Thank you for the support
@Esther12 and for your extra advice
@Alvin2, have been reading through the pdf. I had a bit of a cry about it last night, compounded by my head symptoms being pretty bad. But getting my frustration out seems to have helped, as today I've written up my appeal! I gathered up everyone's advice here and all the links, tried to put something together as concise as possible, trying not to sound too know-it-all while also trying to explain that there is evidence to show that CBT and GET are not helpful. I was wondering if someone might like to take a quick read and give thoughts on if it's ok? I feel it's perhaps a little long, unsure if I've gone into too much detail and stats or if I need those to prove my case.
Here's my draft so far:
I would like to appeal the decision that my condition has not been fully treated as I have not undergone CBT. I was also informed that, while not part of the decision, exercise therapy and seeing a rheumatologist were recommended. I have not seen a rheumatologist as no doctor has ever recommended this since I’m in the subset of CFS patients without pain symptoms. I would like to appeal the recommendation for CBT and exercise therapy since they don’t meet Centrelink’s definition for ‘reasonable treatment’.
Centrelink describes reasonable treatment as treatment that is low risk, with a high success rate and where substantial improvement in functional capacity can be reliably expected. CBT and exercise therapy do not meet these requirements, as exercise therapy risks worsening of symptoms in CFS, and both CBT and exercise therapy have proven low success rates in patients with CFS. A substantial improvement in functional capacity cannot be reliably expected for either treatment.
There is no evidence base to support the notion that CBT or exercise therapy could lead to substantial improvement in CFS. A large study called the PACE trial was used to justify recommending these treatments to CFS patients worldwide. The study showed just a 22% recovery rate for these treatments, which does not meet the reasonable treatment definition. However, in 2016 the data from this trial was released and re-analysed by numerous independent researchers. This proved the trial was highly flawed and among its many issues, it changed the definition of recovery part way through to inflate recovery rates and did not use CFS diagnostic criteria so many participants did not actually have CFS. When the original trial definition of recovery was used, only 4% improved with exercise therapy and 7% with CBT, which definitely doesn’t meet the reasonable treatment definition of high success rate and reliable substantial improvement. When you consider that many participants did not have a condition as serious as CFS and the recovery rates were still so low, the actual recovery rate for CFS patients is likely even lower.
Additionally, an evidence review conducted by the US Agency for Healthcare Research and Quality has shown there is insufficient evidence that CBT improves function or employment rates in CFS and there is evidence that the treatment does
not impact quality of life in CFS.
In recent years, research worldwide has proven that CFS is a physical condition, not a psychological one. Patients with a proven physical condition should not be required to undergo a psychological treatment. This would provide no substantial improvement to functional capacity since psychological treatment cannot treat the actual physical dysfunction causing symptoms. Unless all physical conditions such as MS or paralysis require CBT to be classified as fully treated, then CFS should not require this psychological treatment either.
