Milan @milan

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**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 12h

12h

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

One of the items that went out in a mail-out to 3612 Irish GPs in the last few weeks

This free 1-hour CPD course can be taken by professionals around the world

https://www.studyprn.com/p/chronic-fatigue-syndrome

#MEcfs #CFS @mecfs

Free CPD
Improve your knowledge on diagnosis and management of
myalgic encephalomyelitis (ME/CFS)
CPD module
(https://www.studyprn.com/p/chronic-fatigue-syndrome)
 Diagnose ME/CFS
 Recognise post-exertional malaise (symptom exacerbation)
 Prevent worsening of symptoms through pacing advice
 Consider relevant tests and investigations
On successful completion you will gain 1 CPD point and a certificate

Course author, Dr Nina Muirhead
BA (Oxon), BMBCh (Oxon), MRCS HOHNS, MEd, PGCipDerm
ME/CFS is one of the most fascinating and important diseases of our time.
In writing this module I started from scratch. I drew on the international peer reviewed literature and emerging international ME/CFS educational re-sources and have been fortunate to re-ceive significant contributions from medical experts, scientists and patients.
The economic and social impact of chronic disease affecting often young, otherwise productive individu-als is a burden that every one of us will bear and it is the responsibility of all healthcare professionals to up-date their own knowledge to be able to offer early and accurate diagnosis and support.
Dr Muirhead is a Director at Doctors with M.E., the global pro-fessional organisation for medical practitioners, scientists and researchers in the field of myalgic encephalomyelitis.
(https://doctorswith.me)

V2 2023 - Incorporates emerging parallels with long-COVID and core learning points from the ME/CFS Guideline from NICE (NG206).

**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 12h

12h

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

Congratulations and thanks to Lee for completing his 24-hour marathon in aid of ME in memory of his late brother, Joss.

Separate donation links below in case anyone wants to donate to one of Lee's pages
Irish ME/CFS Association
https://www.idonate.ie/fundraiser/LeeColligan

Action for ME
https://joshcolligan.muchloved.com/

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

**Tom Kindlon** @tomkindlon@disabled.social · 15h

15h

Tom Kindlon @tomkindlon@disabled.social

An Irish woman with ME (who is a published author) blogs about a few of the brain fog problems she has experienced.

https://solongasicanbreathe.wordpress.com/2025/04/07/crossed-wires/

#brainfog @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC @chronicillness
@spoonies

Crossed Wires
One symptom of ME is brain fog but to be honest the simplicity of the term diminishes the reality of its impact.

For years I owned a nokia dumb phone which allowed me enter 25 reminders at once and everyday all 25 slots were filled, my husband joking I required a reminder to breathe.

When we changed mobile provider, I was forced to buy a new nokia dumb phone as mine was too outdated for the newer, smaller SIM cards.

For one week I wrote my reminders down. So much so, there were scraps of paper all over our kitchen and I found I was having to write reminders as to where the reminders were.

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

Tom Kindlon @tomkindlon@disabled.social

#MEAction announced this year's Millions Missing campaign

https://www.meaction.net/2025/04/02/millionsmissing-2025-sending-out-an-sos/

Image is from latest Science for ME weekly update

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

USA - #MEAction announced that this year's Millions Missing campaign is "largely focused on the seismic cuts being made to research funding, healthcare, and disability services in the U.S." Register now for one of the two planning meetings scheduled for Thursday, April 10. Plans for the UK campaign coming soon.
Announcement | Thread

**Pete Ashton** @pete@social.coop · 1d

Pete Ashton @pete@social.coop

Was looking for ways to visually record my chronic fatigue and frying an egg for lunch is the one hot meal I can consistently manage at the moment, so I’m photographing them. Nine so far, which is a grid. Next grid at 16. #cfs

A grid of nine photos of fried eggs on toast, cooked to varying degrees of compentency.

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

Tom Kindlon @tomkindlon@disabled.social

Please support Dr David Tuller's important work: he has the necessary skills, knowledge & networks to be able to challenge those who promote dubious psychobabble theories & that conditions can be overcome with enough effort/discipline

https://crowdfund.berkeley.edu/project/46120

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

@david

**Gravitation** @gravitation@norden.social · 2d

Gravitation @gravitation@norden.social

People with #LongCovid or #MEcfs, how do you differentiate between PEM and a crash? Is there a qualitative or quantitative difference for you?

Please elaborate in the comments :)

@longcovid #PostCovid #cfs @mecfs

It's the same for me
A crash is just strong PEM
It's two distinct things
other / see results

**Gravitation** @gravitation@norden.social · 2d

Gravitation @gravitation@norden.social

People with #LongCovid or #MEcfs, how do you differentiate between PEM and a crash? Is there a qualitative or quantitative difference for you?

Please elaborate in the comments :)

@longcovid #PostCovid #cfs @mecfs

It's the same for me
A crash is just heavy PEM
It's two distinct things
other / see results

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

Tom Kindlon @tomkindlon@disabled.social

#MEAction UK paediatric leaflet.

Among other things, this was shared at a stand at the recent Royal College of Paediatrics and Child Health Conference in Glasgow
(shared with permission)

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

1 of 2

#MEAction UK
#ME
ACTION
UNITED KINGDOM
Campaigning for improved recognition, education and research into ME
Myalgic encephalomyelitis (ME) is a profoundly debilitating, complex energy-limiting disease, affecting multiple systems within the body.
Did you know?
UU
ME is the most common reason for long term sickness absence from school.
There is no single test to diagnose ME, no cure and no universally effective treatment.
ME affects around 1
ME can affect children
in 130 children.
as young as 2.
Scan the QR code to visit www.meaction.org.uk/MedEd
for a range of resources on ME.
You can also email us at uk@meaction.net
1 in 5 families face unfounded accusations of FII, abuse or neglect.
SCAN ME

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

Tom Kindlon @tomkindlon@disabled.social

New from Switzerland:

Effect on Quality of Life of Therapeutic Plasmapheresis in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients with Elevated Ꞵ-Adrenergic and M3-Muscarinic Receptor Antibodies – a Pilot Study

https://www.preprints.org/manuscript/202504.0228/v1

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

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

Tom Kindlon @tomkindlon@disabled.social

Well done to Drs Crawford & Tuller @david both known in the ME community, for their letter in the Lancet which can be read for free here:
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(25)00329-0/fulltext?rss=yes

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

Continued thread

**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 3d

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

3/
Final letters went out to GPs today. In the end, 3612 went out.

Continue to receive the odd returned envelope (gone away, retired, etc.) so happy to send out the bundle to people in Ireland (members are getting info in upcoming newsletter).

#MEcfs #pwME #CFS
@mecfs

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

Tom Kindlon @tomkindlon@disabled.social

From ME Research UK:

A study in Turkey has been published investigating the perceptions and clinical approaches of pain management specialists towards ME CFS.

Read about the research findings here: https://tinyurl.com/readeyxv

#mecfs #cfs @mecfs

Perceptions and clinical approaches of pain management specialists towards ME/CFS A study in Turkey investigated the perceptions and clinical approaches of pain management specialists towards ME/CFS. Of the 250 pain management specialists invited to take part in the study, 106 (42%) responded to the questionnaire. Results showed: • Only 40% had previously heard of ME CFS. • 38% believed ME/CFS to be "a subtype of depression". • 51% agreed with the statement "Chronic fatigue decreases with intense aerobic exercise". The authors concluded that future research should focus on education and standardised guidelines to enhance care for people with ME/CFS INFORM. INFLUENCE. INVEST. ME SC036942 RESEARCH UK Uygun et. al., Cureus (2025)

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

Tom Kindlon @tomkindlon@disabled.social

ME Research UK:

A small study in Sweden has investigated whether higher numbers of cells from several different viruses could be identified in people with ME/CFS compared to those without the disease. Read more about what the study found here: https://tinyurl.com/3d63zwwh

#mecfs #cfs @mecfs

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

Tom Kindlon @tomkindlon@disabled.social

From ME Research UK:

Rob Wüst at Vrije Universiteit Amsterdam has updated us on the progress of his ME Research UK-funded project investigating microclots in the muscle of people with ME/CFS, and analysing blood vessels and mitochondria in skeletal muscle fibres. https://bit.ly/wust068

#mecfs #cfs @mecfs

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

Tom Kindlon @tomkindlon@disabled.social

Virax Biolabs, UK:

Evaluation of T cell dysfunction in Post Acute Infection Syndromes [ME/CFS, long COVID, post treatment Lyme]

https://viraxbiolabs.com/wp-content/uploads/2025/03/WIRMposter_printing.pdf

Results of only 10 participants reported here but 150 are being studied

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #Lyme #LymeDisease

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

Tom Kindlon @tomkindlon@disabled.social

"Time to diagnosis for ME/CFS"

I'm highlighting this mainly to show how long it takes many people to get diagnosed. 5 years in my case with a huge deterioration in 5th year.

And some people sadly die without ever getting a diagnosis.

From:
https://bmjopen.bmj.com/content/15/4/e094658

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

comparison of time to diagnosis before and after the 2021 NICE ME/CFS guidelines, assessing whether updated recommendations influenced diagnosis timelines

Continued thread

**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 4d

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

First enclosure & first item mentioned in covering letter:

Flyer for "Educational event for GPs: 'Key messages for Primary Care on the Diagnosis and Management of Post-Viral Fatigue Syndrome and ME/CFS'"

https://1drv.ms/b/s!AoHfldspRkWU1usfa8KlnRxEMOoisA?e=yHgRtx

#MEcfs #CFS @mecfs

Educational event for GPs: "Key messages for Primary Care
on the Diagnosis and Management of
Post-Viral Fatigue Syndrome and ME/CFS"
Time & date: Tuesday, April 8, 2025. 7:30 PM
Duration: For just over one hour
Cost: Free
This is a *doctor-only* event
Venue: Online
Format: Dr Ros Vallings will give a general talk on the diagnosis and management of post – viral
fatigue syndrome and myalgic encephalomyelitis/chronic fatigue syndrome, which often follows a
virus. This will be followed by a question-and-answer session.
About the speaker: Dr Ros Vallings MNZM, MB BS is a GP who is recognised as the leading
expert on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in New Zealand. She
has seen thousands of patients with ME/CFS and related conditions in her practice over the last 40
years and regularly gives educational talks to medical professionals. She was the recipient of the
Nelson Ganz Award for Outstanding Clinician by the International Association for CFS/ME
(2016). Dr Vallings is the co-author of the IACFS/ME physicians’ primer; the international
consensus ME primer; and “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and
Management in Young People: A Primer”.
Registration: Pre-registration is required. Contact events@irishmecfs.org.
Accreditation: Accreditation has been approved by the Irish College of General Practitioners.
Organised by the Irish ME/CFS Association & the Irish ME Trust

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

Tom Kindlon @tomkindlon@disabled.social

A huge amount of dissatisfaction and not much satisfaction regarding "NHS experience and specialist visits" from people with ME/CFS and to a slightly lesser extent people with long Covid in the UK

From:
https://bmjopen.bmj.com/content/15/4/e094658