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Tom Kindlon Profile picture
Tom Kindlon
@TomKindlon
With ME 35 years (30 yrs severe). 95% of posts on #MEcfs/#LongCovid/#chronicillness. 26 publications in peer-reviewed journals. @IrishMECFSAssoc trustee 27 yrs
Oct 23 • 7 tweets • 2 min read
🧵
"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
Oct 1 • 7 tweets • 2 min read
🧵
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
Sep 11 • 17 tweets • 9 min read
🧵
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
Aug 3 • 6 tweets • 1 min read
🧵
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
Jun 11 • 4 tweets • 3 min read
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)
Apr 15 • 4 tweets • 2 min read
🧵
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…
Mar 29 • 5 tweets • 3 min read
🧵
NIH ME/CFS deep phenotyping study – summaries and infographics



#MEcfs #CFS #PwME @MEResearchUK

1/5 meresearch.org.uk/nih-me-cfs-dee…
NIH ME/CFS Deep Phenotyping Study Key Findings (in ME/CFS cohort) Immune dysregulation Differences in B-cell and T-cell numbers/markers Metabolic differences Differences in certain metabolites involved in key physiological roles Reduced cardiorespiratory capacity Lower peak respiratory rate, heart rate, and oxygen consumption during cardiopulmonary exercise testing (CPET), and lower anaerobic threshold Sex-based differences in gene expression Often immune and energy production related Microbiome dysbiosis Differences in microbiome composition and species diversity Autonomic Dysf... 2/5
NIH ME/CFS deep phenotyping study – summaries and infographics



#MEcfs #CFS #PwME meresearch.org.uk/nih-me-cfs-dee…
NIH ME/CFS Deep Phenotyping Study Differences in Key Findings (in ME/CFS cohort) catecholamine-related molecules Whilst dopamine and norepinephrine (catecholamines) did not differ between groups, there were differences in certain related molecules "Altered effort preference" Individuals with ME/CFS were less likely to choose harder tasks during the Effort-Expenditure for Rewards Task Decreased activity in brain area correlated with lower grip task performance: Reduced hand grip task performance correlated with decreased activity in the temporal-parietal junction of the brai...
Oct 4, 2023 • 29 tweets • 7 min read
🧵
New:
"Diagnosis and Management of #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome"

Free full text:


New, sympathetic guidelines. Have some status as in Mayo Clinic Proceedings & are eligible for CME

#MedEd #MEcfs #CFS #PwME

1/ mayoclinicproceedings.org/article/S0025-…
CONCISE REVIEW FOR CLINICIANS| VOLUME 98, ISSUE 10, P1544-1551, OCTOBER 2023 Download Full Issue Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Stephanie L. Grach, MD, MS Jaime Seltzer, MS Tony Y. Chon, MD Ravindra Ganesh, MD, MBBS Open AccessDOI:https://doi.org/10.1016/j.mayocp.2023.07.032 Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its significant overlap with the post-COVID syndrome (long COVID or post-acu... @GrachStephanie 2/
Method of Participation: In order to claim credit, participants must complete the following:

1 Read the activity
2 Complete the online CME Test & Evaluation. Participants must achieve a score of 80% on the CME Test. One retake is allowed.
Visit (contd)mayoclinicproceedings.org
Sep 1, 2023 • 4 tweets • 2 min read
New from @OxMEDiscovery group:
Developing a Blood Cell-Based Diagnostic Test for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome Using Peripheral Blood Mononuclear Cells

Free


Funding from @MEAssociation; samples from @mecfsbiobank

#PwME #MEcfs #CFS
1/ onlinelibrary.wiley.com/doi/10.1002/ad…
Screenshot of abstract 2/
"These results demonstrate Raman profiles of blood cells can distinguish between healthy individuals, disease controls, and ME/CFS patients with high accuracy (91%), & can further differentiate between mild, moderate, and severe ME/CFS patients (84%)."

#MEcfs #CFS #PwME
Jul 6, 2023 • 31 tweets • 7 min read
🧵
Extracts from:

"European Network on #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, & Care of People with ME/CFS in Europe (2021)"
which I thought was good

Free:


#MEcfs #CFS #PwME
1/ mdpi.com/1648-9144/57/5…
Abstract Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) has received funding from the European Cooperation in Science and Technology (COST)—COST action 15111—from 2016 to 2020. The main goal of the Cost Action was to assess the existing knowledge and experience on health care delivery for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in European countries, and to enhance coordinated research and health care provision in this field. We report our findings and m... 2/
Good to see if Fukuda are to be used, they make this recommendation:

"Fukuda criteria may also be used as a screening tool for diagnosis in clinical practice, but we recommend only cases with post-exertional malaise (optional in that definition), are included for diagnosis"
Jan 18, 2023 • 26 tweets • 23 min read
🧵
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec 2022)

2 of 4 authors are MDs

Free
mdpi.com/2227-9032/10/1…

I thought this was very good. Will post extracts.
#MEcfs #CFS #MedEd
1/ Screenshot of abstract 2/
My overview:

Paper has lots of useful points & also helpful overall to show how the NICE guidelines for ME/CFS have changed dramatically in the UK from the 2007 version, with the updated approach being much more sympathetic regarding helping patients.

#MyalgicE #PwME #CFSME
Oct 26, 2022 • 7 tweets • 7 min read
🧵
12-page report on "International Conference
ME/#CFS & #LongCOVID – Treatment & Rehabilitation"

omt.org/wp-content/upl…

Conference website:
omt.org/me-cfs-long-co…

I found the report good though I'd be surprised if some annoying stuff hadn't been said by someone

#MEcfs
1/ 2/
"[As well as post-exertional malaise] other common symptoms of #LongCOVID & ME/#CFS include fatigue, cognitive difficulties, dysautonomia, reduced tolerance to physical +/or cognitive exertion, brain fog, unrefreshing sleep, pain & immune system symptoms"

#MEcfs #PostCovid
Oct 5, 2022 • 12 tweets • 14 min read
🧵
“What Is #LongCOVID—and How Are We Going to Solve It? This potentially life-altering post-viral syndrome may have affected as many as 23 million Americans (and counting)”

Contains quite a bit of discussion about #MEcfs

prevention.com/health/health-…

#CFS #PwLC #PwME #CFSME

1/ Image 2/
“We’re starting to gain more understanding of what’s driving #longCOVID & who is most at risk, & the more we understand, the more it will help us get a grip on similar chronic illnesses, like #MECFS, that have been largely ignored for far too long” - @VirusesImmunity

#CFD
Jul 29, 2022 • 11 tweets • 7 min read
🧵
Press release for new Canadian research paper:

“Histamine-producing gut bacteria can trigger chronic abdominal pain. The discovery has been named Klebsiella aerogenes, the McMaster-Queen (MQ) strain”

sciencedaily.com/releases/2022/…

#IrritableBowelSyndrome #IBS #IrritableBowel

1/ 2/
“The culprit is what has now been named Klebsiella aerogenes, the McMaster-Queen (MQ) strain, identified in up to 25 per cent of gut microbiota samples from patients with #IBS. Researchers examined stool microbiota samples from both Canadian and American patient cohorts”
Jul 27, 2022 • 11 tweets • 10 min read
🧵
“Israeli finding may make hard-to-diagnose #fibromyalgia easy to confirm:The chronic pain condition can be detected based on analysis of gut microbiome,scientists say in peer-reviewed research,potentially paving way for objective diagnosis,treatment”
timesofisrael.com/israeli-findin…
1/ 2/
“Many medical professionals have been eager for an objective diagnostic method [for #Fibromyalgia], both for practical reasons and also to rebuff those who doubt the genuineness of the condition”

#Fibro #FM #FMS
Jul 21, 2022 • 17 tweets • 19 min read
🧵
Some extracts from “The politics underpinning the neglect of people with ME/#CFS” which summarises her paper “Towards a critical psychology of #chronicfatiguesyndrome: #biopsychosocial narratives & UK welfare reform” by @JoElizaHunt

mecentraal.wordpress.com/2022/06/19/the…

#MEcfs #PwME

1/ 2/
 “The [#biopsychosocial] model has been used as psychosocial model, to re-frame chronic health conditions (particularly those surrounded by medical controversy or uncertainty) into psychosocial entities, allegedly amenable to psychosocial healthcare interventions (contd)”

#BPS
Jul 12, 2022 • 14 tweets • 13 min read
🧵
Press release for New Zealand paper:

“New research provides insight into Long COVID and ME: Researchers have uncovered how post-viral fatigue syndromes, including #LongCOVID, become life-changing diseases & why patients suffer frequent relapses”

#MEcfs #CFS #PwME #PwLC

1/ 2/
“Arising commonly from a viral infection, #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (#ME/#CFS), is known to cause brain-centered symptoms of neuroinflammation, loss of homeostasis, brain
fog, lack of refreshing sleep, & poor response to even small stresses”

#MEcfs
Jul 11, 2022 • 5 tweets • 6 min read
🧵
“Scottish Government backs NICE guideline”

actionforme.org.uk/news/scottish-…

“In December 2021, the Scottish Government commissioned Blake Stevenson Ltd to engage with stakeholders…to gather
their views on the NICE guideline on #ME/#CFS”

#MEcfs #PwME #ChronicFatigueSyndrome

1/ 2/
“For this independent stakeholder review, a total of 37 stakeholders contributed. This consisted of 14 clinicians, 10 third sector #ME/#CFS organisations/academics & 13 people with lived experience of #MECFS,
(contd.)”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME
Jun 25, 2022 • 4 tweets • 7 min read
New from Japan
“Clinical Characteristics of #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (#ME/#CFS) Diagnosed in Patients with #LongCOVID”
mdpi.com/1648-9144/58/7…
“The overall prevalence rate of ME/CFS [in #LongCovid] diagnosed by three sets of #MECFS criteria…was 16.8%”
1/ 2/
 “most frequent symptoms in #ME/#CFS patients were general fatigue & post-exertional malaise (89.4% of patients), headache (34.0%), insomnia (23.4%), dysosmia (21.3%) & dysgeusia (19.1%). Dizziness, chest pain, insomnia & headache were characteristic symptoms related to #MECFS”
Jun 24, 2022 • 4 tweets • 7 min read
[Thread]
It's 3rd anniversary of our paper
"Monitoring treatment harm in #MyalgicEncephalomyelitis / #CFS: A freedom-of-information study of NHS specialist centres in England"

journals.sagepub.com/doi/abs/10.117…
Hopefully it will influence, among other things, #LongCovid clinics

#MEcfs
1/n 2/
Summary article for laypeople:
"Trial By Error: NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds" (June 2019)

virology.ws/2019/07/16/tri…

#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Jun 22, 2022 • 10 tweets • 18 min read
🧵
New Zealand:
“Scientists studying potential link between [#ChronicFatigueSyndrome] & #longCovid struggle for funding”

stuff.co.nz/national/healt…

On Prof Tate & his research team. He seems like the sort of scientist we really want in field.

#MEcfs #PwME #MyalgicE #CFS #CFSME
1/ 2/
“A small Dunedin-based team of researchers are critical to
understanding fatigue disease in New Zealand, but they might not be
around in another year.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralSyndrome #PVFS #LongCovid #MEcfs #CFS #PwME #PwLC #MyalgicE