Edinburgh fatigue event now included! #MSFatigue #ClinicSpeak
Dear MS Stakeholder
We are currently completing a systematic review of exercise and behavioural interventions for MS fatigue. The project has been funded by the MS Society UK and the study team is made up of internationally renowned researchers from the fields of Health Psychology (Professor Rona Moss-Morris, King’s College London; Dr Sarah Thomas, University of Bournemouth) and Physiotherapy (Professor Tom Mercer & Dr Marietta Van der Linden, Queen Margaret University, Edinburgh; Dr Claire White, King’s College London).
As part of the dissemination of the work, we are holding two stakeholder event with MS patients, their families and carers in order to share the findings regarding the most effective interventions currently available and seeking their feedback and preferences.
There will be two sessions, one in London on the 3 September 2016 and one in Edinburgh. We have embedded the advert for the London event if you are interested in attending; please register via our London eventbrite link or Edinburgh eventbrite link.
We look forward to seeing you at the event.
Dr Jane Petty, Dr Anthony Harrison and Professor Rona Moss-Morris
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I guess now CBT & GET are proving so unsuccessful as treatments in CFS & ME that these type health professionals are looking to see if they can apply these to other illnesses where there's perhaps not a vicious flare up of symptoms on exercise. I hope that through funding this, the MS society is aware of the risks of attributing fatigue and disability to atiiutudes and behaviour when it's in many going to stem from the MS disease process itself. I genuinely hope that theses therapies can benefit people with MS and improve quality of life but I'm going to need a lot of proof. Trying to force them on the Myalgic encephalomylitis/systemic exertion intolerance disease community and classing those conditions as behavioural conditions has been very harmful to those afflicted.
My first thought was about the harm done by claims about the benefits of biopsychosocial rehabilitation for CFS and ME too. I've read what people like Prof Simon Duffy and James Coyne have written about the PACE trial. People should learn from these mistakes.When the DWP is pushing everyone to 'recover', a systematic review of unblinded trials claiming that improvements in self-report outcomes mean that exercise is an effective treatment is just what we don't need. The NHS must raise standards for treatments that don't cost it much, but take a lot of time and effort from patients. If the evidence of efficacy wouldn't be good enough to justify an expensive drug, it shouldn't be good enough to justify some behavioral treatment either.
I wondered what GET was so I had a look online Graded Exercise Therapy. It also mentioned pacing as a management strategy for CFS & ME. I have found High Impact CBT, pacing and exercise positive for my MS. Low Impact CBT was useless.
I would love to come to this event, but would be exhausted before I arrived. I've had MS for years. I was a workaholic and managed my fatigue using my own strategies. When offered a booklet to help I read things I'd been doing for decades. I now have SPMS and it is a whole new ballgame. What about when we are in the Gym with our physiotherapists and we can only do so much because although we're not tired our limbs will not move. Something we could do three times then becomes impossible. To describe this to all those who do not have MS, tread on one shoelace and that is how it feels. Fatigue cannot be put into one category. Just as some people take to their bed with a cold and say they have flu. It's not that simple.
I thought this event was really interesting and think the the psychological area of exercise is worth researching – thanks for posting!