tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
IrishMECFSAssociation, to longcovid
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵

"7 Challenging Daily Decisions When You
Live With Chronic Illness
https://themighty.com/topic/chronic-illness/challenging-daily-decisions-with-chronic-illness/

Here are the 7 headings. The article itself expands on these

  1. Deciding if you’re going to take a shower.
  2. Deciding where to spend and save your spoons.
  3. Deciding how to answer “How are you?”

@chronicillness @spoonies @mecfs
@longcovid

1/

tomkindlon, to disabled
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵

From:
Pattern of Post COVID Fatigue in Elderly Patients

"metabolic effects of aging are equally complex but hypometabolism is a constant feature. We hypothesise such limited metabolic response to exercise +/or stress may protect the patient from the typical hypermetabolic phenomena & its subsequent symptoms of PEM"

@longcovid
@mecfs
1/

tomkindlon, to covid19
@tomkindlon@disabled.social avatar

🧵
“Existential crisis: how #longCOVID patients helped us understand what it's like to lose your sense of identity and purpose in life”

The authors summarise findings from three interview rounds in UK with 80 people with #PostCovid.

https://theconversation.com/existential-crisis-how-long-covid-patients-helped-us-understand-what-its-like-to-lose-your-sense-of-identity-and-purpose-in-life-211223

@longcovid #pwlc #postcovid19 #covidlong @covid @covid19

1/

tomkindlon, to longcovid
@tomkindlon@disabled.social avatar

New UK research:
The effects of COVID-19 on cognitive performance in a community-based cohort: a COVID symptom study biobank prospective cohort study

Free full text
https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(23)00263-8/fulltext

"Effects were comparable to...10 years age difference" ☹️

@longcovid

1/

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Mitochondrial Dysfunction and Coenzyme Q10 Supplementation in Post-Viral Fatigue Syndrome: An Overview

Free fulltext:
https://www.mdpi.com/1422-0067/25/1/574

Note: The lead author "is medical adviser to Pharma Nord (UK) Ltd"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
@fibromyalgia
#Fibromyalgia #Fibrositis #Fibro #FMS #FM

1/

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to australia
@tomkindlon@disabled.social avatar

"the AusME Registry will become open to people with ME/CFS aged 12 and over AND people (12+) with Long COVID."

Link in image: https://zfrmz.com.au/oI53NBgPp9TNq4FqhtLR

Taken from here which has more info:
https://www.emerge.org.au/ausme/

@mecfs
@longcovid

tomkindlon, (edited ) to australia
@tomkindlon@disabled.social avatar

Research Participants Needed: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID kfac4518 [@] uni.sydney.edu.au

This is via the Emerge Australia e-newsletter

"Accommodating" doesn't sound very biopsychosocial so hopefully useful but I don't know any more.

@mecfs
@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

"Last Chance to Make History – the Huge Study is Closing Soon – and it Needs Your Help"

https://www.healthrising.org/blog/2023/10/05/decode_me-study-closing-soon/

Please help to get the word out either by liking and/or retooting this, or by highlighting the study in some other way

@mecfs
@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New:
"Where are the trials?"

Free fulltext:
https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(23)00440-1/fulltext

"ClinicalTrials.gov currently lists 386 trials under the search term Long COVID. However, only 94 of those studies are classed as interventional and are currently recruiting, and even more disturbing, only 12 trials are testing pharmacological interventions."

is similar

@longcovid @mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

“Heart Rate Variability (HRV) is the difference in time between heartbeats. It indicates how your autonomic nervous system functions & can provide valuable information to help prevent PEM/PESE…Learn how to track your HRV & interpret the info here”

https://batemanhornecenter.org/wp-content/uploads/2023/05/Heart-Rate-Variability-HRV.pdf

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
Chronic inflammation, neuroglia dysfunction, and plasmalogen deficiency as a new pathobiological hypothesis addressing the overlap between symptoms &
/

Free fulltext:
https://www.sciencedirect.com/science/article/pii/S0361923023001272

@longcovid @mecfs

1/

tomkindlon, to Pcs
@tomkindlon@disabled.social avatar

Thread🧵:

New from Germany:

"Persistent endothelial dysfunction in post-COVID-19 syndrome and its associations with symptom severity and chronic inflammation"

Free fulltext:
https://link.springer.com/article/10.1007/s10456-023-09885-6

Conclusion: "Our results demonstrate that prolonged endothelial dysfunction is a hallmark of , and impairments of the microcirculation seem to explain ongoing symptoms in patients"

@longcovid

1/

tomkindlon, to longcovid
@tomkindlon@disabled.social avatar

New from Sweden:
Gut microbiota composition is altered in postural orthostatic tachycardia syndrome and post-acute COVID-19 syndrome

https://www.nature.com/articles/s41598-024-53784-9

#PosturalOrthostaticTachycardiaSyndrome #POTS @pots @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Newly announced upcoming clinical trial:

"A clinical trial to test if the fibrinolytic enzyme Lumbrokinase improves symptoms and mitigates blood clotting issues or platelet hyperactivation in patients with #LongCOVID, ME/CFS, & LongLyme disease."

https://polybio.org/projects/lumbrokinase-longcovid-me-cfs-clinical-trial/

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #TeamClots @longcovid
#PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #longhaulers #PASC
@covid19 #Coronavirus
#COVID19 #COVID #SARSCoV2

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

Developing effective strategies to optimize physical activity and cardiorespiratory fitness in the long Covid population- The need for caution and objective assessment

Free fulltext:
https://www.sciencedirect.com/science/article/pii/S0033062024000392

@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
#PESE #PEM

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

#LongCOVID ‘indistinguishable’ from other post-viral syndromes a year after infection
https://www.eurekalert.org/news-releases/1037611

I think diagnoses like #LC & #MECFS are important for those ill after an infection to help adapt to the impairments, not get worse from pushing/having to push, etc

1/

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #PwME @longcovid
#PwLC #postcovid #postcovid19 #Covidlonghaulers #longhaulers #PASC
@covid19 #Coronavirus
#COVID19 #COVID #novid #COVIDBrain
@auscovid19

tomkindlon, to coronavirus
@tomkindlon@disabled.social avatar

(pay wall)
"Parents of children with #longCovid claim they have been accused of faking or exaggerating their child’s illness, leading to social services’ involvement and... court cases and the threat of the child’s removal from the home."

https://inews.co.uk/news/parents-children-long-covid-accused-making-up-3034629

@longcovid
#PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver
#longCovidKids #LCKids

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