tomkindlon , to longcovid group
@tomkindlon@disabled.social avatar

4-Minute video
"The Basics: Orthostatic Intolerance (OI)" (April 2024)

https://www.youtube.com/watch?v=Gh4vpKsLbr8

@pots
@mecfs
@longcovid

1/

tomkindlon , to longcovid group
@tomkindlon@disabled.social avatar

🧵
New pre-print:

Flow Clotometry: Measuring Amyloid Microclots in ME/CFS, Long COVID, and Healthy Samples with Imaging Flow Cytometry

https://www.researchsquare.com/article/rs-4507472/v1

=========
@longcovid

@mecfs
@covid19

1/

tomkindlon OP ,
@tomkindlon@disabled.social avatar

3/
New pre-print:

Flow Clotometry: Measuring Amyloid Microclots in ME/CFS, Long COVID, and Healthy Samples with Imaging Flow Cytometry

https://www.researchsquare.com/article/rs-4507472/v1

Hashtags:
@longcovid

@mecfs
@covid19

tomkindlon , to AusCOVID19 group
@tomkindlon@disabled.social avatar

"Welcome to the 107th Emerge Australia Research Digest, where we delve into recent research and media releases shaping our understanding of ME/CFS and ..."

The summaries are also available in audio form at link

https://www.emerge.org.au/researchdigest/research-digest-issue-107/

@mecfs
@longcovid

@covid19

@auscovid19

10:33 am June 27, 2024 Research Digest | Issue 107 Welcome to the 107th edition of Emerge Australia’s Research Digest, where we delve into recent research and media releases shaping our understanding of ME/CFS and Long COVID. In this issue, we focus on pivotal studies and insightful reports that shed light on the blood-brain disruption in those with Long COVID, and MRI studies that show similar neurochemical profiles in ME/CFS and Long COVID. Furthermore, we highlight the Federal government’s announcement of $1.1m to enable the National Health and Medical Research Council to develop much-needed ME/CFS clinical guidelines in Australia.
ALT
  • Reply
  • Expand (1)
  • Collapse (1)
    • tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    Patient-Led Research Collaborative

    A new issue of our Patient-Generated Hypotheses Journal is out! It includes hypotheses on mechanisms & treatments for , ME/CFS, & POTS from patients & caregivers with diverse backgrounds, ranging from PhDs to self-taught patient experts

    https://patientresearchcovid19.com/patient-generated-hypotheses-journal-issue-2-summer-2024/

    @longcovid

    @mecfs

    Patient-Led Research Collaborative logo Patient-Generated Hypotheses Journal Issue 2 Table of Contents About the Patient-Generated Hypotheses Journal Patient-Led Research Collaborative Elevated abundance of the Streptococcaceae family within the intestinal microbiome is a consistent and relevant finding for ME/CFS Vijay Iyer Chronic inflammation in Long COVID reduces dopamine levels, and contributes to fatigue and brain fog Liz Moore Carbonic anhydrase activity is increased in myalgic encephalomyelitis/chronic fatigue syndrome Rhyothemis Princeps BCG vaccination as a treatment option for ME/CFS and Long COVID Herbert Renz-Polster
    ALT
  • Reply
    • tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    Screenshot from new 4-minute video "The Basics: Post-Exertional Malaise (PEM)"

    https://www.youtube.com/watch?v=UkS6L3Klc00

    =========
    Hashtags:
    @longcovid

    @mecfs

    tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    Screenshot from new 3-minute video "The Basics: Post-Exertional Malaise (PEM)"
    https://www.youtube.com/watch?v=UkS6L3Klc00

    ======
    Hashtags:
    @longcovid


    @mecfs

    Post-Exertional Malaise (PEM)/ Post-Exertional Symptom Exacerbation (PESE) Post ↓ Often Delayed 12-72 Hours Exertion ↓ Physical Movement Sensory Upright Positions Sensory Lights, Noises Smells/Odors Pressure/Vibration Cognitive Communicating Problem Solving Concentrating Emotional Social Eustress Distress Environmental Temperature Chemicals Barometric Malaise ↓ Symptoms and Functional Impairment
    ALT
  • Reply
    • tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    From the Solve ME/CFS Initiative

    Sign up for our July 2 webinar "Covid Vaccinations: Efficacy, Options, & Special Considerations for ,"

    https://ow.ly/9QEB50SlYEs

    @mecfs

    @longcovid

    tomkindlon , to AusCOVID19 group
    @tomkindlon@disabled.social avatar

    Australia:

    If you’re living with ME/CFS, Long COVID or want to volunteer as a ‘healthy control’ for medical research studies, signing up and becoming an AusME Registry participant is the single easiest way to become involved in research! Learn more today

    https://vist.ly/3b4pb


    @mecfs @longcovid @auscovid19

    tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    🧵
    It's 5th anniversary of our paper

    "Monitoring treatment harm in / : A freedom-of-information study of NHS specialist centres in England"
    https://journals.sagepub.com/doi/10.1177/1359105319854532

    Hopefully it will influence, among other things, clinics

    @mecfs

    @longcovid
    @b_m_hughes

    1/n

    Abstract The use of graded exercise therapy and cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome has attracted considerable controversy. This controversy relates not only to the disputed evidence for treatment efficacy but also to widespread reports from patients that graded exercise therapy, in particular, has caused them harm. We surveyed the National Health Service–affiliated myalgic encephalomyelitis/chronic fatigue syndrome specialist clinics in England to assess how harms following treatment are detected and to examine how patients are warned about the potential for harms. We sent 57 clinics standardised information requests under the United Kingdom’s Freedom of Information Act. Data were received from 38 clinics. Clinics were highly inconsistent in their approaches to the issue of treatment-related harm. They placed little or no focus on the potential for treatment-related harm in their written information for patients and for staff. Furthermore, no clinic reported any cases of treatment-related harm, despite acknowledging that many patients dropped out of treatment. In light of these findings, we recommend that clinics develop standardised protocols for anticipating, recording, and remedying harms, and that these protocols allow for therapies to be discontinued immediately whenever harm is identified.
    ALT
  • Reply
  • Expand (3)
  • Collapse (3)
    • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    3/

    I searched but couldn't find a legal copy online of "Monitoring treatment harm in / ..." that others can access so I uploaded here https://www.researchgate.net/publication/334005289_Monitoring_treatment_harm_in_myalgic_encephalomyelitischronic_fatigue_syndrome_A_freedom-of-information_study_of_National_Health_Service_specialist_centres_in_England
    what we submitted to the journal which is something we own the copyright on.

    @mecfs @longcovid @b_m_hughes

    tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    Trial by Error by David Tuller: Athlete Oonagh Cousins on the Lightning Process
    A conversation with world-class rower Oonagh Cousins who got long Covid and whose story has been told by the BBC.

    The BBC also covered her negative experience with the contested alternative treatment Lightning Process which she says is exploiting people.

    Interview
    https://virology.ws/2024/06/21/trial-by-error-athlete-oonagh-cousins-on-the-lightning-process/

    @longcovid
    @mecfs

    tomkindlon , to AusCOVID19 group
    @tomkindlon@disabled.social avatar

    The Australian ME/CFS and Long COVID (AusME) Registry is an online study of individuals aged 12yrs+ with ME/CFS or Long COVID, as well as healthy volunteers.

    Join https://ausmeregistry.org/

    @longcovid @auscovid19

    The Australian ME/CFS and Long COVID (AusME) Registry is an online study of individuals aged 12yrs+ with ME/CFS or Long COVID, as well as healthy volunteers. Your unique experiences and insights matter, and your participation accelerates our progress in advancing knowledge. Together, we can work toward a brighter future for those affected by ME/CFS and Long COVID, offering hope and support to countless individuals.
    ALT
  • Reply
    • tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    (Boston, MA, USA)

    "ME/CFS and post-COVID ME/CFS patients needed for an imaging and blood draw study"

    @longcovid @mecfs

    https://rally.massgeneralbrigham.org/study/mocci

    tomkindlon , to ChronicIllness group
    @tomkindlon@disabled.social avatar

    Ancient Greek word of the day: κακοθερής (kakotherēs), unsuited to endure summer heat (literally, bad at summer).

    My thoughts are with those with conditions such as ME for which this is relevant.

    Hashtags:
    @longcovid
    @chronicillness
    @spoonies
    @disability
    @mecfs

    Tom Kindlon's ME CFS & related page: News, Research and more I just saw this posted elsewhere: --- Ancient Greek word of the day: κακοθερής (kakotherēs), unsuited to endure summer heat (literally, bad at summer). --- My thoughts are with those with conditions such as ME for which this is relevant. Ireland has quite mild summers which is good for this fortunately (though many people here complain about our weather).
    ALT
  • Reply
    • tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    Systems Modeling Reveals Shared Metabolic Dysregulation and Novel Therapeutic Treatments in ME/CFS and Long COVID

    https://www.biorxiv.org/content/10.1101/2024.06.17.599450v1?ct=

    ======
    Hashtags:
    @longcovid
    #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
    @covid19 #Coronavirus
    #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 #MEcfs #CFS #PwME @mecfs
    #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

    Abstract Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID are complex, multisystemic conditions that pose ongoing challenges to healthcare professionals. Emerging research suggests that ME/CFS and Long COVID exhibit overlapping metabolic symptoms, indicating possible shared metabolic dysfunctions. This study aims to systematically explore these shared metabolic disturbances and their potential treatments. Utilizing our novel metabolic modeling method, GPMM, we identified the key metabolic irregularities in patients with ME/CFS and Long COVID, notably the downregulation of the alanine and aspartate metabolism pathway, and the arginine and proline metabolism pathway. Genome-wide knockout analyses indicated that supplementation with aspartate (ASP) or asparagine (ASN) could potentially ameliorate these metabolic deficiencies. Further metabolic assessments in Long COVID patients highlighted the significant downregulation of ASP in both blood and muscle, supporting our predictions. Consequently, we propose that the combination of l-ornithine and l-aspartate (LOLA) offers a promising approach to alleviate metabolic symptoms in both ME/CFS and Long COVID patients. This study not only elucidates the shared metabolic pathways in ME/CFS and Long COVID but also positions LOLA as a viable candidate for future clinical trials.
    ALT
  • Reply
  • Expand (1)
  • Collapse (1)
    • tomkindlon , to MECFS group
    @tomkindlon@disabled.social avatar

    "Overlap in Common Symptoms on Long Covid, ME/CFS, and "

    From a new, major National Academies report, "Long-Term Health Effects of : Disability & Function Following Infection"

    https://www.nationalacademies.org/news/2024/06/new-report-reviews-evidence-on-long-covid-diagnosis-risk-symptoms-and-functional-impact-for-patients

    Hashtags:
    @longcovid

    @mecfs

    tomkindlon , to MECFS group
    @tomkindlon@disabled.social avatar

    Extract from an ME Association piece
    https://meassociation.org.uk/2024/06/new-york-times-new-report-underscores-the-seriousness-of-long-covid/

    on a New York Times article on a new, major National Academies report, "Long-Term Health Effects of : Disability & Function Following Infection"

    https://www.nationalacademies.org/news/2024/06/new-report-reviews-evidence-on-long-covid-diagnosis-risk-symptoms-and-functional-impact-for-patients

    @longcovid

    @covid19
    #COVID @mecfs

    New York Times: New report underscores the seriousness of Long Covid June 6, 2024 One of the nation’s premier medical advisory organizations has weighed in on Long Covid with a 265-page report that recognizes the seriousness and persistence of the condition for millions of Americans. The National Academies said the condition could involve up to 200 symptoms, make it difficult for people to work and last for months or years. “The significant overlap in clinical presentation between Long Covid and ME/CFS and FM raises the question of common mechanisms that could be involved in the pathogenesis of these conditions and offers the potential to use past clinical and biomedical research to accelerate the understanding of pathomechanisms specific to Long Covid.” National Academies: Long-term Health Effects of Covid-19: Chapter 5.
    ALT
  • Reply
    • IrishMECFSAssociation , to longcovid group
    @IrishMECFSAssociation@mastodon.ie avatar

    Friday, June 7
    Free professionally-facilitated online support group

    1 PM MT/ 3 PM ET / 8 PM GB & Ireland

    Find the time in your time zone here:
    https://www.timeanddate.com/worldclock/fixedtime.html?msg=Support+Group%3A+What+does+it+mean+to+be+%E2%80%9Cchronically+ill%3F%E2%80%9D&iso=20240607T13&p1=220&ah=1

    Topic: What does it mean to be “chronically ill?”

    https://batemanhornecenter.org/event/online-support-group-70/

    @mecfs
    @longcovid
    @fibromyalgia
    @chronicillness
    @spoonies

    tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    🧵
    The Untapped Power of “We Don't Know”: Epistemological Humility in the Era of

    https://journals.sagepub.com/doi/10.1177/23743735241252475

    "There are several arguments for how saying “We don’t know” might benefit patients.

    @longcovid
    @chronicillness
    @spoonies @mecfs

    1/

    tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    Emerge Australia Research Digest | Issue 106
    https://www.emerge.org.au/researchdigest/research-digest-issue-106/

    3 out of the 4 papers look at groups after Covid infection; the 4th paper looks at a group after Epstein-Barr virus infection

    Hashtags:
    @longcovid
    #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
    #MEcfs #CFS #PwME #LongCovidKids @mecfs
    @covid19 #Coronavirus
    #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver
    #ChronicFatigueSyndrome

    9:55 am May 31, 2024 Research Digest | Issue 106 Welcome to the 106th edition of Emerge Australia’s Digest. In this month’s issue, we explore literature that delves deeper into the connections between metabolic and immune alterations in Long COVID and ME/CFS. We also highlight reports on the long-term effects of SARS-CoV-2 in children and a detailed analysis of the clinical phenotypes identified in a cohort of young individuals with ME/CFS following EBV-IM. And don’t forget about our newly implemented ‘text-to-speech’ feature that reads aloud this month’s Research Digest summaries. Simply click the button associated with the summary below, and the research summaries will be read to you.
    ALT
  • Reply
    • tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    The Australian ME/CFS & (AusME) Registry is an online study of individuals aged 12yrs+ with ME/CFS and Long , as well as healthy volunteers

    Link in image
    https://ausmeregistry.org/

    So far "11 projects Australia-wide utilising the AusME Registry"

    @mecfs
    @longcovid


    @auscovid19

    AusME Registry The Australian ME/CFS and Long COVID (AusME) Registry is an online study of individuals aged 12yrs+ with ME/CFS or Long COVID, as well as healthy volunteers. Your unique experiences and insights matter, and your participation only accelerates our progress in advancing knowledge. Together, we can work toward a brighter future for those affected by ME/CFS and Long COVID, offering hope and support to countless individuals. JOIN THE AUSME TODAY REGISTRY AND HELP US MAKE A DIFFERENCEJOIN THE AUSME TODAY REGISTRY AND HELP US MAKE A DIFFERENCE
    ALT
  • Reply
    • + Npars01
    tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    New from NCNED team in Australia:

    "Imbalanced Brain Neurochemicals in long COVID and ME/CFS: A Preliminary Study using MRI"

    Free full text:
    https://www.sciencedirect.com/science/article/pii/S000293432400216X

    "This research is funded by ME Research UK"

    @longcovid
    @mecfs

    1/

    Clinical Significance • People with long COVID and ME/CFS have elevated glutamate and N-acetyl-aspartate levels compared to healthy controls in the posterior cingulate cortex, potentially causing multiple symptoms in both conditions. • Similarities in brain neurochemicals between long COVID and ME/CFS provide further evidence for a significant link between the two conditions. • Associations between brain neurochemicals and severity measures in long COVID and ME/CFS, may highlight the role of neurochemicals in these conditions.
    ALT
  • Reply
  • Expand (1)
  • Collapse (1)
    • + Npars01
    tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    🧵
    "ME/CFS Isn't Just Misunderstood, It's Actively Neglected"

    https://www.popsugar.com/fitness/mecfs-post-covid-49344168

    'Beth Pardo is among the people who developed ME/CFS after contracting COVID.' 'Pardo went from running ultramarathons to being unable to leave her bed'

    @mecfs

    @longcovid

    tomkindlon , to MECFS group
    @tomkindlon@disabled.social avatar

    Recent Research Trends in Neuroinflammatory and Neurodegenerative Disorders

    https://www.mdpi.com/2073-4409/13/6/511

    This paper has section which discusses ME/CFS & as a chronic disorder that is associated with neuroimmune dysfunctions

    @mecfs

  • All
  • Subscribed
  • Moderated
  • Favorites
  • •
  • random
  • test
  • worldmews
  • mews
  • All magazines
    •