Marjon Wormgoor

Kompetansetjenesten for CFS/ME har ikke bidratt til å bedre pasientenes situasjon. Mye er faktisk verre i dag enn i 2012 da tjenesten ble opprettet. Her bruker vi funn fra brukerundersøkelser som mål på endring. @jcvestre me-foreningen.no/har-kompetanse…

@ISLCPAIS @RobWust Thanks for the explanation and ambitious plans. See you in Amsterdam!

Dear Marjon, Thank you for raising this important point. We absolutely recognize the value of patient organisations and patient representatives within the Long COVID and PAIS field. As an independent non-profit conference, we have tried to keep registration fees as low as possible for all attendees while covering the substantial costs of organizing a large international scientific meeting (flighst, hotels etc.). Compared to several other conferences in this field, our registration fees are relatively modest while covering almost three scientific conference days across four calendar days, with many internationally recognized experts joining us physically in Amsterdam. We also fully understand that many patients can not travel to Amsterdam. At the same time, because the conference focuses strongly on emerging and unpublished scientific data, many researchers and clinicians feel more comfortable speaking openly in a non-livestreamed environment where scientific discussion can take place more freely. That said, accessibility remains very important to us. We have therefore already reached out to more than 120 patient organisations to explore whether they would like to help shape a publicly accessible patient recap initiative after the conference on Saturday 29 August. Our goal is to create understandable summaries of the most important conference highlights for the broader patient community. In parallel, we are also exploring curated video-on-demand options, where speakers themselves can decide which parts of their presentations may be shared afterwards. In addition, we are investigating whether students and volunteers could help translate selected sessions into more accessible formats through edited video clips, plain-language summaries, subtitles and written overviews. This is an ambitious project for a very small independent non-profit organisation, with much of the work being done by volunteers, including patients themselves. Hope this provides some context, and wishing you a good weekend.

Abstract submission for the 2026 Amsterdam ISLC-PAIS Conference is entering its final week! Submit your abstracts before 15 May. islc-pais.org The conference (26–29 Aug in Amsterdam) brings together interational PAIS experts, with a summer School and network events.

Follow-up of the paper that @RodenburgSanne and I published in 2021! No Evidence Supports Using Graded Exercise for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome medscape.com/viewarticle/no… medscape.com/viewarticle/no…

@sunsopeningband You refer to R53.0 vs. R53.1 (Chronic fatigue with vs without PEM)? R53 is 'only' a symptom code, it’s typically used as a placeholder until a more specific diagnosis is determined. It’s crucial for accurate documentation, especially in early stages of patient evaluation'

All I know is we’re going to need some evidence-based guidance on how our friends in the German-speaking world are going to operationalize these new ICD codes so we can ensure validity and reliability. Or the whole thing will become completely unworkable, very quickly.

Disarticulating PEM from ME is going to be a complete mess.

@MECFSNanoneedle @Gmwetz I have problems with 'or' in the CCC definitions: post-exertional malaise and/or fatigue.

@Gmwetz I would start with definitions from the Canadian Consensus Criteria and International Consensus Criteria. Then move on to objective measurement of PEM by Betsy Keller and WorkWell Foundation.

Where can I find the best definition for PEM ? I mean a clear description where we can differentiate between PEM and exercise intolerance … When someone exerts themselves, they may get (delayed) fatigue and a malaise feeling for several hours… Is this already PEM or “just” exercise intolerance? I think a lot of people with ME or long covid get this wrong …

@PutrinoLab @bmj_latest One of the authors is attached to the national advisory unit for CFS/ME in Norway and did NOT attend the conference in Stavanger.....

Quite disheartening to return from 10 days working with some of the most important and relevant #MECFS and #LongCOVID researchers in the world and to read this drivel being allowed through from @bmj_latest. Let's be unambiguous about this: BMJ has 1/ bmj.com/content/389/bm…

@dbkell We reviewed studies that evaluated ao GET in pwME/CFS. There were no studies available that studied GET in pwME diagnosed with narrow criteria including PEM. Only (partly) ineffective studies in patients diagnosed with wide (no PEM required) criteria. doi.org/10.1186/s12967…

There are plenty of anecdotes of harm, and clear mechanisms (of PESE/PEM) but if folk can point me at proper studies of the dangers (patient harm) as well as ineffectualness of GET and CBT I'd be grateful. #TeamClots

I dag skriver jeg i Aftenposten om at senfølger av covid-19 er vanlige og ofte vedvarende. Jeg tar også opp insentivene til å bagatellisere byrden senfølger utgjør for samfunnet. Vi må forebygge med bedre ventilasjon, luftrensere og FFP2-åndedrettsvern. aftenposten.no/meninger/debat…

@sunsopeningband The apparent unspecificity of consequences. E.g. brain fog following physical activity or physical symptoms following cognitive exertion.

Recording a research talk tomorrow on the bioenergetic impairments of PEM/PENE. What do you think this sciency audience of interested researchers from outside the field of ME/CFS and Long Covid should know?

We are thrilled to release a new preprint on reinfections today! This paper details the impact of COVID-19 reinfections on both people with and without #LongCovid. Overall, the odds of Long COVID increase with reinfections. researchsquare.com/article/rs-490… 1/

I dag har vi lansert nettsiden til en stor konferanse om ME og Lang Covid i mai neste år i Stavanger! 7. mai er heldagskonferanse for helsepersonell. 8. mai er åpen kveldskonferanse. Det er lurt å være tidlig ute med påmelding. Velkommen! mekonferanse.no

@epkedj @RobWust @PeeNee2 @HoosMariska Van deze samenwerking?

@RobWust @PeeNee2 @HoosMariska Oké bedankt. Ik las al op de Noorse ME vereniging heel veel aankondigingen. 👍👍

Goed nieuws. In hoeverre verschilt dit nieuwe onderzoek van het nog lopende #MuscleME onderzoek @RobWust ? #LongCovid #ME #MEcvs #PAIS me-gids.net/nieuwsartikel/…

@sunsopeningband Lucky you, who can write in your own mother language ....

I finally got the chance to sit down and write, which I've been waiting on for weeks, and everything is just crap. Outline is crap. Words are crap. Sentences are crap. Flow is crap. Just...crap. * sigh

Del 2 kom i dag. Ingrid Spilde ved forskning.no beskriver noe av forskningen bak PEM. forskning.no/me/hvorfor-bli…

forskning.no har fokus på PEM! En flott artikkel av Ingrid Spilde om hvordan PEM oppleves av ME-syke og hva som er konsekvensene når man ikke tar hensyn. Det refereres også til artikkelen som Sanne Rodenburg og jeg publiserte i 2023. forskning.no/.../victoria..…...

Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review - Sign the Petition! chng.it/9grQwCgxbX via @Change

@GladstoneB81859 @karenphysiocouk 2006 Canadian criteria?

@karenphysiocouk So their inclusion criteria are ME/CFS according to the Canadian Consensus Criteria, which requires PEM, but then they're excluding anyone with "post-exertion symptom exacerbation" (I.e. PEM). How does that work?

What in all holy hell is this? trialsjournal.biomedcentral.com/articles/10.11…

@LenaFoxfoot @MEforeldrene @Helsedir Behandling 'Ability' ved CFS/ME? Skulle det være 'Abilify'?

I dag har vi i @MEforeldrene lagt ut et innlegg vedr. arbeidet med @Helsedir’s nye nasjonale retningslinje for langvarig utmattelse og ME. Denne skal erstatte dagens nasjonale veileder. Vi tror den kan bli bra både for ME og ulike utmattelsestilstander! me-foreldrene.no/nasjonal-retni…

@jenbrea I have problems understanding fig. 1 and the text referring to it. "The case rate for provisional post-infectiv-synptoms was 35% at six wk., 27% at three months., 12% at six months, and 9% at 12 months. They do not match as far as I understand. Can you explain?

EBV, Q-FEVER, ROSS RIVER: Three completely unrelated infectious agents. 11% meet criteria for chronic fatigue syndrome 6 months later. Only risk factor? SEVERITY of the initial infection. bmj.com/content/333/75…

Please stop telling young people they should avoid #COVIDー19 infection to protect the old. Tell them to protect themselves. Long-term symptoms 6+ mo post-infection: EBV: 11% Q fever: 11% Ross River Virus: 11% West Nile Virus: 31% SARS: 87% Ebola: 90% COVID-19: We have no idea