Friday, 21 January 2011

The Power of Being Heard

Here in the UK, our expectations of treatment for ME/CFS are somewhat lower than some other countries. We are still routinely offered Cognitive Behavioural Therapy and/or Graded Exercise Therapy with little attention paid to physical symptoms. This, of course, angers me and the more I hear of the injustices served out to fellow sufferers the more angry I get.

Today I reflected on that sense of anger almost making me give up. I keep very up to date with all the advocacy groups and, whilst I'd never recommend burying your head in the sand and ignoring all that is wrong out there, I do wonder whether I need to spend a little less time focusing on what is wrong and more time focusing on what can be turned into positives. This update will address two areas linked to the theme.

Firstly, I visited my GP today (primary care physician, I guess they'd be called in other countries). I had, after being referred to the 'ME/CFS Centre' and not finding much of value there, almost given up on the medical fraternity and decided it was pointless dragging my exhausted body to appointments with doctors if nothing was going to be treated. However, I decided to give my GP one more try as I knew he was a guy who generally listened and took my opinions onboard.

So, I spent a large part of this week nervously preparing. I had booked a double appointment so that, in theory, I would have 30 minutes of his time. I had also booked a nurse appointment for straight after, in the optimistic hope I might get some blood tests authorised. I identified various tests that I felt should be carried out to exclude underlying infections (from parasites, bacteria or viruses) and meticulously prepared mini-speeches on why he should accept my requests.

I began by asking him to honestly share his views on ME/CFS and on what he was doing with other patients who had the illness. He was very honest about finding treating the illness frustrating (he's a man and a doctor - he likes to fix things!) and that he believes it is a physical disability of unknown origin. The poor guy must have felt like he was speed-dating me whilst I weighed up his pros and cons. I explained that I was frustrated with the diagnosis having the implications of me being beyond treatment and simply being left to manage as best I can. I then began what I thought were going to be fraught negotiations on which tests I could have. I fully expected to be told that I had received all the standard blood work and that nothing else would be done.

To my surprise, he agreed to every test I asked for! In fact, he added one I hadn't thought of. He also said he wished his medical student had been present as I was an "expert patient" who could pass on valuable learning. Whether this was empty flattery or not, I don't know, but it sure hit the spot!

Regardless of whether or not the tests throw up anything we can treat, I left feeling validated. I was heard and I was respected. Sometimes the positive outcome doesn't have to be that what is wrong is fixed. Sometimes it can be that we are simply listened to. He has said he is open to exploring different treatment options with me as long as I can back up my requests with meaningful research papers/data. This is potentially massive when considering how far behind the U.S. the U.K. currently is. There is much I can explore now, with the faith that the wisdom of people such as Dr Lapp, Dr Cheney or Dr Klimas might influence my own doctor.

So, I gave some blood for tests and I have to go back to give more (a lot more!) soon. A very productive day!

This also links in with the aims I had when setting up M.E. Community Projects. What I hope to achieve isn't based upon righting all the wrongs out there. It isn't based on anger or cynicism or negativity. It is solely focused upon those little, tangible ways of making a difference and helping others to feel supported, heard and validated.

Things are moving well in this area. I have been lucky enough to convince two very talented people to take overall responsibility for the editorial and design elements and we have already begun scoping out the first resource we will develop. If you want to get involved in some way (be it research, opinions, writing or supporting the cause in some other way) I'd love to hear from you.

The email address is:

Here's to more of us being heard and supported :)


  1. there is SO much to be said for feeling heard, and for walking away from an appointment feeling uplifted rather than deflated. sounds like this man is one of the special ones just to be willing to be educated and and work in partnership with you.

    love the imagine of the two of you speeddating...may it be the start of something beautiful!

  2. Even if your Dr was a complete idiot it would be well worth going to see him for a speed dating session if he looked like the one in the picture!!

    You have of course been lucky enough to have the added bonus ... he sounds like a great guy and I am so glad you decided to go back to him ... Lets hope something shows in the tests and that he continues to show an interest in your health :)

  3. (make that 'image' - not imagine - head not working)

  4. You're post lifted my spirits today. I had a pretty down day today when a friend told me I just needed to get outside for an hour every day. My heart just sank as I thought of the twenty years I have spent trying to make people understand this insiduous illness. It was quite the downer.

    Thank you for the reminder that we do get good days every once in a while.

    I would love to help out with your project but I am having a lot of trouble with my eyes as of late.

    I'm really enjoying your blog.

  5. Think maybe there should be a list of tests on the Group that should/could be tried with accompanying links to research that backs up reasons for having tests. One of the difficluties I had at the start (and still have to an extent) is that I just cannot digest larged amounts of info...even by taking it piecemeal...just doesn't 'go in' so cannot get to grips with all that stuff. The one time I tried via Dr Myhill I did exactly what you did...went through all her notes/report/recommendations, booked a double appt. at GP and went through it all with him (he ahd a opy too) Whatever she recommended, he refused. Gave up after that...sick of it all and thought I'll just get on with it like I always have.

  6. I must admit to only reading this because of the picture of Dr Carter. However, once I'd got past that little fluttery moment I enjoyed your post as well. I'm lucky enough to have a GP like yours who is willing to leave no stone unturned to try and improve my quality of life. Her mind is open and she negotiates things with me. She also 'reads' me, and feeds back how I seem to her. Her practice partner, on the other had, is a Mr Fixit. He has a standard spiel for each (recognised) condition and keeps to his fifteen minutes. That's fine if you have a boil or an eye infection. My experience is most UK GPs are like the latter and we mostly get fobbed off in the way Cusp comments.

    I recently thanked my doctor for the time she took going through my notes, ordering tests and generally taking time to listen. She said, 'but it's what we are here for'.

  7. Lee Lee / KP - thanks, I feel lucky to have him, compared to some horror stories from others...

    Dominique - I'm sorry you are going through that right now. People can be so.....ggggrrrr... I won't say it, but you know what I mean ;) Days where we feel validated are so, so important. I hope you still find them here and there too. Don't worry about the project, focus on looking after yourself. You've already made the kind offer to host so you ARE helping :)

    Cusp - great idea ... although I'm thinking that there probably needs to be something separate for different countries. I think my doc was actually relieved that I went in and said "I want these tests" rather than "what tests can you give me?"...the fact he ended up suggesting testing me for an auto-immune disease I had never heard of before suggests he started thinking in a different way about my treatment.

    Jo - Thanks for your honesty. I'll try to put more dishy men up top to lure in the female readership :P

    My doctor is male but I wonder if people have generally found female doctors to be more open to exploring things rather than trying to dish out prescriptions and 'fix' us?

  8. I share a similar experience with my GP. I also checked her thinking about ME at the beginning and she is on the ''physical illness of viral and possibly other origin camp''. I have found her to be encouraging, open to exploring options, and prepared to read papers.
    My experience with 2 other male consultants has been less satisfying . The arrogance was embarrassing: I had to put up with dismissive comments, various attempts to sell me the 'lightning process', or suggestions I was so 'unhappy that I needed to make myself sick' to have a sense of purpose. Interestingly, once I went accompanied by my then (male) partner- and the tone changed...
    Having said that, a few years ago I saw a female GP before the current one who advised me against 'going down the road of ME', as if I had a choice.
    In the meantime I won't repeat the experience of 'speed dating' my complete idiot consultant, luckily he doesn't look anything like the one in the picture!

    Personally I think a 'life-experienced' female GP may be more open to exploring and less worried about being unable to 'fix' an ME patient. The problem is that some medical practitioners get very stuck in the medical model and find it hard to cope with the feeling of disempowerment and loss that an ME patient is likely to mirror. Hence the arrogance and dismissive attitude. Not an excuse though.

  9. Interesting post Barry. Well done on the preparations and even better that you got such a positive response.
    At the start of your post you say " Here in the UK, our expectations of treatment for ME/CFS are somewhat lower than some other countries." I must say that at times I had 'envied' the UK as you seem to have ME centres... but after reading your post, maybe these centres are all focussing on CBT? Here in Ireland it is still veru much " nothing we can do for you' kind of attitude.
    I must say that my GP does take my ME serious and does listen. but when I went to her with a list of possible blood tests a few years ago, none were done, other that the normal ones.

    For me, as you migh know, I find living with ME more barable when I do stick my head in the sand, so to speak. When I focus too much on what is really happening, I only feel more ill.
    Of course I do take my head out of this proverbial sand at times and see/hear what is going on in terms of research. In all though I do feel that when the right treatment become available, I will hear about it, in the meantime I have a life to live.

    Wishing you all the best and of course it would be brillaint if one or more of the tests bring more clarificationd for you and well being as a result.
    Take care my friend!

  10. onirical - sorry to hear your experiences have been so crappy at times .... I remember the first time I saw a neurologist - if I had had the energy I would have dragged him out of the room by his ears and giving him a sound beating, lol. His arrogance was astounding and I had to remind him that he was not qualified to diagnose depression.

    We probably are over-generalising with the assertion that female doctors (more mature ones especially) are a better choice but I do see some logic in it.

    Corina - Ireland is even worse than the UK? :( The ME Centres do sound a lot more exciting than they are. Basically they decide if you seem to have ME/CFS and, if so, what multi-disciplinary services you should access. Most of those services are centred around coping skills, hence CBT, GET etc. Not completely useless but not much help when you are already managing the psychological and common-sense aspects yourself.

    What tests were requested and refused? What was the rationale for that?

    I don't think I can argue with anyone who decides to accept they are ill and cannot currently be cured and try to live life as much as possible. It's eminently sensible. I think I'm still at the stage where I feel too much hasn't been ruled out yet though and these tests will help me move past that. Also, a lot of the 'purpose' I find will be related to helping others who are less comfortable researching and being demanding.

    Thanks for your good wishes. Fond regards, as always x