Tom Kindlon Profile picture
Oct 6, 2020 7 tweets 2 min read Read on X
[Thread]
Dr Alastair Miller recently made the attached claim.

The results of English #MECFS rehab clinics show recovery was rare & on average people worked less after attending the services

See here
or this thread

#MyalgicE

1/n bmchealthservres.biomedcentral.com/articles/10.11…
s4me.info/threads/dr-ala…
Image
2/n
English #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome rehab clinics:

At 1 year after initial assessment

I have been able to return to work or increase my hours: 18.0%

I have stopped working or reduced my hours: 34.8%

#GradedExerciseTherapy #CBT #MEcfs #CFS #MyalgicE
3/n
English #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome rehab clinics:

At 2- to 5-year follow-up

I have been able to return to work or increase my hours: 23.7%

I have stopped working or reduced my hours: 34.9%

#GradedExerciseTherapy #CBT #MEcfs #CFS #MyalgicE
4/n
#MECFS rehab clinics

At 1 year after initial assessment
Do you think that you are still suffering from CFS/ME? No: 2.8% Uncertain: 10%
Note “no" & "uncertain" would also include those who now consider CFS/ME to be a misdiagnosis; it doesn't mean they are fully healthy
#CFS
5/n
English #MECFS rehab clinics
Do you think that you’re still suffering from CFS/ME?
@ 2 yrs No 5.0% Uncertain 8.8%
@ 3 yrs No 2.4% Uncertain 7.2%
Note “no" & "uncertain" would also include those who now consider CFS/ME to be a misdiagnosis;it doesn't mean they’re fully healthy
6/n
English #MECFS rehab clinics

Do u think that you’re still suffering from CFS/ME?
@ 4 yrs No 6.6% Uncertain 11.3%
@ 5 yrs No 8.2% Uncertain 9.2%
Note “no" & "uncertain" would also include those who now consider CFS/ME to be a misdiagnosis;it doesn't mean they’re fully healthy
7/n
You’d expect some people with #MEcfs to say they were recovered or in remission with time *without* therapy.

Also note recovery rates were low in #PACEtrial Dr Miller refers to with no statistically significant increase for either CBT or GET


#CFStandfonline.com/doi/full/10.10…

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More from @TomKindlon

Mar 21
🧵
"Almost no ME/CFS patients return to work: "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher."



#MEcfs #CFS #PwME

1/ sciencenorway.no/chronic-fatigu… Almost no ME/CFS patients return to work "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher. The Norwegian Labour and Welfare Administration requires ME/CFS patients to go through work-oriented measures in order to be granted disability benefits, which is a challenge for many patients. (Photo: Gorm Kallestad / NTB) Emilie Wee Journalist Published 21 March 2025 - 00:01
2/

“They see [in the research data] that very few of the patients were well enough to work again, even nine years after diagnosis. These are disappointing results, but unfortunately not particularly surprising.”

#MEcfs #PwME
3/

“Many patient stories show that those who try to adapt to the labor market often experience relapse. Working life is largely not adapted for people with low and varying work capacity, says Trude Schei, assistant secretary general of the ME Association.”

#PwME #MEcfs
Read 5 tweets
Mar 5
🧵
"Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical & mental wellbeing, study finds"



Research on people with autoimmune diseases but people with other conditions will sadly be able to relate

#chronicillness

1/ eurekalert.org/news-releases/…News Release 2-Mar-2025 Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds Peer-Reviewed Publication University of Cambridge
2/
“A study involving over 3,000 participants – both patients & clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health & wellbeing and damaged trust in healthcare services”
3/

“Patients who reported that their autoimmune disease was misdiagnosed as psychosomatic or a mental health condition were more likely to experience higher levels of depression and anxiety, and lower mental wellbeing. (contd)”

#psychologisation
Read 12 tweets
Feb 14
🧵
Unusual but sympathetic paper:

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders



#LongCovid #MEcfs

1/ mdpi.com/1660-4601/22/2…Abstract People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighted, and even dismissed by healthcare professionals. We believe that these adversarial interactions and language are more likely to arise when healthcare professionals are confronting complex chronic illnesses without proper training, diagnostic biomarkers, or FDA-approved therapies. These problematic conversations between practitioners a...
2/

Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders



#LongCovid #MEcfs mdpi.com/1660-4601/22/2…Table 1. Never-words, their impact, and suggested alternatives. Never-Words Explanation and Impact Alternative “You don’t look sick”. Many patients may appear healthy, but feel very sick with various symptoms, including fatigue and pain. Please refrain from commenting on their appearance. “You need to stay positive”. Saying this to patients with debilitating symptoms with limited treatment implies that the patient did not stay positive or that the patient’s attitude is to blame for feeling or staying sick. “I know it can feel discouraging to feel so sick, and especially for so long. We will...
@dysclinic @njsmyth 3/

Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders



#PwME #PwLC mdpi.com/1660-4601/22/2…Screenshot of part of Table 1. Never-words, their impact, and suggested alternatives.
Read 14 tweets
Oct 23, 2024
🧵
"Ignored, blamed, & sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal"



There's an audio version of this long but highly recommended article at link

This is a thread with some extracts
#MEcfs #CFS #pwME
1/ theconversation.com/ignored-blamed…The Conversation Search analysis, research, academics… Academic rigour, journalistic flair Arts + CultureBusiness + EconomyEducationEnvironmentHealthPolitics + SocietyScience + TechWorldPodcastsInsights  Photo of somebody lying in bed looking ill  Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal Published: October 21, 2024 10.35am BST  There is a city nearby that we hide from view. Its people are of all ages, ethnicities and classes. What unites them is a disease: all are diagnosed with myalgic encephalomyelitis, or ME.  Ph...
2/

“Worse, when we don’t ignore them, we blame them, telling them they are all free to rise from their beds & wheelchairs, to walk away from the city. Doctors tell them they can free themselves of the disease by changing their belief systems. (contd)”

#MyalgicEncephalomyelitis
3/

“(Contd) Make the effort, they say, and you will regain your health and previous lives.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Read 7 tweets
Oct 1, 2024
🧵
I was impressed by knowledge of the Belgian author of this

Automated English translation:
"When exercise puts your health at risk"


Turns out she is a researcher whose research has been supported by @MEResearchUK

#MEcfs #CFS #PwME #MEcvs #CVS

1/ www-eoswetenschap-eu.translate.goog/psyche-brein/w…
Photo of a woman with a towel around her neck who looks like she had just stopped exercising  Eos Blogs Psyche & Brain  When exercise puts your health at risk  For people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), exercise can leave them bedridden for days afterward.
2/

“What makes PEM [post-exertional malaise] particularly insidious is that symptoms often do not worsen until 24 to 72 hours after exercise. As a result, patients who feel fine immediately after exercise can unknowingly push themselves beyond their limits”

#MEcfs #PwME #CFS
3/
“The well-meaning advice to 'move a bit more', which patients regularly receive, can be counterproductive in their case. Of course, this does not mean people with ME/CFS should remain completely still. Movement remains important, but within the limits indicated by their body”
Read 7 tweets
Sep 11, 2024
🧵
New 24-minute video from @MEActNet & @patientled

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"


I thought this was very good. Great to have a doctor who gets it.

#LongCovid #MEcfs #CFS #PwME #PostExertionalMalaise
1/
Screenshot from a video showing Dr. Yellman (white man with short hair wearing a tie and sweater) sitting in an office speaking to the camera. Text above: Understanding Post-Exertional Malaise with Dr. Brayden Yellman. Text below: #MedEdMonday Four-part video series created by Patient-led Research Collaborative and #MEAction
@MEActNet @patientled @BatemanHorne 2/
From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



I thought this was very good. Great to have a doctor who gets it

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
Image of a person sick in bed  Augmented Symptoms in PEM • - "Flu-like symptoms" (subjective fevers, sore throats, arthralgia, myalgia - Cognitive symptoms (brain fog, word-finding difficulties, reduced concentration) - Insomnia - Headaches - Sensory sensitivity - Orthostatic intolerance  Transcript: So people will feel fevers, sore throats, arthralgia and myagia  Bateman Horne Center
3/
From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



I thought this was very good. Great to have a doctor who gets it

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
The PEM Experience....  - Not uncommon for people experiencing PEM to remain confined to bed for much of the duration of their episode  - May struggle to complete basic ADL's including toileting or preparing food  "If there was a fire in the house, I am not sure I would be able to make it out in time"  It's hard to get up and get dressed.  Bateman Horne Center RESEARCH CLINICAL CARE | EDUCATION ▶ ▶2:32/23:35 Understanding Post-Exertional Malaise - Dr. Brayden Yellman #ME ACTION
Read 17 tweets

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