there is a whole 12-page "expose" on how horrible #mecfs patients are from the view of the researchers and scientists in the CBT/GET camp. It is horrendeous. They completely get to tell their narrative... 1/
and never get properly confronted by the fact that they are the _minority_ in the international ME field, their research is so poor it tells ut nothing, and the little their research tells us usually actually is the opposite of what they claim. 2/
They are in their own echo-chamber when it comes to their research. They only collaborate with and attend conferences with others having their same view. They never attend the largest conference for #mecfs, only the small ones sharing their hypotheses 3/
any _true_ scientific criticism from both patients and other scientists they claim as personal attacks, despite that the research being so poor that you dont need an undergraduate to pull it apart. 4/
This is another line of continuous harassment of patients and allies face from this side of #mecfs research. Painting patients as the evil, when they are desperate to be heard. Claiming patients come in the way of the research, 5/
but not listening to them when they tell you your treatment is making them worse. Who is the weaker part? The researchers and doctors who have their jobs and get to completely spin their tale in the direction that gives them continued funding, making them look like martyrs? 6/
or the patients and caregivers desperately wanting to be taken seriously when their proposed treatments fail and make them worse? The patients already having lost economy, social life, and life-prospects to an illness that does not fit their narrative? 7/
Patients are being forced into treatments with high likelihood to make them worse, before any benefits are payed out, because of these people. Other #mecfs projects dont get funded, because these people continue following a narrative that their research keeps falisifying 8/
and young researchers are being taught that the way this group does research is "the gold standard" (they keep saying this in media), while their primary outcomes in preregs never pan ou &, almost always get changed, bold claims are made on non-sig results... 9/
incorrect statistical methods are applied, sig results against their hypotheses are ignored, and all this still gets published in peer-reviewed journals, because they have an in-group understanding and publish each others work no matter what. 10/
They also never mention that this same group actually themselves have tried stopping other Norwegian #mecfs researchers doing a study contrary to their hypotheses. So it's quite hypocritical that they get so upset when critical voices to a new, potentially harmful project 11/
of theirs has been met with criticism. The foothold they have in Norway is scary and makes life for so many patients and caregiver extremely difficult. It is a travesty that "investigative" journalists got only this one side, and never dug into the patient side. 12/12
