Lack of knowledge - or bad judgement?
Yesterday, a meeting was apparently held at Region Stockholm. It was the Health and Medical Board in Stockholm, together with invited guests, who discussed the lack of ME healthcare. Among those present were representatives of the Swedish Association for ME Patients (RME) and the Swedish Association for Difficult to Diagnose Infectious Diseases (FSI).
The FSI's Facebook page reads:
‘Today we from RME - The National Association for ME Patients and FSI participated in a meeting with the Health Board. Jenny Lundgren (chairman RME), Carina Lindstaf (chairman RME Stockholm) and Mats Lindström (chairman FSI). We highlighted the acute care crisis for ME patients, where the decision to end the agreements with private ME clinics and the transition to primary care has created chaos for around 3 500 patients. The situation has been further exacerbated by the Pharmaceutical Committee's Janusinfo advising against treatments and prescribing of drugs that previously worked.’
The post outlines the problems and proposed solutions jointly raised by FSI and RME at the meeting.
But apparently there were others besides patient representatives and the Health Board present. This becomes clear when the post includes a picture of the three chairs together with some other participants from the meeting.
‘We also took a picture afterwards of some of those who attended: Pictured from left: Mats Lindström (FSI), Jenny Lundgren (RME), Kersti Ejeby Gustavsbergs VC), Elin Lindsäter (Gustavsbergs VC and Academic Health Board), Carina Lindstaf (RME), Jacob Andersson Emad (Regional Programme Areas - RPO)"’
Screenshot from the FSI Facebook page
So wait. What?
Posting selfies with people who actively oppose the care we need - from a meeting about the lack of care - is... weird. Either the patient representatives lack knowledge or they lack judgement.
And what are the other three people at the meeting even doing there? They don't work in ME healthcare, do they?
For those of you who haven't read my blog before, Elin Lindsäter is a Swedish psychologist and researcher who I've written about quite a bit over the past couple of years. Her speciality is stress-related illnesses, but this summer, for some unfathomable reason, she became the reviewer responsible for a very problematic update of the care programme for ME in Viss (which is the Stockholm region's knowledge portal where caregivers can turn for adequate information). Without relevant expertise and with a clear ideological bias.
She and the two others in the picture are now in the starting blocks of a large and expensive study they call the ‘Tiredness Study’. Among other things, it aims to test CBT and gradually increased activity on people living with ‘severe and persistent tiredness’, which is their definition of fatigue. Lindsäter is the lead researcher, Kerstin Ejeby has signed the ethical review application on behalf of the principal investigator, and Jacob Andersson Emad is one of the other researchers in the study.
So it is not just anyone that FSI and RME choose to pose with after the meeting.
The target population for the study includes people with exhaustion disorder [the Swedish psychiatric diagnostic concept for stress and work related burnout], ME and post-covid, but also people living with other diagnoses such as cancer, diabetes and MS where fatigue can be part of the consequences. They will mix them all and give the same treatment. The clinical advisor for the study is Hans Knoop, a Dutch psychologist who has long been involved in problematic research that definitely does not benefit ME sufferers. It is also his treatment method that will be evaluated in the study.
Their belief is that ‘severe and persistent fatigue’ can indeed be triggered by an illness but that it is then maintained by faulty thought patterns and fears. They believe that people with ME, post-covid and exhaustion disorder can recover if only they change their attitude towards their illness.
In 2024, these researchers conducted a pilot study to test the concept, and this spring they will start recruiting 500 participants for the large study via Stockholm's primary care. The insight I have gained from participants in the pilot study clearly shows where Lindsäter stands when it comes to the view of ME and post-covid and that there are serious patient safety risks with this type of treatment.
It is of course very important for these researchers to maintain good relations with patient organisations. They need us, the sick, to ensure future recruitment, to be able to conduct their study and to get continued funding. They know that patient organisations could create major problems with the influx of participants if they are openly critical of the study.
It is crucial for patient organisations to be aware of the ideology and goals of the actors involved - and to clearly distance themselves from anything that puts the patient group at risk.
This is really, really weird... and definitely not okay 