Knowledge development post-COVID-19 by NordForsk The purpose of this policy paper is to summarise the key scientific findings on PCC and the relevant research needs that have been identified in the project “Knowledge development post-COVID” initiated by the Nordic Council of Ministers in accordance with the policy priorities of the Nordic Council. Knowledge gaps related to PCC and lessons learnt for developing preparedness for future pandemics and strengthening health resilience are discussed in a Nordic context. Nordic opportunities for collaboration within PCC research, research funding, and policy development are also highlighted. https://www.nordforsk.org/2025/knowledge-development-post-covid-19
ST-tidningen has published a disgusting opinion piece/comment on the article about Jessika today, by an anonymous GP who falsely frames ME as psychiatric Can be upsetting/triggering for those of us who have been subjected to medical gaslighting and other kinds of medical harm. ME orsakar enormt lidande men saknar definition https://www.sttidningen.se/asikt/vi...-kvinnor.5cab967d-7692-41c2-b4a3-3bf96ee62ebe Archived version (to avoid giving ST-tidningen traffic/clicks): https://archive.is/1I3lX I desperately wish someone like Ola Didrik Saugstad would write a very strong reply to the newspaper... I wish we had knowledgeable doctors and skillful patient organisations in Sweden who had the backbone, courage and willingness to stand up for us -- the severely ill in particular -- and to counter dangerous and harmful disinformation and opinion pieces like this one.
«No measureable abnormalities are found». That’s a blatant lie. There are plenty of things that are wrong, we just don’t know how the pieces fits together.
@MittEremltage shares her thoughts on today's vile opinion piece: Ett ideologiskt ställningstagande snarare än okunskap https://mitteremitage.wordpress.com...ogiskt-stallningstagande-snarare-an-okunskap/
The Swedish Covid Association recently published a guide for researchers, on how to design research studies for people with PEM. It has been fact checked by a senior fellow/medical doctor. https://covidforeningen.se/till-dig-som-forskare/
10.5 In conclusion, on the validity of the study The basic assumption about what causes PEM/PESE thus influences the choice of study population and outcome measures, which in turn systematically affects study results and perceptions of the generalizability of the results, i.e. the validity of the study. In this way, i.e. through methodologically substandard research, the questioning and minimizing attitude that exists towards the diagnoses ME, post-covid and the exercise-induced symptom worsening PEM/PESE is maintained. They are calling it out! And they show examples of poor research.
The Swedish Covid Association recently published a guide/checklist for people who are considering taking part in a research study. Know your rights + some good questions to ask before you decide. https://covidforeningen.se/checklista-delta-i-studie/
I think that statement and the fact that the neurological classification was a mistake are correct. There are no measurable abnormalities that we can confidently attribute to ME/CFS. Other than secondary effects of chronic immobility and poor nutrition.
This isn’t going to stop the BPS lobby’s lies. They already lie about risks in their ethics applications. Hopefully it will lead to more awareness emong patients.
Are there no abnormalities at all, or are there some that we can’t attribute to ME/CFS? I read it as the former. Would that still be correct?
Well, some people with ME/CFS have abnormalities just as lots of other people do, but basically there are none at all that we can predictably find. So yes the former.
They weaponize the "no abnormalities" argument, though. It's not about whether the statement is true or not -- it's about how it is being used against us in bad faith, including to deny us even the most basic sort of medical care or tests. For example, for me personally it meant that it took more than 10 years(!) before anyone agreed to measure my blood pressure or even do a standard basic blood test. And when they finally did, the results showed abnormalities that needed to be investigated further, including some that could also be treated.
@mango good point. They use an ME/CFS diagnosis to predict no findings. And they also use it as a proof that ME/CFS has to be psychological. That’s like saying «All grass is green. The car is green, therefore, the car is grass.» And it doesn’t account for potential future findings.
The no abnormalities argument is misused but I think it would be less weaponised if advocacy groups and charities did not constantly claim abnormalities are known when they are not. I think the example of congenital inability to feel pain is quite interesting in this respect. It is perhaps the perfect example of a 'physical, neurological' illness where absolutely nothing could be found - at least until the person had smashed their joints to pieces and burned bits of their fingers off. The only pathology consists of an invisible gene that makes bits of RNA that hide away in the nucleus of certain nerve cells. Otherwise everything is completely normal.
Yeah, sure. Blame the patient organisations... That's not what reality looks like, though. They weaponize anything and everything against us, no matter what the advocacy groups do or don't do. Even things like asking for one's legal patient rights to be respected (eg the right to not be harmed or discriminated against, and the right to informed consent) are currently being used to deny us care and support/help.
I’d rather say that the lies, gaslighting, and abuse by the BPS-lobby is entirely the fault of the BPS-lobby. They could just as well have said «Even though we can’t find anything wrong, we still believe you when you tell us what makes you worse. We’ll do our best to accommodate your needs if you need our help with other aspects of your life or just dealing with severe illness in general.» They’ve chosen to do the opposite. That’s their fault. The professionals (i.e. the researchers and doctors) should also face higher expectations of scientific rigour. They should be able to look past dubious claims, not weaponize it against the patients.
It is, but what if the BPS lobby has the sympathy of almost all other branches of medicine because of the persistent claims about mitochondria and retroviruses and neck subluxation and dysautonomia and mast cells and what-not? I am pretty sure that the reason why none of the clinicians in the rheumatology unit came to my seminar last month, other than my two close B cell collaborators, was because they want shot of all patients with ME/CFS because they are fed up with all this stuff the patients bring along with them. That is entirely unfair but I think it needs to be recognised as a reality. When I initially proposed that an ME/CFS trial might be set up at UCL several colleagues wrote a letter to the head of department to say that these patients should not be treated in our unit. I do think advocacy groups have had a role in this.
What if the persistent claims are there because nobody believed them from the start (edit: before the claims)? And the claims of the patients are no more ridiculous than the claims of the BPS-lobby, and plenty of other reseachers and doctors.
I am not in the least blaming patients for believing in these so-called abnormalities. We would all do that in the circumstances. That was never my intention. My point is that advocacy groups and charities that are there to help patients may be doing the opposite by feeding these narratives. We have seen it with the '9000 papers on biomedical abnormalities' from MEA. We have seen it from MEAction all the time. We have charities and advocacy groups happy to endorse stories about micro-clots and whatever. 'There for ME' have picked up the same stuff. High profile Twitter-scientists post this stuff constantly claiming to be working day and night for patients. Being 'no more ridiculous' is not gong to win the argument. What I think could win is sticking to what is really known. And putting it out there in Sasha's factsheets.
