Brett’s experience from Australia illustrates the global impact of UK graded exercise therapy and related research. It also shows the immense pressure that people with ME are under to comply with exercise regimes:
When I first was diagnosed with ME, I was told that the illness was psychosomatic and that I had convinced myself that I was ill when there was nothing physically wrong with me (known as “false illness beliefs”). It should be obvious to most people (with the exception of psychiatrists perhaps) that this is pseudo-scientific nonsense. The only “cure” recommended by medical bodies worldwide was behavioural therapy and exercise.
Undergoing psychiatric therapy to ignore my symptoms seemed stupid and illogical, but I decided to try to exercise. After all, what harm could exercise do? It’s unambiguously good for you, right?
Moreover, it was made clear to me by the doctors I was referred to by my employer that I had to comply with their directive to increase my activity levels in order to keep my job. Adding to the pressure, well-meaning family and friends continually advised me to “get over it”, “get out of the house” and to “get on with life”.
Consequently, I exercised for six years. For six years, I pushed through the pain, flu-like symptoms and fatigue and tried to get myself back to work full-time. All the while, I was told by these doctors that I wasn’t pushing myself hard enough. I began to relapse more and more frequently and each relapse was harder to get over. Eventually I was housebound.
Even after this huge setback to my health, these morons still told me that I had to exercise and that I had to return to work in the office within a very short timeframe. I was forced to quit my job because I couldn’t comply with their demands and I no longer had the energy to look after myself, let alone fight them.
Many years later, I decided to look into the literature that supported the idea that exercise was a safe and successful treatment for ME. I was shocked. It was garbage. Worse than junk science. Even in my severely brain-fogged state, I found a number of methodological errors just in the abstract of the largest and most influential study published in the Lancet, known as the PACE trial. Delving deeper, I came across damning critiques of PACE written by ME patients and activists. It looked like the psychiatrists in charge of the study had made grave academic errors (all of which happened to bias the results to favour their chosen hypothesis and treatments – that is that CFS/ME is a psychological illness that can be cured by behavioural therapy and graded exercise).
Compounding the problem, the authors refused to release the data for independent scrutiny of their results. This lack of transparency goes against every scientific and ethical principle. Patients that asked questions were smeared and vilified by these psychiatrists and the media as being violent and unstable.
Luckily, the tide began to turn [last] year. Academics started to become aware of the flaws in PACE and pressure was placed on the Lancet and psychiatrists to release their data. They refused. However, an Australian patient managed to succeed in an freedom of information request for some of the PACE trial data after a two year legal battle.
Analysis of that data confirmed what patients have been saying all along. Therapy and graded exercise are not effective treatments for ME. The biopsychosocial model of illness has been debunked. We have finally been vindicated. The PACE trial is a very expensive, taxpayer-funded fraud.
Why am I sharing this article? I believe that it is important that this information gets out there and unfortunately the media won’t pay much attention to it. There is also a lot of stigma and misinformation about this disease that has been disseminated by the medical profession and it is about time that this is addressed.
Most importantly, people should know not to push their friends and family with ME to “get up off the couch” and they should not exercise if they ever have the misfortune to end up with this illness themselves.
Don’t make the same mistakes I made.
You may like to sign this petition to stop experiments with these bizarre therapies on children:
This post was originally published on http://icantbecool.tumblr.com/post/150817418307/pace-pseudo-science-and-fraud
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