Tom Kindlon

95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness.
With ME/CFS 35 years, severely affected 30 years.
Health has deteriorated post Covid (March 2022).
Irish ME/CFS Association* trustee 27 years.
26 publications in peer-reviewed journals.
MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom_Kindlon

#ChronicFatigueSyndrome #MECFS #PwME #fedi22
*IrishMECFSAssociation@mastodon.ie


Coagulation profile in hospitalized children with COVID-19: pediatric age dependency and its impact on long COVID development

Free full text
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1363410/full

#LongCovidKids nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver #CovidBrain nostr:npub1j92gv04tmkesqun87xgr4hnvzcwx0f49yyzl37pa7rew8uslugjs9j6nfj

1/


A popular article in the ME/CFS community that's in the Guardian today
 https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services

#MEcfs #CFS #PwME nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

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"Treatment Harms to Patients with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome" by

David F Marks (an eminent academic psychologist)

https://opastpublishers.com/open-access-articles/treatment-harms-to-patients-with-myalgic-encephalomyelitischronic-fatigue-syndrome.pdf

Professionals have let down patients by not alerting everyone to this issue

#MEcfs #CFS #PwME #MEeps #Exercise #CBT nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

1/

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Unsupervised cluster analysis reveals distinct subtypes of ME/CFS patients based on peak oxygen consumption and SF-36 scores

Free fulltext:
https://www.sciencedirect.com/science/article/pii/S0149291823003521

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

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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 nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd


New pre-print from Spain:

HERV activation segregates ME/CFS from #fibromyalgia and defines a novel
nosological entity for patients fulfilling both clinical criteria

Free fulltext:
https://www.biorxiv.org/content/10.1101/2023.10.05.561025v1

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #Fibro #FMS #FM nostr:npub1pt28y0wfgslmwmru5v7njc8np2njdqhklfx5974y7yexea8um79q7gcd4k nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

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11/

“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)”

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome


'Long colds' are a thing, like #longCovid say experts

https://www.bbc.com/news/health-67016985

Unfortunately the follow-up period in this study was quite short so hard to tell much about ME/CFS from this

Link to full paper and some discussion here:
https://www.s4me.info/threads/long-term-symptom-profiles-after-covid-19-vs-other-acute-respiratory-infections-an-analysis-of-data-from-the-covidence-uk-study-2023-vivaldi-et-al.35571/


Brazilian parliament passes FM/chronic fatigue law

https://www.mediarunsearch.co.uk/chamber-approves-project-establishing-sus-care-guidelines-for-fibromyalgia-news/

#Fibromyalgia #Fibrositis #Fibro #FMS #FM nostr:npub1pt28y0wfgslmwmru5v7njc8np2njdqhklfx5974y7yexea8um79q7gcd4k

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"Last Chance to Make History – the Huge #DecodeME 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

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing  nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC  #Covidlonghaulers #PostCovidSyndrome

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"Norman Swan* outrage for endorsing graded exercise therapy for #chronicfatiguesyndrome and #longCovid sufferers

Fury over Norman Swan endorsement

Swan backed fatigue exercise therapy"

https://www.dailymail.co.uk/news/article-12596117/Norman-Swan-outrage-endorsing-graded-exercise-therapy-chronic-fatigue-syndrome-long-Covid-sufferers.html

*An ABC (Australia) medical pundit

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC  #Covidlonghaulers #PostCovidSyndrome

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11/

“(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
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22


9/

“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)”

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome


8/

“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.”

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #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”

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid


Press release:
CSPI sues EpicGenetics, maker of test for fibromyalgia, for false and misleading claims

Updated: October 4, 2023

https://www.cspinet.org/press-release/cspi-sues-epicgenetics-maker-test-fibromyalgia-false-and-misleading-claims

nostr:npub1pt28y0wfgslmwmru5v7njc8np2njdqhklfx5974y7yexea8um79q7gcd4k #fibromyalgia #fibro #fms #fm


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,”

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome


From UK ME/CFS biobank:

🔬 Exciting News! Our new study is underway.

🧬 Our focus? Exploring the link between HHV-6 DNA levels and ME/CFS severity.

📆 Over the next 6 months, our participants will be collecting saliva samples for us to analyse.

Want to know more? Https://bit.ly/3Q3vKVm

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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2/

https://www.facebook.com/ME-Analysis-290904064336076

https://me-pedia.org/wiki/MEAnalysis

https://me-pedia.org/wiki/Graham_McPhee

Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England
https://journals.sagepub.com/doi/10.1177/1359105319854532

Cognitive behaviour therapy and objective assessments in chronic fatigue syndrome
https://journals.sagepub.com/doi/full/10.1177/1359105317707215
May he rest in peace

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME


🧵
Today is the second anniversary passing of Graham McPhee. Despite many years as a secondary school teacher, he remained soft-spoken, funny & mild-mannered. He had a sharp intellect.

I had the pleasure of working with him on a number of projects.

As well as as all his useful ME work, I was particularly impressed by all he did to help Robert (Bob) Courtney in the period before Bob's death
Some links to his work:
https://www.youtube.com/user/MEAnalysis/videos

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#ChronicFatigueSyndrome #MEcfs #CFS #PwME

1/

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(UK)

I just read a 1-page article by the Richmond & Kingston

ME Group in a recent @actionforme magazine

Sounds like a great group for people in the area & even beyond (have held over 200 virtual meetings and 1/3 of their members are from outside the area) 👍

https://shorturl.at/adqH5

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

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Great to have this rebuttal:
Psychologist Frøydis Lilledalen's opinion piece in reply to the Dagens Medisin (Daily Medicine) article where Reme was interviewed (about the ridiculous Oslo Chronic Fatigue Consortium paper), open access:

Google English translation:
https://www-dagensmedisin-no.translate.goog/mer-somatikk-overbehandling-psykisk-helse/hapspredikantene-nar-troen-pa-metode-trumfer-troen-pa-mennesket/589565?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

Norwegian:
https://www.dagensmedisin.no/mer-somatikk-overbehandling-psykisk-helse/hapspredikantene-nar-troen-pa-medisin-trumfer-troen-pa-mennesket/589565

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

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6/

TABLE. Management considerations for ME/CFS based on symptoms.

From:
Diagnosis and Management of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (Grach et al., 2023)

https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

#MEcfs #CFS #PwME
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

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4/

FIGURE 2. Post-exertional malaise (PEM)

From:
Diagnosis and Management of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (Grach et al., 2023)
https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #MEcfs #CFS #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC

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3/
Figure 1. Sympton presentation in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

From:
Diagnosis and Management of #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (Grach et al., 2023)
https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

#MEcfs #CFS #PwME #MyalgicE #CFSME nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

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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


🧵
New:

"Diagnosis and Management of #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome"

Free full text:
https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

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

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MedMastodon

1/

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2/

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.

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome


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

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

1/


The author refers to using the spoon theory so presumably has some energy limiting chronic illness (which is unspecified)

https://www.tumblr.com/i-the-spoonie/724820869881495552

#chronicillness #Spoonies #Spoonie #ChronicallyIll #Disabled #Disability

nostr:npub1pt28y0wfgslmwmru5v7njc8np2njdqhklfx5974y7yexea8um79q7gcd4k nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77
nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg
nostr:npub1ps6mpj39t44yqxzwvf06kptfx9r8cne0y4y5g9sfj3hfcmdy70cqws80vw

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The recording and transcript of the NIH ME/CFS Research Roadmap: Nervous System Webinar are now available
 https://event.roseliassociates.com/me-cfs-research-roadmap/recordings/

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

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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”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #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 nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#PwLC #PostCovidSyndrome #LC #postcovid nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID_19 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #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”
nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22


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”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #PwLC #PostCovidSyndrome #LC #postcovid nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n #COVID19 #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #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.”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n


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 nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd


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”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#PwLC #PostCovidSyndrome #LC #postcovid nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver


2/

"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

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #LongCovidKids #LongCovid #PwLC #postcovid  #postcovid19 #LC   #MEcfs #CFS  #PwME #YPWME #YPWMEs #YPWC #YPWCs nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #COVID19 #COVID #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver #COVIDBrain

https://assets.disabled.social/media_attachments/files/111/167/724/884/878/341/original/e2acf198867b21f5.png


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 nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #PwLC #postcovid  #postcovid19

1/


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”

nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID #COVID_19 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #LC


Long-term Cardiovascular, Cerebrovascular, and Other Thrombotic Complications in #Coronavirus Disease 2019 Survivors

https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciad469/7276646

"individuals with #COVID19 exhibited increased risk (HR, 1.157) and excess burden (EB, 0.70) of new-incident cardiovascular & cerebrovascular complications"

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC  #Covidlonghaulers #PostCovidSyndrome #longhaulers
nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver

https://assets.disabled.social/media_attachments/files/111/166/951/024/540/169/original/b4e1537535d0ef79.jpg


Carotid stiffness, intima–media thickness and aortic augmentation index among adults with #SARSCoV2

https://shorturl.at/dsCSZ

“This cross-sectional analysis revealed higher carotid artery stiffness and aortic stiffness among young adults with SARS-CoV-2”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver


From Germany:

Autonomic dysregulation in long-term patients suffering from #PostCOVID19 Syndrome assessed by heart rate variability

https://shorturl.at/ansR4

“Our data demonstrate persistent HRV alterations in #PCS patients with long-term symptom duration, suggesting a sustained impairment of sympathovagal balance”

#Dysautonomia nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidBrain


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”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #PwLC #PostCovidSyndrome #LC #postcovid nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n #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

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#PwLC #postcovid nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVID19 #COVID #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #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.

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome


Long-term health outcomes of Q-fever fatigue syndrome patients

https://www.cambridge.org/core/journals/epidemiology-and-infection/article/longterm-health-outcomes-of-qfever-fatigue-syndrome-patients/99B3D80E172A66619C216506E020BB02

This study determined the long-term health outcomes (≥10 years) of 368 patients with Q-fever fatigue syndrome. Their health-related quality of life was low with a EQ-5D-5L index of 0.63. 98.9% of patients experienced post-exertional malaise complaints.


Richard Vallée ChatGPT response to:

"Are there incorrect facts in the [Oslo Chronic Fatigue Consortium] article? And what evidence supports the assertions made by the authors?"

https://www.s4me.info/threads/chronic-fatigue-syndromes-real-illnesses-that-people-can-recover-from-2023-the-oslo-chronic-fatigue-consortium.35388/page-5#post-495641

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

https://assets.disabled.social/media_attachments/files/111/166/331/987/220/230/original/97030495323cdb65.png


2/

The authors say this shows the value of long read sequencing in diagnosis.

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd


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

1/


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

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

1/


2/

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!"

nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #postcovid  #postcovid19 #LC  #Covidlonghaulers #PostCovidSyndrome #longhaulers


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

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#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

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome


From David Tuller DrPH:

David Putrino & Prof Akiko Iwasak published an important study in Nature reporting differences in multiple immune-related blood parameters between those with and without long Covid. Dr Putrino & I recently spoke about the findings:

https://virology.ws/2023/09/29/trial-by-error-david-putrino-on-new-nature-study-of-long-covid-immune-profiling/

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome


For the Provider:

Working with Patients with ME/CFS and their Caregivers

https://sacfs.asn.au/news/2018/03/03_29_for_the_provider_working_with_patients_with_mecfs_and_their_caregivers.htm

#MedMastodon #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

https://assets.disabled.social/media_attachments/files/111/165/545/687/657/293/original/e7c396c38c987f28.png


2/

More info:
https://www.s4me.info/threads/tjenesten-og-meg-the-health-service-and-me-ongoing-sintef-fafo.20234/page-3#post-494660

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd


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.

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

1/


ZonMw, Organisation for Health Research and Development in the Netherlands has published a short update on the ME/CFS program. Sjaak de Gouw will be the new chair of the program.

Google English translation:
https://www-zonmw-nl.translate.goog/nl/nieuws/mecvs-update-nieuwe-commissievoorzitter-nieuwe-richtlijn-mecvs-en-1e-projecten-van-start?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd


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/

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#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

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MEcfs #CFS #MyalgicE #PwME #MyE #ME #millionsmissing #CFSME #CFIDS nostr:npub1ssskg59387akg5phs6d5s26vwjdvmdcl25cgjx4w6jt8mpdr2ytqxdn6rg


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 nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2


nostr:npub1nkx8sanzaetuva3yeq40se62ng6l0nsc5jdywjqvgvauulevxeyqdmz3ax Lightning Process


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

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver


2/

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 nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd


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

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS

1/


via Richard Vallée:

ChatGPT response to:

"Can you offer a critique and evaluation of this [Oslo Chronic Fatigue Consortium] research article, its scientific value and accuracy, as well as the validity of the claims made by the authors?"

https://www.s4me.info/threads/chronic-fatigue-syndromes-real-illnesses-that-people-can-recover-from-2023-the-oslo-chronic-fatigue-consortium.35388/page-5#post-495640

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

https://assets.disabled.social/media_attachments/files/111/160/999/246/120/376/original/d6251cde69e11ce6.png


Outdated hypothesis [from Oslo Chronic Fatigue Consortium] is presented as news by University of Oslo

Google English translation:

https://melivet-com.translate.goog/2023/09/24/utdatert-hypotese-presenteres-som-nyhet-av-universitetet-i-oslo/?_x_tr_sl=no&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

#MEcfs #CFS #MyalgicE #PwME nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd


“Universities spread false information” [on the The Oslo Chronic Fatigue Consortium statement]

Google English translation:

https://mitteremitage-wordpress-com.translate.goog/2023/10/01/universitet-sprider-falska-uppgifter/?_x_tr_sl=sv&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

#MEcfs #CFS #MyalgicE #PwME nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd


2/

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.

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME


"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!

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

1/


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

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE


3/

4/
A respected ME activist Trish David has done a line by line critique of this [Oslo Chronic Fatigue Consortium] abstract here
https://s4me.info/threads/chronic-fatigue-syndromes-real-illnesses-that-people-can-recover-from-2023-the-oslo-chronic-fatigue-consortium.35388/page-5#post-495573

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid

(click link above rather than preview to go directly to the post)


A great initiative being organised by Julie Rehmeyer.
https://docs.google.com/forms/d/e/1FAIpQLSeWgCCEpr5p9b7I0RuvB9LmvQcC6rm1dx_CgCYBzU9VtTBj6A/viewform

I'm on there already. I will probably give my codes to this initiative.

Incidentally, you can find my social media channels including on #bluesky here
https://me-pedia.org/wiki/Tom_Kindlon#Online_presence

nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77
nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MEcfs #CFS #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC  #neisvoid
#chronicillness
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

https://assets.disabled.social/media_attachments/files/111/159/513/157/030/274/original/2693e5f8a3c6e114.png


Extract from: "Violation of the Dutch Code of Ethics for Psychologists with current CFS guideline – -part 2"

https://meglobalchronicle.wordpress.com/2023/09/29/violation-of-the-dutch-code-of-ethics-for-psychologists-with-current-cfs-guideline-part-2/

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

https://assets.disabled.social/media_attachments/files/111/155/793/716/400/088/original/89a2abedbb8783c6.png


3/

I sent the journalist the following with regard to people with ME/CFS:

People made worse with Lightning Process with working links:
https://www.s4me.info/threads/anyone-know-of-any-stories-of-people-with-long-covid-who-were-made-worse-by-the-lightning-process-gupta-or-similar.35462/#post-496185

#MEcfs #CFS #MyalgicE #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd


New pre-print from New Zealand:

Immune cell proteomes of #LongCOVID patients have functional changes similar to those in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome

https://www.researchsquare.com/article/rs-3335919/v1

"suggesting the two conditions have similar immune pathophysiology as a prominent feature, and mitochondrial functions involved in energy production were affected in both conditions"

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MEcfs #CFS #PwME #MyalgicE nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#PwLC #postcovid  #postcovid19 #LC  #Covidlonghaulers

https://assets.disabled.social/media_attachments/files/111/153/705/242/741/621/original/7bb2fcd04fd4fbd8.png


#VladsMEdiary Ep 148

Let's talk dynamic disability.

#MEawarenesshour #LongCovid

Vlad Vexler:
From: https://twitter.com/vladvexler/status/1453428887548047367

If people know of any of Vlad's other social media channels where he talks about ME, #chronicillness  etc., please let me know.

I know he has a very popular YouTube channel on Russian politics but that's not particularly relevant for those who might be interested in this video.

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77
nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg
nostr:npub1ps6mpj39t44yqxzwvf06kptfx9r8cne0y4y5g9sfj3hfcmdy70cqws80vw
#MEcfs #CFS #PwME #MyalgicE

https://assets.disabled.social/media_attachments/files/111/151/303/096/657/026/original/196e416c896b0242.mp4


News from NIH: ME/CFS Research Roadmap Webinar Series-- Immune system, October 19

Clickable links in image:
https://event.roseliassociates.com/me-cfs-research-roadmap/
https://roseliassociates.zoomgov.com/webinar/register/WN_7VLhZg0USom5C1SFKOnl4A#/registration
https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

https://assets.disabled.social/media_attachments/files/111/150/472/063/372/226/original/56ab06fe9ad83fd1.png


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/

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22


I've just set up an account on #Bluesky tomkindlon.bluesky.social https://bsky.app/profile/tomkindlon.bsky.social

I intend to post similar posts there to those I post here

My other social media channels can be found here:
https://me-pedia.org/wiki/Tom_Kindlon#Online_presence

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC
nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77
nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg

https://assets.disabled.social/media_attachments/files/111/149/213/253/558/660/original/acf14628b631b1e0.png


Given my earlier work on the reporting of harms https://www.researchgate.net/profile/Tom-Kindlon/research I was informed of an upcoming special issue of Trials on assessing #harms in clinical trials, "The collection, analysis and reporting of adverse events in randomised controlled trials"

https://www.biomedcentral.com/collections/CART

These days I focus on nostr:npub1k2q3ca5zs84jguvceu5ev6erxt5a0gtu4mjhzrgqkjcgxtpqfu6ql8pyq0 but perhaps of interest to somebody. With all the exercise and all #LongCovid trials, it remains important

#MECFS #adverseevents

https://assets.disabled.social/media_attachments/files/111/148/575/605/739/657/original/4efd5c67c5225c96.png


2/

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

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #PwLC #postcovid  #postcovid19 #LC  #Covidlonghaulers #PostCovidSyndrome #longhaulers #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE


Anyone know of any stories of people with #LongCovid who were made worse by the Lightning Process? A journalist is looking at this issue. I shared with them some stories of people with ME/CFS in this scenario

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC


New from Germany:
Atopy & Elevation of IgE, IgG3, & IgG4 May Be Risk Factors for #PostCOVID19 Condition in Children & Adolescents

https://www.mdpi.com/2227-9067/10/10/1598

"We observed elevated IgE levels regardless of disease severity. Concurrent #MECFS was found in 29% of patients that also faced challenges in school attendance. ME/ #CFS manifestation was significantly associated with elevated immunoglobulin G subclasses IgG3 & IgG4"

#LongCovidKids nostr:npub1ssskg59387akg5phs6d5s26vwjdvmdcl25cgjx4w6jt8mpdr2ytqxdn6rg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #LC

https://assets.disabled.social/media_attachments/files/111/143/510/877/710/013/original/78ae438bcd37897d.png


Solve M.E. Patient and Caregiver Resource Guide: Post Exertional Malaise (PEM) and Rest

https://solvecfs.org/wp-content/uploads/2021/09/PEM-REST-Combined.pdf

A shorter version of this was in their latest e-newsletter
https://solvecfs.org/wp-content/uploads/2023/09/Solve-Summer-2023-Digital-Resources-Chronicle.pdf

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC

https://assets.disabled.social/media_attachments/files/111/142/436/299/808/338/original/c293e2b1b692f14c.png


NIH summary of recent paper:

“Prior infection with a common cold virus may predispose some people to develop Long #COVID after exposure to the #SARSCoV2 virus. The findings point to a potential marker that could help identify people at high risk of developing #LongCOVID”
(…) This “recall” response to OC43 leads to an inefficient overall response to SARS-CoV-2”

https://tinyurl.com/3v2fth4x

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #PwLC #PASC #LC #postcovid
#COVIDー19 #COVID19 #COVID_19 #novid #CovidIsNotOver


StudyME (Please!) The Open Medicine Foundation’s Project to Accelerate ME/ #CFS, #FM & #LongCOVID Research

https://www.healthrising.org/blog/2023/09/23/study-me-open-medicine-foundation/

"I know of at least two #MECFS studies that failed to get completed because they failed to find enough participants. That’s a horrible thing to have happen in a field that needs every research dollar it can get its hands on."

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#PwLC #postcovid nostr:npub1pt28y0wfgslmwmru5v7njc8np2njdqhklfx5974y7yexea8um79q7gcd4k
#Fibromyalgia #Fibro #FMS

https://assets.disabled.social/media_attachments/files/111/137/297/370/492/106/original/89f9c94e8baf3acd.png


Sharing with permission, a message by Dr. Hwang (via nostr:npub1w3dru8gj5ca3g7fcy7zpvh9079j04afeslgt3ev64uv0y5psa8wq8vc3jl )

Dr Hwang was lead author of WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

https://www.s4me.info/threads/wasf3-disrupts-mitochondrial-respiration-and-may-mediate-exercise-intolerance-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-2023-hwang-et-al.34776/page-11#post-495760

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

https://assets.disabled.social/media_attachments/files/111/133/071/457/356/104/original/1266a59cd8ba324d.png


Long-term health outcomes of Q-fever fatigue syndrome patients

Free fulltext:
https://www.cambridge.org/core/journals/epidemiology-and-infection/article/longterm-health-outcomes-of-qfever-fatigue-syndrome-patients/99B3D80E172A66619C216506E020BB02

"many experienced post-exertional malaise complaints (98.9%)...This is line with...other patient populations that experience long-term sequelae of infectious diseases"

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

https://assets.disabled.social/media_attachments/files/111/131/245/431/668/749/original/fd29fbc70fabe931.png


Recovery Position Statement

This 2-page document seems to me to be a fair overview of the topic, though will likely be disappointing for people unaware of some of the research.

https://www.emerge.org.au/recovery-position-statement/

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps

https://assets.disabled.social/media_attachments/files/111/086/866/051/193/540/original/13c2d1b098d5c7d6.png


From: DecodeME the ME/CFS Study @DecodeMEstudy

DecodeME Recruitment is closing on November 15 at 5pm. Sign up and complete the questionnaire by this date to be a participant.

There will be time after this to provide your saliva sample

Sign up: https://shorturl.at/dklxS

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

https://assets.disabled.social/media_attachments/files/111/086/059/372/931/234/original/30cd5a34d0ce0b5e.webp


2/

“Together, our findings implicate a dysregulated immune-epithelial progenitor niche in driving respiratory PASC and identify potential therapeutic targets to dampen chronic pulmonary sequelae post respiratory viral infections including SARS-CoV-2.”

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC  #postcovid  @covid @covid19
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2


2/

“Bedrest studies demonstrate only a mild impairment of systemic EO2 with deconditioning. Potential causes of impaired systemic EO2 include mitochondrial dysfunction and peripheral macroscopic or microscopic left-to-right shunts.”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC  #postcovid


🧵
“Post-Acute Sequelae of #SARSCoV2: More Than Deconditioning” Commentary.

Free
https://journal.chestnet.org/article/S0012-3692%2823%2900357-4/fulltext

“While deconditioning is commonly suggested to cause impaired systemic [oxygen extraction], this does not cause the degree of impairment observed in the aforementioned invasive CPET study. (contd)”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC  #postcovid  nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19

1/


2/

“Our findings highlight that label-free high-throughput microscopy can be used as a point-of-care technique to visualize and quantify the presence of microclots directly in plasma without the need for complicated sample preparation techniques.”

#microclots #TeamClots


Digital holo-tomographic 3D maps of #COVID19 #microclots in blood to assess disease severity

Free:
https://tinyurl.com/4kkrs76s

“fewer microclots and platelet aggregates were detected in the plasma of healthy controls when compared to #COVID-19 donors”

#teamclots nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC  #postcovid  nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2

1/


2/

“Together, our findings implicate a dysregulated immune-epithelial progenitor niche in driving respiratory PASC and identify potential therapeutic targets to dampen chronic pulmonary sequelae post respiratory viral infections including SARS-CoV-2.”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC  #postcovid  nostr:npub1zeke3ajwtmsmzm57yg0znem8u9guse37tmx7wz2x29al0xc5xgeqy34d77 nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2


Proximal immune-epithelial progenitor interactions drive chronic tissue sequelae post #COVID19

Free:
https://www.biorxiv.org/content/10.1101/2023.09.13.557622v1

“we utilized a cohort of respiratory PASC patients with viral infection-mediated pulmonary fibrosis & a clinically relevant mouse model of post-viral lung sequelae to investigate the pathophysiology of respiratory #PASC”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #LC  #postcovid  nostr:npub1zeke3ajwtmsmzm57yg0znem8u9guse37tmx7wz2x29al0xc5xgeqy34d77 #COVIDー19 #COVID #COVID_19 #SARSCoV2

1/


#SARSCoV2 infection induces a long-lived pro-inflammatory transcriptional profile

Free:
https://tinyurl.com/269v3b43

“We discovered that SARS-CoV-2 infection leads to a prolonged alteration of the gene expression profile of circulating T, B and NK cells and monocytes”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #LongCovid #PwLC #PostCovidSyndrome #LC #postcovid  nostr:npub1zeke3ajwtmsmzm57yg0znem8u9guse37tmx7wz2x29al0xc5xgeqy34d77 nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver


2/

“… we discovered a correlation between [neuro-#PASC] patient’s lower subjective impression of recovery to pre-#COVID19 baseline with an increase in the concentration of the oxidative phosphorylation protein COX7A1, which was also associated with neurologic symptoms & fatigue, as well as impairment in QoL & cognitive dysfunction”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC  #postcovid  nostr:npub1zeke3ajwtmsmzm57yg0znem8u9guse37tmx7wz2x29al0xc5xgeqy34d77 nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID #COVID_19 #SARSCoV2 #novid


Plasma proteomics show altered inflammatory and mitochondrial proteins in patients with neurologic symptoms of post-acute sequelae of #SARSCoV2 infection

https://tinyurl.com/4nxyye9y

One of the authors Dr Klausner on the 🐦 site:
“Our collaborative work on what causes #LongCovid suggests damage to the mitochondria & immune system underly persistent #brainfog”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#PwLC #PostCovidSyndrome #LC  #postcovid  nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n #COVIDー19 #COVID19 #COVID #COVID_19 #novid

1/


NPR: Unraveling #LongCovid — Here's what scientists who study the illness want to find out

https://tinyurl.com/a8ravk5j

Researchers & patient advocates who participated at a long #COVID19 conference in USA last month share some findings & current hypotheses from the field.

"All of those involved in research stress they don't expect just one answer to long #COVID. It's likely many of these theories about its underlying cause are interrelated”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #PwLC #LC  #postcovid


2/

Dr. Iwasaki says: "Post-acute infection syndromes have historically been ignored. They've been going on for decades - or maybe hundreds of years - but we haven't been paying attention. Our center is uniquely positioned to tackle these diseases because of our building expertise from #LongCOVID and our many collaborations across different disciplines".

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome


Yale School of Medicine Post-Acute Infection Syndromes Will Be the Focus of New YSM Center

https://tinyurl.com/5d38ua2r

On the newly launched Center for Infection & Immunity (CII) at Yale created by Akiko Iwasaki, PhD, which will investigate ME together with #LongCOVID and #posttreatmentLymedisease

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC  #postcovid #longlyme #lyme

1/


New Blood Test For #ChronicFatigueSyndrome Has 91% Accuracy

On the preliminary results from a study by Jiabao Xu et al on a blood cell-based test for ME/CFS. "The blood test differentiates between the properties of a type of blood cell called peripheral blood mononuclear cells (PBMCs) in people with an without ME/CFS, using a technique called Raman spectroscopy and an artificial intelligence (AI) tool"

https://tinyurl.com/59fwuvha

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis


L”Association Française du Syndrome de Fatigue Chronique (ASFC) a édité un petit guide du pacing, conçu pour les malades

https://www.asso-sfc.org/asfc-actualites-details-478.php?zan_id=478

#SFC nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC  #postcovid


Long #COVID: The hunt for causes and cures

A thorough article by Shi En Kim covering current hypotheses from the #LongCovid field

https://cen.acs.org/biological-chemistry/infectious-disease/Long-COVID-hunt-causes-cures/101/i30

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC  #postcovid  nostr:npub1zeke3ajwtmsmzm57yg0znem8u9guse37tmx7wz2x29al0xc5xgeqy34d77 nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver


Belle and Sebastian's Stuart Murdoch to Publish Debut Novel

Musician and ME-sufferer Stuart Murdoch will publish a novel titled "Nobody's Empire" next year. "Part memoir and part fiction, the novel is set in Glasgow and California in the early 1990s and followed a character searching for "a new-world reinvention" after his hospitalisation with chronic fatigue syndrome".

https://tinyurl.com/7jpncr73

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome


Trude Schei from the Norwegian ME Association has written an opinion piece urging better care for severe ME patients. Patients need to pay out of their own pocket or raise money in order to access care at Røysumtunet, the only institution with an offer for #severeME, instead of receiving support for a stay from their municipalities

English translation:
https://shorturl.at/boqEG

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome


Interesting 20-minute David Tuller DrPH interview with health, science & data journalist Betsy Ladyzhets about NIH's Flawed $1.2 Billion RECOVER Program for Long #Covid

She has written a critical, investigative report for STAT on the RECOVER program

https://shorturl.at/pqBJR

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC  #postcovid  nostr:npub1zeke3ajwtmsmzm57yg0znem8u9guse37tmx7wz2x29al0xc5xgeqy34d77 nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver


nostr:npub1dzadg983eq5y320tp23e27zm43rfd5je0u8mnqst8zx8tjh52tase0vp0n Thanks. Have fixed it now.


3/

“For years, clinicians tried to treat ME/CFS patients by gradually increasing their physical activity levels - since been shown to be ineffective, often harmful”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 nostr:npub1zeke3ajwtmsmzm57yg0znem8u9guse37tmx7wz2x29al0xc5xgeqy34d77 nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME


2/

“Stories like Zimmernan’s—illness, improvement, exercise, crash—are common in the Long COVID world. And they highlight what many researchers, patients, and advocates say is one of the most powerful tools for managing, and potentially even preventing, Long COVID: rest.”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC  #postcovid  nostr:npub1zeke3ajwtmsmzm57yg0znem8u9guse37tmx7wz2x29al0xc5xgeqy34d77 nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver


Time: Why You Should Rest - a Lot - If You Have #COVID19 (September 2022)

Informative article on PEM and pacing with among others Jamie Seltzer from #MEAction.

https://time.com/6215346/covid-19-rest-helps/

“I had no idea that I should try to rest as hard as I needed to rest,” she says.

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC  #postcovid  nostr:npub1zeke3ajwtmsmzm57yg0znem8u9guse37tmx7wz2x29al0xc5xgeqy34d77 nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver

1/


Washington Post article on in-house NIH research: “She wrote to a scientist about her fatigue. It inspired a breakthrough” by
nostr:npub1zle9nhxsw0wr6s3enc0tc23drjaqv3wt60mzast4pen59q4y4kgq3738k8

https://wapo.st/3Pem0G4

“Nine out of 14 had similar overabundance of WASF3 as Twinam, and, on average, the [#MEcfs] group’s levels of this protein were higher than that of healthy volunteers”

Mentions a drug trial is planned

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome


2/

“By not investigating #LongCovid in Module 4, the Inquiry is in effect saying there is no need to investigate pharmaceutical interventions which could prevent & treat Long #Covid. The exclusion of the Long Covid Groups dismisses the profound impact that Long Covid has had, & continues to have, on many people in the UK."

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#PwLC #PostCovidSyndrome #LC  #postcovid  nostr:npub1zeke3ajwtmsmzm57yg0znem8u9guse37tmx7wz2x29al0xc5xgeqy34d77 nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVID19 #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver


ME Association (UK):

Count ME In Campaign

Initial survey results from over 6000 people with ME/CFS showed mostly poor experience of the NHS, with no change since the 2021 NICE guidelines.

https://meassociation.org.uk/2023/09/the-me-association-a-very-successful-count-me-in-campaign/

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome


Solve ME/CFS Initiative:

"Our flagship research and advocacy journal, The Chronicle, has arrived! This special edition features key resources from our website that community members can utilize as they navigate their journeys with #MECFS or #LongCovid."

https://solvecfs.org/wp-content/uploads/2023/09/Solve-Summer-2023-Digital-Resources-Chronicle.pdf

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#PwLC #LC  #postcovid


8/

“A new NIH institute or center for post-infectious illness is a promising prospect. However, any such initiative is unlikely to happen quickly, & obtaining actionable results would take even longer. In the interim, we believe medical & public health authorities should not wait for the paradigm to shift by itself. Instead, they must push the paradigm & help ensure its onward passage against the forces of resistance & revanchism”

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #MEcfs #CFS #MyalgicE #PwME


CDC Update: Epidemiologic Characteristics of #LongCOVID

Includes symptom groups (incl. ME/CFS-like & #dysautonomia) & prevalence data. "Post #COVID conditions are associated with increased health care utilization & significant activity limitations. Accumulating evidence #COVID19 vaccination reduces #PostCOVID Conditions among both children & adults”

https://tinyurl.com/y9hcymab
nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #PwLC #LC  nostr:npub1zeke3ajwtmsmzm57yg0znem8u9guse37tmx7wz2x29al0xc5xgeqy34d77 nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n #COVIDー19 #COVID_19 #SARSCoV2 #novid #CovidIsNotOver


7/

“(Contd) Ongoing resistance to the paradigm shift only ensures that patients will continue to be offered inadequate & possibly dangerous therapies. Recent reports from patient support groups suggest that many health care services across England are not yet aligned with the new ME/CFS guideline, still offering treatments that are now disfavored”

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #ME #CFSME #CFIDS
#SEID #NeuroME


The Science Times

Leading UK Doctors and Charities “Livid” as Covid 19 Inquiry Excludes #LongCovid Representation in Latest Module

"Module 4 of the Covid-19 Inquiry opens this week & will examine the roll out of vaccines, therapeutics & anti-viral treatment across the UK”

https://tinyurl.com/28h2dvek

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #PwLC #PostCovidSyndrome #LC  #postcovid  nostr:npub1zeke3ajwtmsmzm57yg0znem8u9guse37tmx7wz2x29al0xc5xgeqy34d77 nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver

1/


6/
“Although paradigms are bound to shift when new knowledge contradicts prior beliefs, the resistance phase can be highly troublesome. This is especially the case when purportedly effective treatments arising out of poor-quality science carry a risk to human welfare. In the current context, psycho-behavioral approaches to treatment have been shown to be not only flawed but likely harmful by triggering the serious relapses that characterize PEM (contd)” nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #mecfs


5/

"(Contd.) The converse is clear as well when critics frame research into the biology and pathophysiology of ME/CFS or #longCOVID as unnecessarily expensive. If you’re reluctant to spend significant resources addressing a new problem, ignoring its potential significance is an understandable strategy."

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE


7/

8. “I’m on the verge of losing it at everyone because everything seems so loud, like it’s way louder than normal. And it’s so annoying it makes me angry. Like even someone drinking a drink seems like they have megaphone at their throat.”

nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg  #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll


4/

"This reality also helps explain, once again, the staying power of old ideas. Short-term and low-cost interventions such as GET and CBT are attractive not because of their evidence base, which has been exposed as flimsy and unconvincing, but rather because of their seemingly plausible and easily replicated approach to a very complex scientific and public health issue. (contd)”

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome


6/

"7. “I’m in more pain than someone could even imagine. I wouldn’t wish this pain on my worst enemies. I don’t like to complain to those around me because if I did, I’d be complaining 24/7 and I don’t want to be ‘annoying’ or ‘a burden’ to anyone.”

nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll #ChronicPain #ChronicPainWarrior #ChronicPainAwareness


3/

"(Contd.) Moreover, when tracking treatment outcomes with objective measures—such as physical endurance tests, actometer data, records of workplace participation, or analyses of dependence on social benefits—the research generally showed minimal or null effects for both GET and CBT.”

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME


2/
“These assessments highlighted the many key flaws that were endemic in the [GET/CBT/rehab] research, including the confounding of unblinded trials by reliance on solely subjective outcome measures, such as patients’ self-ratings about their health status on questionnaires. This combination of study design features meant that findings were impacted by an unknowable level of bias. (Contd)”

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22


🧵
"Despite Resistance, Policy Makers Push The Paradigm On ME/CFS And Long COVID"
by Prof Brian Hughes ( nostr:npub1a6rxkz6q2e6xdqffgkgx6xxmd2vs7zpygzjeu889fj792a2nz9aq3dj5ug ), Prof Steven Lubet & David Tuller DrPH

https://www.healthaffairs.org/content/forefront/despite-resistance-policy-makers-push-paradigm-me-cfs-and-long-covid

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC  #Covidlonghaulers #PostCovidSyndrome #longhaulers
#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT

1/

https://assets.disabled.social/media_attachments/files/111/076/442/314/892/591/original/e577d18a556dd283.png


5/

6. “Some days it takes all day to get enough energy to shower, so around 3 p.m. I start to get terrible anxiety thinking someone will come to my door and think I’m lazy or dirty because the laundry is on the sofa, dishes in the sink and I’m unshowered and in bed in the middle of the day!”

nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll


4/

"4. 'Brain fog makes me feel so out of it some days; even the simplest thing is so hard to hang onto and comprehend.'"

#BrainFog #FoggyBrain

nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll


PhD thesis (sociology)

Exploring the contested diagnosis of #ChronicFatigueSyndrome / #MyalgicEncephalomyelitis

Free fulltext:
https://etheses.whiterose.ac.uk/30227/

#MEcfs #CFS #PwME nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

https://assets.disabled.social/media_attachments/files/111/074/792/466/483/041/original/0327a86067f933a1.png


3/

"2. “My housework falls behind, my washing falls behind, my sorting of things and objects falls behind. I want to have a clean and tidy house but find that dumping things in piles has been the only thing I can do now. I’m constantly tired of battling a fight I don’t think I’m ever going to win.”

nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll


Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

https://www.change.org/p/save-karen-gordon-from-dying-of-malnutrition-and-dehydration-due-to-nhs-failings

Karen has #verysevereme

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #SevereME


British Medical Journal: How can I support my colleague returning to work with #LongCovid

“Remember that no two people with Long Covid will be the same in terms of their challenges, so the approach to returning to work needs to be bespoke and may look different to others.”
BMJ Careers by Abi Rimmer

MEA summary:
https://meassociation.org.uk/2023/09/bmj-how-can-i-support-my-colleague-returning-to-work-with-long-covid/

Free fulltext:
https://www.bmj.com/content/382/bmj.p1997

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#PwLC #postcovid  #postcovid19 #LC  #Covidlonghaulers
nostr:npub1zeke3ajwtmsmzm57yg0znem8u9guse37tmx7wz2x29al0xc5xgeqy34d77 nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVID19 #COVID #COVID_19


ME Association

ME/ #CFS Research Published 5 – 11 September 2023

There have been 9 new ME/CFS studies & 26 new #LongCovid
studies this week.
We have also included the references which were missed in the previous
week

We have highlighted one of the #MECFS studies in more detail below:
Paper 4 this week looks at the effect of end-tidal CO2 on
cerebral blood flow during orthostatic stress

https://meassociation.org.uk/z3cz

#pwME #MyalgicE #MyalgicEncephalomyelitis #PostCovid #research


nostr:npub19k7e8fpa2w67t08fk2rznx0d6ar3ahmuwvk4s7qz6hx2xw0guxxs828qrl nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 No. Never looked for it as would likely be almost impossible to get in Ireland I would imagine.


2/

"1. 'I procrastinate showers because they’re just too much work, especially now with a central line. I don’t brush my hair between showers because it kills my arms, and my muscles get extremely fatigued and hurt. I really need help but hate asking for help and feeling like a burden.”

nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg  #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll


🧵
"17 Things I Don’t Admit on Bad Days With Chronic Fatigue*"

https://themighty.com/topic/chronic-illness/hidden-truths-of-what-chronic-fatigue-feels-like/

*Note that she clarifies "people with many illnesses experience chronic fatigue, but it should not be confused with #chronicfatiguesyndrome / #myalgicencephalomyelitis, a distinct diagnosis that also includes #chronicfatigue as a symptom."

nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77
nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

1/

https://assets.disabled.social/media_attachments/files/111/069/858/735/964/193/original/40bdf0e7ac178813.png


6/

"But when those plans involve other people, the stress and guilt felt by having to tell them you don’t feel well enough to participate can be overwhelming."

nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #ChronicIllnesses
#Spoonies
#Spoonie


5/

"Spoon delegation isn’t always about the things you have to get done on your task list. Sometimes it’s about making the decision to put those spoons toward an activity you enjoy for your mental health — even if it means you’re going to be a little smelly — that’s what deodorant and body sprays are for!"

nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie


4/

"On the days that I decide I don’t have the recovery time or overall energy to take a shower, I give myself a baby wipe bath (which is just wiping myself down with a bunch of baby wipes), apply dry shampoo to my hair, and throw a little cold water on my face."

nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME


3/

"Now that I’m living with #chronicillness, I have to put serious consideration into much of what I choose to do throughout the day because it will have an immediate effect on Current Leslie, as well as risk having an impact on Future Leslie."

#chroniclife #Spoonielife #Spoonie nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22


2/

4. Deciding how to respond to “I hope you feel better soon!”

5. Deciding if you’re actually able to do ‘The Thing.’

6. Deciding how much social interaction you can handle.

7. Deciding when to ask for help.

#chronicillness #chroniclife #Spoonielife #Spoonies #Spoonie nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #MyalgicEncephalomyelitis #MEcfs #CFS #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #LongCovid #PwLC #postcovid  #postcovid19 #LC


🧵

"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 #chroniclife #Spoonielife #Spoonies #Spoonie nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC

1/

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Info in English on new research funding initiative in Germany announced by the Federal Ministry of Education & Research (BMBF)
“‘Guideline for the promotion of interdisciplinary collaborations to research the pathomechanisms of ME/CFS’”

https://www.meresearch.org.uk/german-guideline-promotes-interdisciplinary-me-cfs-research/

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE @mecfs_de@.gup.pe


During an illness crash, a well-meaning loved one can either unknowingly make things worse or assist with the recovery back to baseline. Appendix 2 of ME/CFS Crash Survival Guide teaches family/friends about meeting the essential needs of the individual in a crash while taking care not to exacerbate their suffering. Share this with your loved ones & include a printed copy in your Crash Care Kit

https://batemanhornecenter.org/caregiver-guidance/

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

https://assets.disabled.social/media_attachments/files/111/064/023/827/311/128/original/cc2be07b7f6c9577.png


(US) "Discrimination on the Basis of Disability in Health and Human Programs or Activities"

https://www.federalregister.gov/documents/2023/09/14/2023-19149/discrimination-on-the-basis-of-disability-in-health-and-human-service-programs-or-activities

https://www.govinfo.gov/content/pkg/FR-2023-09-14/pdf/2023-19149.pdf

"an OCR investigation revealed a State denied a
prospective parent with #ChronicFatigueSyndrome & other disabilities the opportunity to become a foster parent"

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77
nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg
nostr:npub1ps6mpj39t44yqxzwvf06kptfx9r8cne0y4y5g9sfj3hfcmdy70cqws80vw
#chronicillness
#chroniclife
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie

https://assets.disabled.social/media_attachments/files/111/063/496/437/306/778/original/024cbda9ea9f7c8e.png


"Just as every well-stocked home has a first-aid kit, we encourage every home with a person with ME/CFS or Long COVID to have a Crash Care Kit. Place these items in a box or bag and keep it handy. Check for expirations and replenish items every six months or as needed. Get our recommended list of items at"
https://batemanhornecenter.org/crash-care-kit-essentials/

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC  #Covidlonghaulers

https://assets.disabled.social/media_attachments/files/111/063/448/995/440/087/original/02dee0fcb54f0c2b.png


New from Norway:
The social robot? Analyzing whether and how the telepresence robot AV1 affords socialization

Free fulltext:
https://journals.sagepub.com/doi/10.1177/13548565231201774

One of the cases discussed in detail has #CFS

nostr:npub1jey5yumywdwnmucs4cfmtn5hpudmvp7sya35v735752neavpmhfq4vxp5u nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #SpecialEd #education

https://assets.disabled.social/media_attachments/files/111/063/414/107/372/169/original/b8c30d3170589abd.png


New from Italy:
Social Stigma in Children with #LongCOVID

Free fulltext:
https://www.mdpi.com/2227-9067/10/9/1518

Sad to see such results especially in children ☹

"Children with Long COVID, similar to adults, are suffering from stigmata due to their condition"

#LongCovidKids nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC  #Covidlonghaulers #PostCovidSyndrome #longhaulers nostr:npub1zeke3ajwtmsmzm57yg0znem8u9guse37tmx7wz2x29al0xc5xgeqy34d77 nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2

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#Australia

Research Participants Needed: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID

This is via the Emerge Australia e-newsletter

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

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC  #Covidlonghaulers #PostCovidSyndrome #longhaulers

https://assets.disabled.social/media_attachments/files/111/060/522/619/152/661/original/a7f4d9f9afd280c2.jpeg


#Australia

"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/

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC  #Covidlonghaulers #PostCovidSyndrome #longhaulers

https://assets.disabled.social/media_attachments/files/111/060/478/946/020/110/original/1807608f98c0bc36.png


“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

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC  #Covidlonghaulers

https://assets.disabled.social/media_attachments/files/111/058/589/480/752/843/original/50541024615b292d.png


"When Exercise Causes Harm

Traditional physical therapy or exercise approaches do not work for individuals with PEM/PESE. This video equips physical and occupational therapists with information about activity and heart rate pacing in addition to energy conservation to reduce episodes of PEM/PESE.  Watch the 3-minute video here"
https://www.youtube.com/watch?v=ioSe6LPVLDM

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC

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Recruiting studies in #SaltLakeCity, #Utah

From the Bateman Horne Center newsletter

Links from image:
https://redcap01.brisc.utah.edu/ccts/redcap/surveys/?s=YWWMMKXE9EPDL4L9
https://redcap01.brisc.utah.edu/ccts/redcap/surveys/?s=KFTMHC4DWERJK93T

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #postcovid  #postcovid19 #LC  #Covidlonghaulers #PostCovidSyndrome #longhaulers

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“Post-Acute Infection Syndromes Will Be the Focus of New YSM Center”

https://medicine.yale.edu/news-article/post-acute-infection-syndromes-will-be-the-focus-of-new-ysm-center/

“Researchers will investigate #LongCOVID, #myalgicencephalomyelitis / #chronicfatiguesyndrome, and post-treatment #Lyme disease at the Center for Infection & Immunity”

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #MEcfs #CFS #MyalgicE #PwME nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#PwLC #PostCovidSyndrome #LC  #postcovid  #PTLD


"Protein may be linked to exercise intolerance in ME/CFS"

News item from the prestigious NIH on one of their recent research studies

https://www.nih.gov/news-events/nih-research-matters/protein-may-be-linked-exercise-intolerance-me-cfs

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

https://assets.disabled.social/media_attachments/files/111/054/824/135/749/720/original/6bb0ed88e6d8713e.png


"Can’t Sleep Since #COVID? There May Be Multiple Reasons Why"

'Damage to brain cells, plus changes to mitochondria, may be behind #longCOVID-related #insomnia & #chronicfatigue’

https://www.healthcentral.com/condition/coronavirus/cant-sleep-since-covid-there-may-be-multiple-reasons-why

“we examined the latest research & asked top viral experts to discuss the COVID-insomnia-chronic-exhaustion connection”

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #PwLC #LC  #postcovid #COVIDー19 #COVID19 #COVID_19 #SARSCoV2


Efficiency of comprehensive rehabilitation of #CFS due to coronavirus infections COVID-19

Free:
https://www.bio-conferences.org/articles/bioconf/pdf/2023/10/bioconf_ebwff2023_05039.pdf

In this case rehabilitation wasn't exercise or even energy management

No proper CFS definition used

No objective measures

nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome  #postcovid  #postcovid19 #LC  #Covidlonghaulers #longhaulers

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2/

One person's summary:

"This study hits on all the major aspects of why someone with pre-pandemic ME would be active in long hauler subs: Hoping long Covid research will make people view ME/CFS as a legitimate disease, hoping a treatment for LC will work for ME, and sharing/getting advice for overlapping symptoms."

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC   #postcovid #postcovid19 #LC  #Covidlonghaulers #longhaulers


New:
Pre-pandemic activity on a #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome support forum is highly associated with later activity on a #longCOVID support forum for a variety of reasons: A mixed methods study

Free
https://journals.plos.org/plosone/article%3Fid=10.1371/journal.pone.0291173

This is sympathetic

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MEcfs #CFS #PwME #MyalgicE nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome  #postcovid  #postcovid19 #LC

1/

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Noise and light hypersensitivity in ME/CFS

Summary a recent paper by @MEresearchUK

https://www.meresearch.org.uk/noise-and-light-hypersensitivity-in-me-cfs/

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd

https://assets.disabled.social/media_attachments/files/111/032/082/564/736/450/original/bc34b222dea62151.png


nostr:npub1fw59d2n9wtasrj9g3csams0vdw8u5gv4sta7v377wjy559d44c0q4050gf Sorry to hear that 🙁nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd


5/

“I thought you were getting better?” can hit like the pointy end of a very sharp sword sometimes. It feels accusatory. Like we’re being accused of not trying hard enough, that not getting better is somehow a personal failing, or even that we’re maybe just pretending that we’re as bad as we are for that imaginary #disabled bonus that many non-disabled people believe to exist."

#chroniclife #hiddenillness #invisibleillness nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg #Spoonie #ChronicallyIll #MEcfs #postcovid


4/
"Disabled people are expected to 1) cope cheerfully and positively accept their role as #disabled person; 2) pull ourselves together, minimizing the effect of #disability on our activities & colleagues; 3) strive to improve our condition & “get well” (if you think this seems diametrically opposed to expectation 1, you’re not the only one); 4) look after yourself with as little support as possible; 5) focus on recovery to return to or maintain employment"

@chronicillness @spoonies @disability


3/
"There are days I will be struggling to get about with a pair of gutter crutches, and a few days later I’ll be managing with one, or using only a cane. It’s assumed by those who have little experience of #chronicillness or #disability that I must be getting “better,” therefore I must be able to do more, and I will continue to get better.

So what happens when, the next day, you’re back to using both crutches, or a wheelchair?"

#ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll #Disabled


2/

"There are so many ways that an #illness or #disability can fluctuate, so many ways that the effects of such can change. But when you do have a #fluctuatingillness or disability, it often comes with many of the same pitfalls of a #hiddendisability. Judgement from those uneducated in the realities of disability, high expectations that are realistically beyond your capabilities, assumptions from others."

#chroniclife #hiddenillness #invisibleillness #Spoonies
#Spoonie #ChronicallyIll #MEcfs


🧵
I thought this was very good

"Riding the Roller Coaster of Fluctuating Disability"

https://themighty.com/topic/disability/roller-coaster-of-fluctuating-disability/

"When people think about #disability or #chronicillness, they tend to do so in a very black and white sort of way: Either you are completely #disabled, or you are not — this is your permanent status, and your disability (or lack thereof) will affect you the same way today as it will tomorrow.

Were it only that simple"

nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1ps6mpj39t44yqxzwvf06kptfx9r8cne0y4y5g9sfj3hfcmdy70cqws80vw nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22

1/

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“#Chronicfatiguesyndrome may have a post-viral infection origin”

Summary of recent @DrMaureenHanson paper urging an inquiry into what she considers the prime candidate for previously existing ME/CFS cases, enteroviruses.

https://medicalxpress.com/news/2023-09-chronic-fatigue-syndrome-post-viral-infection.html

nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis


nostr:npub19k7e8fpa2w67t08fk2rznx0d6ar3ahmuwvk4s7qz6hx2xw0guxxs828qrl Brain functioning doesn’t seem to have recovered unfortunately 🙁 #longcovid #covidbrain