Saturday, 12 September 2015

"The Use of Patient Blogs as a Care Resource"

QUB ePatients Conference 12th September 2015

Today a video of the audio PowerPoint that I've been working on over the summer was shown at the QUB ePatient Conference in Belfast.

My own health was (& is) not sufficient to cope with actually presenting this live, so I was delighted when Dr Steven Wilson  the organiser of the event agreed to me presenting remotely.

I am also hugely indebted to Joan McParland and Martina Marks, my co-Trustees for Hope 4 ME & Fibro Northern Ireland, for attending the event and answering questions after the presentation on my behalf .

This is the presentation:

To watch in full screen, start video then click on the
word YouTube in bottom right corner.

I stayed at home and was delighted to be able to follow the event on Twitter using the tag #QUBept  and there were many ideas and concepts discussed that will require further thought on my part!

Altogether a fascinating event.

I look forward to further discussions online on some of the issues raised.


Links to material shown in my presentation:

Media Articles: 
"ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers" The Telegraph
"Exercise can help with ME, scientists say" BBC

ME Association Links:

Forward-ME Minutes of meeting at House of Lords 25 June 2014
Our CBT, GET and Pacing Survey calls for major changes to therapies offered for ME/CFS | 29 May 2015

NICE Guidelines for ME [Edited to add this link on 16th Sept]
Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children
NICE guidelines [CG53] Published date: August 2007
It is the assumption of "increase" that I find problematical with the GET programmes.

Sites that influenced me:
The World of One Room - Face Book page
Stonebird website
Invest in ME website
Let's Do it for ME (fund-raising for Invest in ME)

Canadian Consensus Criteria for ME (online pdf)

Paper referenced by Prof VanNess during his Feb 2014 visit to N.Ireland
Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome Christopher R. Snell, Staci R. Stevens, Todd E. Davenport and J. Mark Van Ness (2013)

Our Charity webpages:
 Hope 4 ME & Fibro Northern Ireland
Facebook page for Hope 4 ME & Fibro Northern Ireland

Links to Just ME posts mentioned:
Living Death Disease
Well Enough to Drink Coffee
"Play-Up & Lay-Up" not "Boom & Bust"
Circles of Influence & ME

Other related material:
Recent video of Jessica Taylor and the work she does with her charity Share a Star
Link to Greg Crowhurst's book: Severe ME: A Carer's Guide 

14th Sept: Edit to add a link to Greg Crowhurst's review of my video on Stonebird:
This video could save your life !
Thank you Greg.  A review, like this, from you means everything!


  1. Great presentation Sally. It's really useful to frame patients in the context of being a resource, because most of us end up knowing more about our illness than our GPs. Our experience should be infoming research and how ME is managed within the NHS and we should all be working together.

    1. Thank you. :D I think all our little waves we are making are gradually building to the storm we need. xx

  2. Thank you so much for sharing this with us. You have given me so much helpful, valuable information. I can't wait to share this with my me/fibro friends. I am a fibro/cfs sufferer and have had cervical and lumbar spine surgery amongst other things. My sciatic pain is still quite bad and the advice recently from my spine surgeon, who is actually generally quite a fantastic surgeon and professional lady, was to swim for 30 minutes a day as this would resolve my problem. She is aware of my fibro and cfs but has no understanding of how it affects my daily life....even taking a shower can leave me exhausted and needing not only to rest but also to be helped to take the shower and help with washing, drying and dressing! So i'm sure you can imagine how I felt at her request to swim for 30 minutes every day. For a regular person who doesn't suffer from fibro/cfs I am quite sure her advice was sound and very helpful but there is no way I can do what she is asking. If I managed to do it once IT would send me into a horrendous flare which would leave me in unimaginable pain and fatigue for days. Proving exactly what your article has just explained. Exercise in my situation would do more harm than good. I want to thank you for your time in putting this information together in such a straightforward, informative way. I am an administrator for a fibromyalgia Facebook group and would like to share this with my fibro friends to encourage them as you have me. I hope this is ok. Kind regards Alison Jones

    1. Thank you Alison for you lovely comments about this presentation - and YES I think there are many who encounter exactly the problem you describe. You are welcome to share the video widely, and if you can show it to any medical professionals then so much the better! ;)

      Hoping for better times for all of us soonest. xx

    2. she might be a good surgeon but she knows stuff all about me/cfs/fms don't you exercise her advice is just plain stupid

  3. Fantastic work Sally. This presentation is clear and easy to follow. Thank you for all your hard work despite your own health difficulties xxx

  4. Your presentation was excellent! I so do hope and pray that the right ears hear your message!
    I've been ill for almost 6 years now, but was only diagnosed with fibro 3 years ago. I think I have spent most of that time being a victim to this illness. I've been trying to get help from the NHS but because I've been diagnosed with fibro as opposed to ME I'm not allowed to access the chronic fatigue clinic despite the fatigue being my main life altering symptom!
    Due to this, I am now travelling to London to have a consultation with a private doctor whom I hope will help provide me with more tools and advice about this condition.
    It is so sad that especially as an ex nurse, I and so many others have to seek help and support outside of the NHS because their recommendations for treatment simply do more harm than good.
    Sally, I would encourage you to send this to the Health Minister of the UK as well as heads of NHS and NICE.
    You are a true champion for the cause for our voices to be heard! Thank you💐 xxxx

    1. Thank you Fiona - the video has been shared fairly widely to date, but I'm always happy for it to go further, and if anyone can get it in front of key decision makers then I'm happy for that to happen! :P

      Best wishes with your London doctor, I too have had to supplement NHS care with private consultations.