My rapid response has been published:
http://www.bmj.com/content/354/bmj.i5053/rapid-responses
You can give it a thumbs up if you approve:
In response to Dr Timothy Jordan I would like to mention the following:
1) Canada's CIHR (Canadian Insitutes for Health Research) has contributed an average of 11 cents per patient per year for the last 12 years in research, compared to an average of 158$ per pt per year for other chronic diseases similar in disability. This means that the average canadian physician is not relying on science in order to make teir own opinion, but rely on now crumbling Cochrane reviews to make their minds about ME.
2) The very reputable Institute of Medicine declared ME a biological disease, featuring a set of symptoms which is common to all patients and discriminates from other groups of patients who do not have the disease. (1)
3) University of Columbia Institute of Infection and Immunity found distinct cytokine patterns depending on phases of illness that patients went through, an inflammatory phase for up to 3 years after infectious onset, and a subsequent period of immune depletion (2)
4) Recently Dr Naviaux et al published a landmark paper on a distinct metabolomic signature in patients with ME. They found difference in metabolome in males and females but similar in suggesting a 'daur state'.(3)
5) Lastly the PACE trial which was highly pushed by the media as truth, now uncovers the many fatal flaws of what a rigorous clinical trial should be like. The authors changed the recovery requirements mid trial to declare more patients 'recovered'. This change resulted in 12% of the patients entering the trial being already classified as recovered. I invite you to read the compelling body of work from Dr David Tuller in this regard, much more eloquent than mine. (4)
Many say that medicine is both art and science. What you are providing us here in your comment is an opinion, not based on science, but based on what knowledge and experience you have, but this does not represent the opinion of the experts who have worked with ME patients on a daily basis.
The same kind of opinion has obstructed the medical judgement for decades for other diseases, for instance with Parkinson's disease, epilepsy, multiple sclerosis, and stomach ulcers. It takes curious and brave scientists to uncover the truth, facing disproval from their peers, facing government grant refusal, facing publication refusal. The science behind ME is rapidely unfolding, thanks to the current technology and advances in science and medicine, which will make current opinions in regards to this disease rather embarrassing.
Lastly, do not believe one minute that living on insurance or government benefits is an enviable position to be in. Too many patients had to leave behind a career, a life, and family members they loved, and would rather have their lives back instead of living with a disease that so few understand and so few physicians are willing to help with.
(1)
http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx
(2)
http://advances.sciencemag.org/content/1/1/e1400121
(3)
http://www.pnas.org/content/113/37/E5472.full
(4)
http://www.virology.ws/2015/10/21/trial-by-error-i/
Competing interests: No competing interests