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Tom Kindlon Profile picture
@TomKindlon
Jun 11 • 4 tweets • 3 min read • Read on X
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
4/
 "Frequencies of new onset symptoms (in #PostCovid)

Among participants with #LongCOVID, the most common symptoms were post-exertional malaise (87%), fatigue (85%), brain fog (64%), dizziness or lightheadedness (62%), GI (59%), & palpitations (57%)."

From pp.46
#PwLC #PASC FIGURE 4 Frequencies of new onset symptoms. A figure that shows the frequency of new onset symptoms. It includes the following text which is a summary of what is in the figure NOTE: Among participants with Long COVID, the most common symptoms were post-exertional malaise (87 percent), fatigue (85 percent), brain fog (64 percent), dizziness or lightheadedness (62 percent), GI (59 percent), and palpitations (57 percent).

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More from @TomKindlon

Tom Kindlon Profile picture
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
Tom Kindlon Profile picture
Mar 29
🧵
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...
3/5
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 Commentary Small sample size With 17 ME/CFS participants, the small sample size impacts the significance and generalisability of study findings. Also, participant numbers varied across assessments, e.g., CPET only involved eight people with ME/CFS. Minimal mention of post-exertional malaise Whilst post-exertional malaise (PEM) was within the inclusion criteria, PEM was not given an in-depth analysis and was briefly mentioned three times in the paper. One-day CPET was conducted as opposed to two-day CPET (the main method for testing PEM). ME RESEARCH U...
Read 5 tweets
Tom Kindlon Profile picture
Oct 4, 2023
🧵
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
@GrachStephanie 3/

(contd.) select CME, and then select CME articles to locate this article online to access the online process. On successful completion of the online test and evaluation, you can instantly download and print your certificate of credit.

#MEcfs #CFS #PwME #MyalgicE #CFSME
Read 29 tweets
Tom Kindlon Profile picture
Sep 1, 2023
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
3/
Read 4 tweets
Tom Kindlon Profile picture
Jul 6, 2023
🧵
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"
3/
Good to see recognition that a patient telling their story might be triggering for them but may not give a good overall picture of their mental health:

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME Orientation and cognition; patients are oriented, but they may show signs of slow thinking, poor attention and short memory and be lost for words; long consultations may elicit increasing cognitive and physical difficulties as the patient tires; on the other hand, some patients may show signs of anxiety and “wired-tiredness”, where they are restless in spite of being very tired physically and mentally. Emotional responses may be triggered as patients go through their histories and common difficulties experienced with their symptoms and lack of validation of their diagnosis and degree of dis...
Read 31 tweets
Tom Kindlon Profile picture
Jan 18, 2023
🧵
"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
3/
“The new NICE guideline for ME/CFS…recognis[es] the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test.”

#mecfs #cfs #neurome #cfsme #myalgice #pwme
Read 26 tweets

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