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23 posts10 participants0 posts today

**Tom Kindlon** @tomkindlon@disabled.social · 13h

Tom Kindlon @tomkindlon@disabled.social

From ME Research UK:

Having “CFS/ME” deeply impacts “experience of adulthood & relationships, and the consolidation and formation of identity” finds a small Australian study. “People not understanding” was identified as "the biggest struggle" with having the disease

More: http://tinyurl.com/mr3rr8nx

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

"The biggest struggle with having CFS.... I would love to say it's the fatigue, but honestly, it's not. I can deal with the fatigue. I've dealt with it for so long now... It's people, really, people and doctors and it's people not understanding"

**Tom Kindlon** @tomkindlon@disabled.social · 13h

13h

Tom Kindlon @tomkindlon@disabled.social

From meresearchuk

Joanne Hunt – a researcher at Uppsala Universitet in Sweden and “person with severe ME/CFS”, has written an article which highlights the lack of attention given to inequalities between different groups of people with ME/CFS.

Read more: https://bit.ly/3EPc6JM

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

Joanne Hunt - a researcher and "person with severe ME/CFS", has highlighted the the lack of attention given to inequalities between groups of people with ME/CFS - such as those in different ethnic groups. ealities of those in groups being Hunt explained that this lack of consideration may lead to the minority erased or misrepresented. Hunt J. Disability & Society (2025) INFORM. INFLUENCE. INVEST. SCO36942 RESEARCH UK

Replied in thread

**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 16h

16h

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

‪6/‬
‪May is #MyalgicEncephalomyelitis (ME) Awareness Month.‬

‪You can help by reposting +/or liking this video. It's a preview of a documentary, formerly called "Blue Ribbon" (now called The Forgotten Plague) (3 mins 5 secs)‬

‪https://youtu.be/y69PqwZoUws‬

‪Day 6 #MEcfs #CFS‬
@mecfs

youtu.be- YouTubeEnjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

**Birds Books and Bullshit** @NanoBookReview@zirk.us · 1d

Birds Books and Bullshit @NanoBookReview@zirk.us

Does anyone have any good *video* resources on the current state of the COVID strains floating around and their various effects from an infection? Short and long term impacts would be preferred. I saw lots of data during the first couple years, but since public interest has died down I have had difficulty finding good resources. They must be in video format on account of my CFS brain. Thank you.

#COVID #CFS #Science

Replied in thread

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

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

5/
May is Myalgic Encephalomyelitis (ME) Awareness Month.

You can help by sharing and/or liking this 102-second video. "What is ME/CFS?" (excerpt from LEFT OUT, reproduced with kind permission from UpNorth Film, Norway)

https://youtu.be/bXAdsrk0FZw

#MEcfs #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

Day 5

youtu.be- YouTubeEnjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

Continued thread

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

Tom Kindlon @tomkindlon@disabled.social

"Chronic living therapy Therapist perspective: Dan Wyke. An interview with counsellor and person with ME, Dan Wyke"

https://chroniclivingtherapy.com/dan-wyke-interview/

Screenshot is from the latest Science for ME weekly update

#MEcfs #CFS
@mecfs @longcovid @chronicillness @spoonies

Chronic living therapy Therapist perspective: Dan Wyke
And interview with counsellor and person with ME, Dan Wyke. "The harm caused by gaslighting by medical professionals is real and profound. It’s immensely hard for patients to live in a world that doesn’t want to acknowledge the reality of individuals’ illness and suffering. Not only can it lead to dangerous neglect but it can also cause patients to question their own sense of reality."
Interview l Thread

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

Tom Kindlon @tomkindlon@disabled.social

Documentary: Doctors as Patients

https://youtu.be/J0ywwLIfH_w?si=hZv0mzlGtnLzpwim

Screenshot is from the latest Science for ME weekly update

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

Documentary Doctors as Patients
A moving, honest and thought provoking documentary interviewing five medical doctors with post-acute infection-associated syndromes like ME, Long Covid and chronic Lyme. They talk about their experiences, what they were taught about these illnesses as students and what they have learned as patients. Directed by Anil van der Zee. The documentary is in Dutch and has English subtitles.
Documentary l Thread

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

Tom Kindlon @tomkindlon@disabled.social

New from Systrom team (US):

Exercise Pathophysiology in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID: Commonalities Detected by Invasive Cardiopulmonary Exercise Testing

https://www.atsjournals.org/doi/abs/10.1164/ajrccm.2025.211.Abstracts.A7881

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

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

Tom Kindlon @tomkindlon@disabled.social

From Chronic Living Therapy e-newsletter:

"Round up of articles spotted online in March/April 2025 that focus on the experiences of people with ‘psychologised’ or hard to diagnose health conditions."

https://chroniclivingtherapy.com/1-elsewhere-web/

@chronicillness
@spoonies @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM
#chronicillness #chroniclife #spoonie

Spotted in the news / online

Read any articles or research of interest to therapists and counsellors? Please share them with us! We've rounded recent ones up up and added them to our website.

Here's what we have from March and April 2025:

Physiology for Psychology by Emily Cochrane of POTSUK on how this physiological condition gets misinterpreted and treated as 'anxiety'.

#ThereforME published a piece by Ella Barnard who is lost for words trying to describe the reality of ME/CFS.

The Smithsonian published an excellent article about how mental illness has become a scapegoat diagnosis for many women with serious physical health problems.

And a fantastic piece of research from Australia looking at young people with ME/CFS and exploring how they face challenges building independence and forming their own identities when their paths diverge so much from those of their peers. Can't recommend this one enough!

Read our roundup of March/April publications: https://chroniclivingtherapy.com/1-elsewhere-web/

Continued thread

**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 2d

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this this image.

Day #4
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

ME is also known as Chronic Fatigue Syndrome in some countries REPEATED INFECTIONS HEADACHES FEVER Myalgic CHRONIC SORE THROAT MEMORY PROBLEMS encephalomyelitis INSOMNIA PAIN dozens of everchanging symptoms on a daily basis www.facebook.com/ MEAwarenessPics PLEASE JOIN US! ALLERGIES AND INTOLERANCES SENSORY OVER-LOAD BLURRED Vision HEART PALPITATIONS BRAINFOG MUSCLE WEAKNESS DIZZINESS PROBLEMS DIGESTIVE

Replied in thread

**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 2d

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

(2 minutes)
"What is ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)?" By @brokenbattery

https://www.youtube.com/watch?v=X6f4zCe2ZtA

You can help by liking and/or reposting this short video

#MEcfs #CFS
Day 4
@mecfs

YouTubeWhat is ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)By Broken Battery

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

Tom Kindlon @tomkindlon@disabled.social

The Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients with a Normal Heart Rate and Blood Pressure Response During a Tilt Test

https://www.mdpi.com/2227-9032/12/24/2566

Screenshot from the AMMES May email newsletter

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

Photo of a man having a tilt table test

The Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients with a Normal Heart Rate and Blood Pressure Response During a Tilt Test
Two different patient groups with a normal HR and BP response during the tilt were identified: those with a CO and CBF in the normal range for HCs and those with an abnormal CO and CBF reduction during the tilt (91% of patients). In the latter group of patients, an almost 1:1 relationship between the CO and CBF reduction suggests the absence of compensatory vasodilation in the cerebral vasculature. This might indicate endothelial dysfunction in most ME/CFS patients and may have clinical and therapeutic implications.
Read more here>>

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

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

Mary @marytynan has ME and she has given us the following description to use when we are highlighting it:

"A fictionalisation of the struggles of a woman with Myalgic Encephalomyelitis (ME), and the obstacles she faces on a daily basis as a wheelchair-using mature student."

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

Mary Tynan is at Gaeilge ABC. Galway · The first public screening of the short film 'Na Doirse'. A fictionalisation of the life of a disabled mature student. In Irish, with English subtitles. Followed by a Q&A with the director, Mary Tynan, and the award-winning filmmaker, Seán Breathnach, hosted by Barbara Ni Donncha. 7.30 pm, 13 May, Gaelscoil Mhic Amhlaigh, H91 FV4D. Admission free. Gaeilge Abhantrach Bhearna Chnoc na Cathrach 390 PREMIÈRE POIBLÍ DÉ MÁIRT, 13 BEALTAINE, 2025, 7.30 PM GAELSCOIL MHIC AMHLAIGH SAOR IN AISCE NA DOIRSE GEARRSCANNÁN LE MARY TYNAN SCANNÁNAÍOCHT AGUS EAGARTHÓIREACHT LE SEÁN BREATHNACH.

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

Tom Kindlon @tomkindlon@disabled.social

From #ThereforME:
We’ve got a great guest blog today from Ella Barnard

Ella writes about the hermeneutical injustice of ME, why the right words don’t exist and how we can find them.

https://www.thereforme.uk/p/the-hermeneutical-injustice-of-me

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

White writing reads “If there were a test for ME, doctors could rely on objective data instead of patient testimony - but there isn’t. Patients are placed in a very difficult position: accessing care relies on their ability to describe an illness that resists description.Ella Barnard.” Behind the writing an image of a young woman walking by the sea with a dog. At the bottom of the image in blue “New #ThereForME Substack post”

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

Tom Kindlon @tomkindlon@disabled.social

"Therapist Perspective: Dan Wyke"

https://chroniclivingtherapy.com/dan-wyke-interview/

Comment: I liked this. I was going to share extracts but I think it's all good.

Dan Wyke - a therapist's perspective

Dan Wyke (a person-centred counsellor from the South of England) reflects on his experiences as a therapist and person with MECFS.

He shares ideas and suggestions for both people with #MECFS and also therapists who work with them.

Amongst other things, I asked Dan 'what sort of things can you ask a therapist at an introductory meeting to reassure yourself about their level of understanding?'

read the interview with Dan Wyke

Replied to Irish ME/CFS Association

**Petra van Cronenburg** @NatureMC@mastodon.online · 3d *

3d *

Petra van Cronenburg @NatureMC@mastodon.online

@IrishMECFSAssociation @mecfs Another proposition for #alt4you:

Graphic explaining the name of ME = Myalgic Encephalomyelitis coming from: My (muscle) + algic (pain) and Encephalo (brain) + myelitis (spinal cord inflammation), in some countries also known as Chronic Fatigue Syndrome, CFS.

#ME #CFS

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

Tom Kindlon @tomkindlon@disabled.social

US (University of Iowa) research:

Relation of Immune Profile to Exercise-Induced Pain and Fatigue in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post-acute Sequelae of SARS-CoV-2 Infection

Paywall:
https://www.jpain.org/article/S1526-5900(25)00392-X/abstract

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

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

Tom Kindlon @tomkindlon@disabled.social

Recap of professionally-facilitated support group "Surviving Invalidating Relationships & Experiences"

https://batemanhornecenter.org/wp-content/uploads/2025/03/20250311-Support-Group-Recap.pdf

"by becoming sick with a #chronicillness we become a minority...based on the prevalence rate of these conditions"

#Spoonies @longcovid
#LongCovid @mecfs
#MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #POTS @pots @chronicillness
@spoonies
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Continued thread

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

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

2/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this image.

Day #2

#MEcfs #CFS #pwME
@mecfs

Myalgic Encephalomvelitis (ME) also known as Chronic Fatigue Syndrome What are the symptoms of this complex, multisystemic and chronic illness? flu-like symptoms, enlarged lymph nodes widespread muscle and joint pain, headaches muscle weakness, sometimes paralysis cognitive problems, inability to concentrate, read sensitivity to light, noise, smell, touch (they can cause pain) sleep problems, sleep reversal, insomnia digestive disturbances, nausea extreme debilitating fatigue and exhaustion symptoms can get worse after minimal exertion for days, weeks, months for very severely ill sufferers, minimal exertion can lead to years of worse health or permanent deterioration many more debilitating and everchanging symptoms

Continued thread

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

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

‪2/‬

‪May is Myalgic Encephalomyelitis (ME) Awareness Month. ‬

‪You can help by sharing and/or liking this video. It is 3 minutes 5 seconds long. ‬

‪https://www.youtube.com/watch?v=TGIo1v7KVJQ ‬
‪--- ‬
‪This film will give you an introduction to PEM (Post Exertional Malaise).‬
‪--- ‬
‪Day 2 #MEcfs #CFS ‬
@mecfs

YouTubeME and PEMBy Norges ME-forening - Rogaland Fylkeslag

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