The missing link between ME sufferers perceptions and “PACE” suggestions of CBT

As a former member of the 25% ME Group I recently received their Press Release. The 25% group is quite rightly concerned that CBT is not the answer for many ME sufferers. In my time I have seen therapists that believe CBT is the way. I have experienced their short comings and yet I have moved forward with my illness and I believe I am now in the process of finding the missing link between an ME sufferers perceptions and the CBT therapists believe that it should work.

I first became ill with ME/CFS or Post Viral Fatigue Syndrome (PVFS) as it was first call in January 1994. I am still not 100% recovered from my ME/CFS but I am so far forward I that I have most of my life back. My only concerns as of Jan 2011 are that I still need the extra sleeps in order to remove the brain “fog”. I can work through the fog when I need to (short term) but as soon when there is no pressure I find I still need to “recharge” as I view it. I am currently writing this at 10am having woken at 6am and been fully alert for a couple of hours but was in need of sleep by 8.30am. The dilemma was do I push on and try and achieve work without sleeping or do I recharge my batteries allow my body to feel good so I then have a clear head for jobs? Today I chose the sleep. Other days I have continued and struggled until I finally gave in.  As I write this I am seeing many arguments for and against giving in to sleep but I will allow them to formulate more as I continue to work on regaining 100% health.

In 1997 I did a form of graduated exercise. I would love to hear details of what others have been put through on this so if you could share you experience with me please do. My experience was that I was asked to walk 50m a day. Then move up to 60m. Then 70m, 80m, 90m, eventually I was being asked to do a 2 minute walk a day. I could not manage the 2minute walk without debilitating myself so much the rest of the day was unbearable. I was taken back down and asked to build up again. I failed again. I was taken back done again and then the therapist dismissed me as her “first failure”.

I dismissed the label and still believed I would be able to build up and improve my life. I focused on doing things I enjoyed expecting the activity to move me forward so that I gradually discovered I was able to do more and more. I focused on being busy in my bedroom and only really went out to go to concerts. As can be seen from my records of concerts I have been too. I gradually increased the rate of going out. Each concert was a “one off special” event which was worth the suffering over the next 3-4 days. I know I took extra painkillers to go out but I have long since forgotten how I handled the “crash” periods. In 2000 I saw over 40 concerns and reading my own webpage on ME it appears I felt going to so many concerts in a year meant I had to cut back. I started looking for more solutions and decided perhaps I had not given Anti-depressants long enough on my first trial so I decided to try and have a longer trial. I still only managed 15 days apparently.

I knew how ME should operate. I knew what I was attempting. I knew ME was a physical illness. I knew Psychiatrists thoughts ME sufferers could move forward by exercise and I knew it wasn’t working for me. I was stuck. I had hope I would recover but I just didn’t know what that recovering would look like.

Jumping forward a few years I had found a new partner. Started taking my concert level of painkiller permanently as I now had a family life again and carried on with my life goal of “being happy but never at anyone else’s expense”. I felt a drain on society and I was constantly looking out for ways to give back to the world despite my condition. A particular set of circumstances meant I discover a course on Hypnotherapy and this fascinated me to the level of going to a concert. The presenter on the tapes I found seemed to work from the same principles as me. I somehow took the crazy decision of training as a hypnotherapist despite not know how I would cope. I did find a way of coping then I was qualified. I did a course on how to help ME sufferers improve their condition. I didn’t expect it to be of use to me personally. I was still stuck.

As a qualified hypnotherapist I knew I would I could deal with Pain. So I decided to work on my own pain. I was off my painkillers in 2 days. My main training had really taught me to challenge my views and perceptions and showed me that most clients go to a therapist because they are stuck in their thinking. I knew I had to think in a new way and I was experimenting with what my unconscious mind could do for me all the time.

Whilst not walking was frustrating it didn’t annoy me. What really annoyed me was seeing my neighbour going for a runner. I wanted to be a runner.  On my website site I had a picture of me running so I decided to combine a couple of principles I knew and focus on becoming

A key image in my improvement from ME/CFS. Running in Aug 89

A key image in my improvement from ME/CFS. Running in Aug 89

this runner from 1989. I set about going into trance and going for a run. I did it everyday for 6 weeks or so. I focused on being that healthy person. I visualised the runs and the feelings in as much detail as I could remember. I decided I was going to become that 23 years old again. I am already aware this article is getting too long and rambling so I will leave the effects I noticed for another time.

After this period I then had reason to test a cross trainer exercise machine. I did a really small distance but felt OK. I repeated it. I used my hypnotherapy skills to play with my experiences and the result is I can now happily run for 1hr.

I am still building up a picture of what was key in my story for the recovery of others, but what I believe is the key missing link is the mental rehearsal before embarking on exercise. CBT and graduated exercise are moving in the right direction but they are trying to exercise a body before it is ready to be built up.

When you visualise something your brain processes it as if it is really happening. My brain therefore felt it had be going for runs. It felt I was a runner and it started to make the necessary adjustments in my body. That is how I view it. There could be many more explanations such as thinking of being a runner running 3-4miles a day why would such a small distance on a cross trainer make much difference to my body? I no longer needed to feel the anxiety over the exercise.

The key is I have now helped several ME sufferers. They are not being forced to exercise. They are not doing something before they are ready mentally or physically. When I am given enough time to work with them they are understanding the process and they too are chipping away at the symptoms and regaining their lives. They are doing it because they can and they naturally discover they can not because they are being told to do a pointless task that drains them of their “limited” energy.

I need more ME patients to work on. I need to get a fuller picture on cases stories. I need to see what kind of blocks need to be worked around and I need to see what really does work and what is misconception.

If you have ME or you know someone with ME please get them to get in touch with me. I believe a lot of what I do can be taught over the internet with video links. I believe ME sufferers can get better and that there is hope. I hope I am someone that because of my experience as a sufferer and also as a professional can help make a difference.

If you disagree with what I write please do make your points to me. I welcome all views both good and bad I am interested in finding solutions not protecting ideas that don’t work.

I also have the requirement to do some basic research in 2012. If I can find enough cases of ME to work with I can do the research on ME. If I can’t I will have to do the work on something I am less passionate about.

  1. #1 by clare hudman on 6 April 2011 - 10:43 am

    Hi Jon,
    Just read your journey. Wanted to say that what you are describing as visualising doing and being a runner many times in exactly the way you’d love to before actually going on a run i.e. rehearsing in your brain is one of the things we teach on the Lightning Process. I found it invaluable myself and have seen it work with loads of other people too. It only actually takes about 10 mins coz our brains can do that future pacing very quickly. If we don’t do this rehearsal then what we are thinking is (because this is how our brains work) – ‘what happened last time I tried running? O god I really paid for it.’ And then unconsciously those stress hormones effect our physiology big time. Hey presto we pay for it or can’t even manage it.
    All the best with your journey and research. Clare (remember me last 2 summer courses?!)

  2. #2 by jonhinch on 6 April 2011 - 2:03 pm

    Thanks for your comment Clare. Of course I remember you. I hope you continue to make good progress helping others too.

  3. #3 by paula carnell on 8 May 2011 - 11:36 pm

    Hi Jon, just found this via the 25% facebook page. can’t write much now but all makes sense, I spend days visualising a trip out or a visit from a friend and by thinking possitive and as long as there are no surprises I manage and cope with the aftereffects in a more possitive way. Feeling ‘it’s worth it’ just to have the odd taste of life!
    I’m interested in being involved in your trials/ research.

  4. #4 by Dutch on 18 September 2011 - 12:38 pm

    I too believe that people with ME/CFS can get better. People are being let down in this country by the unwillingness of the powers that be to fund research into the biological basis to this illness.
    Research by American scientists and dcotors, Dr.Jacob Teitelbaum springs to mind, conclusively shows the physiological/neurological basis to ME/CFS.
    I am fed up with people saying all you need to do is get more exercise and pace yourself a bit and you will be fine. What utter rubbish!
    No amount of visualisation is going to make me better.

  5. #5 by jonhinch on 18 September 2011 - 8:25 pm

    Thanks for commenting Dutch. That is a strong belief you have got there and one I am sure I would have agreed with. I have to say I am less firm on it now. We are one being and all of our systems interact. If I stub my toe on a paving stone then next time I go past the paving stone I am going to be more cautious. I might even be a little tense. I might remember stubbing my toe and how it hurt. I might therefore be prepared in case it happens again. The thought of pain is likely to cause me to tense up a little. If I did stub my toe again it would probably hurt more.
    There is anticipation of a problem and then a problem where the pain in increased. Is that pain real? Well yes as real as any pain is. It is not psychological and yet there was an element of it in what I did.
    When I went out with ME and people saw me it used to annoy me how people would say I was looking well. I remember thinking if only would see me tomorrow or the next day. Experience told me how I was going to be and I knew what to expect. The changes didn’t start for me until I challenged those expectations. If I throw a coin 10 times experience tells me I am likely to get 4-7 heads. If I set out to get 10 heads I might think it will never happen so I won’t get 10 heads. With dedication however know I will eventually get it. We do need to see that we are going to recover or we might not get there.
    With your strong belief I can well believe you won’t recover until you get a solution that is based on physiological/neurological. Would you not consider that it is possible your approach might stop you trying for another solution?
    I was always aware I didn’t know how to recover. I am still not sure if I am a 10 cylinder engine now running on 5 cylinders that will eventually get back to 10 cylinders or if I have just fine tuned my 5 cylinders so that I am getting the most out of them. It doesn’t matter in reality. I have moved myself forward from using a mobility scooter to being a runner again. I still need to sleep 2 hours during the day and this is something I have yet to overcome but I would rather be where I am now than where I was in November 2009 when I started using the knowledge I had learnt to experiment on myself.
    I am lucky that I have helped many people change in ways they and I would not have expected. I assume you don’t have that advantage but I do hope you find a solution and don’t lose as many years of activity as I did because I was trying to be realistic.
    I am working on a book that goes into all my views and will be happy to share it with people like you so that I can improve it. I believe CBT and graduated exercise is getting it wrong. It needs a whole system approach and I believe I can help people improve their lives even if they can’t get back to 10 cylinders. There is hope out there even if a much needed physiological/neurological solution doesn’t appear.

  6. #6 by jonhinch on 18 September 2011 - 9:05 pm

    I can pick up mistakes in my own thinking about ME again: Example of why I might be holding myself back from full recovery

(will not be published)