Yet another great article from the same journalist, this time including information on two-day CPETs and how deconditioning does not explain the findings. Why do many people with ME and chronic covid get sick from activity?
And there was an article from the public broadcaster NRK yesterday about a young man bed bound with with ME and EDS who didn't get the help he needs, and a very moving reportage on the evening news about severely ill Emilie who has been bed bound in darkness for years and on the very fragile situation she and her family is in. Some very informative media coverage about ME these days in Norway! Are we finally moving forward from the "ME-debate"?
New blog post by @MittEremltage, highlighting some of the harmful consequences that are affecting pwME due to the political decisions of Region Stockholm. Really well-written and important, as always. Great work, thank you so much MittEremltage! It's a horrible situation, and I really feel for those who are affected Har primärvården i region Stockholm växlat upp? https://mitteremitage.wordpress.com/2024/06/18/har-primarvarden-i-region-stockholm-vaxlat-upp/
(Not ME.) POTS is mentioned in an article in one of Swedens two largest evening newspapers today. Christina Applegates nya sorg: Dottern sjuk https://www.expressen.se/noje/christina-applegates-nya-sorg-dottern-sjuk/
I'm not familiar enough with the terminology in English for politics to know what it would be called, but a representative from a political party has asked the current minister of work in Norway about the situation for pwME and how nothing really has changed the last few years despite clear instructions that things needed to improve. The question and answer can be read here (In Norwegian) A patient advocate noted how the answer was a non-answer: The minister of work replies with something along the lines of "we have instructed the services to improve" but is ignoring that the patients are reporting that several years after this instruction there has been no improvements. What frustrates me most is that a long covid advocate, who has been clear LC is not ME, have commented that it's a good answer, and thus also ignoring that the answer is full of things that should be but is not the reality.
"Can healthcare cure our new widespread disease - post-covid?", a video (54 minutes) by Pandemifonden, recorded today at Almedalsveckan (a Swedish yearly political "festival"). Panelists: • Lisa Noren, MD, Swedish Covid Association • Marie Morell, Regional council member, Östergötland • Marcus Ståhlberg, Cardiologist, Karolinska • Niklas Arnberg, Virologist, Pandemifonden Kan sjukvården bota vår nya folksjukdom - postcovid? https://www.youtube.com/live/5691zdydRMs
(Not ME specific.) Sweden: Patient researcher Sara Riggare (https://www.riggare.se and https://www.spetspatienterna.se) and Therese Scott Duncan at E-health and Health Data at Uppsala University, are inviting people to participate in their latest research study. https://doit.medfarm.uu.se/bin/kurt3/kurt/8871475
New blog post by @MittEremltage, highlighting some really worrying changes in Region Stockholm, seemingly linked to the Oslo Consortium. Region Stockholm uppdaterar vårdprogram för ME med ovetenskapliga påståenden om KBT och gradvis utökad aktivitet https://mitteremitage.wordpress.com...staenden-om-kbt-och-gradvis-utokad-aktivitet/
Another very important blog post by @MittEremltage, taking a detailed look at the seriously worrying changes to Region Stockholm's guidelines for ME/CFS. Do click through and read the whole article. Thank you so much, MittEremitage Genomgång av ändringar i vårdprogram för ME i viss.nu https://mitteremitage.wordpress.com...-av-andringar-i-vardprogram-for-me-i-viss-nu/ ETA: Summarised really well by a pwME on social media (auto-translated): "The overall change in Viss.nu is to become vaguer, lumping ME with conditions that cause various forms of fatigue, and obscuring the situation and needs of the most severely ill."
Science Norway: Victoria Augustine falls ill from everyday activities like taking a shower or family visits: “I end up bedridden with a feverish feeling and body aches" By Ingrid Spilde "Victoria Augustine Trulsen, 25, can remember the first time she thought: This can't be normal. She had been struggling for a while after having mononucleosis. But there was never any doubt that when autumn came, Trulsen would start 10th grade – the final year of lower secondary school. However, that plan crashed already on the first day of school. 'I managed half a day of school. Then I just had to go home, and I was bedridden afterwards. It was really scary,' Trulsen tells sciencenorway.no. 'At first, I clung to what the doctors said – that you can be unwell for a long time after mono. I'm glad I didn't know it would last this long.' This was the start of a period where Trulsen was very ill. She spent most of her time in bed and was unable to complete the school year. She was eventually diagnosed with ME/CFS." --- "She frequently exceeds the limits of what she can tolerate, and then the first symptoms appear. 'My pulse rises, and my face swells up. My skin becomes red and shiny. My hands shake, and my body starts to ache. Then I lie down if I can. I draw the curtains and put in earplugs' says Trulsen. Sometimes she manages to save herself and avoid crashing. But it's not that easy. 'You want to do so much. I live a bit on adrenaline and just want to take care of this or that task,' says Trulsen. The result can be a serious PEM episode." --- "However, pacing is not as easy to achieve as we might think. A characteristic feature of PEM is that the reaction to activity is often delayed. It can come several hours after the activity itself. Often, the reaction does not fully set in until the next day. Additionally, the amount of energy you have at your disposal can vary from day to day. This variability makes it extra difficult to know which activities one can tolerate and how much activity triggers PEM." --- "Sommerfelt believes part of the problem is that PEM is often completely invisible to others. 'During an activity, it's not possible for others to notice that someone has gone over their limit,' he says. And when the crash comes, perhaps the next day, no one notices that the person is in bed and feeling terribly unwell. Many ME/CFS patients have expressed that they wish other people could understand how profoundly ill they become. Cotton would like people to understand that cheering them on doesn't help. We are so used to thinking that it is healthy and positive to push ourselves. We cheer and motivate each other to keep going. But for people with PEM, the effect can be the exact opposite, Cotton believes. 'Pushing, persuading, and cheering – come on, you can do this, just a little more – is one of the most dangerous things you can do. By exceeding our tolerance limit over time, we risk long-term deterioration,' she says. 'Instead, we need those around us to encourage us to rest and take breaks. We need to hear them say: 'Sit down, put on sunglasses, go and rest for fifteen minutes!' And then you can come back so we can be together again afterwards,' she says."
However, pacing is not as easy to achieve as we might think. I think this is an important point that needs to be more prominent. Though it does also open the doors to hacks and opportunists everywhere to play the expert at 'teaching' patients how to do it.
More about this, in today's blog post by @MittEremltage. Much appreciated as always, thank you! A massive thank you to the independend activist/patient advocate(s) who contacted Viss.nu to request these changes, excellent effort! No thanks to RME (the Swedish ME Association) though, their silence is very telling... Viss.nu har gjort vissa ändringar https://mitteremitage.wordpress.com/2024/07/06/viss-nu-har-gjort-vissa-andringar/
One important missing detail is that even if done perfectly, it offers no guarantee. That seems to be a common and misguided belief, and how it's talked about strongly implies it. Independent of the fact that most people simply can't. It's certainly the best strategy, given the complete inability to predict what can lead to deterioration, but plenty have paced ideally and still gotten worse. But of course that's usually where lots of nonsense about nocebo and expectations causing outcomes, no matter how much cherry-picking that requires. That BS will probably never die. Even in some distant future where all disease is a thing of the past, there will be people wishing it were all true, and that's all that's required for beliefs like this to stick around.
Yep. It has not in any sense made me better. It has just helped slow the decline down. Which is no small thing, can even be a critical thing, and we are not in a position to be fussy about what few tools we have to hand. But it is not even a 'treatment', let alone a cure. It is just all we have for now.
Yes, pacing is not a treatment, pacing by itself will not result in any improvement in the underlying condition. And to suggest it might is no different to the assertions that recovery is possible for all by the BPS cultists. Pacing only helps minimise any harm from over exertion and PEM. The best rational for pacing is that for most will help minimise the ‘feeling/consequences of being ill’ associated with PEM. What follows is not based on research data, but it is what I see as the current patient perspective: If a person with ME is lucky and their current condition allows the possibility of some spontaneous improvement pacing only contributes to creating the best conditions to allow that improvement to happen, but for those experiencing this it is important to recognise that any such improvement is not being caused by pacing so it will only go as far as the underlying condition allows. Other than the very few (6%?), for most this will mean improvement to a ceiling. In such circumstance the belief that pacing is curative, which is particularly likely where pacing has been operationalised as a therapeutic intervention, can be harmful, as it encourages the patient to continue pushing beyond their ceiling, triggering PEM and resulting in a subsequent over exertion induced relapse. Not pacing results in PEM which may for some cause short term deterioration but further for a significant proportion will result in a worsening of the underlying condition which becomes long term or even permanent. For those that are unlucky to be experiencing deterioration in their underlying condition not caused by over exertion, pacing will not prevent this, though it will minimise the chances of over exertion and PEM compounding that deterioration. For the very severe the thresholds for triggering PEM may be so low that even the very basics of daily living trigger it, resulting in rolling PEM. Very restrictive pacing may be necessary to avoid or minimise further deterioration, but again of itself is not curative. In summary pacing of itself is not curative, though for some it may contribute to the best circumstances for spontaneous improvement, rather it helps reduce the negative consequences of PEM. For many pacing also helps minimise any further deterioration due to over exertion. However for some their underlying condition may deteriorate independently of their activity levels such that pacing can not prevent it, merely minimise any additional deterioration from over exertion.
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/
