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@tomkindlon.bsky.social Sep 25, 2026, 10:42 PM

8-page document "ME, CFS and Long Covid Health and Care Passport"
suffolkfed.org.uk/wp-content/u...

Could be used by people in lots of countries

#MEcfs #LongCovid #PwME #CFS

ME, CFS AND LONG COVID
HEALTH AND CARE PASSPORT

SECTION 1: CRITICAL INFORMATION AT A GLANCE

Personal Information
Name: I Prefer to be Called:
Date of Birth: NHS Number:
Address: Hospital Number:

Emergency Contact
Name: Contact Number:
Relationship:

MY CURRENT STATUS
Selection Status Meaning

☐

GREEN: I am at my
BASELINE

I am managing within my energy
limits but remain at risk of PEM.

☐

AMBER: I am STRUGGLING /
AT RISK OF A CRASH

My symptoms are worsening.
Please minimise ALL exertion
immediately to prevent a crash.

☐

RED: I am in a CRASH /
SEVERE RELAPSE

Assume I have zero available energy. All
interaction is potentially harmful.
Please follow my emergency care
plan as set out in this section,

MY CURRENT SEVERITY
Selection Severity Meaning

☐

Mild
I may need support for some tasks and
may have difficulties with mobility.

☐

Moderate
I have reduced mobility, and I am
restricted in all activities of daily living.

☐

Severe
I am confined to the house, need help
with all activities, sensitive to light and
sound.

☐

Very Severe
I am confined to bed, hypersensitive,
dependent on care, need help with
personal hygiene, eating.

@irishmecfsassoc.bsky.social Sep 25, 2026, 9:44 PM

Social gatherings in Bray, Cork, Dublin, Kilkenny & Limerick (Irish ME Trust)

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #speirgorm #spéirgorm #speirghorm #spéirghorm

Have a Snack on ME
Our next social gatherings will take place in –
CORK, LIMERICK. DUBLIN BRAY & KILKENNY.
Full details as follows:
CORK
Barry’s of Douglas, Bar & Restaurant, Douglas, Cork.
Wednesday 30th September - Time – 12.00pm (organised by Ashling)
LIMERICK
The Strand Hotel
Ennis Road, Limerick
Wednesday 30th September - Time – 12.00pm (organised by Sarah)
DUBLIN
Groome's Bar & Bistro, Cassidy’s Hotel
Upper O’Connell Street, Dublin 1
Wednesday 30th September - Time – 2.00pm (organised by Shell)
BRAY
Villa Pacis Centre (on grounds of Queen of Peace Church in Bray)
Vevay Road, Bray, A98VP93.
Friday 2nd October - Time – 12.30pm (organised by Audrey)
KILKENNY
Bistro Bar, Kilkenny River Court Hotel
The Bridge John Street, Kilkenny.
Thursday 8th October - Time – 2.00pm (organised by Ailish)
All are Welcome
If anybody is interested in helping to arrange further locations, please contact info@imet.ie

@precisionlife.bsky.social Sep 25, 2026, 4:47 PM

M.E. has been overlooked for decades. What will it take to turn recognition into better care?

Sonya Chowdhury, CEO of @actionforme.bsky.social, recently joined us on Biology Matters to discuss the path from research to meaningful change for patients.

#MECFS #LongCOVID #myalgicE #pwME

@belasco.bsky.social Sep 25, 2026, 4:41 PM

Today I’m feeling particularly grateful for the #pwME & #pwLC who have the energy to get angry, stand up to & make the community aware of bad studies & bad actors, & even occasionally the ability to physically show up to represent the unseen masses.

@meactnet.bsky.social Sep 25, 2026, 4:19 PM

Have you checked out all the amazing things Pillow Writers has going on lately? So many options! https://pillowwriters.wordpress.com/

They are an international ME/CFS writing community, free and open to anyone with ME/CFS or Long Covid. We are honored to host this amazing group!
#pwME #pwLC

Calendar listing October events for Pillow Writers with dates and times in GMT and PST, featuring sessions like Early Pillows, Standard Pillows, Pillow Crafters, WIMEL, and Softest Pillows. On cream background with fall leaves at the top.

@tomkindlon.bsky.social Sep 25, 2026, 2:36 PM

2/
Also: You can't trust personal testimonials about lightning process: The whole process involves training/hypnotising a patient to say they are well and not mention their symptoms or limitations

#MEcfs #CFS #ChronicFatigueSyndrome #PwME #MyalgicEncephalomyelitis

@tomkindlon.bsky.social Sep 25, 2026, 2:26 PM

Conclusion of:
"Journal of Psychosomatic Research Publishes First-Person Account of “Cure” with the Lightning Process" by David Tuller @davetuller1.bsky.social

virology.ws/2026/09/25/t...

#MEcfs #LongCovid #PwME #CFS

For every Lightning Process recovery story, there is a parallel story of someone failing to get better, or getting much, much worse after attempting to follow the program for days, weeks, even months. Has the journal sought to publish any of these negative accounts as a response? Or are only positive examples regarded as having enough evidentiary value to be accepted for publication in the JPR?

The journal seems to. have gone off the rails with this one.

@katybrc.bsky.social Sep 25, 2026, 1:52 PM

A sick note from 1990 from my then Dr
“Too weak & debilitated to work” - & everything else.
Pre PACE trail & there was no gaslighting, no GET or CBT.
36 years on, so little has changed & the BPS cabal have ensured that the lives of #pwME were made infinitely worse

@michaelnobbs.bsky.social Sep 25, 2026, 8:40 AM

It's raining as I record my #MorningView today, so I'm going to scurry straight back indoors with my mug of tea.

Have a gentle day ❤️🐌

#MECFS #pwME #Wales #CreativeHabit

@cabruce.bsky.social Sep 25, 2026, 8:30 AM

#pwME this from our health secretary YvetteCooper. Dr Weir later made a statement saying if people recover they normally do so in the first year. Anyway I guess she’s tired of all ME stuff 😡https://www.independent.co.uk/incoming/tired-of-all-this-miserable-me-stuff-5597991.html

@ace9801.bsky.social Sep 25, 2026, 2:47 AM

Way to go Canada…next step…share this with the public please.

And while you’re at it, how about some long term monitoring! Because FYI the pandemic is not over.

#LongCOVID #PAIS #IACCIs #MEcfs #pwME

Published September 9, 2026

www.canada.ca/en/public-he...

@litsadremousis.bsky.social Sep 25, 2026, 12:01 AM

Thanks so much to the great science writer George Monbiot @georgemonbiot.bsky.social for once again covering the ongoing systemic neglect and abuse of patients w/ #MyalgicEncephalomyelitis

Essential reading for #pwME, #MedSky, and allies:

www.theguardian.com/commentisfre...

@tomkindlon.bsky.social Sep 24, 2026, 10:30 PM

(Queensland, Australia)
"Help Us Research Chronic Neuroinflammation in ME/CFS"

More information here (third item)
mecfs.org.au/get-involved...

The QR code goes here:
www.unisc.edu.au/thompson-ins...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

UniSC
Australia
Thompson Institute
Help Us Research Chronic Neuroinflammation in ME/CFS
We are seeking adults aged 18-65 with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) to assist us to investigate chronic neuroinflammation in ME/CFS.
You could be eligible if:
• You are aged between 18-65 (with ME/CFS).
• Can communicate in English.
Have no neurological or active psychiatric illnesses.
As a research participant, you would take part in:
• At your own pace, questionnaires to assess different aspects of mental and physical health status.
•
A physical assessment.
One magnetic resonance imaging (MRI) scan (50 minutes scanning time plus preparation).
One blood and saliva sample collection.
Participants with fatigue conditions will also take part in:
Two clinical telehealth interviews with two specialists. Each interview will be scheduled for 30-45 minutes.
To express your interest or learn more,
please contact:
Anya, Research Coordinator
Email: cfs@usc.edu.au
We appreciate your time and effort, so participants will be gifted $50.00 AUD for their participation and will receive a copy of their brain scan.

@tomkindlon.bsky.social Sep 24, 2026, 9:54 PM

‪2/‬

‪George Monbiot writes about the 'astonishing, ongoing mistreatment of people with ME/CFS.' ‬

‪I join him in asking you to, 'spread it far and‬ ‪wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral.'‬

‪ #CFS‬ #MEcfs #PwME #CFSME

@tomkindlon.bsky.social Sep 24, 2026, 9:06 PM

As many of you already know, @georgemonbiot.bsky.social has published another hard-hitting article on ME in the Guardian today.

Great to see such coverage, especially as the Guardian published some rubbish by others before

www.theguardian.com/commentisfre...

#MEcfs #PwME #MyalgicEncephalomyelitis

Opinion
ME / Chronic fatigue syndrome
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed
George Monbiot
George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors
Thu 24 Sep 2026 01.00 EDT
Somebody sitting on a bed looking at a wall with a display of negative past medical experiences
Illustration: Bill Bragg/The Guardian

@nmjk.bsky.social Sep 24, 2026, 8:13 PM

Not sure when PEM - post-exertional malaise - was coined for how utterly exhausted and poisoned you feel after any kind of exertion for #pwME. No activity, physical or mental can be sustained. Exercise exacerbates. I think noughties. I fear now the term is bandied around by anyone and everyone.

@me-with-me.bsky.social Sep 24, 2026, 7:01 PM

I gave up with so called medical professionals decades ago. And that’s as an ex medical professional. I refuse to go to NHS for fear of their wilful ignorance and arrogance making me significantly worse or even killing me. This is a fear I suspect most #pwME have.