Thursday, 30 December 2010

I Have A Dream.... No, Really!

I have a dream.

This could either turn into something magnificent or die a slow death. Either way, I'm convinced it's worth trying to make it manifest.

Fairly recently, I started a Heart Rate Monitor group for those of us who saw the benefit of judging our ability levels based upon what our heart rate tells us. This has resulted in a Facebook group HERE and, more recently, a discussion forum HERE.

My aim with these groups was, and still is, to create a useful resource for the community. A place where information is centrally stored and updated to reflect the constantly changing scientific research in this area. This will continue. However, I am conscious that our heart rates cannot ever be the full picture. For some of us, they serve no useful purpose in relation to mental activity and, for others, they are considerably influenced by prescribed medications, supplements, food and water consumption etcetera.

In my view, there is merit in widening the focus. In taking a more holistic approach to our activity management/avoiding relapses/keeping our bodies as strong and healthy as they can be. This would mean incorporating an awareness of supplements/medication, diet, exercise, how different activities impact our overall health, what activities are particularly stressful for our bodies and how realistic we are about our levels of stamina.

Most of you with ME/CFS will readily be able to identify with the frustrations I experienced in the early days of my illness. Although I consider myself bright and relatively well versed in research, separating the useful information from the nonsense was a difficult task. I can only imagine how much more difficult that is for those who aren't able to scour the internet for information due to ill health or who are instantly discouraged by all the conflicting views on this illness.

This leads me to my dream. Thinking about what I would have valued most in those early days, when neither doctors nor neurologists were providing me with any information or comfort, I envisage a document that includes a collection of relevant scientific data, the collective wisdom of the trailblazing health professionals who are treating sufferers, the sage advice of long-term ME/CFS patients who have already walked the path. Most of this is already out there if you have the time to patiently pull it all together from various sources. When you are scared and sick though, how frustrating is it to have to do it from scratch?

I acknowledge that there are websites out there that already try to serve as a 'one-stop shop' for information and support. What I am suggesting is not at all a new idea. In my experience though, I cannot say I can think of a place that meets my needs in the way I think a regularly updated and streamlined resource could. What I have in mind is not a website but a PDF or similar. Something that people can dip in and out of as required, with searchable, indexed contents. Something that is comprehensive enough to satisfy those that like to voraciously research their new condition whilst remaining accessible to those that only want specific information or can only digest a small amount at a time.

What I am NOT suggesting is that I am going to create my own version of 'How to Cure ME/CFS'. If the greatest scientific and medical minds have not yet reached anywhere near a consensus on how to allow us to recover, what hope would I have? No, instead this would be more like a menu of options. It could contain the various approaches of the leading experts in the field and it could include the anecdotal opinions of the wider community. This would all be provided with the understanding that it offers only opinion/suggestions. It would not be a protocol and it would not preach any single approach.

I am fully aware this is, for the moment, blue-sky thinking. I am also very mindful of my own health limitations and that those involved would most likely have similar limitations. I really do not see that as a reason not to try though. I am already in awe of the talents of many people I have met within the ME/CFS community and I see no reason why that collective potential cannot be harnessed to produce something of lasting purpose and benefit.

Obviously, I cannot do this alone. If it is to achieve the high standards I envisage, it would be no small task. And so, rather than me writing about my feelings or my symptoms or my approach to improving my health, I have decided to write this post. Consider it a call to arms. Consider it an appeal to you all, healthy or ill. Consider it an amazing opportunity to make a real difference. To make this work, it will require the efforts of many people just like you. However little you think you can offer, I am certain we can all contribute. Whether it be a summary of what 'works' for you or a collection of research articles/website links you find invaluable or whether it be skills you have from your professional lives past or present, you can all help make it happen.

In closing, let me reassure you that I am already choosing to overcome the idea that it cannot be done. I would settle for glorious failure before defeatism any day. I do hope John Lennon was right, when he sang:

"You may say I'm a dreamer. But I'm not the only one."


  1. gosh, that bed may not be getting you to sleep but it certainly seems to have given you a new lease on life! i sense this new energy behind those words - will help where and if i can (i too have an idea though...)

  2. PS - you're definitely not the only dreamer.

  3. Thanks KP :) Is your idea related or something quite separate?

    I've been thinking about this for some time now but I've always been halted by thoughts of how difficult it would be and how great the risk was of it coming to nothing. There's also an element of not wanting to appear too....hmmm, what's the right word? grandiose? I'm sure some might read this and think "who does this guy think he is?".

    I've overcome that in my mind though. I'm only trying to make a contribution, as i'm sure everyone would love to be able to do. Thanks for joining the dream ;)

  4. hey, you've got to dream big...i do think you've set yourself (and others!) a fairly ambitious task though. and was just thinking before too that it would probably involve a lot of work in terms of negotiating copyright of other peoples work if you want to include the best stuff out there. not saying it can't be done though, not at all. and like you say it may never eventuate...or it may become something wonderful. just PLEASE look after you, and know that in simply getting to know yourself better and sharing that you are already giving so much to the world.

    my idea...not really related (people with M.E. though. oh, maybe related?!)

    keep dreaming.

  5. Barry - love your idea. I think that "blue-sky thinking" is the way to live, actually. Glad that you quoted Mr. Lennon. (After 13 years with this illness, I had Lennon's self portrait tattoo'd on my forearm, with his declaration "Imagine..." beneath it...) Nothing is impossible, my friend. Contributions will grow exponentially - Let's do it. Thanks for your leadership... dream on! =)

  6. KP - I knew either Cusp or yourself would caution me to look after myself ;) I appreciate it. And I will. Promise. It's just not in me to sit in the background though - I have to be doing something. Copyright issues are valid and it's on my list of 'snags'. Everything is possible to work around though :) Keep the musings flowing as I'm sure there are difficulties I haven't even imagined yet!

    Nadine - Welcome aboard :) Love your attitude. Let's do what we can and see where it takes us. At the very least, we will end up with an unofficial collection of perspectives and ideas from within the community. That, in itself, has significant value attached.

  7. Great idea Barry...I think if you start small it will organically grow as you go along and others contribute.

  8. I do think its possible. I set up an online resource years ago for gay widowers. It took some time and research but I did manage to get it to work and it was received and used for several years. So ... even though we are sick I do think its possible if we just bite off baby steps ..

  9. Well I won't say it then :O)

  10. Great idea, if anyone can, do it somehow I believe you can. Just to echo K, be careful. The idea is out there but I think it could do with some fine tuning. Look forward to the result one day.

  11. Here is my suggestion for one part of a document:

    CFS for beginners

    I guess what I am thinking is that this document should really keep away from giving advice about treatments and supplements etc and just focus on trying to make it clear how important it is to ‘believe’ the diagnosis and to accept that trying to push through is WRONG. From what I gather nearly everyone who gets CFS continues to push in the early stages and I wish that I had been smarter and I had just gone straight into ‘rest mode’. When a doctor first told me I had CFS that was pretty much all she said … she didn’t tell me that pushing would make it worse and she didn’t say I needed to do as little as possible. When I found the doctor I currently have he did tell me these things but it was too late by then and also because I hadn’t yet spoken to seasoned CFSers I just didn’t believe it … so I pushed and pushed. I think if we can write a document that really gets the message through then it will really help people avoid making themselves worse.

    The other thing I think it should focus on is what newly diagnosed people can actually do to help themselves. Again I am not talking about treatments but practical things like finding a social worker who can help with services available in the persons area and applying for disability. I also wish I had had someone to just calm me down and say ‘don’t panic and don’t rush into anything’. I really felt like I had to do everything and find the cure that very week … I really needed a mentor or just someone to say ‘slow down and take care of your body first and then spend some time thinking about it all’. I needed to know I was not alone and there would be plenty of time to look at treatments. I think finding a way to accept it and understand the limitations should be everyones priority and looking at treatment secondary.

    There are already lots of websites with treatment options etc but I am not sure there is anything to help you before you get to that step …

    So that is basically my idea …. What do you think??

  12. Great post! I was wondering what heart rate monitor you have? Kitty x

  13. Barry - I am really enjoying reading your blog. I love this idea. Yes, it is a little daunting but I have no doubt that M.E./CFSers can do it. We are an amazing bunch!

    I would be willing to 'house' it on my website that I am launching in February. It is an organization that I am starting called Invisivle Awareness. The goal is to provide a space where one person can share their M.E./CFS story every month and the rest of us help it go viral. It is a way to provide a vehicle for their voice, if you will. So many of us live an almost invisible life.

    Anyway, I would love to host the pdf there if that would be acceptable to you.

    I love to do research as well but do to a chemical accident I was involved in this past June I now have a lot of difficulty comprehending the scientific type verbaige so I probably wouldn't be a good person for that.

    Having said that, however, if I can be of help in some other fashion, please let me know.

    Lastly, would you mind if I did a post on my blog and quote 1-2 paragraphs of your post (and will provide a link here) so I can let my readers know about your dream project?

    I'm glad you are still dreaming. That is what gives us hope! :-)

  14. Thank you all for your comments :)

    I've deliberately avoided following up on this blog entry since I wrote it as I wanted to let the dust settle and gauge reactions. This has been useful as I now have a clearer idea of how to progress, so thank you for your input.

    Dominique - thank you for your kind offer of hosting, I really appreciate it :) Yes, by all means go ahead and quote me on your blog. Thank you for helping to raise awareness! I''m about to add a new post that will flesh out a lot of the vague areas in this post though so perhaps wait to see that first.

    Kitty - the heart rate monitor I use is a Pulse Sonic K922. Others have reported good things about Polar and Omron models too.