…cjhq)

🧵 Sympathetic BBC article on severe ME: 'I'm too tired ...

2024-10-13T15:05:54Z

🧵
Sympathetic BBC article on severe ME:

'I'm too tired to chew food but still can't get care for my ME'

https://www.bbc.com/news/articles/cn03pxk1g4xo

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME MECFS group (npub1gxp…cjhq)

1/

#chronicillness #Spoonie #MEcfs #Spoonie @npub1gxp…cjhq ...

2024-10-11T12:22:43Z

#chronicillness #Spoonie
#MEcfs #Spoonie MECFS group (npub1gxp…cjhq) longcovid group (npub10ng…m7ge) ChronicIllness group (npub1er2…nz37)
spoonies group (npub15rc…ed38)
Disability group (npub13wl…tq5r)

"Neurasthenia: An obsolete (and sexist) medical condition, ...

2024-09-21T20:00:33Z

"Neurasthenia: An obsolete (and sexist) medical condition, and a couple of side-notes in the early history of ME/CFS" (20 September) by K. Johnstone

https://mecfs.substack.com/p/neurasthenia

#MEcfs #CFS #PwME
MECFS group (npub1gxp…cjhq)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

The impact of ME/CFS versus funding Illnesses listed on the ...

2024-09-20T20:35:24Z

The impact of ME/CFS versus funding

Illnesses listed on the bottom if you can't see it:

Sickle Cell Disease, Brain Cancer, Parkinson's, Multiple Sclerosis, HIV/AIDS, ME/CFS.

From Jeffrey Tran's video (warning: is a bit noisy) https://www.tiktok.com/@poisedleft/video/7414665603140668702

#MEcfs #CFS #PwME MECFS group (npub1gxp…cjhq)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

2/ Press release: "COVID may trigger chronic fatigue ...

2024-09-19T11:34:41Z

In reply to nevent1q…y85g
_________________________

2/
Press release:
"COVID may trigger chronic fatigue syndrome"

https://divisionofresearch.kaiserpermanente.org/blog/2024/09/18/covid-may-trigger-chronic-fatigue-syndrome/

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
longcovid group (npub10ng…m7ge) MECFS group (npub1gxp…cjhq)

New US research: Impact of COVID-19 on #MyalgicEncephalomyelitis ...

2024-09-19T11:25:46Z

New US research:

Impact of COVID-19 on #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome-like illness prevalence: A cross-sectional survey

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0309810

#MEcfs #CFS #PwME longcovid group (npub10ng…m7ge)
#LongCovid #PwLC #postcovid MECFS group (npub1gxp…cjhq)

1/

Cases of Long Covid still growing, German health minister says ...

2024-09-18T14:52:33Z

Cases of Long Covid still growing, German health minister says

(Has some references to ME/CFS)

https://www.yahoo.com/news/cases-long-covid-still-growing-151626706.html

=============
Hashtags:
longcovid group (npub10ng…m7ge)
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
covid19 group (npub1ezt…4taf) #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 [@novid@chirp.social](https://chirp.social/@novid ) #novid novid group (npub198w…h7mq) #CovidIsNotOver
AusCOVID19 group (npub15gr…ztdn) #auscovid19
MECFS group (npub1gxp…cjhq)

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME [@mecfs_de](https://a.gup.pe/u/mecfs_de )

ME Research UK: Yesterday, BBC Breakfast included a segment on ...

2024-08-28T22:09:31Z

ME Research UK:
Yesterday, BBC Breakfast included a segment on ME/CFS.

Presenters heard from Karen Hargrave, Oonagh Cousins, Dr Binita Kane, and Dr William Weir.

Read more: https://tinyurl.com/3f68je9y

Watch the BBC Breakfast segment here: https://tinyurl.com/3cnkab95

Hashtags:
longcovid group (npub10ng…m7ge)
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#postcovid19 MECFS group (npub1gxp…cjhq)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

The AusME Biobank relies on your blood to further its mission to ...

2024-08-16T10:45:28Z

The AusME Biobank relies on your blood to further its mission to advance medical research outcomes for ME/CFS and #LongCOVID! If you reside in Victoria or NSW and have ME/CFS or are willing to donate blood as a healthy volunteer, find out how you can become an AusME Biobank blood donor by visiting: https://www.ausmeregistry.org

MECFS group (npub1gxp…cjhq)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
longcovid group (npub10ng…m7ge)
AusCOVID19 group (npub15gr…ztdn) #auscovid19 #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #PASC

Pre-chopped fruits and veggies make it possible for so many ...

2024-08-14T17:57:45Z

Pre-chopped fruits and veggies make it possible for so many people with various disabilities to prepare healthy meals and maintain their energy.

#disabled #spoonie #chronicillness #mecfs #longcovid disabled group (npub1wnz…smx0) spoonies group (npub15rc…ed38) ChronicIllness group (npub1er2…nz37) MECFS group (npub1gxp…cjhq) longcovid group (npub10ng…m7ge)