ME Association
ME/CFS Research Published 26 September – 2 October 2023
There have been eight new ME/CFS studies and 24 new Long Covid studies this week.
We have highlighted one of the ME/CFS studies in more detail below:
https://meassociation.org.uk/zkha
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LongCovid @3a447f2a@4183a04c
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“(Contd) Physical activity, cognitive overexertion, and sensory overload may all trigger PEM. It may take a person with ME/CFS days, weeks, or even months to return to previous baseline after PEM.1,7”
#MEcfs #CFS #PwME
@4183a04c@3a447f2a
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“It has been reported that patients with ME/CFS have impaired oxygen extraction on cardiopulmonary exercise testing in proportion to the severity of their symptoms, with both oxygen extraction and workload being decreased on the second day of 2-day cardiopulmonary exercise testing.8,9 (contd)”
@4183a04c #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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“The pathognomonic symptom of ME/CFS is post-exertional malaise (PEM) or post-exertional symptom exacerbation. Post-exertional malaise is a flare in symptoms or the appearance of new symptoms after exertion, often manifesting after a characteristic 24-hour delay; however, 12 to 48 hours is common. (contd)”
@4183a04c@3a447f2a #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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“(Contd) Physical activity, cognitive overexertion, and sensory overload may all trigger PEM. It may take a person with ME/CFS days, weeks, or even months to return to previous baseline after PEM.1,7”
#MEcfs #CFS #PwME
@4183a04c@3a447f2a
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“Whereas the exact cause of ME/CFS is unknown, dysfunction in the neurologic, immunologic, endocrinologic, cardiovascular, and metabolic systems has been found in people with ME/CFS and #postCOVIDsyndrome.1,4, 5, 6 Research is underway to identify diagnostic markers and therapeutic targets.”
@4183a04c@3a447f2a
#LongCovid #PwLC #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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“The pathognomonic symptom of ME/CFS is post-exertional malaise (PEM) or post-exertional symptom exacerbation. Post-exertional malaise is a flare in symptoms or the appearance of new symptoms after exertion, often manifesting after a characteristic 24-hour delay; however, 12 to 48 hours is common. (contd)”
@4183a04c@3a447f2a #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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“There has been increased interest in ME/CFS recently because of its significant overlap with the #postCOVIDsyndrome (#longCOVID or post-acute sequelae of COVID), with several studies estimating that half of patients with #postCOVID syndrome fulfill ME/CFS criteria.4”
@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @3a447f2a
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid
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“Whereas the exact cause of ME/CFS is unknown, dysfunction in the neurologic, immunologic, endocrinologic, cardiovascular, and metabolic systems has been found in people with ME/CFS and #postCOVIDsyndrome.1,4, 5, 6 Research is underway to identify diagnostic markers and therapeutic targets.”
@4183a04c@3a447f2a
#LongCovid #PwLC #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection.1 It is common and debilitating, with a prepandemic population-based prevalence of 1 to 2.5 million in the United States alone and a lower quality of life on average than multiple sclerosis, chronic kidney failure, or congestive heart failure.1, 2,”
@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
7/
“There has been increased interest in ME/CFS recently because of its significant overlap with the #postCOVIDsyndrome (#longCOVID or post-acute sequelae of COVID), with several studies estimating that half of patients with #postCOVID syndrome fulfill ME/CFS criteria.4”
@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @3a447f2a
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid
6/
“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection.1 It is common and debilitating, with a prepandemic population-based prevalence of 1 to 2.5 million in the United States alone and a lower quality of life on average than multiple sclerosis, chronic kidney failure, or congestive heart failure.1, 2,”
@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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 www.mayoclinicproceedings.org, select CME,& then select CME articles to locate this article online to access the online process. On successful
completion of the online test & evaluation, you can instantly download & print your certificate of credit
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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 www.mayoclinicproceedings.org, select CME,& then select CME articles to locate this article online to access the online process. On successful
completion of the online test & evaluation, you can instantly download & print your certificate of credit
From ME Research UK:
We are delighted to announce that we have awarded funding to Dr Eliana Lacerda at @LSHTM, and Prof. Geraldine Cambridge @ucl for a new project exploring patterns of antibodies in ME/CFS. Read more: meres.uk/lacerda061 & full details meres.uk/lacerda061inf
@4183a04c #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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They will use unique immunoprofiling technology (the Krex Syngenics platform, which has been developed specifically to search for new disease biomarkers) to describe the pattern of antibodies in these samples, and their analysis will be focused on 1,600 proteins which have roles in metabolism, immunology and neurology, and which may therefore be relevant to ME/CFS.
@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Effect of monovalent #COVID19 vaccines on viral interference between #SARSCoV2 and several DNA viruses in #longCOVID syndrome
https://shorturl.at/aiw45
“[T]he results…provide the first demonstration of reactivation of several DNA viruses after SARSCoV2 infection (viral cross-talk or interference). We further show the interruption of this viral cross-talk by anti-SARS-CoV-2 vaccination in patients with long #COVID syndrome”
@3a447f2a #PwLC #LC #postcovid
#COVIDー19 #COVID19 #novid
Vaccine Effectiveness Against Long COVID in Children: A Report from the #RECOVER EHR Cohort
https://shorturl.at/ryDU3
“This large retrospective study shows a moderate protective effect of #SARSCoV2 vaccination against #longCOVID. The effect is stronger in adolescents, who have higher risk of long #COVID, and wanes over time”
#LongCovidKids @3a447f2a
#PwLC #PostCovidSyndrome #LC #postcovid @e774e44d
#COVIDー19 #COVID19 #COVID_19 @e3942352 #novid #CovidIsNotOver
The importance of patient-partnered research in addressing long #COVID: Takeaways for biomedical research study design from the #RECOVER Initiative’s Mechanistic Pathways taskforce
https://shorturl.at/qtwCT
“We emphasize the challenges of balancing urgency with scientific rigor. We recognize the importance of such partnerships in addressing post-acute sequelae of #SARSCoV2 infection (#PASC), which includes ‘#longCOVID,’ through contrasting objective & subjective narratives”
@3a447f2a
Long #COVID quality of life and healthcare experiences in the UK: a mixed method online survey
https://shorturl.at/krMO7
“Within our sample of 132 people living with #longCOVID, the findings highlight that individuals are being severely impacted by their symptoms & are unable to or limited in participating in their daily activities, reducing quality of life”
@3a447f2a #PwLC #PostCovidSyndrome #LC #postcovid @e774e44d #COVID19 #COVID_19 #SARSCoV2 @e3942352 #novid
“No evidence for neuronal damage or astrocytic activation in cerebrospinal fluid of Neuro-COVID-19 patients with long-term persistent headache”
https://shorturl.at/ktHR5
“[O]ur pilot study of CSF markers indicates that persistent post-COVID-19 headache is not a sign of underlying neuronal damage or glial activation.”
@3a447f2a
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid @e774e44d
From Malcolm Bailey of #MEAction Network UK:
"NICE have now shared with us that they submitted their own rebuttal paper direct to the JNNP* and are awaiting a response"
*Anomalies in the review process & interpretation of the evidence in the NICE guideline for (#CFS & ME)"
#MEcfs #PwME @4183a04c
Neutrophil extracellular traps and long COVID
https://www.frontiersin.org/articles/10.3389/fimmu.2023.1254310/full
“In this review, we discuss the emerging role of neutrophil extracellular traps (NETs) in the persistent inflammatory response observed in #longCOVID patients”
@3a447f2a
#PwLC #PostCovidSyndrome #LC #postcovid @e774e44d
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @e3942352 #novid #CovidIsNotOver
Impact of #LongCovid on the school experiences of children and young people: a qualitative study
https://bmjopen.bmj.com/content/13/9/e075756
“Attending school (in-person or online) with #LC
is extremely difficult; even a gradual return required CYP to balance the impact of being at and engaging with school, with the need to manage symptoms to prevent relapse. Often this meant prioritising school and rest over other aspects of their lives.”
#LongCovidKids @3a447f2a #PwLC #postcovid #postcovid19
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"Recommendations for schools and healthcare professionals supporting CYP [children and young people] with Long Covid (LC)"
Similar recommendations could be made with regard to ME/CFS
@3a447f2a #LongCovidKids #LongCovid #PwLC #postcovid #postcovid19 #LC #MEcfs #CFS #PwME #YPWME #YPWMEs #YPWC #YPWCs @4183a04c
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #COVID19 #COVID #COVID_19 #SARSCoV2 @e3942352 #novid #CovidIsNotOver #COVIDBrain
https://assets.disabled.social/media_attachments/files/111/167/724/884/878/341/original/e2acf198867b21f5.png
SARS-CoV-2 infection triggers pro-atherogenic inflammatory responses in human coronary vessels
https://shorturl.at/brw25
“Here we report #SARSCoV2 viral RNA is detectable and replicates in coronary lesions taken at autopsy from severe #COVID19 cases.”
“SARS-CoV-2 entry was increased in cholesterol-loaded primary macrophages & dependent, in part, on neuropilin-1”
@e774e44d
#COVIDー19 #COVID #COVID_19 @e3942352 #novid #CovidIsNotOver @3a447f2a
#LongCovid #PwLC #LC
Cardiovascular autonomic dysfunction in “#LongCOVID”: pathophysiology, heart rate variability, & inflammatory markers
https://shorturl.at/dnGL4
“The objective of this review was to provide information on long-term cardiovascular autonomic dysfunction in patients with Long #COVID & its impact on morbidity & mortality in this patient population”
@3a447f2a #PwLC #PostCovidSyndrome #LC #postcovid @e774e44d #COVIDー19 #COVID19 #COVID_19 #SARSCoV2 #novid #CovidIsNotOver #CovidBrain
Distinguishing features of #LongCOVID [LC] identified through immune profiling
“In summary, significant biological differences were identified between participants with #LC and demographically and medically matched CC and HC participants, validating extensive reports of persistent symptoms by various individuals with LC and patient advocacy groups”
https://shorturl.at/auBP3@3a447f2a
#PwLC #postcovid @e774e44d
#COVID19 #COVID #COVID_19 #SARSCoV2 @e3942352 #novid
Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire
https://www.preprints.org/manuscript/202309.2091/v1
The authors have developed a new questionnaire to measure the functional capacity in ME/CFS. It covers eight domains and activity types and queries how these affect a patient's ability to function and do other activities.
@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Long read sequencing characterises a novel structural variant, revealing underactive AKR1C1 with overactive AKR1C2 as a possible cause of unexplained severe fatigue
Detailed genetic study of a patient with ME/CFS found a novel structural variant: "The DNA inversion appears to increase the expression of AKR1C2 while limiting AKR1C1 activity, resulting in a relative increase of inhibitory neurosteroids & impaired progesterone metabolism”
https://shorturl.at/awAF4
#MEcfs #CFS #MyalgicE #PwME
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Bayesian Statistics Improves Biological Interpretability of Metabolomics Data from Human Cohorts
"We use metabolomics data from three independent human cohorts that studied plasma signatures of subjects with [ME/CFS)]."
Differences found included compounds related to diet and medication in people with ME/CFS, and (contd)”
https://www.mdpi.com/2218-1989/13/9/984@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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ME Association Statement
Oslo Chronic Fatigue Consortium 'New Hope' is "More Unhelpful Nonsense"!
"This latest effort from Norway appears to confirm that a concerted effort is underway from a handful of professionals – some of whom have clear conflicts of interest – that are once again trying to self-aggrandise at the expense of people who have been maligned and stigmatised."
https://tinyurl.com/5y8zktev
@4183a04c
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Science
"Anthony Fauci on becoming the ‘devil’ and a warning for his successor"
Interview with Anthony Fauci, former head of the National Institute of Allergy and Infectious Diseases (NIAID). He mentions "myalgic encephalitis/chronic fatigue syndrome" (sic) briefly.
https://www.science.org/content/article/anthony-fauci-becoming-devil-and-warning-his-successor
@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Norway
A research project (Tjenesten og Meg) on ME patient's meeting with the health care services has ended after five years. Results were presented at a seminar this week.
A short report with a summary of the project was released and several academic publications are one their way. In short the health care services are not offering useful measures for this patient group, and even lead to deterioration.
@4183a04c
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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A research project on ME/CFS and mitochondrial function has received £147000 in funding from Action for ME. The project will try to identify factors in the blood of patients that may be responsible for disturbing mitochondrial function.
https://www.actionforme.org.uk/news/first-clare-francis-research-fellowship-awarded/@4183a04c
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
The German Federal Ministry of Education and Research (BMBF) has published a new call '"to promote interdisciplinary collaborations to research the pathomechanisms of #myalgicencephalomyelitis / #chronicfatiguesyndrome (ME/CFS)." The aim is to research the pathomechanisms of post-infectious ME/CFS in more detail.
Google English translation:
https://shorturl.at/egmpU@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyE #ME #millionsmissing #CFSME #CFIDS @84216450
New Zealand Evidence-based management of #LongCOVID
The Health Research Council has awarded a NZD 1.4m grant for a 3-year project. The multidisciplinary team includes immunology, epidemiology, & patient co-design expertise, aiming to provide diagnostics & evidence-based guidelines for primary care
https://www.hrc.govt.nz/resources/research-repository/evidence-based-management-long-covid
#PwLC #LC #postcovid @e774e44d@3a447f2a
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2
CBS News: “Long COVID has affected nearly 7% of American adults, CDC survey data finds”
https://www.cbsnews.com/news/long-covid-americans-new-cdc-survey-data/
Includes a 6-minute video segment (presenter discusses topic with a doctor) plus separate text article
@3a447f2a
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid @e774e44d
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @e3942352 #novid #CovidIsNotOver
Danish newspaper B.T. writes about the terrible story to #severeME sufferer Morten Brandt who recently passed. Due to this disease being viewed as a"functional disorder" in Denmark, Morten was refused help and advised to go for a walk when he no longer was able to control his muscles or eat.
https://tinyurl.com/yc8pbb4e@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS
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The newspaper writes that during the last year they have been in contact with more than 200 carers and patients who tell the same story about failure from the Danish health system leading to deterioration for the patients.
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS @4183a04c
"a gradual and controlled approach to increasing activity is crucial for rehabilitation".
From:
Chronic fatigue syndromes: real illnesses that people can recover from
https://www.tandfonline.com/doi/full/10.1080/02813432.2023.2235609
There is nothing controlled or gradual about how you are supposed to behave after LP. The 2 approaches are diametrically different, you basically can't support both!
@4183a04c
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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GET proponents claim that harms from GET are from not doing it correctly but with Lighting Process there is a free for all about how one behaves after it. You are basically signalling you are not truly concerned about the safety of patients if you promote LP.
@4183a04c #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
The Norwegian Chief of Defence is married to Linn Therece Kristoffersen who suffers from ME, and has written an honest and moving opinion piece in a medical newspaper about having to adjust to a very different life. He calls those who are living with ME sufferers to get more involved with the cause, gain more knowledge and raise awareness.
Google English translation:
https://shorturl.at/dFQ49@4183a04c
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE
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There has been an influx onto b l u e s k y in the last few days probably largely thanks to Julie Rehmeyer's initiative. I've reached 250 followers in 3 days.
Her latest update today: "Morning report: 1100 codes now in the hands of the chronic illness community!"
@3567457b@04c95879@4183a04c@3a447f2a #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
Emerge Australia Research Digest (099)
"We highlight the discovery of WASP3, a key protein linked to exercise intolerance in ME/ #CFS. We also explore the use of health survey tools to better convey the burden of #MECFS in Australia...we delve into the analysis of plasma samples, identifying promising metabolites for diagnosing #LongCOVID ."
The digest concludes with discussing 2 media articles
https://www.emerge.org.au/researchdigest/research-digest-28-9-2023/@4183a04c
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME @3a447f2a
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This journalist has also now told me they would be interested in hearing of people with #LongCovid made worse by other programs that are somewhat similar e.g. Gupta. I talked to them for 20 minutes yesterday. An interesting & important project
@3a447f2a@4183a04c #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
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