CFS and CBT the failure of mainstream medicine.

Still amazes me that this is the main treatment for CFS in the U.K. It is the only way the CFS clinics operate even though it clearly does not work in most cases. I have discussed this with my last consultant but they were tied to this model by the national guidance. This flawed study told practitioners/ sufferers and the world that the patients physiologically stopped themselves from doing activity and CBT and graded exercise was the answer to this life long disability. In most cases (but not all) CFS sufferers are proactive, fit people who are knocked down by a virus and then cannot recover, like in my case. Sleep, rest, graded exercise, CBT, all do not cure my overall condition. They help but have not cured or will cure me as I and my family go into the 6th year with this condition. In the background something is still biologically wrong. Don’t get me wrong there are psychological issues, but they come after you get this condition. Aniexty, depression, self doubt, paranoia, are all common as people question why you can’t recover, you do the same. Start slowly and work your way slowly back up as the treatment goes. If you have done that a 100 different ways, with the same result trust me you are going to feel pretty shit about yourself. And then your doctor or nurse questions you about why you are not getting better and gives you articles about thinking positive, realigning your thought process. We have done all of that at the start, retried it many different ways and still fallen over. Most CFS sufferers are intelligent and have already read the book and self diagnosed by the time they get diagnosed by the NHS. I do not understand all of the ins and outs of CFS, I do not want to as it is too complex for my small tired brain. But the main point is, the U.K. has for too long said it is a mental problem and relied on this flawed study, which from the start was questioned and challenged. It makes me mad personally because it does not impact on just me, it impacts on your entire life, family, friends, children, work, career, ambitions, fitness. Hopefully the more this gains traction the more the appropriate authorities will listen and work on the real reason why people are still suffering from this life changing disability. To the medical staff / doctors / researchers that have always known this, thank you for your persistence and hopefully we can get to a more positive place soon working together as one.


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