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Tom Kindlontomkindlon@disabled.social
2025-12-03

On International Day of #People with #Disabilities, please note some disabilities are #invisible

#invisibleillness #disabled #disabledpeople #DisabilityRights #DisabilityRightsAreHumanRights
#IDPD #IDPD2025 #IDPD25 #IDPWD #IDPWD25 #IDPWD2025 #Disability
@mecfs @longcovid @pots
#LongCovid #MEcfs #CFS #PwME #hiddenillness #chronicillness #Invisibledisability

5 stick images of people. In the first 4, the person has a disability aid but the fifth one does not. Text: some disabilities look like this
Irish ME/CFS AssociationIrishMECFSAssociation@mastodon.ie
2025-12-03

2/
Some more of our Christmas card sets

#MEcfs #CFS
@mecfs

6 Christmas card images
Rowdyrowdy
2025-12-03

New added for Techorama Belgium in May 2026.
More details at cfp.watch/cfps/2026-techorama-.

FIRST.orgfirstdotorg@infosec.exchange
2025-12-03

Practice your French and SPEAK at the 2026 Paris Technical Colloquium! The #callforspeakers closes December 5 (presentations in English😉)🔗go.first.org/lxxWO #FIRSTParisTC #ParisIncidentResponse #CFS

Chronic Illness Humor FunnyChronicIllnessHumor
2025-12-03

To understand brain fog in chronic illness... Imagine trying to think clearly while hungover, sleep-deprived, and halfway through a flu. Now imagine that's your brain every single day. CFS Health
Chronic Illness Humor FunnyChronicIllnessHumor
2025-12-02

@lemonade_grrrl - [tune of super freak] she's a very sleepy girl.......the kind you you tuck under the covers.....
Irish ME/CFS AssociationIrishMECFSAssociation@mastodon.ie
2025-12-02

(Ireland)
As sales of our Christmas card have been slow this year, we thought we would highlight our cards in a different way.

irishmecfs.org/store

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

1/

Screenshot of top of Christmas card page with 6 images and the following text: Christmas card sales are one of the Irish ME/CFS Association's main source of funds. The Association has no paid staff and has raised over €300,000 for research over the years. Thanks for your support! Updated Postage Costs (within Ireland only): 1-2 packs: €3 3-4 packs: €6 5-6 packs: €9 7 or more packs: Free Christmas Cards Showing 1–14 of 14 products Cats Cats €8.50 Donation Donation From €5.00 Dublin Scenes Dublin Scenes €8.50 Mixture AI Mixture AI €8.50 Mixture AL Mixture AL €8.50 Mixture AM Mixture AM
DieoderKeineDieoderKeine
2025-12-02

Und ihr heute so? Leben mit während die klassische Medizin mir vor wenigen Jahren nicht gut weiterhelfen konnte, habe ich hier einen Großteil meines zurückbekommen. Wir müssen endlich in der

Infusion
Tom Kindlontomkindlon@disabled.social
2025-12-02

2/
A quote from the 2000's from an ME/CFS patient of Peter White.

In PDW's PACE Trial the objective improvement results for CBT & GET were nothing like this & only a single-figure % recovered using the trial's protocol definition.

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

Logo for Chronic Fatigue Syndrome/ME Service at St Bartholomew's Hospital Will I get better? We have found that three quarters of our patients with CFS/ME significantly improve for recover with treatment in our clinic. The outcome data has confirmed that we expect significant improvement of 50% are patients and a recovery and a further 25%. Research has suggested that a quarter recover their health and a further half significantly improve. "What do you class as recovery? Peter White would say I'm a success story. I would like to know what level other people are at whom he classes as having recovered. To me if I'm recovered, I'm able to come off benefits, work full time, do my house work and have a life. But when I said this he asked me: "Do you want to go back to the life that gave you ME?" That's a cop out. I disagree with his definition of recovery. If you've improved significantly, to him that is recovery. I don't believe in what they say 100%. I believe you get ME and you just have to overdo it and the symptoms come back. I can manage to a certain extent but part of it you can't control. I know if I do too much I feel worse but according to them I bring this on by expecting to feel worse. According to them this is not founded and irrational. My belief system is holding me back. They do not believe in any physical basis for the illness like a virus.
Tom Kindlontomkindlon@disabled.social
2025-12-01

Horrific that Peter Denton White OBE was one of the leading world ME/CFS experts in the 2000s.

Among other things, he is probably the biggest proponent of graded exercise therapy (GET) for ME/CFS ever, who dismissed concerns about safety.

Chief medical officer to a disability reinsurance company: who knows how many claims he turned down.

Here’s a new quote to me showing his delusions.

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

The Royal College of Psychiatrists published a book in 2007 called The Mind: A User's Guide. It contains a chapter on CFS by Peter White. This is his concluding paragraph: "It's easy to feel that you will not be 'really' better until you are back to doing what you used to do. However, for some people, this will mean going back to what made them ill in the first place. In some cases, CFS can actually be helpful in the long run - people see how out of balance and stressful their previous life was. They can then change those parts of their life that have been unhelpful." (Bantam Press, p. 305)
Tiggytiggy@mastodonapp.uk
2025-12-01

There is another research webinar about ME/CFS. This time also looking at Long Covid.
They used DecodeME data.

Research Update Webinar: LOCOME Results
Date & Time
Dec 5, 2025 02:00 PM in London

It's advertised on FB with a link to register. If you want the link PM me

#ME #CFS

Irish ME/CFS AssociationIrishMECFSAssociation@mastodon.ie
2025-12-01

Comments sought on specific nursing homes in the greater Dublin area which may or may not be suitable for a middle-aged person with ME

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

Tom Kindlon's ME CFS & related page: News, Research and more was looking for recommendations. Published by Tom Kindlon-pwme(tooltip)Only people who manage this Page can see who's published · ndpstrSoeo7a0l115t9gaug0ct3c08g65c1f132h3168li38a7839gl11a17 · From the Irish ME/CFS Association: An enquirer is asking about nursing homes in the greater Dublin area which might be suitable for someone with ME aged in their late forties or early fifties. Any suggestions welcomed. Indeed if you want to suggest specific nursing homes you think would not be suitable in this catchment area, please also let us know. If you prefer, you can message Tom Kindlon or email info at irishmecfs dot org
Ivi ChocIviChoc@mastodon.online
2025-12-01

#PhotoBioModulation #RedLightTherapy #NearInfrared #inflammation #me #cfs #logcovid #MECFS #BrainInflammation #microglia

dr. Jarred Younger on studies with near infrared light to reduce brain inflammation

youtube.com/watch?v=wgxegQ7YJww

FIRST.orgfirstdotorg@infosec.exchange
2025-12-01

📣 The countdown begins! Only 1️⃣ week left until the #CFS for the 2026 Paris Technical Colloquium closes. Submit your talk today! 🔗 go.first.org/lxxWO #cybersecurity #technicalcolloquium

Tom Kindlontomkindlon@disabled.social
2025-12-01

To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice! by Jeffrey Lubell

annfammed.org/content/23/6/570

Screenshot from latest Science for ME weekly update

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

To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice! — Jeffrey Lubell "In this essay, I share my thoughts on why patient and caregiver observations and hypotheses are important and how the medical research field might tap into them to make faster progress toward effective treatments for complex medical conditions."
Tom Kindlontomkindlon@disabled.social
2025-12-01

Stanford author team including Ron Davis

Glymphatic System Dysregulation as a Key Contributor to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

mdpi.com/1422-0067/26/23/11524

Screenshot from latest Science for ME weekly update

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

Glymphatic System Dysregulation as a Key Contributor to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Nemat-Gorgani et al. Hypothesis paper. "With the recent discovery of the glymphatic system providing a mechanism for the removal of metabolic waste products from the brain, primarily during sleep, we were interested in exploring the relationship between GD and symptoms of ME/CFS."
Tom Kindlontomkindlon@disabled.social
2025-12-01

Comprehensive Assessment of Autonomic Nervous System Profiles in Postural Orthostatic Tachycardia Syndrome Among Syncope, Chronic Fatigue, and Post-COVID-19 Patients

mdpi.com/2075-4418/15/22/2824

Screenshot from latest Science for ME weekly update

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

Comprehensive Assessment of Autonomic Nervous System Profiles in Postural Orthostatic Tachycardia Syndrome Among Syncope, Chronic Fatigue, and Post-COVID-19 Patients — Milovanovic et al. "in CFS patients with POTS (both insidious onset and post-COVID-19), CART findings demonstrated a higher prevalence of definite parasympathetic dysfunction. Together with frequent extreme blood pressure variations during HUTT, these findings indicate that in CFS, POTS is predominantly related to parasympathetic dysfunction, accompanied by inadequate short-term baroreceptor control of blood pressure."
Tom Kindlontomkindlon@disabled.social
2025-12-01

"Why I Can't Just Meet You for Dinner"

Article by Fred Rossi on the hard and complex realities of PEM [post-exertional malaise] which are unrecognised by the outside world.

substack.com/home/post/p-17829

Screenshot from latest Science for ME weekly update

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

Article Why I Can't Just Meet You for Dinner A great article at Substack by Fred Rossi on the hard and complex realities of PEM which are unrecognised by the outside world. "They think you’re not trying hard enough. In reality, you’re trying so hard you’re causing yourself harm just to maintain the bare minimum of participation in the world."
Tom Kindlontomkindlon@disabled.social
2025-11-30

New Zealand researcher Les Simpson PhD & I from 1997.

We in the Irish ME/CFS Association @IrishMECFSAssociation arranged 3 talks by him in 1997, 1998 & 2001 & also facilitated him collecting blood samples for his research

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

Photo of 2 men sitting on a couch
Tom Kindlontomkindlon@disabled.social
2025-11-30

An Austrian ME/CFS patient sued against the withdrawal of her allowance. The Vienna Higher Regional Court has ruled in her favour,criticizing the methods of the experts who reviewed the case & dismissed the D-A-CH consensus statement on #MECFS

Translation
www-kleinezeitung-at.translate

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

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