Mr 'much misinformation' doesn't CBT it

[Quilp]

CBT is not,and never will be an 'important part of the treatment of CFS'. The recent PACE report is nothing but a fraud.

Look,if you wanted to walk in Times Square wearing just your underpants and you later said you felt better for it, fine, keep on doing it. Many, many people on this board and others have reported improvements, from acupuncture, to glutathione, from yoga to a low carb diet.

Nobody on here or anywhere else is against anything that will help us ! We are all desperately trying to get better and are willing to use any means necessary. Some of us have used our life savings to try and get better. The reason why I am so opposed to CBT is because it is not effective in the way that you describe. Does it help ? Perhaps for some, in limited circumstances, but we're back to Times Square again aren't we......

Let us look at the finances involved here. The MRC ( Medical Research Council ) here in the UK have spent millions upon millions on these clinics with CBT and GET at their core. How much has been spent on biological research ? Don't worry you won't need to think about that one. How many grants have been rejected in favour of the Wessely school ? Perhaps now you can begin to understand why I am angry, but hold onto your seat i'm about to burst into a rage.

Even if CBT improved our health by 5%, wouldn't 'that be great' ? Well yes it would if it were true but it isn't. How do I know ? Ask those that really count. Do a poll on here for us and see. Perhaps we would all be surprised, but let me tell you that for me CBT did nothing. In fact it did less than nothing it set me back ! Why ?

To get to these clinics is a mounmental task for many of us. Imagine having to drive for an hour ( assuming you can drive and can afford to run a car ) or catch several buses. The pain and suffering you have to go through before you even get to the clinic is truely challenging. Many have no chance, understand, no chance ! So the only ones that are able to make it there are actually in better health than some, possibly most.
Then there is the journey back, and all the time these clinics are using up tax pounds/dollars, and do you know what that says ? That says that any hope of finding a treatment for an illness 'i'm absolutely convinced that given the proper criteria this illness has all the hallmarks of being viral' ( Harvey J Alter ) is disappearing faster than a room full of Twinkies being guarded by Jonathan Stoye.

And it gets worse Sir. You see whilst any chance we have of finding a treatment for this viral illness disappears the Wessely school are now able to indoctrinate the ignorant that this illness can be cured. They then go further and say we have an 'abnormal illness belief' that we are the 'least deserving sick in society' and oh look GET is hear to help also. Now people are being forced into exercise they simply cannot do.They are having their health damaged, possibly irreversibly.

CBT has become a stick with which to beat us with, and boy do we know about it.

Take a step back and ask yourself why so many PWME are against CBT as being a 'therapy' or an important part of the treatment process.

I had hoped for better from you because you know the politics surrounding this illness you are supposed to be one of our advocates.

I am sorry if I have upset anyone with this post. I am coming out of a bad relapse and I am so desperately unhappy, but I stand by what I have said.

Kind regards, Mark

 

[alex3619]

Hi

I am a very long term patient. I have tried most things, including CBT and GET.

CBT as used in the UK for CFS makes even CBT therapists hopping mad. I have talked to a few. It is not CBT. I had cognitive behavioural therapy in the late 80s for stress management and to improve coping strategies. It is mildly helpful. The version used for CFS in the UK is dishonest at every level. The research uses a definition of CFS that is not the minimal international standard. Therapists are taught to lie to patients about the science, which the CBT advocates seem to be getting away with due to the ignorance of most in the population, including the medical profession.

Don't even get me started on the London definition of ME. I just want to put my face in my hand at this blatant but failed attempt at credibility. Then where are the bedbound patients? Have they tried this on these patients? Would that even be ethical? Where are the subgroups we were promised, stratified by biomarkers we already have? They don't exist. If you are going to spend that much on a study, you need to get the science right or produce a bogus study. Oh, wait, ....

I have also engaged in exercise programs including GET, but not the UK version. It was the biggest mistake I ever made. Once upon a time I was a mild ME/CFS patient (diagnosed using Holmes) but now I am a severely affected patient, on the edge of completely housebound. If we want to push exercise, we need to leave it to the exercise physiologists who are studying this, not the psychiatrists. Using psychiatry to research exercise in CFS is about as sane as using psychiatrists to research cancer or heart disease as the only treatment option.

Don't presume CBT and exercise have no place in treatment, but don't be fooled that what is being promoted in the UK is anything like a sensible CBT or exercise strategy. Just look at the work being done by Klimas or Pacific Labs to get a glimpse of our first understanding of how to exercise with ME/CFS. Then reflect on the implications of the Light's molecular biomarker research.

Bye
Alex

 

[TheMoonIsBlue]

Why don't they promote TRT (TOTAL REST THERAPY) as soon as the patients become ill, instead of this GET/CBT, it MIGHT atleast stop some disease progression. You made a lot of great points Alex. If I had known how not only exercise, but just simply dragging myself in the early years of my disease to try to continue a normal life, was harming me,and no on told me to STOP! STOP! STOP! and get the hell back home and rest, I don't think I would be as ill as I am today.