Aras Pranckevičius @aras

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7 posts4 participants0 posts today

**Tom Kindlon** @tomkindlon@disabled.social · 10h

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

Tom Kindlon @tomkindlon@disabled.social

"We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride"

https://thesicktimes.org/2024/11/05/we-set-out-to-make-our-invisible-illness-visible-in-south-africa-with-sick-pride/

Image is from April 2025 AMMES Newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC @chronicillness
@spoonies
@disability
@disabilityjustice
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride
"Those of us who are so severely disabled by ME and Long COVID that we are rarely able to leave our houses — or even our beds — suffer from an invisibility so total, most people are completely unaware of our
existence. We may not have strength in our bodies, but we certainly have
strength in numbers… We don’t have to be passive, when we are this
massive"

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

Tom Kindlon @tomkindlon@disabled.social

"Cards2Warriors has a special program called Happy Mail, where they send snail mail cards to those [who are ill] who need encouragement & cheer"

Links:
https://www.cards2warriors.org/
https://www.cards2warriors.org/happy-mail

Image from Institute for Neuro-Immune Medicine e-bulletin

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

**Sp4rkR4t** @sp4rkr4t@mastodon.scot · 2d

Sp4rkR4t @sp4rkr4t@mastodon.scot

Woke at 5am, #visible illness tracker gave me a 1/5 for the day but felt clear enough apart from quite a lot of bone pain so went to shops for soap & bonus cakes. Got home to alerts I've used all my spoons for the day and a feeling like I'm sinking into the ground, going to prop myself up on the bed for the day now and try out these controller controls on Satisfactory.
I did try one of the cakes and they are mindblowingly awesome though so it was worth it. #MECFS #MPN #invisibleillness #crieff

Continued thread

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

Tom Kindlon @tomkindlon@disabled.social

3/
"Lancet Letter Exchange on Claimed Success of "Persistent Physical Symptoms" Trial Despite Clinically Insignificant Findings" by David Tuller

https://virology.ws/2025/04/04/trial-by-error-lancet-letter-exchange-on-claimed-success-of-persistent-physical-symptoms-trial-despite-clinically-insignificant-findings

Image is from latest Science for ME weekly update

#chronicillness #invisibleillness
@david

Lancet Letter Exchange on Claimed Success of "Persistent Physical Symptoms" Trial Despite Clinically Insignificant Findings
David Tuller and colleague Joan Crawford wrote a letter to the Lancet raising criticism of a paper by Burton et al on psycho-behavioral intervention for "persistent physical symptoms". Tuller/Crawford: "Patients desire resolution of symptoms and recovery of functions. The trial did not achieve this result. Post-intervention, participants continue to have an impaired quality of life and poor experiences of health care."
Burton et al reply: "Encouraging health professionals to proclaim “we do not know what is causing symptoms” in response to persistent physical symptoms, as Crawford and Tuller recommend, underestimates the explanatory power of recent symptom science and is likely to perpetuate the frustration and hopelessness of both clinicians and patients, which is all too common in this field."

**Tom Kindlon** @tomkindlon@disabled.social · 6d

Tom Kindlon @tomkindlon@disabled.social

"New Study Documents Iatrogenic Harm from Perceived Psychosomatic and Psychiatric Misdiagnoses of Rheumatic Diseases" by @david

https://virology.ws/2025/03/31/trial-by-error-new-study-documents-iatrogenic-harm-from-perceived-psychosomatic-and-psychiatric-misdiagnoses-of-rheumatic-diseases

Image is from latest Science for ME weekly update

#chronicillness #invisibleillness
@chronicillness
@spoonies
@mecfs
#MEcfs

New Study Documents Iatrogenic Harm from Perceived Psychosomatic and Psychiatric Misdiagnoses of Rheumatic Diseases
A walkthrough of the paper "'I still can't forget those words': mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses" - Sloan et al. 80% of those who had received a psychosomatic misdiagnoses reported that it had damaged their self worth. Tuller comments that the iatrogenic harm of the MUS approach is incalculable.

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

Apr 1

Tom Kindlon @tomkindlon@disabled.social

Trial By Error: New Study Documents Iatrogenic Harm from Perceived Psychosomatic and Psychiatric Misdiagnoses of Rheumatic Diseases
31 March 2025
By David Tuller, DrPH

https://virology.ws/2025/03/31/trial-by-error-new-study-documents-iatrogenic-harm-from-perceived-psychosomatic-and-psychiatric-misdiagnoses-of-rheumatic-diseases/

#chronicillness @chronicillness @spoonies #spoonie #autoimmune #InvisibleIllness

virology.ws · Mar 31Trial By Error: New Study Documents Iatrogenic Harm from Perceived Psychosomatic and Psychiatric Misdiagnoses of Rheumatic Diseases | Virology BlogBy David Tuller, DrPH In 2020, I wrote a post about a paper, published by the journal Rheumatology Advances in Practice, called “Medically explained symptom ...

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · Mar 20

Mar 20

Tom Kindlon @tomkindlon@disabled.social

“Clinicians might say to a person with a hidden illness, “You don’t look sick.” We explain that a patient can feel very sick despite looking healthy. Instead, we simply recommend refraining from commenting on a person’s appearance.”

#hiddenillness #invisibleillness
@spoonies @mecfs @longcovid @chronicillness

**Chronic Illness Humor Funny** @ChronicIllnessHumor@mastodon.social · Mar 18

Mar 18

Chronic Illness Humor Funny @ChronicIllnessHumor@mastodon.social

source - flexiblegonewrong on insta

Living with chronic illness...

what most people think it is "being sick"

what it actually is - being 'sick', social isolation, learning med terminology, navigating the healthcare system, planning/managing appointments, life unpredictability and accepting change, stress of financial costs

source - flexiblegonewrong on insta

#chronicillness #chronicallyill #chronichealth

**Chronic Illness Humor Funny** @ChronicIllnessHumor@mastodon.social · Mar 14

Mar 14

Chronic Illness Humor Funny @ChronicIllnessHumor@mastodon.social

"the courage it took to get get out of bed each morning to face the same things over and over was enormous." -Charles Bukowski'

#mentalhealth #mentalillness #chronichealth

**Tom Kindlon** @tomkindlon@disabled.social · Mar 12

Mar 12

Tom Kindlon @tomkindlon@disabled.social

(US) Telehealth Update

Image from Massachusetts ME/CFS & FM Association March 2025 e-newsletter:
https://massmecfs.org/newsletters/919-2025-03-march-newsletter

@chronicillness
@spoonies
@disability
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@longcovid #LongCovid #MEcfs
@mecfs

Telehealth Update

There has been some confusing media reporting of Medicare coverage for telehealth in the last few weeks. Here's a quick explainer.

During the pandemic, Congress expanded telehealth services covered by Medicare. This benefit has been important for those with ME/CFS and other debilitating illnesses, allowing them to see their physicians without expending valuable energy or risking infection. This expanded coverage was a temporary measure, set to expire at the end of 2024. There was significant bipartisan support to extend this coverage for another two years in the next budget, but because that budget bill failed, and the country is operating under a short-term stop-gap funding bill, Medicare coverage for telehealth is set to expire on March 31st.

With current bipartisan support, another temporary extension is likely under whatever budget measures lawmakers agree to this month. The hope is that Medicare coverage of telehealth will be made permanent. If this coverage is important to you, tell your elected representatives. See the links in the Advocacy section to find how to contact your Congressional representative.

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · Mar 6

Mar 6

Tom Kindlon @tomkindlon@disabled.social

11/

“We need more clinicians to understand how a misdiagnosis of this sort can result in long-standing mental and emotional harm and in a disastrous loss of trust in doctors.”

#ChronicDisease #Hiddenillness
@chronicillness @spoonies @lupus @mecfs @fibromyalgia #chronicillness #mecfs #longcovid #invisibleillness

**Tom Kindlon** @tomkindlon@disabled.social · Mar 6

Mar 6

Tom Kindlon @tomkindlon@disabled.social

From @meresearchuk

Researchers have have provided recommendations for alternative, preferred phrasing which they hope can improve chronic illness care through “compassionate, encouraging, and non-judgmental language”.

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