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Tom Kindlon Profile picture
@TomKindlon
Oct 6, 2020 • 7 tweets • 2 min read • Read on X
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[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

Tom Kindlon Profile picture
Feb 8
🧵
Interview with Bita Nezamdoust - medical sociologist and author of "Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome"

chroniclivingtherapy.com/nezamdoust-mar…

Screenshot from @ChronicLiving1 newsletter

#MEcfs #SevereME @lammas_leaves

1/ x.com/TomKindlon/sta…Bita Nezamdoust - medical sociologist We start 2026 with this interview in which Bita Nezamdoust reflects on her recent publication, looking at how isolated patients use social media. She reflects on how this may help therapists to understand the experiences of people with severe and very severe ME. This patient group is often neglected due to the 'non-standard' approaches needed to search them out and listen to them. Using short communications on social media is an ingenious way to amplify some of the voices and needs of these patients. Bita gave generously of her time in answering my m...
@ChronicLiving1 @lammas_leaves 2/
"As I closely read and coded the tweets, patterns began to emerge around recurring experiences such as:

physical debilitation
social isolation
medical neglect
loss of independence
struggles with disability systems"

#MEcfs #SevereME
@ChronicLiving1 @lammas_leaves 3/
"These themes reflect different but interconnected areas of life where delegitimization plays out. For example, disbelief from clinicians affects access to care.This in turn affects eligibility for disability support, which then shapes economic survival & emotional well-being"
Read 8 tweets
Tom Kindlon Profile picture
Jan 26
🧵
"Why I Can’t Just Meet You for Dinner: The Reality of Post-Exertional Malaise"



Thoughtful blog post which tries to explain postexertional malaise & how those who suffer from it need to be very careful with which activities they do

#PwME #LongCovid
1/ substack.com/home/post/p-17…Why I Can’t Just Meet You for Dinner The Reality of Post-Exertional Malaise Fred Rossi Nov 07, 2025 The conversation always goes the same way. Someone asks if I want to join them for a meal, grab a drink, go to the movies, or some perfectly reasonable social activity that healthy people do without thinking. And when I hesitate, or decline, or try to explain why a Tuesday evening gathering might not work when I’m working Wednesday morning, I can see it in their faces and hear it in their voices: they think I’m making excuses. I’m not making excuses. I’m doing accounting. What PEM Actually ...
2/
He highlights how post-exertional malaise can lead a worsening of the condition which could be permanent.

#MEcfs #LongCovid
3/
“This is what people on the outside don’t understand. When they say “but you’re only working part-time,” they think that means you have all this free time. They don’t understand that the “free time” is actually recovery time. It’s not leisure.”

#spoonie #CFS
Read 7 tweets
Tom Kindlon Profile picture
Apr 21, 2025
🧵
"Why chronic fatigue [CFS] is mistaken for depression: The consequences of misdiagnosis for an invisible illness"



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

#MEcfs #CFS

1/ rollingout.com/2025/04/20/why…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 respons...
2/
 “At first glance, [#CFS] symptoms mirror those of depression,leading to frequent misdiagnosis & inappropriate treatment.This confusion extends beyond simple categorization errors—it fundamentally affects patients’ treatment options,self-perception & access to appropriate care”
3/
 Not convinced this is a characteristic part of ME/CFS:
“Reduced interest in previously enjoyed activities”

Many would love to do “previously enjoyed activities”. Though after they have been sick for a long time, they may look for pleasure in less energy-sapping activities.
Read 4 tweets
Tom Kindlon Profile picture
Mar 21, 2025
🧵
"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
Tom Kindlon Profile picture
Mar 5, 2025
🧵
"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
Tom Kindlon Profile picture
Feb 14, 2025
🧵
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

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