tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

"Tin Foil Hat Territory? The Gupta Program, the Lightning Process and the BPS [biopsychosocial] in #LongCovid and ME: How brain retraining therapies intersect with the biopsychosocial model"

https://longcovidadvocacy.substack.com/p/tin-foil-hat-territory-the-gupta

Hashtags:
@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

tomkindlon,
@tomkindlon@disabled.social avatar

3/

"This excellent article highlights the similarities of these methods with the unevidenced 'biopsychosocial' approach to ME/CFS which has dominated research and treatments for years and is now infiltrating Long Covid, including in NHS clinics."


@LongCovidAdvoc @longcovid @mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

4/

"We need to be vigilant and educated to spot this charlatanry. We need therapeutic treatments that actually work and stop gaslighting those with post-acute viral disease."

@LongCovidAdvoc @longcovid @mecfs

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

Responding to a BBC programme, Dr Edzard Ernst highlights data showing many are harmed by the Lighting Process and the lack of evidence for claims made.

He concludes: "Does anyone think that LP or its promoters are remotely serious?"

https://edzardernst.com/2024/05/almost-anyone-can-recover-from-long-covid-just-pay-a-lot-of-money-for-the-lightning-process-no-please-dont-i-was-joking/

@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

BBC: #LongCovid course is 'exploiting people', says ex-GB rower

Former Team GB rower Oonagh Cousins was offered a free course of the contested
alternative treatment "Lightning Process" (LP) for her long Covid. She says: "They were trying to suggest that I could think my way out of the symptoms, basically". The BBC has secret recordings from an LP-course confirming patients are told they can recover by changing thoughts, language and actions.

@longcovid #PwLC #MEcfs @mecfs #LC

1/

tomkindlon,
@tomkindlon@disabled.social avatar

2/

Professor and LC-researcher Danny Altmann says such behavioural approaches disregards the "mass" of measurable underlying damage in patients. Neuroscientist Dr Camilla Nord says the course is straying very far from neuroscience and calls it an abuse of scientific terms. The story is presented both as an article https://www.bbc.com/news/health-69040592 and a 38 min radio programme titled "Long Covid: Mind Over Matter?" https://www.bbc.co.uk/sounds/play/m001zg5q

#postcovid #postcovid19 #LC #Covidlonghaulers @longcovid @mecfs

tomkindlon, to coronavirus
@tomkindlon@disabled.social avatar

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

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

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

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New research from UK team:
Examining well-being and cognitive function in people with #longCovid and ME/CFS, and age-matched healthy controls: A Case-Case-Control Study

Free full text:
https://www.sciencedirect.com/science/article/pii/S0002934324002730

Hashtags:
@longcovid
#PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

tomkindlon, to longcovid
@tomkindlon@disabled.social avatar

The Role of Heparin in Postural Orthostatic Tachycardia Syndrome and Other Post-Acute Sequelae of COVID-19

Free full text:
https://www.mdpi.com/2077-0383/13/8/2405

Hashtags:

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain #POTS #LongCovid #PASC @pots

1/

tomkindlon,
@tomkindlon@disabled.social avatar

2/

"In this article, we review the evidence surrounding the post-acute sequelae of COVID-19 and the potential benefits of the use of heparin, with a special focus on the treatment of postural orthostatic tachycardia syndrome”


@longcovid @pots

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New 12-minute video:

"I believe microglia are the primary culprit behind , , , , and other & fatigue disorders.

Here is a quick video on what I am trying to do to fix the problem. - Jarred Younger"
https://www.youtube.com/watch?v=XggO__DlALw

@mecfs

@longcovid

@chronicpain @fibromyalgia

tomkindlon, to MultipleSclerosis
@tomkindlon@disabled.social avatar

Detailed report now available for free for:

Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: Proceedings of a Workshop

https://pubmed.ncbi.nlm.nih.gov/38648305/

@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
#PTLDS #multiplesclerosis @mecfs
#Lyme
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

ME Research UK:

Post exertional malaise is often referred to as the cardinal symptom of ME/CFS – & one also experienced by some with long COVID. A new paper looks at how monitoring lactate levels in the blood may provide a way to support pacing strategies for PEM
https://www.meresearch.org.uk/blood-lactate-monitoring-a-tool-to-support-the-management-of-post-exertional-malaise/

@mecfs

@longcovid

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

EEG study from Canada:

Machine learning algorithms for detection of visuomotor neural control differences in individuals with PASC and ME

Full text just published (for free) here:
https://www.frontiersin.org/articles/10.3389/fnhum.2024.1359162/full

@longcovid

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
"Why it's important that PEM is not fatigue"

https://mecfs.substack.com/p/why-its-important-that-pem-is-not

"*PEM is post-exertional malaise, also known as post-exertional symptom exacerbation. It is a symptom of ME/CFS and is also found in many people with "

@mecfs

1/

tomkindlon,
@tomkindlon@disabled.social avatar

3/
"But there is an even more important difference between PEM and fatigue: duration.

Fatigue generally lasts 24 hours. In really exceptional circumstances, say if someone ran a marathon, fatigue might last a couple of days."

@longcovid

@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

4/

"PEM is dangerous. PEM can last hours, days, weeks, months, or a lifetime. Its duration and severity are wildly out of proportion to whatever prompted it. It can result in permanent harm. PEM can take a person who is able to work or look after their children, and make them bedbound. PEM destroys lives."

@longcovid @mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

5/

"Any healthcare practitioner who fails to recognise the difference between fatigue and PEM is a danger to their patients."

#PwME #MyalgicE #postcovid19 #LC @longcovid @mecfs

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

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

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

1/

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

tomkindlon, to longcovid
@tomkindlon@disabled.social avatar

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

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

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

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

Newly announced upcoming clinical trial:

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

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

@mecfs

@longcovid

@covid19

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

CrunchME @wecrunchme

We have made images of the charts from the analysis of PubMed publications data for & available in our Google Drive, for use by anyone in advocacy 📊

https://drive.google.com/drive/folders/1eqNK09SJM-eRl02sZ1fjrl1F8tp4wWQ8

PEM = post-exertional malaise

@mecfs
@longcovid

@covid19

tomkindlon, to coronavirus
@tomkindlon@disabled.social avatar

"We have found a potential mechanism underlying which could represent a biomarker – that is, a tell-tale signature of the condition. We hope that this could help to pave the way to develop therapies and give some patients a firm diagnosis”

https://www.eurekalert.org/news-releases/1034636

@longcovid

@covid19
@novid
@auscovid19

tomkindlon, to longcovid
@tomkindlon@disabled.social avatar

Trial By Error: New Long Covid Exercise-and-Therapy Study Claims Success Despite Clinically Insignificant Findings

By David Tuller, DrPH (20 February 2024)

https://virology.ws/2024/02/20/trial-by-error-new-long-covid-exercise-and-therapy-study-claims-success-despite-clinically-insignificant-findings/

@longcovid

CastlTrAstonDrs, to random
@CastlTrAstonDrs@med-mastodon.com avatar

A stalking & painful scenarios that emerging .There are about 6 Mil childrens in 🇺🇸 might be living with / at the moment …
https://publications.aap.org/pediatrics/article/doi/10.1542/peds.2023-062570/196606/Postacute-Sequelae-of-SARS-CoV-2-in-Children?autologincheck=redirected

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