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Items tagged with: MECFS

Quote:

"Long COVID did not create medicine’s discomfort with invisible illness. It exposed a preexisting pattern that millions of patients had been navigating for decades.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, POTS — these conditions share remarkable clinical overlap with Long COVID, and they share something else too: a history of being dismissed, minimized, and inadequately researched"

@mecfs @longcovid

#MEcfs #LongCovid #POTS #MedMastodon

Tom Kindlon

2026-05-26 11:13:04

mastodon - Link to source

Health is Political by Brittani James
“Long COVID Changed Everything”

blog.brittanijamesmd.com/p/lon…

Description from Science for ME @s4me update:

Good blog post by Family Medicine physician Dr. Brittani James on what illnesses such as #LongCovid & ME reveal about medicine's limits.

#pwme #mecfs @mecfs @longcovid


Long COVID Changed Everything

What a mass disabling event revealed about medicine’s limits
Brittani James, MD (Health is Political)

#longcovid #medmastodon #mecfs #pots @ME/CFS @Long Covid

Orthostatic Intolerance Testing Made Clear: Tilt Table, Active Stand, and the Passive Stand

batemanhornecenter.org/orthost…

This blog post discusses orthostatic intolerance, a "hallmark feature" of ME/CFS and Long Covid, and the three tests used for diagnosis.

#MEcfs #LongCovid #pots @longcovid @pots @mecfs

Orthostatic Intolerance Testing Made Clear: Tilt Table, Active Stand, and the Passive Stand

A new NIH/NIAID strategic vision signals increased attention to post-infectious conditions like ME/CFS and Long COVID.
Lucinda Bateman, MD (Bateman Horne Center)
#longcovid #mecfs #pots @ME/CFS @Long Covid @pots

#longcovid #mecfs #pwme @ME/CFS @Long Covid @Science for ME Forum

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A repository of selected ME/CFS and Long Covid documentaries & shorts. Plus some current affairs reports, art films and archival footage

skywriter.blue/@nessau.bsky.so…

#MECFS #LongCovid #GreatestMEdicalScandal #MillionsMissing #May12th @mecfs @longcovid

Page by Ness | @nessau.bsky.social

🧵🧵 A repository of selected ME/CFS and Long Covid documentaries & shorts. Plus some current affairs reports, art films and archival footage * Compiled over a few years from web searches * Apologies for any links that have broken #MECFS #LongCovid …
Skywriter
#longcovid #mecfs #may12th #millionsmissing #greatestmedicalscandal @ME/CFS @Long Covid

NZ Media Awards: 2026 Winners & Finalists

Zoe Madden-Smith (Re: News / TVNZ) wins Video Journalist of the Year for "ME/Chronic fatigue syndrome: The mysterious illness trapping people in their bodies."

npa.co.nz/nz-media-awards/2026…

youtu.be/DsOAq6cs564

#MEcfs #SevereME #CFS @mecfs

ME/Chronic fatigue syndrome: The mysterious illness trapping people in their bodies

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, is a neurological disease. But misinformation from decades ago, which claimed it was ...
Re: News (YouTube)
#mecfs #cfs #SevereME @ME/CFS

#mecfs #pwme @ME/CFS

Emerge Australia:
Communiqué: Fatigue isn't the same as post-exertional malaise (PEM)

"PEM is real. It is serious. And it must not be made worse by misunderstanding."

Signed by researchers, clinicians and advocates.
emerge.org.au/wp-content/uploa…

#PEM #MEcfs #CFS #PwME @mecfs

#mecfs #pwme #cfs #PEM @ME/CFS

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As part of ME Awareness week, ME Research UK will consider research progress, and challenges faced, when working to understand key symptoms of ME/CFS.

Today, the focus is on Post-exertional malaise (PEM), the cardinal feature of ME/CFS.

Read more: bit.ly/42bpC2D

#pem #mecfs #cfs #pwme @mecfs

ME Awareness week 2026 – Research

This week, for ME Awareness week 2026, ME Research UK has published a series of articles discussing the progress made—and challenges faced—when investigating the four key symptoms of ME/CFS which are required for a diagnosis to be made under the 2021…
bit.ly
#mecfs #pwme #cfs #PEM @ME/CFS

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From ME Awareness Week.
tinyurl.com/MEAW2026

The experience of cognitive dysfunction, ‘brain fog’, cannot be equated to the occasional forgetfulness and lapses in concentration experienced by healthy individuals.

How does 'brain fog' impact your daily life?👇

#mecfs #cfs #pwme #brainfog @mecfs

ME Awareness Week 2026 – Overview

ME Awareness Week takes place every May during the week of May 12th, which marks International ME Awareness Day.
tinyurl.com
#mecfs #pwme #cfs #brainfog @ME/CFS

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This week, ME Awareness week 2026, ME Research UK are considering research progress, and challenges faced, when working to understand key symptoms of ME/CFS.

Today, the focus is on Brain fog (also known as cognitive dysfunction): bit.ly/42bpC2D

#brainfog #mecfs #cfs #pwme @mecfs

ME Awareness week 2026 – Research

This week, for ME Awareness week 2026, ME Research UK has published a series of articles discussing the progress made—and challenges faced—when investigating the four key symptoms of ME/CFS which are required for a diagnosis to be made under the 2021…
bit.ly
#mecfs #pwme #cfs #brainfog @ME/CFS

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From ME Awareness Week.
tinyurl.com/MEAW2026

Fatigue in ME/CFS is not just tiredness, it is a persistent symptom that is not adequately relieved by rest and significantly impacts activities of daily living.

How does fatigue impact your daily life?👇

#mecfs #cfs #fatigue #pwme @mecfs

ME Awareness Week 2026 – Overview

ME Awareness Week takes place every May during the week of May 12th, which marks International ME Awareness Day.
tinyurl.com
#mecfs #pwme #cfs #fatigue @ME/CFS

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Credit to themsbloke. A high-energy video that might require pacing!

He has multiple sclerosis himself rather than ME/CFS.

Note that the F word is used.

#MEcfs #PwME #MyalgicEncephalomyelitis #ME #MyalgicE
@mecfs

#mecfs #pwme #myalgicencephalomyelitis #me #myalgice @ME/CFS

#mecfs #pwme #me #myalgice @ME/CFS

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For ME Awareness week 2026, ME Research UK has considered research progress, and challenges faced, relating to key symptoms of ME/CFS.

Today, the focus is on fatigue: bit.ly/42bpC2D

#mecfs #cfs #fatigue #pwme @mecfs

ME Awareness week 2026 – Research

This week, for ME Awareness week 2026, ME Research UK has published a series of articles discussing the progress made—and challenges faced—when investigating the four key symptoms of ME/CFS which are required for a diagnosis to be made under the 2021…
bit.ly
#mecfs #pwme #cfs #fatigue @ME/CFS

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From ME Awareness Week.
tinyurl.com/MEAW2026

Unrefreshing sleep is a common issue in ME/CFS, where a full night's sleep, doesn't leave one rested. There can also be other changes in sleep quality/quantity/patterns.

How does sleep dysfunction impact your daily life?👇

#mecfs #cfs #pwme @mecfs

ME Awareness Week 2026 – Overview

ME Awareness Week takes place every May during the week of May 12th, which marks International ME Awareness Day.
tinyurl.com
#mecfs #pwme #cfs @ME/CFS

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As part of ME Awareness week 2026, ME Research UK have put together a series of articles considering research progress, and challenges faced, when working to understand key symptoms of ME/CFS.

Today, the focus is on sleep difficulties: bit.ly/42bpC2D

#mecfs #pwme #cfs @mecfs

ME Awareness week 2026 – Research

This week, for ME Awareness week 2026, ME Research UK has published a series of articles discussing the progress made—and challenges faced—when investigating the four key symptoms of ME/CFS which are required for a diagnosis to be made under the 2021…
bit.ly
#mecfs #pwme #cfs @ME/CFS

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From ME Research UK:

Whilst symptoms and comorbidities of ME/CFS are debilitating, the disease can be isolating due to factors such as disbelief from others and lack of accommodation. tinyurl.com/MEAW2026

How has ME/CFS impacted you?👇

#mecfs #pwme @mecfs

ME Awareness Week 2026 – Overview

ME Awareness Week takes place every May during the week of May 12th, which marks International ME Awareness Day.
tinyurl.com
#mecfs #pwme @ME/CFS

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From @meresearchuk

This week, for ME Awareness week 2026, ME Research UK has published a series of articles discussing the progress made, & challenges faced when investigating key symptoms of ME/CFS, a disease which affects over 400,000 people in the UK. Read more: bit.ly/42bpC2D
#pwme #mecfs @mecfs

ME Awareness week 2026 – Research

This week, for ME Awareness week 2026, ME Research UK has published a series of articles discussing the progress made—and challenges faced—when investigating the four key symptoms of ME/CFS which are required for a diagnosis to be made under the 2021…
bit.ly
#mecfs #pwme @ME/CFS @users/meresearchuk

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From ME Research UK:

For ME Awareness Week 2026, we discussed ME/CFS symptoms, impact, and research.

For ease of access, these are links to our overview articles:
ME/CFS symptoms and impact - tinyurl.com/MEAW26impact
ME/CFS research - tinyurl.com/MEAW26research

Please share to raise awareness

#mecfs @mecfs

ME Awareness Week 2026 – Overview

ME Awareness Week takes place every May during the week of May 12th, which marks International ME Awareness Day.
tinyurl.com
#mecfs @ME/CFS

From ME Research UK:

NHS Digital has introduced a SNOMED CT UK code for very severe ME/CFS. Until now, medical record codes existed only for ‘mild’, ‘moderate’, and ‘severe’ ME/CFS, but not ‘very severe’ ME/CFS. However, all still under "Chronic fatigue syndrome (disorder)"- tinyurl.com/y3wrh3ru

#mecfs @mecfs

Very Severe ME recognised in SONMED CT UK Code

NHS Digital for England now features a SNOMED CT UK code for very severe ME/CFS. Until now, it included concepts for ‘mild’, ‘moderate’, and ‘severe’ ME/CFS, but not ‘very severe’ ME/CFS.
tinyurl.com
#mecfs @ME/CFS

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ME Research UK:

Highlights of the International ME/CFS Conference 2026 included a presentation on the results from the DecodeME study and discussion of next steps, and a presentation on whole-body positron emission tomography (PET) scans for ME/CFS.

Read more: tinyurl.com/2crj6zd6

#mecfs #pwme @mecfs

Highlights from the International ME/CFS Conference 2026, including Decode ME & PET

On the 7th and 8th of May, the International ME/CFS Conference 2026 took place in Berlin and online, and ME Research UK was in attendance remotely.
tinyurl.com
#mecfs #pwme @ME/CFS

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Image is extract from new US study that sounds interesting (but I don't understand)

Association of Coronary Vasomotor Disorders and ME/CFS in Patients Undergoing Invasive Cardiopulmonary Exercise Testing

academic.oup.com/ajrccm/articl…

Invasive Cardiopulmonary Exercise Testing allows more interesting data to be collected than ordinary exercise testing.

#MEcfs #PwME #ME #MyalgicE
@mecfs

#mecfs #pwme #me #myalgice @ME/CFS

#mecfs #pwme #me #myalgice @ME/CFS

#longcovid #mecfs @ME/CFS @Long Covid

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Dr Amolak Bansal & I

I knew I wouldn't be able for whole Dublin event so only arrived at end of Q&A session but all feedback I've heard about his talks has been positive.I enjoyed chat I had with others

@IrishMECFSAssociation meetings left: Sat in Galway & Sun in Sligo.

#MEcfs #PwME #ME #MyalgicE
@mecfs

#mecfs #pwme #me #myalgice @ME/CFS @Irish ME/CFS Association

From @s4me weekly update:

The Swiss-German state broadcaster has published a good article on ME/CFS. It explains the troubles ME/CFS patients face with disability insurance procedures and how these often have a negative impact on their health.

Google translation:
www-srf-ch.translate.goog/news…

@mecfs #mecfs #mecfs_de

ME/CFS-Schwerstbetroffene kämpfen um ihre IV-Rente

Untersuchungen auf Kosten der Gesundheit? ME/CFS-Patienten müssen oft ein für sie unzumutbares IV-Verfahren durchlaufen.
Schweizer Radio und Fernsehen (SRF)
#mecfs #mecfs_de @ME/CFS @s4me

#longcovid #mecfs @ME/CFS @Long Covid

#mecfs #pwme #cfs #meaction #millionsmissing @ME/CFS

#longcovid #mecfs @ME/CFS @Long Covid

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I was fortunate to experience a nice family #BlueSunday2026 #TeaPartyForME2026 celebration yesterday in aid of the Irish ME/CFS Association @IrishMECFSAssociation

idonate.ie/fundraiser/BlueSund…

Thanks to my mum for all the work she put in organising it and to everyone who attended. 👍👏

#MEcfs #PwME #CFS #BlueSunday @mecfs

Support Blue Sunday 2026 for the Irish ME/CFS on iDonate.ie

Blue Sunday 2026 for the Irish ME/CFS Association for Irish ME/CFS Association, created by Irish ME/CFS Association | iDonate.ie
Online Charity & Non Profit Fundraising Services
#mecfs #pwme #cfs #teapartyforme2026 #bluesunday2026 #bluesunday @ME/CFS @Irish ME/CFS Association

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Delighted to get this coverage in the Sunday World, one of the newspapers with the largest readership in Ireland

#MEcfs #PwME
@mecfs

#mecfs #pwme @ME/CFS

#medmastodon #mecfs #pwme #physio #PEM #pese @ME/CFS

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Thanks to my mum for getting everything ready for our family
#TeaPartyForME2026 on #BlueSunday2026 (on Sunday).

We’re doing it in aid of the Irish ME/CFS Association @IrishMECFSAssociation
idonate.ie/fundraiser/BlueSund…
but other worthy charities are available (see:
the-slow-lane.com/donation-pag… )

#MEcfs #CFS #PwME #BlueSunday @mecfs

‘Blue Sunday’ Donations

Every year people use ‘Blue Sunday’ as an opportunity to donate to an M.E. charity or cause. Donate via the links below Below, I’ve compiled a list of donation pages to make it ea…
Anna ('M.E. myself and I' by Anna)
#mecfs #pwme #cfs #teapartyforme2026 #bluesunday2026 #bluesunday @ME/CFS @Irish ME/CFS Association

Hope to see some of you at the Dublin meeting tomorrow. I don’t have the energy for the whole event so I will lie in the back of our car till part way through the Q&A section to be around for chat section. Do come over and say hello if you are there. 👋
#MEcfs #PwME @mecfs
#mecfs #pwme @ME/CFS

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Yesterday, as part of a long thread on ME/CFS Awareness Day, I posted that the SequenceME research project had gotten partial funding.

"Major funding secured for Sequence ME & Long Covid, a DecodeMe project"

actionforme.org.uk/major-fundi…

This is good news! 🎉 More funding is still needed, but this is a good start.

I'm re-posting today because it was buried in my long thread & may have been missed by a lot of folks.

@mecfs @longcovid

#MEcfs #LongCovid #Genomics #SequenceME #DecodeME #MedMastodon

Major funding secured for Sequence ME & Long Covid, a DecodeMe project

We are thrilled to announce that our landmark research study, Sequence ME & Long Covid, has received major funding (£4.75m) from the UK government, signalling a transformative...
Josh Vince (Action for ME)
#longcovid #medmastodon #mecfs #Genomics #sequenceme #decodeme @ME/CFS @longcovid

#mecfs #pwme #fibromyalgia @ME/CFS

Am 12. Mai machte der Internationale ME/CFS-Tag auf die schwere neuroimmunologische Erkrankung #MECFS aufmerksam.

Die Forschung untersucht Störungen im #Immunsystem, #Energiestoffwechsel und mögliche #Autoimmunprozesse.

Viele Betroffene leiden unter #Belastungsintoleranz und massiver #Fatigue. Trotz neuer Ansätze fehlen weiterhin verlässliche Biomarker und zugelassene Therapien.

swr.de/swrkultur/wissen/intern…

#Gesundheit #Forschung #healthcare #Corona

Internationaler ME/CFS-Tag: Was hat sich in der Forschung getan?

Am 12. Mai ist der internationale ME/CFS-Tag. Es ist der Geburtstag der englischen Krankenschwester Florence Nightingale (1820-1910), die an einer CFS-artigen Erkrankung litt.
SWR Kultur
#healthcare #forschung #mecfs #fatigue #Immunsystem #energiestoffwechsel #autoimmunprozesse #belastungsintoleranz #gesundheit #corona

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90-second local TV news (in New Mexico) segment on recent study looking at memorial messages for 500 people with ME/CFS

Universal links:
msn.com/en-us/health/medical/s…
or
youtube.com/watch?v=7T91vSdfL5…

This link won't work for many people:
koat.com/article/study-says-ch…

#MEcfs #PwME #CFS @mecfs

Study says chronic fatigue syndrome

Study says chronic fatigue syndromeKOAT Action 7 News is your home for New Mexico breaking news and weather. For your latest New Mexico news and weather visi...
KOAT (YouTube)
#mecfs #pwme #cfs @ME/CFS

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UK government press release: "Thousands of ME/CFS patients to benefit from first genomics study: People with chronic fatigue syndrome, also known as ME, to benefit from world-first genomics study"

gov.uk/government/news/thousan…

#MEcfs #PwME #CFS @mecfs

Thousands of ME/CFS patients to benefit from first genomics study

People with chronic fatigue syndrome, also known as ME, to benefit from world-first genomics study.
Department of Health and Social Care (GOV.UK)
#mecfs #pwme #cfs @ME/CFS

I had a stressful dream last night, maybe appropriate for May 12! In the dream, I have a new or stand-in GP [family physician] and I am trying to persuade them to sign a disability form. They are smirking away, not very sympathetic. So I have to list my symptoms and losses over the years.

#MEcfs #May12 #May12th #WorldMEday #pwme @mecfs

#mecfs #may12 #may12th #worldmeday #pwme @mecfs

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