Tuesday, 24 November 2009

GET and CBT funding

I explained previously that I was attempting to gain access on to the leading GET and CBT programs in the country, by requesting funding from the insurance company that are now reimbursing my sick pay to my employer.  This has unfortunately failed at the first hurdle.  Before even submitting a privately funded case through my GP, the insurance company are not willing to fund it.  I was told over a telephone conversation that it was ‘too expensive and other just as good programs are available’.  They are to instead, locate a CBT expert in the field of ME/CFS within 20 miles of my parents house, to commence a 21 session fortnightly course (NICE guidelines).  It was not a surprise to me, nor too much of a worry that my experiment failed.  To be quite honest, I do not believe at this point in time either CBT or GET will further improve my health.  As a result I am not going to pursue the BARTS or KINGS hospital programs any further.  The only option I have left would be to self fund and this is still not a proven way to gain access.  I am already seeing a psychiatrist and it will be interesting whether an expert in CBT for ME/CFS will offer anything different.  The insurance company on a positive note are offering me therapy sessions to readjust back into society.  I had to be quite frank though and explain to them that this was a long way off, but at least it will be available to me when it is needed.  


  1. I'm really sorry if this sounds negative, but reading your blog I don't think you have come to terms with this disease yet.

    And there are some times when being sympathetic is no help to the patient. You need to face some unpleasant truths.

    I know that every sufferer's case is different (see NICE guidelines), but you sound to me as if you are waiting for someone to come along and fix everything for you.

    There is a lot of resentment in your tone, and you seem to want to lay blame somewhere.

    Your GP doesn't know about XMRV? Well hello! With a father who's a doctor, you of all people should know how many conditions a GP has to keep up with! And XMRV has got no further than a newspaper headline as yet, as you acknowledge yourself.

    Your insurance company will not fund the GET and CBT programmes you want? Erm - why should they?

    Please consider whether your resentment and anger are actually worsening your condition.

    Yes, you DO have to deal with it yourself - and why should you not? Why should someone else come along to rescue you?

    I don't think you can start to deal with this condition - at least as I have experienced it - until you face up to these facts.

    Also your spelling REALLY sucks - there's a difference between ASSESS and ACCESS - and this makes understanding what you write more difficult.

    If this response seems tough - well, it is. But telling you untruths is not going to help you.

  2. PS: There already exists a central resource for you to tell your story:


  3. Firstly - How do you know my father used to be a GP? You wrote 'with a father who is a doctor' and i have never mentioned this in my BLOG. 
Secondly - I have completely come to terms with my illness.
Thirdly - I am not waiting for someone to rescue me, I have been proactive in attempting to find treatments to help my symptoms with no help from anyone but myself. 
Fourthly - The insurance company are wanting me to return to work ASAP and as they are now paying my sick pay, asking if they will fund treatments is an obvious option i had. 
Fifthly - Sorry I used to have dislecsia and for my spelling mistakes.
Sixthly - I was hoping for positive feedback like from Marie that maybe some people actually found what i wrote so far useful. Not everyone finds the same avenues and shared information is helpful.
Seventhly - Some information on here is for my friends and family to understand how I am feeling and your comments are off the mark and unhelpful.

  4. No - Marie gives you sympathy. I gave you challenges.

    If you're not ready to take them on yet, that's OK. If you'd rather everybody felt sorry for you, fine.

    But is pity what you really want? Or do you want to start taking responsibility for your problems? At the moment you seem to want the world to re-arrange itself to suit you, and that's not going to happen.

    They're not going to find a miracle cure just because you need one: in the US there are four million people with ME, and they're ahead of you in the queue.

    If you have dyslexia, use a spellchecker. That's what grown-ups do. If you have an incurable disease - and at present it is - then accept that and try to move on with your life. Deal with what you have, not what you'd like it to be.

    The soldiers who come back from Afghanistan with their legs blown off have to find acceptance: there's no cure for them. Wasting your energy on self-pity won't help you any more than them.

    This is NOT a counsel of despair, nor is it negative. It's actually a way of moving on. There are stages of ME just as there are stages of grief. In some ways it's like a bereavement.

    If you see it as the end of everything, THAT'S negative and unhelpful. If you say, OK I have this problem now how do I deal with it, that is positive.

    And dealing with it doesn't mean "being proactive in trying to find treatments.. with no help from anyone but myself" (can't you hear your own self-pity?). If there was a magic bullet out there, don't you think one of those four million people would have found it by now?

    Stop looking for a magic solution and start living your life as best you can. You might want to think about making life as pleasant as possible for those around you instead of wallowing in your own grief.

  5. Oliver, Just found your blog through Jo (Blogs). Not sure what 'M.E. Ruined My Life's game is but it doesn't seem helpful to me !

    I've had M.E. for 35 years (since 17) and mine started with glandular fever too. Don't see this as life sentence. I was only diagnosed with M.E. 9 years ago and in the intervening time I went to Art School, University, got married, had children, had a career. There were (are) many ups and downs and periods when I was poorly but a life is possible.

    I have found the blogging community invaluable for support --- not just in terms of health issues but for support in maintaining a life, activity beyond this 'bastard illness' as my blogging chum Signs (Readingthesigns) calls it. Personaly I am creative and artistic and so my blogging chums tend to also be artists and writers (some who also have M.E.) but whatever your interest there are sure to be other people and PWME who have similar passions so seek them out because they will understand the difficulties of maintaining an identity and interest whilst dealing with a chronic illness and also the joy of succeeding on following your interest depsite your illness.

    I completely understand the insurance issue. I have been through the same hoops and the insurance companies will pay for CBT/GET because they see it as an investment in their product (i.e. you) so that you can be 'cured' and get back to work and they won't have to pay your premium. In their eyes you are just another product and another opportunity to make profit. The whole Insurance world is in thrall to the Wessley and psychiatric model/lobby. In my case they also insisted I saw a psychiatrist to confirm their view of M.E. i.e that it is psychologically based and can therefore be improved/cured by psychological interventions. Personally I deny and discount this but you are correct in thinking they will pay for such treatment and, indeed, they will press your GP to find appropriate practitioners in your area if they cannot. My GP won't play ball with then because he doesn't feel CBT or GET will help me at this point. Neither does he think that I am in need of psychiatric help. In any case I have already tried both treatments to little effect. My insurance company says this is because I didn't have the 'right practitioner' and should try again. Don't get me wrong: CBT and GET does help some poeple and you might be one of them so if you think it's worth a try, go for it -- especially if someone else will pay ;0)

    Despite what 'M.E.RML' says or thinks I reckon you are doing your best and doing very well after the shock of being hit by a misinterpreted and controversial illness.

    I wish you well


  6. Hi Oliver !
    Don't know if your mum or dad have told you but the drug you have inquired after - Ampligen - is not on market. The authorisation process has recently been stopped by the FDA as preliminary findings showed an increased risk in auto immune diseases ? So my friend pharmacist told me. This would mean that you can't buy or get it anywhere. Hope this is helpfull. See you next week ! Gussy De Coninck

  7. Over the years I've read a fair few blogs on ME and the comments by "ME Ruined My Life" are possibly the most bizarre and obnoxious I've ever encountered.

    How is using your initiative and intelligence to try and get better a bad thing? And then sharing that information to help other people in the same boat?

    You're doing a great service to anyone who follows or chances upon this blog, Oliver. Keep it up.