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tomkindlon.bsky.social
Tom Kindlon
@tomkindlon.bsky.social
Children and young people with severe or very severe ME: ‘Take Home’ Messages

From: "Myalgic Encephalomyelitis in Childhood: How the Paediatrician Can Help" by Nigel Speight

1drv.ms/b/c/94454629...

#SevereME #VerySevereME #MEcfs #CFS #PwME
Children and young people with severe or very severe ME ≈≈≈ ‘Take Home’ Messages ≈≈≈ • Severe ME constitutes a major challenge for both patient and doctor. • Mismanagement in the form of “activation regimes” can result in per-manent harm or even death of the patient. • The patient deserves the total commitment of one doctor, who is willing to visit at home on a regular basis. • Referral to a psychiatrist who does not believe in ME/CFS can be harmful. • The patient should be protected from sensory overload. • The doctor should resist the temptation to over-investigate, or in-volve too many other professionals. • Nursing at home is usually far preferable to admission to a busy gen-eral hospital. • Tube feeding is indicated when the patient has problems with eating and drinking. • Urinary catheterisation may be helpful in reducing the stress of hav-ing to micturate. • Symptomatic treatment for pain and sleep problems is worthwhile. • Full recovery is possible, but by no means guaranteed. • There is a need to improve both undergraduate and postgraduate medical training in this area. • There is a need to provide greater resources for the patient popula-tion affected. FROM: Speight, Nigel. ‘Severe ME in Children’ Healthcare, vol. 8, no. 3, July 2020, 211. https://doi.org/10.3390/healthcare8030211
October 3, 2025 at 11:53 AM Everybody can reply
5 reposts 10 likes 1 saves
5 10
verhac.bsky.social
Verena Hackl
@verhac.bsky.social
Aber hallo. 👀

#MECFS #SevereME #VerySevereME

📌📌📌
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Oct 1
Exciting to see this 🔥

Specialised care for severely affected ME/CFS patients

Free:
www.tandfonline.com/doi/full/10....

Would be great to have such facilities in countries around the world. Approach is very different from the (inappropriate/dangerous) rehab/BPS approach

#MEcfs #SevereME #PwME
ABSTRACTIntroduction: A specialised care unit for severely and very severelyill ME/CFS patients opened in 2021. The results from the first 3 yearsare reported.Methods: People with ME/CFS who were diagnosed according tothe Canadian Consensus Criteria, who are aged 18 or above withsevere or very severe ME/CFS according to the UK NICEguidelines, are eligible to stay at Røysumtunet. The study designis a retrospective review of medical records.Results: Between June 2021 and June 2024, 24 ME/CFS patients, 20women and 4 men with a confirmed diagnosis of ME, wereadmitted to the unit for stays of at least 3 months. Seventeenwere very severely affected and 7 were severely affected. Agesranged from 18 to 68 years, with mean (SD) 37.5 (12.8) years.Seven patients showed significant improvement (p < 0.01), andfive others showed some improvement. In total 50% improved (p< 0.01). Patients who improved were borderline significantlyyounger than those who did not, with a mean age of 30.3 (SD12.6) years compared to 39.8 (SD 11.8) years (p = 0.06). The meanduration of disease was 2.3 (1.3) years for those who improvedversus 6.7 (3.9) years for those who did not improve (p < 0.05).Conclusion: This is the first report of a specialised care unit for themost severely ill ME/CFS patients. Fifty per cent of patients showedsignificant or partial improvement. The mechanisms behind theseimprovements are discussed but require further exploration infuture studies.
October 1, 2025 at 7:12 PM Everybody can reply
3 reposts 11 likes 2 saves
3 11
tomkindlon.bsky.social
Tom Kindlon
@tomkindlon.bsky.social
‪2/‬
‪“These results indicate that it may be beneficial for severely and very severely affected ME/CFS patients to be cared for in an environment where they are met with respect, understanding with the aim to reduce PEM as much as possible.”‬

‪# #VerySevereME‬ #MEcfs #CFS #PwME #SevereMEcfs
October 1, 2025 at 7:26 PM Everybody can reply
6 reposts 28 likes
1 6 28
medocspsytheras.bsky.social
MissingDOCTORSandPSYCHOTHERAPISTS
@medocspsytheras.bsky.social
Was Betroffene brauchen, ist Rückhalt, Anerkennung, biomedizinische Forschung, aufsuchende Versorgung und ein Umfeld, das aktiv hilft, zuhört, glaubt und trägt.
Schaut hin!
#severeME
#verysevereME
#Suizidprävention
#TagDerSuizidprävention
#LearnAboutME
#MECFS
3/3
September 10, 2025 at 6:28 PM Everybody can reply
5 reposts 21 likes
1 5 21
poetryfriend.bsky.social
Emily Pinkerton ♿️
@poetryfriend.bsky.social
Thank you for sharing this! Gonna try to get my cardio to do the NASA Lean Test instead bc I have #VerySevereME
April 8, 2025 at 6:15 PM Everybody can reply
1 likes
1
tomkindlon.bsky.social
Tom Kindlon
@tomkindlon.bsky.social
"Currently in the UK, patients with severe ME who become unable to eat are routinely denied tube feeding and left to starve."

mecfs.substack.com/p/the-need-f...

Tragically, I'd say such patients are vulnerable in many other countries also

#SevereME #VerySevereME #MEcfs #CFS #PwME
The need for an NHS protocol to combat medical neglect of patients with severe ME/CFS K. JOHNSTONE FEB 23, 2024 This is based on a story pitch that didn’t get picked up - there’s nothing new here, but I put some effort into laying this out in a clear and understandable way, and I thought it was worth posting. Currently in the UK, patients with severe ME who become unable to eat are routinely denied tube feeding and left to starve. Patients may lose the ability to eat because they become too weak to chew and/or to swallow, or because they have very severe gastrointestinal problems. These problems are explored in detail in the report ‘Life-Threatening Malnutrition in Very Severe ME/CFS’. There are no doctors with specialist knowledge of ME working in NHS hospitals.
February 24, 2024 at 8:56 PM Everybody can reply
6 reposts 13 likes
6 13
tomkindlon.bsky.social
Tom Kindlon
@tomkindlon.bsky.social
On #SevereMEday (Aug 8), I remember my friend Ruth Nolan from Glasnevin, Dublin who has spent 3 decades bedbound with #SevereME .

For 15+ yrs she has had #VerySevereME: she's only able to have a few very short conversations & very little cognitive/mental stimulation☹️

#MEcfs #PwME
Photo of Ruth lying in bed
August 7, 2024 at 11:05 PM Everybody can reply
19 reposts 1 quotes 55 likes
2 19 55
arizona10238417.bsky.social
🔴🔴 Eine kämpfende Mama mit schwer krankem Kind 🔴🔴
@arizona10238417.bsky.social
Es gibt zu wenig Ärzte für einen gewaltigen Tsunami an Ki/Erw mit #MECFS #LongCovid

Man spricht von zuwenig Personal

Wann möchte man anfangen?

Unendliches Leid, wenn Angehörige alleine mit #Verysevereme gelassen werden
June 25, 2024 at 8:18 PM Everybody can reply
5 likes
5
sabinehermisson.bsky.social
Dr. Sabine Hermisson 🦋
@sabinehermisson.bsky.social
Für alle, mit #VerySevereME:

"Weil du schweigen musst,
müssen wir reden.

Weil du leiden musst in deiner Schwachheit,
müssen und dürfen wir Stärke zeigen.

Weil du nichts hören kannst in deiner Zelle,
müssen wir laut und klar sein in der Welt.

#MEAwarenessWeek #MECFS
Dunkles Zimmer, junge Frau im Bett liegend
May 16, 2025 at 11:51 AM Everybody can reply
48 reposts 2 quotes 130 likes
5 48 130
crashi.bsky.social
crashi.bsky.social
@crashi.bsky.social
Ein Déjà-vu für (wsl.) alle #MECFS
Betroffenen... Selleriesaft & Co.... Während schwerst #MECFS kranke Menschen seit Jahren und Jahrzehnten in ihren abgedunkelten Zimmern vegetieren und ihr Leben verlieren..

#millionsmissing #verysevereME #blueroses

#christmas4ME
November 23, 2023 at 1:57 PM Everybody can reply
2 likes
2
verhac.bsky.social
Verena Hackl
@verhac.bsky.social
Gerade erst gestern mit einem Vater aus OÖ telefoniert. Die Tochter steht kurz vor der künstlichen Ernährung. Sie wissen in ganz OÖ nicht wohin & das nächste, infrage kommende Spital „hat keine Ahnung dazu“.

Soviel zu „Versorgung… bereits gut aufgestellt“.

#VerySevereME #MECFS
cbammermd.bsky.social Christoph Bammer 🩺 🎸 @cbammermd.bsky.social · Aug 12
www.sn.at/panorama/w...

Leider stimmt das so nicht, es gibt bei uns dankenswerterweise vielerorts Bemühungen, so etwas wie eine spezialisierte Versorgung zu schaffen, aber von einer gut aufgestellten Versorgungssituation in 🇦🇹 zu sprechen, ist Euphemismus.
1/6
Angesprochen auf eine Beantwortung einer parlamentarischen Anfrage durch das Sozialministerium zur Frage der Versorgung der Betroffenen, in dem es laut einem Statement des Dachverbandes hieß, eine flächendeckende Versorgung für die Betroffenen sei gegeben, relativierte Schumann etwas: "Die Versorgung ist in vielen Bereichen bereits gut aufgestellt, aber es gibt sicherlich noch Verbesserungsmöglichkeiten, um dem tatsächlichen Bedarf umfassend gerecht zu werden.
August 12, 2025 at 11:26 AM Everybody can reply
8 reposts 23 likes
8 23
tomkindlon.bsky.social
Tom Kindlon
@tomkindlon.bsky.social
Petition: Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

www.change.org/p/save-milli...

#SevereME #VerySevereME #MEcfs #CFS #PwME
Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm Started22 February 2024Why this petition matters Started by Abi MillsI have set up this petition on behalf of  Millie, who is 18 years old and has very Severe Myalgic Encephalomyelitis (ME/CFS). She is currently in The Royal Lancaster Infirmary part of the University Hospitals of Morecambe Bay NHS Foundation Trust. Some staff at the hospital have stated that they don’t believe or take seriously ME symptoms and are speculating that it is a mental illness/eating disorder, even though it is stated by WHO and NICE that ME is a physical and complex neurological illness.  5,5607,500SignaturesNext Goal2,667 people signed todaySign this petitionFirst nameLast nameEmailYes! Tell me if this petition wins, and how I can help other relevant petitionsNo. I don’t want to hear about this petition’s progress or other relevant petitions.Do not display my name and comment on this petition
February 25, 2024 at 6:23 PM Everybody can reply
7 reposts 3 quotes 9 likes
1 7 9
tomkindlon.bsky.social
Tom Kindlon
@tomkindlon.bsky.social
This piece on Special Needs Letter of Intent” & others on site were recommended by an ME caregiver. It’s
about “provid[ing] the people who will care for your child when you are gone with detailed info only you know”

www.specialneedsplanning.com/parents-guid...

#SevereME #VerySevereME #PwME #MEcfs
Parent's Guide to the Special Needs Letter of Intent
A Letter of Intent can provide critically important information to the people who will care for your child when you are gone.
www.specialneedsplanning.com
July 24, 2024 at 10:50 PM Everybody can reply
3 reposts 2 likes
3 2
medocspsytheras.bsky.social
MissingDOCTORSandPSYCHOTHERAPISTS
@medocspsytheras.bsky.social
Unser tiefstes Beileid geht an die Familie, Freunde und Community der jungen Frau, die gestern nach größten Qualen durch #verysevereME verstorben ist.
Wir denken an alle an #MECFS- und #MCAS-Verstorbenen, für deren Schicksal tiefgreifendste Versäumnisse anzuklagen sind - auch ⤵️
Blaue Rose als Zeichen der Trauer, wenn jemand aus der ME/CFS – Community verstorben ist. Auf ihr sitzt ein kleiner blauer Schmetterling.
July 9, 2025 at 12:32 PM Everybody can reply
4 reposts 23 likes
1 4 23
tomkindlon.bsky.social
Tom Kindlon
@tomkindlon.bsky.social
Care instructions for how to take care of people with severe ME.

German:
public-health.meduniwien.ac.at/fileadmin/co...

Google translation:
drive.google.com/file/d/1phdn...

Screenshot from latest Science for ME weekly update

#SevereME #MEcfs #CFS #PwME #VerySevereME
Austria The Austrian Society for ME/CFS and the Center for Public Health at the Medical University of Vienna have published a new document with care advice for patients with (very) severe ME/CFS. The guide is in German and mostly based on the experiences of carers. It gives advice about practical things such as portable toilets, three-sided toothbrushes, customized earplugs, dimmable LED lights, etc.
August 18, 2025 at 1:03 AM Everybody can reply
9 reposts 13 likes 1 saves
9 13
lightupthenight4me.bsky.social
LightUpTheNight4ME
@lightupthenight4me.bsky.social
Am 8. August wird die ihnen und auch der ME/CFS Verstorbenen erinnert. Dieser besondere Tag ist ihnen und ihrem nahezu unvorstellbaren Leid gewidmet. 4/4

#severeME #severeMEday #verysevereme #blueroses #millionsmissing
August 9, 2024 at 11:20 AM Everybody can reply
2 likes
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violetta.bsky.social
Violet 𓆉
@violetta.bsky.social
#Petition ✍️ #MEcfs

Zwangseinweisung in Psychiatrie birgt bei #VerySevereME die Gefahr sehr grausam zu sterben!

In jedem Fall Verschlechterung von #MEcfs (sehr schwere körperliche Folter) und irreversibler seelischer Schaden!

www.change.org/p/prevent-fo...
Sign the Petition
Prevent forced psychiatric hospitalisation of Very Severe ME patient in Denmark
www.change.org
January 21, 2025 at 1:17 PM Everybody can reply
6 reposts 1 quotes 19 likes
3 6 19
somethingchronic.bsky.social
Something Chronic
@somethingchronic.bsky.social
@natashadevon.bsky.social and @mrjamesob.bsky.social please, please talk about this on your shows
#SevereME #VerySevereME
July 18, 2025 at 2:58 PM Everybody can reply
1
judyintheskynet.bsky.social
Judyintheskynet
@judyintheskynet.bsky.social
Let's see whether my body agrees ;)))
#verysevereME
#CSFleak
#MCAS

I need to write an health update because many asked at some point.

On the list. :) but it's not rosy ;)
#MECFS
#severeME
December 3, 2024 at 5:38 PM Everybody can reply
2 reposts 28 likes
2 2 28
swastrosarah.bsky.social
sarah boothby
@swastrosarah.bsky.social
I hope so; I am a lone voice afaik because none of the UK ME organisations speak up for #VerySevereME. This is nuts really, if you think about it. Nobody starts off with very severe ME, therefore it is a disease that can/has/does progress. Why call it a syndrome and why collude with those that do?
December 16, 2024 at 8:53 AM Everybody can reply
1 quotes 20 likes
3 20
tis-me-elle.bsky.social
Elle C
@tis-me-elle.bsky.social
Please sign to try and stop what is medical malpractice and outright torture in the year 2025!!! These situations are all too common but they cannot be ignored. Help #SaveLine

#VerySevereME
alexisme.bsky.social Alexis Gilbert @alexisme.bsky.social · Jan 20
Please sign and share the petition to stop a patient with Very Severe ME being forced to take inappropriate antipsychotic meds and detained because they can’t get out of bed.

bit.ly/linepetition
A screenshot of the first page of the petition showing Line, a 26-year-old white woman A screenshot of the text of this first page of the petition. Very Severe ME patient Line aged 26 from Denmark (@nebulow on IG) has appealed to the international ME and Long Covid community to help prevent her being involuntarily removed to a psychiatric hospital from the nursing home she has been living in for the past 10 months. The core values page on their website states that "It is crucial that the residents are met with: Respect Dignity Empathy Realistic Expectations" Please sign the petition below in support of our letter asking them to recognise her energy-limiting chronic illness as a debilitating biological disease and to spare her suffering further deterioration or even death
January 20, 2025 at 8:08 PM Everybody can reply
2 reposts 7 likes
2 7
me-cfs.bsky.social
Yann (ME/LC)
@me-cfs.bsky.social
“For everyone, with #VerySevereME:

Because you must remain silent,
we must speak.

Because you must suffer in your weakness,
we must and may show strength.

Because you cannot hear anything in your cell,
we must be loud and clear in the world.”

[This is a translation of this post below.]
sabinehermisson.bsky.social Dr. Sabine Hermisson 🦋 @sabinehermisson.bsky.social · May 16
Für alle, mit #VerySevereME:

"Weil du schweigen musst,
müssen wir reden.

Weil du leiden musst in deiner Schwachheit,
müssen und dürfen wir Stärke zeigen.

Weil du nichts hören kannst in deiner Zelle,
müssen wir laut und klar sein in der Welt.

#MEAwarenessWeek #MECFS
Dunkles Zimmer, junge Frau im Bett liegend
May 16, 2025 at 1:23 PM Everybody can reply
9 reposts 19 likes
9 19
crashi.bsky.social
crashi.bsky.social
@crashi.bsky.social
Die meisten Menschen wären wohl
entsetzt, wenn sie wüssten, wie schwer krank die Verfasser vieler Beiträge tatsächlich sind.

*
Zum kompletten Beitrag geht's hier...

#MECFS
#severeme
#verysevereME
#blueroses
#longcovid

#millionsmissing
@crashi_me_cfs - Das Original Team #LightUpTheNight4ME on Instagram: "Die meisten Menschen... Die ...
crashi_me_cfs on April 15, 2023: "Die meisten Menschen... Die meisten Menschen wären wohl entsetzt, wenn sie wüssten, wie schwe..."
www.instagram.com
December 19, 2023 at 6:21 AM Everybody can reply
3 likes
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tomkindlon.bsky.social
Tom Kindlon
@tomkindlon.bsky.social
UK Channel 4 News

M.E.: Lives devastated - and sufferers told it's made up (12 minutes)

youtu.be/pobf0RPlJuw?...

An honest & heartbreaking report about the situation for #verysevereME patients in the UK.

#MEcfs #PwME

1/
M.E.: Lives devastated - and sufferers told it's made up
For years many doctors believed M.E. - the long term neurological condition which causes debilitating pain and fatigue - was “all in the mind” of those who w...
youtu.be
February 25, 2024 at 12:23 PM Everybody can reply
5 reposts 6 likes
1 5 6
violetta.bsky.social
Violet 𓆉
@violetta.bsky.social
Heute ist #SevereMEDay!

Gutes Aufklärungsvideo über #VerySevereME und #SevereME auf englisch!

Vom Gesundheitssystem gibt es nach wie vor keine Versorgung❗

Wer mit #VerySevereME nicht von Angehörigen gepflegt wird, stirbt besonders grausam❗

www.dialogues-mecfs.co.uk/films/severe...
Severe & Very Severe ME / CFS - Dialogues
www.dialogues-mecfs.co.uk
August 8, 2025 at 10:12 AM Everybody can reply
4 reposts 5 likes
4 5