CFS did not exist until the second half of the 1980s. This term was invented by a number of people based on various motives. Previously, the disease was known as benign ME which was later renamed ME (Myalgic Encepahilitis) because it turned out not to be ‘benign’ at all. For governments (CDC in the US) and (re) insurance companies there was an interest to relabel ME into chronic fatigue syndrome, a condition where the patient has false illness beliefs (so biomedically there would be no basis for the complaints). Fatigue became the characteristic factor for the disorder and it was no longer called a disease.
https://pacegranskaren.files.wordpress.com/2016/09/unum-chronic-fatigue-manqement-program.pdf
The above link refers to a document from UNUM insurance company. Several researchers from the large PACE trial (which in the meantime has convincingly been exposed as a manipulated research) were (and still are) connected to this insurance company. Also Sir Simon Wessely, who, although not a principal investigator, fulfilled several roles in the PACE trial.
Simon Wessely also gave advice on (not) granting benefits https://twitter.com/keithgeraghty/status/1007609185578733568 ….
Dr. Keith Geraghty presents a lot of information about the abuses in the PACE trial and about the advice of Wessely, prof. Michael Sharpe, prof. Peter D. White, prof. Trudy Chalder. Our Dutch researchers professors Knoop, Van der Meer and Bleijenberg, and later also Prof. Elise van de Putte, have close contacts with the British researchers and have also conducted seriously inadequate investigations into the theory of False Illness Beliefs and the effectiveness of their type of CBT. When one analyzes their researches, it appears that they even contradict their own theory. Yet they persist in spreading their views and they were seen as THE experts until recently. They play powerplay to push through their ideas. At the time they threatened to blow up the guideline committee CFS. The result was that the patient representation was removed from the committee except for one person. In the recent ME/CFS committee of the Health Council, Knoop again tried to push through but he lost this time. It looks as if the committee had a hard time.
What these scientists are doing now is creating the impression that patients have had far too much influence on the advice. By the way, besides the two patient representatives there were 7 other professionals in the committee. I cannot imagine that they had no influence.
They also try to distort the discussion. They blame anyone who is putting more emphasis on the biomedical nature of the disease for Cartesian thinking. They themselves are responsible for the fact CFS is seen as a psychological problem that once had a biomedical substrate, wich no longer has any influence. This means that the patient himself is the cause of an unsuccessful treatment. After all, he is not motivated. Bleijenberg said that in the TV program Focus. ‘We visited people who were bedridden at home … We also offered treatment, but did not want treatment. Why not? Well, you have to ask them. I think because of the fear of eh just losing what they had now, namely a stable situation, and I can understand that too, to lose that.’
https://corsius.wordpress.com/2018/02/25/transcript-of-tv-program-focus-npo2-ntr-february-22-2018-inexplicably-overtired/ Furthermore, these researchers like to present themselves as the saviors of the patients. Very much to the annoyance of the patients. It is precisely their research and the image they have created of the disease that caused patients to be treated so badly in terms of how the patients are being met by the professionals and the poor treatment they receive. Prof. Jos van der Meer (in the same TV program): “People with chronic fatigue syndrome have not been well received by the medical profession in the past hundred years.” That’s entirely true, but he forgot to tell us what the influence has been of his research group at this point.
