I had just about made my way through the CBT section, and I get asked about Attendance Allowance! I’m 55, I’m not even eligible for AA, there was no explanation, no foreword to explain we want to know about benefits. I went all the way back to the beginning of the survey to make sure I hadn’t filled my age in incorrectly, when I eventually got back to the offending page, I then find a further 9 pages asking about different benefits, something that could have been done on one page and then when I get to the end of the GET section, it’s the same 10 pages again.

The explanation you have included are too verbose and many sections are missing any explanation of what you are asking.

I found I was filling in basically the same pages again and again, and had to keep going back to previous pages to figure out the context to what you were asking.

And yesterday was actually a good day for me where I was mentally alert.

But we need to hear about people’s bad experineces and well as the good ones. Is the link on the annoucment page working for you? It does not for me and, if you are interested in the thinking behind this survey, please email me on barbara@fernside.plus.com and I will send you the article you should be getting up.

It does not sound as if you are able to give any experiences of CBT or GET but, if you have any experiences of pacing this is how you get to the relevant section – it takes answers to 10 questions

Q 8 (I think 8 for everyone) asks;

Please read this definition of CBT and then answer the question below:

You are given a series of options and you click the option.
“I have never been interested in pursuing CBT principles”

You are then taken to your next question
“Please read this definition of GET and then answer the question below:
You are given another series of options and you click the option.
“I have never been interested in GET principles”

Your next question will be

Please read this definition of Pacing Therapy, and then answer the question below:
And then you are into the pacing section where you will have an opportunity to tell us your experiences (if any of course) with Pacing

You will have effectively ignored the two tharapies you don’t want to talk about.

Hope this helps and encouarges you to take part if you can.

Ba

I think I have replied to most of your points by replying to the messages above but if not, do message again

I have to say, in self defence, that survey forms never suit everyone. Some people are saying we are verbose and some are saying we are not verbose enough! All I can say is that we have worked very hard to present this as clearly as possible in a way that gives us the information we need be in a position to help PWME and … so don’t be put off and don’t give up on us! Take your time and let us have your answers before ,say, August.

We certainly don’t assume that all CBT courses are standard – quite the contrary – and there are specific questions about this.

Have you clicked on the link in the annoucement taking you to an article about the thinking behind the survey (actually I haven’t been able to open it yet but I am sure people will be able to do so soon. If you can’t, then email me on barbara@fernside.plus.com & I will email you a pdf.) I think that will clarify things for you.

Don’t forget that, if the online form is difficult – you can always ask for a printed copy – see the reply to Stephen above – and the announcment about the survey.

We have a very comprehesive question about symptoms which may well help with indications about sub-sets.

We too are critical of the PACE trials and will be forming a set of objections before the NICE guidelines review takes place.

Ba Stafford

We are really disappointed to as this is exactly the sort of information we need to have (about the CBT and GET courses, that is, not that our survey form is confusing!). The printed form will be available about the beginning of June and the survey will remain open throughout the summer so there is plenty of time. How about emailing Gill at the office asking for a printed copy – see the announcment. The printed form may be easier for you to follow.

Ba Stafford. Trustee

A trouble has been that this is a long survey and whilst there would be room on the online pages for explanations about benefits, to allow for more explanations would make the already long printed form even longer. This will be a difficult survey to complete for some people and we do not want to put them off, if we can help it

Have you come to questions which ask “Is there anything further that you would like to say about your course/self management of CBT/GET or Pacing?” There is one for each therapy and one for each of a course or self management. We are expecting a whole raft of bits of information in the answeres to this question. If you include something in your answer by putting in the information you would like to tell us, we will pick up on it.

Ba Stafford. Trustee

I think Susie has hit the nail on the head. The questions refer to specific type of CBT. Now a friend of mine told me she had had CBT and found it enormously useful. When I asked her to describe it to me, she described learning about pacing and switching techniques and taking responsibility for and managing her own resources- not CBT. Perhaps it would be useful to have a question whereby those who have undergone a form of CBT that doesn’t fit the survey definition have a box to tick saying that this is not their experience of CBT and another to say if it was useful and also a box to type a brief description of what they did do on the course.

It might be worth doing the same with GET.

This survey is a fantastic idea and it’s well worth doing, but in it’s current form people are either going to get confused and tick the wrong box or give up.

The survey assumes CBT is always about challenging negative illness belief, but mine was about my personality and self-esteem and how those were stopping me self-managing my ME as well as possible.  My symptoms changed because 1-1 CBT helped me become better at coping ie saying no to other people’s demands, asking for help, being less perfectionist so tasks take up less energy, prioritising regular rest breaks over chores, prioritising social contact and fun activities over chores. But the survey doesn’t allow me to express that CBT helped my self management which then helped my symptoms, rather than magically feeling better. The survey also assumes it’s a standard course, whereas mine was personal to me and for as many appointments as I felt I needed, which is quite different.

Also, some attempt to identify which symptoms people suffer would allow subsets to be distinguished, so the survey could tell us that people with (or without) particular sets of symptoms are helped or made worse by particular therapy. This was (one of) the failings of the PACE trial – please don’t repeat it.

My cognitive symptoms are almost gone now, but I can’t remember the before and after detail of symptoms the survey asks for. How are brain-fogged folk are supposed to?

Q12 – have another option of recommended by another patient with ME