The Mayor of oslo.town @themayor

186 posts91 participants24 posts today

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 3m

Tom Kindlon @tomkindlon@disabled.social

7/
From "Shame, Psychology and ME" by Richard and Katharine Cheston

Comment: I believe there are elements of the NICE guidelines that can be useful for people with SEVERE ME

#MEcfs #CFS @mecfs

Coroner’s report: matters of concern
⦁ No specialist hospitals for patients with severe ME in UK.
⦁ No funding for the research and development of treatment of ME
⦁ Extremely limited training for Doctors on ME - especially severe ME.
⦁ NICE guideline on ME did not provide any guidance at how severe ME should be managed including guidance around tube feeding

**Tom Kindlon** @tomkindlon@disabled.social · 12m

12m

Tom Kindlon @tomkindlon@disabled.social

New from the CDC:

Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Diagnostic and Communication Case Study for Health Care Providers in Training

Free:
https://www.mededportal.org/doi/10.15766/mep_2374-8265.11507

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 57m

57m

Tom Kindlon @tomkindlon@disabled.social

From "Shame, Psychology and ME" by Richard and Katharine Cheston

#MEcfs #CFS @mecfs

Dr William Weir’s testimony
⦁ Maeve had previously privately consulted Dr William Weir. Three weeks before she died, Weir wrote to the RDE CEO criticising attitudes of some doctors and urging them to introduce total parenteral nutrition “I am not exaggerating the issue when I say this may well save Maeve’s life”
⦁ “it would appear a considerable portion of the staff at [the hospital], including some consultants, still hold onto the now outdated understanding that ME/CFS has psychological causes”.
⦁ He urged her to support Strain and to tackle the “dogma concerning the cause of ME/CFS that some of his colleagues are still perversely adherent to”.

**Tom Kindlon** @tomkindlon@disabled.social · 1h

Tom Kindlon @tomkindlon@disabled.social

Cartoon from 2004 I found when doing a clear out:

"Sodham Hall ME/CFS clinic. CBT & GET our speciality!"

It was drawn by Trish Campbell and I was given permission to use it at the time.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

People can feel free to do a alt text for this. I don't have time to do a proper one but lots of people are drawn struggling to exercise. It could be said that they look like they are being tortured.

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 1h

Tom Kindlon @tomkindlon@disabled.social

5/
From "Shame, Psychology and ME" by Richard and Katharine Cheston

#MEcfs #CFS @mecfs

Testimony of doctors who treated her
⦁ Lucy Shenton – GP - “Several doctors involved in her care stated they do not believe ME is a medical problem.”
⦁ Roderick Warren – RDE consultant - “I do not know what the cause of ME is. Therefore, I’m not able to say if it is or is not a physical condition. That isn’t at all the same as saying I believe it isn’t … I find the literature generally to be unclear. For me the focus needs to be on what management does a patient need who is suffering with that diagnosis.”
⦁ David Strain – RDE consultant “This is a disease that has been tremendously stigmatised … Even today there are people who have been through the historic medical schools that didn’t recognise this as a physical disease. That’s a travesty … This is a physical disease.”

**Bücher & Kunst** @KarinMuensterland@troet.cafe · 1h

Bücher & Kunst @KarinMuensterland@troet.cafe

Gestern fing es an, heute dann leider ein Crash trotz Pacings. Ich dachte schon, es ginge mal länger gut. #Mecfs

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 2h

Tom Kindlon @tomkindlon@disabled.social

From "Shame, Psychology and ME" by Richard and Katharine Cheston

#SevereME #MEcfs @mecfs

Maeve (in a letter written to her GP 4 months before she dies): “I don’t understand why the hospital didn’t do anything to help me when I went in. I am hungry. I want to eat … Please help me get enough food to live.”
Maeve’s mother: the consultant (for the 2nd admission) “was adamant she would not tube feed Maeve and told Maeve she would ‘feel much better if you gave your hair a wash’”
Maeve’s father: “Towards the end of Maeve’s life, in the last few days when she was dying, people in the NHS were refusing to give her palliative care. They questioned her need for palliative care, questioned whether she was properly ill … and we had to fight really hard at the last minute to get her palliative care, just to ease her pain, because doctors didn’t believe in ME”

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 2h

Tom Kindlon @tomkindlon@disabled.social

3/
From "Shame, Psychology and ME" by Richard and Katharine Cheston

#SevereME #MEcfs @mecfs

Maeve Boothby O’ Neill
⦁ Diagnosed with ME in 2011.
⦁ By 2019 she had become so severe that she was bedbound for 21 hours per day. Too weak physically to wash, eat or drink.
⦁ Three admissions to general hospital during 2021 to have a nasogastric tube. Doctors refused to do this until the third admission (to eating disorders ward) when her condition was so weak it was removed, and she was discharged
⦁ Died at home on 3rd October 2021 aged 27
⦁ Two-week inquest in August 2024
⦁ Verdict of death by natural causes

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 3h

Tom Kindlon @tomkindlon@disabled.social

2/
From "Shame, Psychology and ME" by Richard and Katharine Cheston

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

My daughter, Katharine, developed ME in 2008 aged 15
What I’d like to do today is to initiate a conversation about the way in which some psychologists talk about ME.
I am talking from my personal experience as Katharine’s father, rather than from a position of research or clinical expertise.
I also include some of Katharine’s reflections

**Tom Kindlon** @tomkindlon@disabled.social · 4h

Tom Kindlon @tomkindlon@disabled.social

Thread where I'm going to post some slides from this sympathetic February presentation "Shame, Psychology and ME"

https://uwe-repository.worktribe.com/output/13780159

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Professor of Dementia Research Richard Cheston Richard.Cheston@uwe.ac.uk
Professor in Mental Health (Dementia Care)

Katharine Cheston

Abstract
In 2008, when she was 15, Katharine Cheston became ill with Myalgic Encephalomyelitis or ME. Over the next decade and more Katharine, and ourselves as a family, encountered many different psychological ideas and therapies, often being offered by non-psychologists. One such belief system involves the constuction of ME as a psychiatric illness that is perpetuated by false illness beliefs and the avoidance of exercise.
This session is a personal reflection on this process, the role that shame played in our lives and the wider dearth of appropriate services for people with ME.

Presentation Conference Type Presentation / Talk
Conference Name Psychological Sciences Research Group meeting

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 7h

Tom Kindlon @tomkindlon@disabled.social

3/‬

‪"The short escapades of the summer and autumn of 2014 meant I took the energy I used to keep my house in order and put it elsewhere. But I couldn’t take that energy indefinitely, and even if I could have ignored our house chores forever, or hired help, I was still done for by the autumn of 2014 and in need of ample rest in order to return to my baseline."

@mecfs #mecfs

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 7h

Tom Kindlon @tomkindlon@disabled.social

‪2/‬

‪“And so, I repeated myself as I once again explained living with ME was and is living on a see-saw. I give energy to one thing and take it from another.”‬

‪#MyalgicEncephalomyelitis ‬
@mecfs #mecfs

**Tom Kindlon** @tomkindlon@disabled.social · 7h

Tom Kindlon @tomkindlon@disabled.social

A short blog post from a published Irish writer with ME where she bemoans having to explain that energy is limited in ME so if you do one thing, you have less energy for other things.

https://solongasicanbreathe.wordpress.com/2025/03/10/elastic-bands-evs-and-repetition/

#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Elastic Bands, EV’s and repetition
People will always believe in something, whether that something is true or untrue.

And as 2014 continued, Time became that untruth as I sat and smiled at that annoyingly repetitive question – the one most of you have been asked over and over: – “Are you not better yet?”

Grappling with the assumption of time and her mystery healing clock and grappling too at people’s inability to understand the limbo land of long term chronic illness, I tried to explain myself. Yet again!

**Tom Kindlon** @tomkindlon@disabled.social · 9h

Tom Kindlon @tomkindlon@disabled.social

"Chronic lung disease, high blood pressure, weakened immune system, chronic fatigue syndrome or #fibromyalgia (aOR = 2.20), & arthritis were associated with a higher odds of more severe Covid19 infection"

https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-025-22041-7

#MEcfs @mecfs @covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19
@longcovid
#LongCovid

**Tom Kindlon** @tomkindlon@disabled.social · 1d

Tom Kindlon @tomkindlon@disabled.social

A Living Memorial to Joan Livingston – 1954 - 2025

Full article:
https://www.massmecfs.org/newsletters/918-spotlight-joan-livingston-mar-25

Image from Massachusetts ME/CFS & FM Association March 2025 e-newsletter:

https://massmecfs.org/newsletters/919-2025-03-march-newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Spotlight: Joan Livingston
A Living Memorial to Joan Livingston – 1954 - 2025

This Memorial is not only a remembrance of Joan, but an inspiration for those of us who knew her well and for those who felt her spark in passing contact.

A major part of Joan’s adult life was spent helping and advocating for ME/CFS patients, through the Massachusetts ME/CFS & FM Association. For those who are more recently part of the Association and the patient community and did not know her, it would be true to say that her spirit and past work still lives in the life and work of MassME. Without the incredible work of Joan and many other volunteers who built and nurtured the Association in its earlier years, the Association might not have been able to continue or to make a difference in people's lives as it does today.

Click here to read Joan's memorial.

**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 1d

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

(VIC & NSW, Australia)
Donate a blood sample to the AusME Biobank
https://ausmeregistry.org/

From Emerge Australia e-newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Donate a blood sample to the AusME Biobank
Behind every data point, there's a person, a story, and a chance for a better tomorrow You hold the key to advancing medical research outcomes for ME/CFS and long COVID.

If you reside in VIC or NSW and have ME/CFS, long COVID, or are willing to donate blood as a healthy volunteer, find out how you can become an AusME Biobank blood donor via the button below or by emailing our AusME Manager information.ausme@emerge.org.au

JOIN THE AusME TODAY

**Tom Kindlon** @tomkindlon@disabled.social · 1d

Tom Kindlon @tomkindlon@disabled.social

From Iraq:

Increased galanin-galanin receptor 1 signaling, inflammation, and insulin resistance are associated with affective symptoms and chronic fatigue syndrome due to long COVID

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0316373

From the latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#MEcfs

PLOS ONE
Increased galanin-galanin receptor 1 signaling, inflammation, and insulin resistance are associated with affective symptoms and chronic fatigue syndrome due to long COVID — Wasim Talib Mahdi Al Masoodi et al.
"a sizable portion of the variation in the physioaffective phenome was accurately predicted by a combination of biomarkers, including GALGALR1 signaling, CRP, PGE2, and z PBT - z SpO2"

Replied in thread

**tj (i make it past the end)** @blackfinalboi@diaspora.im · 1d

tj (i make it past the end) @blackfinalboi@diaspora.im

the author of the article i shared above needs help!

Critical Healthcare Support for Victoria

https://www.gofundme.com/f/help-vs-medical-expenses

Venmo: itssvee

gofundme.comDonate to Critical Healthcare Support for Victoria, organized by Vee CopelandHello everyone, My name is Victoria and thank you for checking out my gofun… Vee Copeland needs your support for Critical Healthcare Support for Victoria

#BlackMutualAid #MutualAid #Disability

**Nyx Mir** @nyxmir@vis.social · 1d

Nyx Mir @nyxmir@vis.social

I've been following @jennylam on my personal acct for a while, and always appreciate what she brings to both The Art World and the Fediverse.

Today I'm really, deeply honored to share that work from @illmarks , my Visualizing Long Covid project, will be in Volume 2 of Laminator!

Beyond the honor of being amongst so many amazing international artists, I know every moment of representation for ppl w/ post-acute infection syndromes like #longcovid & #mecfs are solace to our communities.

Poster for "LAMINATOR Volume II"

"I'm going to be published in the second annual volume of Artists On the Lam's Zine!

More details at ArtistsOnTheLam.com/Zine

in the center a photo of a black silhouette on a manila bookmark, treading water amongst chopping and churning waves. These are mostly in cyan and pale blue, with highly detailed patterns in the water's waves and surfaces. The shadow of their form is visible under the water.

Replied in thread

**Garth Coghlan** @wildwoila@aus.social · 1d *

1d *

Garth Coghlan @wildwoila@aus.social

@futzle Mother Woila is a mountain in a remote & extremely wild part of Deua National Park in NSW. The navigation to get there is very challenging, through precipitous hill-spur country. I twice attempted the infamous Woila Circuit and failed both times, but fully intended to keep going back until I'd succeeded. Alas, #mecfs had other ideas, but I try to hold onto that wild version of myself.

Anyway, I desperately needed to replace my teenage username of StickyVelvet (I know ....), and WildWoila was a whole lot more palatable.

Which begs the question: what terrible internet handles do people have hidden in the closet?

#ExplainYourUsername #Bushwalking #Wilderness

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