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#ldn

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Antwortete im Thread

@CrimethInc Sounds like they’re never letting naltrexone powder in again and if they do so far the tariff is 125% I think. FML

#LDN is the only “treatment” I have for #MECFS and we have been getting it from China for 40+ years. We’re not going to start making it now.

So I woke up this morning to find out that the next time I need to order some #LDN, because it’s literally the only treatment I have for #MECFS, there will be a 104% tariff on it.

I’m really angry about it, I’m just so so glad that I didn’t get this from covid I caught at work. I’m not sure that I could go on if I destroyed my health participating in capitalism only to have that same system decide that I shouldn’t be able to get out of bed if I can’t afford a 104% Trump tax.

'Steeds meer huisartsen schrijven off-label naltrexon bij postcovidpatienten voor’

"lage dosis naltrexon van maximaal 5 mg per dag, een middel dat off-label al langer gebruikt bij onder meer ME/chronisch vermoeidheidsyndroom (cvs). Achterliggende hypothese is dat deze lage dosering leidt tot pijnvermindering en een anti-inflammatoir effect. "

"Naltrexon in hoge dosering (25mg) is geregistreerd voor alcohol- en opioidenverslaving, doordat het de werking van morfine blokkeert."

"het opbouwschema van naltrexon op haar Instagram account gezet"

"Daarnaast zijn er nog andere (niet-)medicamenteuze stappen die je als huisarts kunt zetten, zoals nagaan of de pacing goed wordt uitgevoerd. En bij posturaal orthostatisch tachycardiesyndroom (POTS) drie liter water per dag en zout adviseren, en eventueel een steunpanty.’"

medischcontact.nl/actueel/laat

www.medischcontact.nl‘Steeds meer huisartsen schrijven offlabel naltrexon bij postcovidpatienten voor’Huisartsen schrijven postcovidpatiënten met postexertionele malaise (PEM) steeds vaker, off-label, een lage dosering naltrexon voor. Dat vertelden Jojanneke Kant en longarts Merel Hellemons (ErasmusMC, onder meer werkzaam bij postcovidkliniek) op het recent gehouden ‘long covid symposium’.
Fortgeführter Thread

LongCovid polikliniek vervolg. Na POTS behandeling van afgelopen 4 weken die aanslaat, gaan we nu een poging doen de PEM een kopje kleiner te maken. Volgende paardenmiddel... #LDN
Heb al meer lotgenoten hiermee bezig gezien met wisselend succes. Vind vooral het aspect bijwerking op dromen/slaap een spannende aangezien dat niet al te best is. 🤞🏼

Blijk trouwens niet de enige die accuut crasht van klasse3 steunpanty 🫣 Die gaat ff in de kast.
My #LongCovid life

I cannot preach the wonders of low dose naltrexone enough. I asked to have it prescribed after i was diagnosed with mecfs and it does help a little, but where it really helps is with PTSD and i wish people were screaming that from the mountain tops.

I have chronic CPTSD and before I started taking it I hadn't had a restful night's sleep since i was in my early teens. LDN was night and day in terms of difference. It took a couple of weeks to kick in but when i did, my sleep was transformative.

I went from my usual bare wires on waking to feeling like i'd actually had some restorative sleep and that hasn't gone away as long as I've kept taking it.

It has minimal side effects and very few, if any, counter-indications and I honestly don't know why this isn't the first thing they do with someone who has a ptsd diagnosis. It could save lives.

Thema Ukrainekrieg:
Das Interview mit @efdavies in der @lagedernation Episode 401 sei jedem wärmstens ans Herz gelegt. Endlich eine Stimme, die nicht nur mit guten Argumenten den ganzen Bullsh*t der sogenannten Friedensbewegung debunkt, sondern dabei auch noch die notwendige Leidenschaft an den Tag legt, die andere Schnarchnasen vermissen lassen.

Link mit Timestamp zum Interview: lagedernation.org/podcast/ldn4

ME Research UK:

TRPM3 is an ion channel that is crucial for many physiological processes. A review bit.ly/3N7gdkS explores TRPM3 dysfunction in ME/CFS and the potential clinical benefits of the drug - low-dose naltrexone (LDN). Read more:
bit.ly/trpm3mecfs

Hashtags:
@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#postcovid19
#CovidBrain #ldn @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Antwortete im Thread

@raucao Geo and statistical data importing and viewing in dokieli: dokie.li/media/video/dokieli-g

Dokieli implements Client part of #ActivityPub client-to-server. Essentially it would be about sending a ( #LDN / AP ) notification (Activity) to a server.

If you have a GPX handy, try Open in dokieli (e.g., at dokie.li/ ).

If you want to donate in code or briefcase with cash to further the development, that'd be wonderful :)

Upcoming 16-week #LDN trial in Canada led by Luis Nacul:

Low-dose naltrexone for post-COVID fatigue syndrome: a study protocol for a double-blind, randomised trial in British Columbia

Free full text:
bmjopen.bmj.com/content/14/5/e

Hashtags:
@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid #CovidBrain
@mecfs #LongCovid #MEcfs #PwME

BMJ Open · Low-dose naltrexone for post-COVID fatigue syndrome: a study protocol for a double-blind, randomised trial in British ColumbiaIntroduction A significant proportion of individuals suffering from post COVID-19 condition (PCC, also known as long COVID) can present with persistent, disabling fatigue similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and post-viral fatigue syndromes. There remains no clear pharmacological therapy for patients with this subtype of PCC, which can be referred to as post-COVID fatigue syndrome (PCFS). A low dose of the opioid antagonist naltrexone (ie, low-dose naltrexone (LDN)) has emerged as an off-label treatment for treating fatigue and other symptoms in PCC. However, only small, non-controlled studies have assessed LDN in PCC, so randomised trials are urgently required. Methods and analysis A prospective, randomised, double-blind, parallel arm, placebo-controlled phase II trial will be performed to assess the efficacy of LDN for improving fatigue in PCFS. The trial will be decentralised and open to eligible individuals throughout the Canadian province of British Columbia (BC). Participants will be recruited through the province-wide Post-COVID-19 Interdisciplinary Clinical Care Network (PC-ICCN) and research volunteer platform (REACH BC). Eligible participants will be 19–69 years old, have had a confirmed or physician-suspected SARS-CoV-2 infection at least 3 months prior and meet clinical criteria for PCFS adapted from the Institute of Medicine ME/CFS criteria. Individuals who are taking opioid medications, have a history of ME/CFS prior to COVID-19 or history of significant liver disease will be excluded. Participants will be randomised to an LDN intervention arm (n=80) or placebo arm (n=80). Participants in each arm will be prescribed identical capsules starting at 1 mg daily and follow a prespecified schedule for up-titration to 4.5 mg daily or the maximum tolerated dose. The trial will be conducted over 16 weeks, with assessments at baseline, 6, 12 and 16 weeks. The primary outcome will be fatigue severity at 16 weeks evaluated by the Fatigue Severity Scale. Secondary outcomes will include pain Visual Analogue Scale score, overall symptom severity as measured by the Patient Phenotyping Questionnaire Short Form, 7-day step count and health-related quality of life measured by the EuroQol 5-Dimension questionnaire. Ethics and dissemination The trial has been authorised by Health Canada and approved by The University of British Columbia/Children’s and Women’s Health Centre of British Columbia Research Ethics Board. On completion, findings will be disseminated to patients, caregivers and clinicians through engagement activities within existing PCC and ME/CFS networks. Results will be published in academic journals and presented at conferences. Trial registration number [NCT05430152][1]. [1]: /lookup/external-ref?link_type=CLINTRIALGOV&access_num=NCT05430152&atom=%2Fbmjopen%2F14%2F5%2Fe085272.atom