However, some of our most esteemed researchers seem to be coming around to this idea that a stress response is playing a crucial role.
Chronic stress might conceivably play a role in initiating ME/CFS, and several studies have shown a higher incidence of major chronic stress in people in the year before their ME/CFS first appeared. Refs:
1 2 3 4
(Personally I suspect stress may do this because chronic stress is known to decrease the antiviral immune response, which may allow any ME/CFS-associated virus you were unfortunate enough to catch during the time of chronic stress to run riot in the body).
But although stress may be a precipitating factor, there does not appear to be any scientific evidence that shows stress reduction techniques can ameliorate ME/CFS, apart from various anecdotes.
These self-reported
anecdotes of success on the Gupta and DNRS programs have to be taken with a pinch of salt, for two reasons:
Firstly because any program like Gupta's which trains people not to have negative thoughts, and trains people to stop observing their bodily symptoms and bodily pains, may not actually make these patients better in an objectively measurable sense, but may merely indoctrinate patients to ignore their afflictions so that they report they are better.
Or after the training, patients may think it is "uncool" to report negative things (having being taught negative thoughts are bad), so only report positive things about their health.
In any case, asking people how they
feel is never a good objective measure. What we need is objective evidence that these systems work. Objective evidence would be for example when severe bedbound or moderate housebound ME/CFS patients are made well enough to return to work via the Gupta or DNRS programs.
Or if we take something like POTS, whose severity can be accurately and objectively measured by the increase in heart rate that patients manifest when standing from a relaxed lying down position, I'd like to see evidence that this increased heart rate on standing slowly reduces and disappears over the months, as patients follow the Gupta or DNRS programs. POTS is an eminently objectively measurable condition, so it would be a good one to use to demonstrate objective benefits from these programs.
We need objective measures used to assess the efficacy of these systems, not cherry-picked subjective reports presented as glowing testimonials.
Secondly, when you are treating a very large group of patients (and I expect the Gupta and DNRS programs must have been followed by many thousands), you would naturally expect a certain percentage of patients in the group to spontaneously improve or recover (especially if the group contains patients like Annie Hooper herself, who only had ME/CFS for a few years, and so may well have had post-viral fatigue rather than ME/CFS — post-viral fatigue eventually spontaneously clears itself up after a while).
Cherry-picking a few cases of improvement out of the many thousands of patients that have followed these programs and presenting these as testimonials does not prove much.
To perform a proper study, you need to examine a large group of patients taking these programs, and see how the improvements in patients in that group compare to a placebo-controlled group (in this case, the placebo could just be a set of arbitrary DVD-based exercises that were not designed to reduce stress, such as doing crossword puzzles say, or something similar). It's only if these programs produce better results than placebo that you can say they are effective.
Gupta, Annie Hopper, etc are convinced that their systems work, but have not yet performed a proper placebo-controlled blinded study in collaboration with a university.
Apparently for Annie Hopper's Dynamic Neural Retraining System (DNRS), they are
crowd-sourcing money for a study to be performed in conjunction with the Canadian universities of Calgary and Alberta.
And Gupta is also
crowd-sourcing for a study with "a well-known independent clinic and research center". They both seem to be asking their former patients for money.
I just hope that they choose good researchers and a rigorous methodology, otherwise if they follow some shoddy approach using some second-rate researchers, any results they get will be invalid (just as the shoddy PACE trial results were shown invalid), and they will have wasted all that money that their former patients donated.
I would not use psychologists/psychiatrists to run these trials, as the PACE trial fiasco shows that psychologists/psychiatrists are often not good at setting up rigorous research methodologies. I would instead choose researchers with a hard science background, like statisticians for example.
I keep an open mind regarding these techniques, but I would like to see
rigorous science testing them, rather than just promoting them without having any scientific evidence, merely by testimonials and marketing strategies.
