Wednesday, 11 November 2009


First things first, let me discuss the two treatments the UK does say it provides for ME/CFS.  'Graded Exercise Therapy' (GET) and 'Cognitive Behavioral Therapy' (CBT).  These are the only two treatments the National Institute for Health and Clinical Excellence (NICE) offer.  The medical profession follow these guidelines and never from my experience, even consider trying alternative options.  I must state right from the outset though, that my experience of these therapies is limited, as I have not even been provided with these treatments to date.  A few months back after I had researched them, I spoke to my GP to be told a harsh truth.  I found that KINGS and BARTS hospitals operate the leading programs for CBT and GET respectively and requested to apply for them.  My GP told me that as I am living in Kent, it was impossible to apply, as funding would not be given for out of London cases.  He explained that he had tried a year back with another patient, but was rejected on the basis of funding.  The only option I had, was to apply for the Kent hospital running a similar program (Maidstone), but with a year waiting list.  The surprise to me and especially a physician I saw who worked out of a London hospital was that my GP had not even mentioned these therapies to me.  Perhaps maybe in hindsight knowing the funding and waiting list issues he did not want to give me false expectations.  If the only two treatments (as seen by the medical profession) in the UK for ME/CFS are not even readily available to patients, in my eyes the NICE guidelines need updating.  This is before even discussing whether or not these therapies actually cure the illness.  

I don’t disagree that CBT and GET are very important in an overall package of treatment as I have said before.  I just believe so much more can now be done.  ME/CFS does cause significant cognitive issues, for me mainly being an immense amount of uncontrollable anxiety.  Before I moved away from my home and place of work, I also went into a deep depression.  This was from being unable to perform normal activities, deal with my responsibilities and having a serious amount of mental confusion.  I did not understand why I was ill and no one could to tell me otherwise.  I have now managed to control my depression and to a degree my anxieties, with my new lifestyle partially away from society at my parents farm.  It was vital for me to understand my new physical and mental limits, otherwise known as ‘pacing’, but this in itself has caused other cognitive problems.  As a 28 year old, a serious lack of socialising or undertaking of any activities, does often drain my positivity and any reserves.  As a result I have started to see a mental health professional psychiatrist.  I believe it is key to remove all stresses and anxieties to allow the body to repair.  I can see how not that long ago the medical profession saw ME/CFS as a cognitive illness, and offered patients antidepressants and told them to get on with their lives.  However, I hope this blog will open some peoples eyes and broaden there appreciation to how far the world has actually come.

Graded exercise (as I understand it from my research) is a form of therapy that trains a patient to appreciate their new levels of personal capability.  By steadily increasing activities but ensuring their current maximum limit is never surpassed, the hope is that over time the body will allow such increases with no worsening of symptoms.  However much this sounds like a reasonable approach, I believe it has its limitations, which is why it can only be part of a treatment plan.  I prefer to use the phrase ‘pacing’ to deal with all my activities per day.  After a few year with the illness I now know exactly my limits, and am very stringent not to over do anything.  This is fundamental and increasing activities does not require a program.  Each individual should know in themselves when extra activities can be achieved.  The danger of pushing past the body’s current limit, which I have learnt from the hard way, is it then takes hours, days or even weeks to return back to how I previously felt.  The way I like to look at this cycle now is the energy my body used should have been been put to improve my health.  This can all be very difficult to manage.  At times, I have felt the urge to push the boundaries, to pretend occasionally I am having a normal day.  The process is frustrating, but over the year I have developed a good understanding and any small improvements in health, have marginally allowed more activities and greater positivity.  I understand how some individuals do require a strict teaching in these methods.  I have been lucky enough to have my parents look after me.  All my daily stresses of life have been taken away, however GET would be critical in cases where this was not possible.  I believe to enable the best chance for recovery these approaches must be taken, but understandably it all depends on the extent of the illness.  

My work have switched me onto an insurance policy to cover my sick pay.  This gave me an idea as the insurance company would want me to return to work as soon as possible.  I am going to ask if they would fund my CBT and GET and if accepted, request from my GP to apply as a self funded case.  This has not yet happened but any new information will be shared.

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