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

Oct 23
🧵
"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
🧵
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
🧵
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
Aug 3
🧵
CW: Distressing topics

“Chronic fatigue, 'mass hysteria', and Dr Melvin Ramsay”

Paywall:


Sympathetic article on Melvin Ramsay, Maeve Boothby-O'Neill, and Edina Slayter-Engelsman.

#MEcfs #PwME #CFS
1/heraldscotland.com/news/24492005.…
2/

On Edina: “It left her bedbound, unable to even shower or use the bathroom, and so sensitive to any kind of sensory stimulation that reading a book or watching the television would be harmful.”

#SevereME #MEcfs #PwME
3/

“Speaking to the BBC prior to her death [from Euthanasia], Ms Slayter-Engelsman compared the experience of ME to being trapped in a spider's web, saying: "Every time you try to get out, the web just gets tighter and tighter around you".

#MyalgicEncephalomyelitis
Read 6 tweets
Jun 11
A new definition for Long COVID that has been launched today by the National Academies in the US


5 pages of highlights from report:


#LongCovid #PwLC #postcovid #postcovid19

1/ nap.nationalacademies.org/resource/27768…
nap.nationalacademies.org/resource/27768…
Image is screenshot of text from first link (too long to include here)
2/
Infographic: Elements of the 2024 NASEM Long COVID Definition


The main page which hosts further links is here, "Examining the Working Definition for #LongCOVID":


#LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC nap.nationalacademies.org/resource/27768…
nationalacademies.org/our-work/exami…
Image is screenshot of text from first link (too long to include here)
3/
Figure S-1 Definition figure: 2024 NASEM Long COVID definition

From:
A new definition for Long COVID that has been launched today by the National Academies in the US


#LongCovid #PwLC #postcovid #postcovid19 nap.nationalacademies.org/cart/download.…
Figure S-1 Definition figure: 2024 NASEM Long COVID definition
Read 4 tweets
Apr 15
🧵
Someone with #MEcfs sent me this set of information they collated on medical gaslighting & said I could share it:

4 Tricks for when doctors gaslight you - Dr. Kaveh LIVE - Medical Secrets (Jul 2023)


#Gaslighting #MedicalGaslighting

1/
2/
The toxic power dynamics of gaslighting in medicine - Sarah Fraser, MSc MD CCFP (May 2021)



#Gaslighting #MedicalGaslightingncbi.nlm.nih.gov/pmc/articles/P…
3/
Gaslighting: What It Is and How to Stop It - Medically Reviewed by Smitha Bhandari, MD on Aug 03, 2022 - Written by Stephanie Watson



#Gaslighting #MedicalGaslightingwebmd.com/mental-health/…
Read 4 tweets

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