I think a useful partial parallel might be diabetes where it is necessary to 'pace' intake of carbs and insulin. However well the diet and insulin are controlled, it doesn't cure diabetes, but does help to avoid 'crashes'. They are management strategies for avoiding worsening, not cures.
I've started a new thread for Elin Lindsäter's related research study (currently recruiting): https://www.s4me.info/threads/swede...ue-a-feasibility-study-lindsäter-et-al.39238/
A second article from same journalist about PEM has been translated into English: Title: Why does physical activity exacerbate symptoms in ME/CFS and long Covid patients? quote: In a summary from 2023, Systrom and his colleagues write that poor fitness does not lead to the physical changes that they see in the bodies of ME/CFS and long Covid patients with PEM. Neither do the researchers that sciencenorway.no has spoken with believe that PEM can be explained by poor fitness. “This probably has nothing to do with deconditioning. It appears to be something the patients react to neuroendocrinologically, which makes the body respond differently after physical activity,” says Vøllestad. Sommerfelt suggests that the illness' progression often indicates that PEM is not related to poor fitness due to long-term inactivity. “PEM occurs at the onset of the illness. Most people can remember which week they fell ill, and PEM is a characteristic already from the first weeks and months,” he says. https://www.sciencenorway.no/chroni...oms-in-me/cfs-and-long-covid-patients/2382080
Though also with diabetes long-term consequences are ignored. Blood vessel damage due to high blood sugar over time causing worse blood circulation and at worst gangrene and amputations. We really aren't doing well treating conditions long term I feel
Masters thesis in Norwegian with English summary https://brage.inn.no/inn-xmlui/bitstream/handle/11250/3138625/no.inn:inspera:224834835:91517292.pdf?sequence=1&isAllowed=y ME/CFS - Helserelatert livskvalitet ME/CFS - Health-related quality of life Kandidatnr: 22 - Mats Huseby Fakultet for Helse- og sosialfag Masteroppgave i Master i psykisk helsearbeid Studieprogram: Master psykisk helsearbeid, innlevering mai 2024 Antall ord: 23 993 ekskl. forside, referanser, noter, tabeller/figurer og vedlegg Sammendrag på norsk Myalgic Encephalomyelitis/Chronic Fatigue Syndrom (ME/CFS) er en kompleks, kronisk medisinsk tilstand som rammer mange av kroppens systemer og dens patologi er fortsatt under undersøkelse. Tidligere forskning har pekt på at helserelatert livskvalitet er svært lav for denne gruppen. Forskningsprosjektet Tjenesten og MEg har stilt datamateriale fra en større tverrsnittsstudie til rådighet for denne oppgaven, herunder det standardiserte spørreskjemaet Short Form Health Survey (SF-36) som ser på helserelatert livskvalitet. Utvalget består av de som har fått stilt ME-diagnose hos fastlege og/eller spesialist (n=581). Funn i utvalget, helserelatert livskvalitet målt ved SF-36, ble sammenlignet med normalbefolkningen, andre sykdomsgrupper og tidligere ME-studier. Det ble også søkt etter faktorer som kunne forklare variasjon i helserelatert livskvalitet i utvalget. Helserelatert livskvalitet for ME-syke i utvalget er signifikant og betydelig lavere enn hos normalbefolkningen. Fysisk helserelatert livskvalitet er signifikant lavere enn for de 18 kroniske sykdomsgruppene det ble sammenlignet med. Mental helserelatert livskvalitet viser et mer sammensatt bilde. For undergruppene vitalitet (VT) og sosial funksjon (SF) er den signifikant lavere for de ME-syke. For undergruppene sosial rolle funksjon (RE) og mental helse generelt (MH) har flere andre sykdomsgrupper tilsvarende eller dårligere skår. Sammenlignet med tidligere ME-undersøkelser har utvalget lavere fysisk helserelatert livskvalitet og noe høyere mental helserelatert livskvalitet. Dataene bekrefter imidlertid det overordnede mønsteret i tidligere undersøkelser som viser svært lav fysisk helserelatert livskvalitet, herunder spesielt lav fysisk rollefunksjon (RF) og til dels generell helse (GH). Det samme gjelder lav skår på vitalitet (VT) og sosialt liv (SF). De ME-syke i utvalget ser sin nedsatte arbeidsevne/begrensning i aktivitet som et resultat av dårlig fysisk helse (RF), og ikke på grunn av følelsesmessige problemer (RE). Det er ME-diagnosen som først og fremst forklarer lav helserelatert livskvalitet. Demografiske faktorer som kjønn, alder, inntekt og sivilstatus forklare lite av variasjonen i utvalget. PEM-skår (Post exertional malaise, anstrengelsesutløst symptomforverring) er meget sterk negativt korrelert med fysisk helserelatert livskvalitet, forklart med nedsatt fysisk funksjon (PF) og smerte (BP). Det er mer moderat negativ sammenheng mellom PEM-skår og mental helserelatert livskvalitet, forklart ved lavere skår på sosialt liv (SF) og vitalitet (VT). Summary in English Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated. Previous research has pointed out that health-related quality of life (HRQoL) is very low for this group. The research project “Tjenesten og MEg” has made data material from a larger cross-sectional study available for this thesis, including the standardized questionnaire Short Form Health Survey (SF-36) which looks at HRQoL. The sample consists of those who have been diagnosed with ME/CFS by a general practitioner and/or specialist (n=581). Findings in the sample in HRQoL, measured by SF-36, were compared with the normal population, other chronic disease groups and previous ME/CFS studies. The material was also examined for factors that could explain variation in the sample. HRQoL for ME/CFS sample was significantly and considerably lower than in the normal population. Physical HRQoL was significantly lower than for the 18 chronic disease groups with which it was compared. Mental health-related quality of life shows a more mixed picture. For the subgroups vitality (VT) and social function (SF), it is significantly lower for those with ME/CFS. For the subgroups social role function (RE) and mental health in general (MH), several other disease groups have similar or worse scores. Compared to previous ME/CFS surveys, the sample has a lower physical HRQoL and somewhat higher mental HRQoL. However, the data confirm the overall pattern in previous surveys which show a very low physical HRQoL, including particularly low physical role function (RF) and general health (GH). The same applies to low scores on vitality (VT) and social functioning (SF). The ME/CFS sample see their reduced ability to work/limitation in activity as a result of poor physical health represented by role-physical (RF), and not because of emotional problems represented by role-emotional (RE). It is the ME diagnosis that primarily explains low HRQoL. Demographic factors such as gender, age, income and marital status explain little of the variation in the sample. PEM scores (Post exertional malaise) are very strongly negatively correlated with physical HRQoL, explained by reduced physical function (PF) and bodily pain (BP). There is a more moderate negative correlation between PEM scores and mental HRQoL, explained by lower scores on social functioning (SF) and vitality (VT).
Thank you. I'm skimming it and it looks very good so far. Should this have its own thread or be moved to the Tjenesten og Meg thread as it's based on data from their study?
New thread for the study here: ME/CFS Health-related quality of life, 2024, Huseby Note also the tag for the Tjenesten og MEg study.
I've started a new thread for the changes to Region Stockholm's guidelines for ME: Sweden: Problematic changes to Region Stockholm's ME/CFS guidelines https://www.s4me.info/threads/swede...to-region-stockholms-me-cfs-guidelines.39260/
Great summary. Pacing is definitely not easy! And whilst it can help manage some symptoms for some people it is not a cure!
Exhaustion disorder, not ME. Relevant because of how often pwME are misdiagnosed as having ED (and in many other countries people with ED are lumped into the CFS diagnosis). Press release by Uppsala University: Fel fokus vid behandling av utmattningssyndrom https://www.uu.se/press/pressmeddel...el-fokus-vid-behandling-av-utmattningssyndrom van de Leur, Jakob Clason; Psychological Treatment of Stress-Induced Exhaustion Disorder: Towards a Contextual Behavioral Approach; https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-526606
Ah, I was wondering why a research news site in Norway had picked it up. They also managed to interview professor Reme from the Oslo Chronic Fatigue Consortium who of course mixed with with ME and LC. Thread here.
I highly doubt that anything useful has ever come out of doing things this way. They latch on to a wheel of possible explanations, spin it a bit, spend some time on one possible interpretation, call it successful, then move on to a slightly different version, now all of which have been tried several times. This is exactly how not to do anything. It has zero chance of success and this way of doing things has never worked anywhere. It's the opposite of systematic, and simply ignores all the facts. As they say they make assumptions, but never bother to falsify them, because they don't really believe in them and don't care either way. So yet again, the usual 0 = 0 = success formula, but it's cheaper, and how can you argue against cheaper? And it's still the same freaking thing anyway: We are so far past the point at which this is criminal negligence and fraud, but it's beloved so it's like a trolley problem that just keeps plowing through lives where no one dares to even ask the question: why are we even plowing trolleys through people here? Seriously? Anyone? Fundamentally intelligence is about being able to adapt and learn from outcomes. Here they never show any such capacity, they simply mindlessly keep doing the same things that have always failed, and they keep getting money and awards for it. You could not build a worse system than this if you tried.
The shorter programme is based on a new treatment model based on Acceptance and Commitment Therapy (ACT), where exhaustion disorder is seen as an existential crisis resulting from a lack of connection with meaningfulness. The more things change, the more they stay the same.
One of Norway's pop-psychologists (Frode Thuen) has given a positive review on the book "Gjør ikke skade" ("Do no harm") by Frøydis Lilledalen (herself a psycholgist ill with ME). I think this will be helpful for having the book reach a larger audience
That sounds encouraging Midnattsol. Members may be interested in this thread about Grete: Clinical psychologist Grete Lilledalen about ME and CBT/GET.
