Freedom of information: can researchers still promise control of participants’ data?
The action taken against the researchers appears to be a continued attempt to justify the condition as a disease entity, thereby creating an environment in which some form of personal gain may be achieved. Whether that gain is in the form of a financial incentive or to manipulate the research findings as a way of placing some distance between a possible underlying mental health or psychosomatic illness and a true physical illness is unknown. It obviously helps satisfy alleged sufferers to hear that it is not all in their head and that what symptoms are experienced must be seen as real and part of a real disease process. Arguments against the sceptics and critics must be answered with facts, according to one's own definition of the facts.
Fibromyalgia would be a more apt description of the symptoms as no amount of manipulation is able to confirm myalgic encephalomyelitis as a condition that presents with any form of brain or spinal cord inflammation.
In Alberta Canada, the condition may be used to claim illness benefits, so there is a very real advantage to having it classified as a disease.
Please note that the aforesaid is my opinion and mine alone. I cannot claim any conflict of interest but my experience in its management provides me with an insight not always available to others.
Rapid Response:
Freedom of information: can researchers still promise control of participants’ data?
The action taken against the researchers appears to be a continued attempt to justify the condition as a disease entity, thereby creating an environment in which some form of personal gain may be achieved. Whether that gain is in the form of a financial incentive or to manipulate the research findings as a way of placing some distance between a possible underlying mental health or psychosomatic illness and a true physical illness is unknown. It obviously helps satisfy alleged sufferers to hear that it is not all in their head and that what symptoms are experienced must be seen as real and part of a real disease process. Arguments against the sceptics and critics must be answered with facts, according to one's own definition of the facts.
Fibromyalgia would be a more apt description of the symptoms as no amount of manipulation is able to confirm myalgic encephalomyelitis as a condition that presents with any form of brain or spinal cord inflammation.
In Alberta Canada, the condition may be used to claim illness benefits, so there is a very real advantage to having it classified as a disease.
Please note that the aforesaid is my opinion and mine alone. I cannot claim any conflict of interest but my experience in its management provides me with an insight not always available to others.
Competing interests: No competing interests