Where was PR slammed in the blog?
Throughout her story she basically says that following Phoenix Rising kept her from trying the therapy that would cure her. Also there is the accusation that Phoenix Rising attacks people who post recovery stories.
Now, because I know what happens when anyone suggests that Chronic Fatigue can be cured at all, much less cured by something that isn’t exclusively focused on physical systems (
the standard dismissal is that the person never had chronic fatigue in the first place, because there is no way that mental processes can be causing it), here is the Longer Version, to assure you that I did indeed have chronic fatigue syndrome and that I tried very hard to get better with various
approaches considered valid by the chronic fatigue community that I found at Phoenix Rising’s discussion boards (you can read the evolution of my illness there by searching my posts. I registered under the name Sueami):
...At a loss for any other solution,
I followed some advice from a poster on Phoenix Rising who speculated that extreme rest might allow the mitochondrial energy production systems to renew and rebuild...
...I had significant autonomic disregulation... and t
he word from various CFS sufferers on Phoenix Rising was that we needed to keep our heart rates below anaerobic levels or we would further damage the mitochondria
...The advice was also to limit mental activity as well, as too much talking or thinking could cause some people to crash as well...
...I laid flat on my back for the next three weeks...Panic attacks became increasingly frequent, and
I deeply regretted not having gone to see a Chronic Fatigue specialist while I was still well enough to travel...
...I could search up chronic fatigue recovery stories episodically on the kindle. I began finding a number of stories in which
people had recovered fully and completely, something that was deemed impossible at Phoenix Rising...
...Some people had recovered by throwing themselves into yoga, one young woman had left a career she disliked and following a childhood dream and found a full recovery, and a number of people had posted on youtube and on blogs about recovering via Reverse Therapy, which I had read about the previous summer. At the time, I had asked about it on Phoenix Rising’s discussion boards...
...Reverse Therapy, Mickel’s Therapy and any other process (such as yoga or a mysterious treatment called Lightning Process) by which some individuals had recovered completely from CFS were thoroughly
derided and dismissed by longtime CFS sufferers at Phoenix Rising, who felt they were either scams or trying to portray chronic fatigue as entirely a mental problem.
People who testified that they had recovered fully were deemed never to have truly had chronic fatigue by the most vocal posters at Phoenix Rising, who were the only people I knew who had chronic fatigue, so I took their word for it. If only I had tried Reverse Therapy when I first ran across it,
I could have saved myself almost an entire year of suffering, but we are ready to try something only when we are ready, and I was more willing to take the word of strangers on the Internet that something wouldn’t work than believe the testimonials of other strangers that it had indeed worked for them...
...I deeply regret losing those months of my life and descending into sheer hell before I was ill enough to see beyond the scathing criticisms of Reverse Therapy on Phoenix Rising...
...For now, I am not enabling comments on this blog. I have no desire to argue with other CFS suffers about whether I had chronic fatigue or whether I really recovered.
My first posts at Phoenix Rising about my recovery taught me what response I might expect...