ME Association launches major survey on CBT, graded exercise and pacing

May 14, 2012



Please note that people taking part in this survey can take a break at any time, save what they've done and return to complete the form later. There are plenty of opportunities throughout the form to express one's own views. It is not just a ‘tick box' exercise – there are plenty of open questions for people to tell us anything they want to tell us about their courses or self management of any of the therapies.


The ME Association is launching a major new survey today to ascertain people's feelings about Cognitive Behaviour Therapy, Graded Exercise and Pacing. It is for people with ME/CFS or Post Viral Fatigue Syndrome who have actually tried any of these approaches whether by attending a course or self-managing their symptoms.

The survey will run through the rest of the Spring and during the Summer and can be completed online by clicking on the link that appears below. The questionnaire can be filled up in bits for people who are too ill to tackle the whole thing at once – saving what you've done for your next visit.

Plenty of advance notice will be given about when we intend to close the survey and the results will be published towards the end of the year.

If possible, please take part online. It will make the process of analysing the results so much easier.

Previous surveys have found that while – for some – these therapies improved their symptoms, significant proportions found they either had no effect on them whatsoever and in many cases actually made people feel worse.

WHY DO THE SURVEY NOW?

We expect the results will influence the next review of the NICE Guideline on ME/CFS treatments, which is due to be announced next year. We'll include the results in our submission to the review which may lead NICE (the National Institute for Health and Clinical Excellence) to come up with new guidance to doctors. You may remember that the first NICE guidelines on ME/CFS, issued in 2007, were a huge disappointment to many in the ME UK population because Pacing was not a recommended therapy and no therapies were recommended for severe sufferers. GPs have to follow NICE guidelines in giving advice to their patients and so you can see why your help in influencing a review is vital.

And the evidence we gather from people who have tried out these therapies may be helpful to medical researchers when they apply for funding for new studies into these approaches. As yet there has been no substantive research carried out into Pacing.

WHO CAN TAKE PART?

Anyone who has – or has had – ME/CFS or PVFS AND and have taken part in a course of CBT, GET or Pacing, either attending in person or going online. If you only completed part of a course, we would still welcome your views.

OR you must have self-managed your symptoms using one or more of these therapies

OR have been refused a course.

HOW CAN I TAKE PART?

Either go online now by clicking on the link below, and saving the form when you've had enough. You can always return to the form by clicking on the link which is showing in our “Quick Links' box. It will take you straight to where you left off and, at any point, you can look back at or alter your earlier answers if you wish.

Or you can request that the form be sent to you by email for downloading to your screen for printing off yourself. Email Gill in our office and she will send you a copy. Please make sure you post the form back to Gill by the middle of August.

If you don't have an email address, for have difficulty reading on screen, ask for a paper copy to be posted to you by writing to Gill Briody, Ramsay Research Fund, ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF, or phoning 01280 818964. PLEASE ALLOW TWO OR THREE WEEKS FOR THE FORMS TO BE SENT TO YOU. Again, we ask for the forms to be returned by the middle of August. But please take part online if at all possible – it will save us expense and probably be easier for most of you.

To read more about the background to the survey, please click HERE.

The survey is also being announced in our ME Essential quarterly membership magazine, out today. If you would like to receive a copy of this magazine, priced at £6 to non-members, please phone Gill on 01280 818964 and have your credit or debit card to hand.

25 thoughts on “ME Association launches major survey on CBT, graded exercise and pacing”

  1. What a good idea! Sorry I can’t take part as I’ve never even been offered any of these ‘treatments.’

  2. Oh dear how I hate surveys! Was doing O.K. albeit in fits and starts, till I got to the part concerning Benefits and none applied which thus made it sound I didn’t need any care/benefits whatsoever. Being severely affected, my Mother was my carer at the time of me having CBT/Physiotherapy but she never claimed Carer’s Allowance. I was in receipt of Income Support for long-term sickness. Throughout my illness I have sadly needed care. Would it not have been possible to provide a ‘box’ on each page of the questionnaire so you can clarify your answers?

    1. Jean

      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

  3. I really wanted to participate in this survey as I have had a failed course of CBT and a somewaht sucessful GET programme that got me back to work for 5 years before a major relapse, but this survey is so confusing and badly set out that I abandoned it half way through in frustration.

    Very dissapointed!

    1. Stephen.

      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

      1. I’m really not trying to add insult to injury, but let me give you an example of why I struggled with this form.

        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.

  4. You are seriously having a laugh expecting severely affected sufferers to answer this?! I’ve answered 50 some odd questions and I’m not even half way through it!!!

    I know we can do it in stages but it’s overly verbose, extremely repetitive and there are 2 pages of reading before you even get to the questions.

    It’s really quite ridculous. Whoever came up with this should be sacked as it’s really not very ME friendly at all.

    I’ve given up. I’ve better things to do with my severely limited concentration.

    1. Nona – Obviously we thought long and hard about the length of the survey, the amount of information we are seeking and the energy constraints and brain fog of PWME. But if we want to provide evidence to the NICE Guidlines review committee with a view to them considering an amendment to their guidelines – and you may remember how nearly all the UK ME charities think the guidelines are unsatisfactory) this needs to be a comprehensive survey. Remember that you can close down at any time and as many times as you want and open up where you have left off – so you could complete this a bit at a time over the next few weeks – see the instructions in the announcement and in the introduction.

      Ba Stafford

  5. I’m another non-completer, again because of the survey design.

    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

    1. Susie – See the reponse to Jean above. When you get to the question “Is there anything further that you would like to say about your CBT course/CBT self management” – tell us everything in there. We will then take all the replies and catagorise them – and in your case you would fall into the catagory that CBT helped you manage your symtons for all the reasons you give.

      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.

  6. Invisible Woman

    I did actually manage the survey, but I really struggled and was left feeling like I’d been beaten about the head! the questions really are awkward and verbose.

    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.

    1. Invisable Woman. If you – and Jean above – or anyone else for that matter – would like to wait until the printed form comes out at the beginning of June, you might very well find that is easier. If you feel able to do the survey online then you could still do that if you wanted to, but you would have the print out before you. There are many people who have to do that with forms – me included.

      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.

  7. I’ve read all the comments above with interest. I hope that despite the teething problems with the survey, a lot of people manage to complete it. I have to apologise that i won’t be one of them, because as one of the cohort of people whose ME began in the early 1980’s, and has followed with dismay the whole saga of political/psychiatric/vested interests impact on the treatment of the illness, I have avoided like the plague having anything to do with CBT or GET. I’ve simply read far too many disastrous accounts of how those treatments have made people far worse. I’m very glad to read Susie’s account of sensitively applied and intelligently used CBT; it’s great that she was helped. however, I suspect that other very long-standing (well, not standing very much!!) ME people will have reacted similarly to me. But many thanks, as ever, to all at MEA who are trying to do this, and I sincerely hope it will help to radically improve the NICE guidelines etc.

  8. Hello Sasha

    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

  9. The thesis of therapeutically exercising (GET) ME patients is fundamentally flawed. The Canadian Consensus in fact points to Post Exertion Malaise as a diagnostic criteria. The psychiatric axis tries to use this as a means of substantiating a lack of will in patients to improve their general health. This is outrageous in the face of the obvious physical disease, not to emphasize the bedridden state of some patients who can not move, never mind perform GET.
    At the new Mount Sinai ME/CFS Center in New York we are performing a pre- and post exertion study in ME/CFS. Support in this effort would be welcome.
    Derek Enlander MD
    denlander@aol.com

    1. Hello Derek and nice to have you read about this survey.

      Our hope for this survey, if enough people take part, is to find indicators of what GET/CBT/Pacing works for some people and not others. The article you can click onto on the survey announcement page above reports that in 3 surveys carried out in the last 11 years, including our own 2010 survey, GET was helpful to 34%, 43% & 22.1% of the people who took part and made no difference to 16%, 21% and 21.4%. Why would that be bearing in mind the Canadian criteria? Our belief that ME/CFS is a physical illness and that Post Exertion Malaise is an essential criteria is well known but nevertheless that does not mean that we should not try to establish why that is. One possible explanation for the helpful GET, is that good experienced GET practitioners with a sound knowledge of ME knew how to design tailor made courses that suited some PWME – i.e.,made them limit their exercise according to the severity of their ME and their post exertional malaise problems. Actually that applies also to the not helpful GET but that had to be a waste of money and energy.

      And what does exercise mean for the purposes of GET courses? That is another thing we would like to find out.

      And just how many GET practitioners use a refusal to exercise as a means of substantiating a lack of will in patients to improve their general health? That too the ME population needs to get a handle on and we hope this survey will lead to some evidence about it.

      Some years ago my daughter, with mild ME (although she says it never feels mild!), had a consultation at which she was told to work out what exercise she thought she could achieve, then cut it down (and I have no idea by how much and at the time we had little knowledge of criteria or anything else about ME for that matter) She was told to keep with that until she could achieve it easily and then increase it little by little, not increasing it until she could cope well and did not suffer from Post Exertion Malaise because of it. Was that good GET or good Pacing (as I have subsequently assumed) or bad or neither – I don’t know – we were not even told what the consultation was about, apart from her ME/CFS. My daughter was not given any notes to help her. She will put all that information into the survey, together with a report that it made no difference to her and it will all be processed with other answers and then experts will be able to use the reported information if they wish. If the results are useful to your study then that will be great.

      Ba

  10. Invisible Woman

    Hi Dr Enlander. I would be very interested to know if you have a website or can supply details about your research. I will then happily pass it on to my own consultant. I’ll provide my email address if you would prefer. I have posted this here as I’m sure others will also be interested in following your work too. That way we might drum up a bit of support for you.

  11. 21 May 2012:

    The MEA Survey of CBT, GET and Pacing – Comments and Queries

    Thanks to everyone who has been filing in our new patient evidence survey of CBT, GET and Pacing – the vast majority have been able to do so without any problems.

    Once the data has been collected, analysed and summarised it will be submitted to the review of the NICE guideline on ME/CFS, which is due to take place in 2013

    So if you haven’t already done so please at least make a start.

    Below are some brief answers to the comments and queries on common themes that have been coming in since the launch:

    Comments about the time it takes to fill in the survey:

    Yes, this is quite a long survey. It took me about 35 minutes to complete (self-administered pacing) but I did not have any problems.

    Please remember that it took MEA trustees many hours of time over a period of several months to do all the preparatory work before the on-line and paper versions were completed.

    No fees have been paid to MEA trustees or staff for carrying out any of the work they have been doing in connection with the survey.

    Comments about the need to carry out another patient survey involving CBT, GET and Pacing

    If people want the MEA to challenge the NICE guideline recommendations on CBT and GET, and the lack of any positive recommendation for Pacing, we will need to back this up with new and robust patient evidence on the value (or harm) of these three forms of management. NICE will almost certainly be using the results of the PACE trial (and some other studies on CBT and GET that have been published) to support their current position on CBT and GET for people with mild to moderate ME/CFS. The NICE guideline review, which is scheduled to take place in 2013, will only consider new evidence – not the results of surveys that have already been submitted when the current guideline was being prepared.

    Comments about the inclusion of some of the questions – eg DWP benefit status questions

    The questions relating to DWP benefits are important because coming off benefits and returning to work/education is one of the few objective measures of significant improvement or recovery from ME/CFS. So we want to know if CBT, GET or Pacing resulted in any change to claiming DWP benefits. As an additional check we are asking whether the decision to come off benefits was the result of treatment (ie a voluntary decision).

    Comments about the number of questions

    Whilst some people are asking for additional questions to be included to cover aspects of CBT, GET or Pacing that are not asked about other people are saying that there are too many questions. We have tried hard to strike the right balance but in doing so there will be areas where you need to provide information in one of the free text boxes rather than answer a direct question.

    Other comments and criticisms

    We accept that there are improvements and clarifications that need to be made to the survey. This is inevitable when you launch a complicated survey such as this. We are taking note of all the comments coming in and making changes, where possible and appropriate. But we cannot start adding new questions, or removing existing questions, at this stage. We are also placing extra emphasis on the fact that the survey can be filled in a bit at a time and then saved. The closing date for completion is currently August – which gives people plenty of time to complete all the relevant questions.

    Dr Charles Shepherd

  12. Plodonregardless

    I found this survey not to complicated as i only had to fill in the pacing part and i was having a “good day”. I think another survery should be done on benefits because as others have stated the listed benefits don’t seem to apply even though we could do with the extra help. With regard to claiming ESA contrubution based the last 3 years have been a NIGHTMARE!!!! I have gone round in circles not even scoring 1 point at an ATOS medical (even tho i can sleep upto 20 hours a day) on appealing every decision i have still been found fit for work and i then have to go thro the process of making a new claim (not a telephone claim but for some reason i have to make a paper claim…have you seen how thick these books are…. it is exhausting and can take me 3 weeks to get thro them)and i start the process yet again on low rate ESA contrbution based. I tried to clain DLA last year and in the appeal i was asked “can you do beans on toast”? this must cover the question if the fresh ingredients were supplied could you make a meal from fresh. I am becoming absolutely infurriated at being treated like i am STUPID. My biggest grievence so far is i have just taken part in some bio-medical research and becasue of the nature of this research i missed an ATOS medical, it took DWP 3 weeks to inform me i was fit for work, i asked that they look at this decision and if it cannot be changed that i wish to appeal and want my money re-instated…i rang last week to find out what is happening they will not change their decision and i can not appeal this, 2 days later i query this im now told i can appeal but they will not re-instate my money as i failed to attend the medical and so i have to make yet another new paper claim…10 weeks with no money so far and still waiting!!!!! RESEARCH HAS TO BE DONE ON PEOPLE WITH ME/CFS so for anyone out there who may be lucky enough to take part in this research be VERY CAREFUL!!!! To everyone reading this….keep ploddin on,keep fightin and keep on smilin 🙂

  13. Hello Plodonregardless

    I am still reeling from weeks and weeks of hard work on this survey and there will still be much work to do if lots of people help us by completing it. But no doubt, if the others all think this is a good idea and agree I will be more than happy to volunteer myself to do this one – next year!

    Ba Stafford

  14. primandmodder

    took me a week to find out how to log in
    the survey questionnaire on me cbt get will leave out most with the more severe ME
    i am struggling and i have moderately severe me
    How do i answer the questions when i have had at least 3 or 4 courses totalling at least 24 sessions in one form or another of cbt as well as exercise therapies and self regulating pacing which could be called get
    i could start with my first official cbt course back 5 years ago aswell as i can remember that far back
    and i could start from when i strted exercise therapy again 5 years back
    however as ive had counselling years before which basically was cbt and been on at least 3 courses of self management of chronic ill health which covers pacing and some cbt its difficult to know where to start
    do i start from when i was diagnosed or doi start from wheni think i showed signs of me again i cant remember that far back in detail
    what about other variables happening at the same time such as moving home losing a job and relationship breakdowns lack of support and so on

    1. primandmodder

      i was wrong saying moderately severe me I am actually with severe me with periods of very severe

  15. Hello Primandmodder (how did that name come about I wonder?!)

    In the survey we say, about courses for each therapy ‘If you have attended more than one course of xx, choose the one you would most like to report on and complete this secton thinking about that course only’. So for you, probably the best thing to do is to choose the ones you remember most – meaning one CBT course/one GET course etc..

    That said, we do want to hear all about people’s experiences and you could tell us about your other courses in the open question at the end of each section which asks you to tell us anything you think might be of help.

    If your courses covered CBT/GET and Pacing at the same time, choose one section (it sounds as if the CBT section will be best for you) and you’ll find there are questions about overlapping of therapies. We’ll pick all that up.

    Don’t forget that, if you are finding the online survey difficult, completing a paper survey might be easier.

    Don’t give up though will you? For this survey to be effective we NEED the support of people like you.

    Ba Stafford

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