Tuesday, 22 September 2015

Graded Exercise Therapy? No Thank You!

I have created a slide series (below)  to give a quick over view of the problem with graded exercise advice for ME patients given in NICE guidelines (UK).

M.E. patients & the problem with NICE advice on exercise from Sally Burch

Update 2016 - This paper  by Mark Vink shows that data from the PACE trial itself, shows that there are no real benefits to either CBT or GET:
The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review

Live links for the slides:

Other posts I've written in relation to exercise and ME:

"Play-Up & Lay-Up" not "Boom & Bust" Sept 2014
Rhythm+ and Endomondo: HR monitoring for ME Aug 2014
The Exercise Catch 22! Jul 2014
ME Awareness - Why NOT Exercise? May 2014
A few notes on using a HR Monitor for Pacing Feb 2014
The Dilemmas of Exercise and M.E.  Dec 2013

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!