This is so depressing the whole thing. Rheumatologists in Australia tend to not want to deal with me/cfs but in my experience 50% of them then gaslight you with Central Sentization ‘science’ cured by a mind-fullness course that they sell. It is totally obscene. At least I doubt this sort of thing is allowed able to happen in the Uk under the nhs. The main Australian charity has a medico who promotes many treatments and bio markers that are not scientific.
It was not my intention to claim that is was your intention. I’m a bit defensive here even though I respect and appreciate your analysis. Of course not. But why did they go with the BPS lobby in the first place if both are equally ridiculous? It seems like they belive that the patients are wrong about everything because they are wrong about something. Yet, they trust the BPS lobby that’s clearly wrong about something (or most things). In that case, we should probably also discuss how to present the factsheet. We might need a comms strategy if we want widespread adoption, because it’s bound to face some backlash in patient communities as well.
It happens much the same. The route to paying for a course of mindfulness may be replaced by a rehab centre but hiving off into the private stream is very much there too. And even within the NHS there are perks from keeping the merry-go-round turning.
I wish I could claim them as such but they're really the forum's factsheets. I'm just the person banging on about them all the time. But the more background digging I do, the more horrified I become at the rubbish that's out there. There really is a need for proper science-based stuff. Having it come principally from patients could perhaps help improve the image of PwME generally (and it's not PwME's fault that we don't have the best image).
I totally get your position and respect and appreciate your analysis too. I just get frustrated and feel uncomfortable things need saying at times. Because it is the default position within our society - the easy way to explain things - what they call the 'folk psychology'. ME/CFS brings out what human beings really think of each other I am afraid. I think Sasha and her team are pretty good at that. And they are bouncing stuff off everyone and there is enough common sense and insight around the forum to make me optimistic that some pretty good documents can be put out.
I believe that the main blame should go to GP's. Patients spend years visiting their GP's and because the labs don't show anything they don't get believed no matter how ill they are. They'll only get believed if they complain of mental health problems also. Then they are also too young to be ill etc. Nothing but gaslighting. Patients will naturally try to find help from other means, these days probably mainly from the internet. They'll use search words like "exercise allergy" and that'll be the first time they learn of ME or CFS and also about all the "comorbidities". From advocacy group info sheets and from the fact sheets of formal medical establishments. They'll identify themselves to these illnesses and syndromes and consult their GP's about the possibility of having some of them. That's how they'll slowly get a nice list of new diagnoses and think that they finally are going to get some sense to their situations and real help. But in reality because of the new "TikTok" diagnoses (I'm not saying that they are not real, just how many medical professionals see them), the patients still don't get any help, or the help might be even harmful. Then the GP's don't test them anymore. They don't refer them to other specialities anymore because nobody wants to deal with these difficult patients. Only ones willing are the mental health experts. Sure, the BPS people have contributed heavily so that the situation is like this but... If the GP's just would listen and believe their patients, things would probably be a lot better. But they just stare at their PC screens and read lab results.
Absolutely, that is my favourite bête noir and where I tend to upset even more people, including my niece, who is a GP, although I think she agrees with me now. The BPS people have made a nice little earner out of CFS but the GPs have always been at least as much to blame. As I see it a fresh-faced young medic has the choice of becoming a real doctor (with resources and expertise in a hospital) or a witch-doctor (in a health centre). People choose what career suits them. And now we have professors of witch-doctoring and surprise surprise they are all for the rehab jamboree and the mind-body interaction. I had better shut up now.
It's still not me! I don't have a project-wide team! It's the committee that has set up the framework and will initiate and organise future factsheets. I just happen to have done initial bottom-kicking as you say and am involved in the first one. But because the process is being developed around this first go I'm currently thinking a lot about the whole thing and I'm noting suggestions and issues, including your very good one about comms, @Utsikt.
Anything the health care worker believe is ridiculous can be weaponized against the patient, regardless of the evidence base behind it. For example I've never met a patient with meat allergy who has not experienced ridicule by their GP for daring to suggest such a thing as a meat allergy exist, and at least in Norway the GP would only have to look at which bloodwork they can order to see that it is in fact a real condition and it can be tested for with a simple blood test. Calling a group "hysteric" seem to be the magic way to get people to agree. We have an iodine crisis in Norwegian pregnant and nursing women - despite changes in dietary guidelines due to these findings (>50% women deficient, first discovered in 2016), several reports and media articles on the topic - no change in the prevalence of deficiency in the target population when it's been measured. On the other hand, saying current dietary guidelines for when to start feeding infants are "hysteric"? I'm meeting several women who have been told to give allergens from 3 months old something that is relatively recent to recommend in certain research circles, and maybe one or two have been told to take iodine... We have recent numbers in Norway on disability payments after rehab for pwME, showing an increase in payments following rehab and few if any returning to pre-illness income levels. Objective findings using data registries. This week a friend told me she would lose her disability payment unless she went to rehab - and the doctor behind this threat had cited "recent research showing you can become healthy in by using these techniques" and I assume the reference was to the most recent Norwegian BPS study on Long covid the way it was phrased. Funny that the doctor would read that study but not the one showing rehab doesn't work long term.
It's also especially hollow considering that there are numerous anomalies, just none that are universal, and that this has lead to parallel "there are no anomalies" and "if you look carefully enough, everyone has anomalies on some tests" choruses, all while they promote garbage with zero evidence like central sensitization which are based on imagined anomalies in whatever or something else. If at least the reasoning was consistent, but it never truly is.
News segment on Swedish radio (2 minutes). Andreas tre döttrar har postcovid – regeringen vill förbättra vården https://www.sverigesradio.se/artike...ar-postcovid-regeringen-vill-forbattra-varden
Summary in Swedish, published by the Swedish Covid Association: NordForsk publicerar viktig rapport om postcovid https://covidforeningen.se/nordforsk-publicerar-viktig-rapport-om-postcovid/
Does anybody here know what happened to dr Jesper Mehlsen's licence to practice medicine? What is the controversy about? I'm unable to try and look it up myself at the moment, but I'm curious to know so I would very much appreciate it if someone would maybe be able to give a short summary, please? This recent opinion piece alludes to something but gives no real details ("Jesper Mehlsen deserves recognition rather than unbalanced criticism"): https://sundhedspolitisktidsskrift....-anerkendelse-frem-for-unuanceret-kritik.html
The answer at the bottom says this: Jesper Mehlsen had his authorization revoked in January because – despite repeated requests from the Danish Patient Safety Agency – he did not meet the conditions for the enhanced supervision he has been under since 2023. Of course, we also mention this.
This article says his authorization has been restored, as of yesterday: https://sundhedspolitisktidsskrift....efter-gentagne-henvendelser-fra-styrelse.html
This article describes a few of the reasons for putting him under supervision. I’m not able to make a summary myself: https://sundhedspolitisktidsskrift....-mehlsen-udsaetter-born-og-unge-for-fare.html
Not ME. About brain fatigue (brain fog) on Swedish breakfast TV today (7 minutes). Nyhetsmorgon: Så hanterar du hjärntrötthet – hjärnforskarens bästa strategier https://www.tv4play.se/klipp/2fd85287cd70add79471
