The publication of Patients' power and PACE about the PACE trial in today's Lancet has brightened up the day of many ME patients. Yes I know, that is not the first impression you get but just have a closer look.
The Lancet wants us to believe that CBT and exercise may help ME patients. Now I could say that all objective measures were abandoned by the PACE trial, but I won't tell you that VO2 max exercise testing, which objectifly shows the problems ME patients have with exercise, was for obvious reasons not used in this trial.
I will also not tell you that the PACE trial's chief investigator Prof White published an article in 2004 that Exercise causes Immunological damage in Chronic Fatigue Syndrome and so is NOT safe. This damage could have easily been checked for by a bloodtest. Did they do this test in the PACE trial? Obviously not.
The most important thing to come out of the PACE trial however is not the fact that the Lancet refused to publish any criticism by ME charities. Even the criticism from Action for ME, the charity run by the PACE trial's chief investigator Prof White, was not published.
No, the most important fact is the following:
the Dutch CBT fanatics have claimed on numerous occasions that CBT cures 70% of people with ME, and PACE trial's chief investigator Prof White has stated on many occasions that at least 25% of people with ME will be cured by CBT.
Yes I know that ME patients have stated on numerous occasions that CBT for ME is useless at best, but as we are malingering sods the medical establishment obviously doesn't want to listen to us or take note of the fact that ME is an infectious disease which has been covered up by piles of psychiatric nonsense for decades.
No, the most important thing to come out of this £5 million trial is that CBT psychiatrists have now publicly stated that no one gets cured by CBT or exercise. If a review of a surgical procedure shows that instead of curing 70% of patients actually no one gets cured, the procedure would be quickly abandoned.
So basically the PACE trial investigators are saying that it is time for proper biomedical ME research, that it is time to look for the virus that causes ME and that it is time to abandon silly and useless CBT psychiatry for ME.
And I couldn't agree more.
I have had ME for 7 years, since I was 27 and it has ruined my life. I have gone from being a strong, healthy and active person who had a future set out for her as a singer and songwriter to having no health, no life, no friends and to being completely bedbound, having to be cared for by my partner, having to use a bedpan, not being able to even sit up or walk. I have seen countless doctor's on the NHS who have tried to blame me because of their lack of knowledge about this illness. I have had no real help from the medical profession. I have had to prove to doctors that I have severe dysautonomia caused by my ME, by paying for private testing myself and even though I have positive results which show that my blood pressure drops when I exert energy and that I have tachycardia upon standing there is nowhere I can go to get real treatment or testing for an underlying cause. If anyone is reading this please do something to help the many sufferers of this debilitating and painful illness. Instead of spending millions of pounds trying to blame this illness on psycological factors, please realise that no young person would choose to spend their days lying in a bed, never being able to go outside and never be able to just enjoy their lives. Please spend the money on actually trying to figure out what the physical underlying cause is and help people like me with the correct treatment, whether this may be antiviral treatment etc. instead of making ME patients iller by forcing them to exercise and pace which does not work and just makes them feel even iller.
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