Reporting on ME, ME/CFS, Long Covid, & so on... crowdfund campaign via Berkeley University to secure David Tuller's important work and position for further 6 months @david

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

Screenshot is from the latest Science for ME weekly update

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

Trial by Error: Reporting on ME, ME/CFS, Long Covid, & so on...
New crowdfund campaign via Berkeley University to secure David Tuller's important work and position for further 6 months. The aim is to raise $68,000 by May 5th. 10 years ago Tuller launched Trial By Error in 2015 and his work since then with reporting, investigation, analysis, letters and much more has been invaluable for moving matters forwards.

**ahimsa** @ahimsa_pdx@disabled.social · 1d *

1d *

ahimsa @ahimsa_pdx@disabled.social

I missed this back when it was first published:

"The hermeneutical injustice of ME"

https://www.thereforme.uk/p/the-hermeneutical-injustice-of-me?r=17hcra

When Words Fail

"For me, one of the hardest parts of living with ME was the absence of a clear framework for describing and understanding it. The way I had once made sense of my body no longer applied …

I had no reference points for what I was experiencing."

@mecfs

"Hermeneutical injustice [is] when someone is unable to understand or express an important aspect of their own experience because there is a gap in the shared tools of social interpretation."
- Ella Barnard, #ThereForME

#MEcfs #PwME #ThereForME

Replied in thread

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

Tom Kindlon @tomkindlon@disabled.social

13/

6. Myth: Doctors cannot help people with ME.

Fact: Doctors can help people manage ME symptoms.

https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/

#MyalgicEncephalomyelitis #MEcfs
@mecfs

World ME DayMyth vs FactThe Myalgic EncephalomyelitisEditionFactTreating co-existing conditions and providing medications to address sleep disturbances, pain, and cardiac and neurological issues can offer significant relief. Offering at-home visits, online consultations and palliative care can make a big difference to someone suffering from Severe ME.What facts do you want the world to understand this World ME Day?12TH MAY

Replied in thread

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

Tom Kindlon @tomkindlon@disabled.social

12/

6. Myth: Doctors cannot help people with ME.

Fact: Doctors can help people manage ME symptoms.

https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/

#MyalgicEncephalomyelitis #MEcfs
@mecfs

World DayMyth vs FactThe Myalgic EncephalomyelitisEditionX MythDoctors cannot help people with ME.FactDoctors can help people manage ME symptoms. While there is no cure for ME, there are compassionate ways to help patients manage their symptoms, in addition to pacing to prevent post- exertional malaise.What facts do you want the world to understand this World ME Day?12TH MAY

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

3d *

Tom Kindlon @tomkindlon@disabled.social

A housing project specifically for people with severe ME/CFS, including 24-hour assistance, is being planned in Neunkirchen-Seelscheid

Info in German:
https://sozialhummel.de/wohnprojekt-fuer-schwer-me-cfs-betroffene-in-neunkirchen-seelscheid-interessenten-gesucht/

Some info & discussion in English
https://www.s4me.info/threads/housing-project-for-severely-me-cfs-sufferers-in-neunkirchen-seelscheid-germany-interested-parties-wanted.43639/

Image from latest Science for ME weekly update

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

Germany
A housing project specifically for people with severe ME/CFS, including 24-hour assistance, is being planned in Neunkirchen-Seelscheid . A developer, in collaboration with Sozialhummel, plans to build barrier-free apartments that are optimally tailored to the needs of people with severe ME/CFS. Interested parties can join a waiting list.

Replied in thread

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

Tom Kindlon @tomkindlon@disabled.social

11/

5. Myth: Long COVID is entirely different from ME.

Fact: Many Long COVID patients have symptoms that match ME.

https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/

#MyalgicEncephalomyelitis #MEcfs
@mecfs

World DayMyth vs FactThe Myalgic EncephalomyelitisFactEditionSince the COVID-19 pandemic, researchers have found that a large number of people with persistent Long COVID meet the diagnostic criteria for ME. Many experience Post-Exertional Malaise (PEM) - an extreme worsening of symptoms after even minor physical or mental exertion which is the core symptom of ME. Studies highlight the biological similarities between the two diseases, reinforcing the need for integrated research and clinical approaches for these two conditions as well as other post-infectious syndromes.What facts do you want the world tounderstand this World ME Day?12TH MAY

Continued thread

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

Tom Kindlon @tomkindlon@disabled.social

Article doesn’t highlight sufficiently I think the most important problem of not diagnosing ME/CFS: people are not warned about the dangers of exercise and pushing yourself and the importance of pacing yourself and listening to your body.

#MyalgicEncephalomyelitis #MEcfs
@mecfs

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

Tom Kindlon @tomkindlon@disabled.social

"Why chronic fatigue [CFS] is mistaken for depression: The consequences of misdiagnosis for an invisible illness"

https://rollingout.com/2025/04/20/why-chronic-fatigue-mistaken-depression/

Not bad article on a important topic: pity it keeps calling ME/CFS "chronic fatigue"

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

Distinct characteristics of chronic fatigue
Despite surface similarities, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has several distinguishing features that separate it from depression:

Post-exertional malaise: A defining feature of chronic fatigue involves dramatic energy crashes following minimal physical or mental exertion. This hallmark symptom rarely appears in depression cases.

Physical sensations: ME/CFS patients frequently experience muscle pain, joint discomfort, headaches and flu-like symptoms that aren’t typically associated with depression.

Emotional responses: While depression centers on persistent sadness, hopelessness and feelings of worthlessness, many chronic fatigue patients don’t experience these emotional states until after prolonged illness and its cascading life impacts.

Illness onset: ME/CFS often develops following viral infections or other identifiable triggers, while depression may develop more gradually or in response to psychological factors.

These distinctions often remain unexplored in standard diagnostic processes, particularly when providers have limited familiarity with chronic fatigue syndrome.

Replied in thread

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

Tom Kindlon @tomkindlon@disabled.social

10/

5. Myth: Long COVID is entirely different from ME.

Fact: Many Long COVID patients have symptoms that match ME.

https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/

#MyalgicEncephalomyelitis #MEcfs
@mecfs

World DayMyth vs FactThe Myalgic EncephalomyelitisEditionX MythLong COVID is entirely different fromME.FactMany Long COVID patients have symptoms that match ME.What facts do you want the world to understand this World ME Day?12TH MAY

Replied in thread

**Tom Kindlon** @tomkindlon@disabled.social · 5d

Tom Kindlon @tomkindlon@disabled.social

Myth: Only certain groups of people can develop ME.

Fact: ME affects people of all races, genders, ages, and socioeconomic backgrounds.

https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/

#MyalgicEncephalomyelitis #MEcfs
@mecfs

World ME Day Myth vs Fact The Myalgic Encephalomyelitis Edition Fact The misconception that ME primarily affect certain groups stems from disparities in diagnosis and health access. While about 75% of those affected are women, ME can affect anyone, regardless of age, gender, race or income. In addition, marginalised communities face more challenges getting diagnosed and treated you to bias in the medical system and lack of awareness. What facts do you want the world to understand this World ME Day? Blogpost giving some tips on how to maximise the usefulness of appointments with doctors.

Replied in thread

**Tom Kindlon** @tomkindlon@disabled.social · 5d

Tom Kindlon @tomkindlon@disabled.social

8/
4.
Myth
Only certain groups of people can develop ME.

Fact
ME affects people of all races, genders, ages, and socioeconomic backgrounds.

https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/

#MyalgicEncephalomyelitis #PwME #MEcfs
@mecfs

World Day Myth vs Fact The Myalgic Encephalomyelitis Edition X Myth Only certain groups of people can develop ME. Fact ME affects people of all races, genders, ages, and socioeconomic backgrounds. What facts do you want the world to understand this World ME Day? 12TH MAY

Replied in thread

**Tom Kindlon** @tomkindlon@disabled.social · 5d

Tom Kindlon @tomkindlon@disabled.social

7/
3. Myth: You can exercise your way to recovery from ME.

Fact: Exercise can be dangerous for people with ME.

https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/

#MyalgicEncephalomyelitis #PwME #MEcfs
@mecfs

World Day Myth vs Fact The Myalgic Encephalomyelitis Edition ✓ Fact In the past, graded exercise therapy (GET) was recommended, but after reviewing the evidence, health organisations like NICE in the UK and the CDC in the US have warned against it. Instead, people with ME are encouraged to pace themselves- balancing activity and rest-to avoid deterioration. What facts do you want the world to understand this World ME Day? Photo Credit: Leo Ang/German Association for ME/CFS 12TH MAY

Replied in thread

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

Tom Kindlon @tomkindlon@disabled.social

6/
3. Myth: You can exercise your way to recovery from ME.

Fact: Exercise can be dangerous for people with ME.

https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/

#MyalgicEncephalomyelitis #PwME #MEcfs
@mecfs

World (ME) Day Myth vs Fact The Myalgic Encephalomyelitis Edition X Myth You can exercise your way to recovery from ME. Fact Exercise can be dangerous for people with ME. Unlike other chronic conditions where exercise can help, structured exercise programs often make ME symptoms worse as patients end up pushing themselves too far. What facts do you want the world to understand this World ME Day? Photo Credit: Lea Aring/German Association for ME/CFS 12TH MAY

Replied in thread

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

Tom Kindlon @tomkindlon@disabled.social

5/
Myth: ME is just about feeling tired
Fact: The defining symptom of ME is Post-Exertional Malaise (PEM) – an extreme worsening of symptoms after even minor physical or mental exertion.

https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/

#MyalgicEncephalomyelitis #PwME
@mecfs

World Day 12TH MAY Myth vs Fact The Myalgic Encephalomyelitis Fact Edition Post-exertional malaise makes even basic activities difficult or impossible. Attempting to push through can significantly worsen symptoms and may lead to long-term deterioration. For those with severe ME, even minimal exertion-such as sitting up, light conversation, or sensory stimuli like sound and light-can be intolerable, leaving them extremely disabled and dependent on full-time care. What facts do you want the world to understand this World ME Day?

Replied in thread

**Tom Kindlon** @tomkindlon@disabled.social · Apr 18

Apr 18

Tom Kindlon @tomkindlon@disabled.social

4/
Myth: ME is just about feeling tired
Fact: The defining symptom of ME is Post-Exertional Malaise (PEM) – an extreme worsening of symptoms after even minor physical or mental exertion.

https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/

#MyalgicEncephalomyelitis #PwME #MEcfs
@mecfs