Activity management

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onlyme2013
Posts: 21
Joined: Sun Aug 11, 2013 3:58 pm

by onlyme2013 on Wed Aug 14, 2013 12:23 pm

Activity management

Hello, I'd be really grateful for any advice. My son has ME and we are being told to increase his activity each week. However, it's become very clear that he's feeling worse the more he does. I feel that he is better when allowed to rest when necessary and not overdo things but we're under some pressure to keep "pressing forward".
Can anyone offer any advice as to whether we should continue increasing activity? Would really appreciate it. Thank you.

Catrina26
Posts: 8
Joined: Wed Aug 14, 2013 11:53 am

by Catrina26 on Wed Aug 14, 2013 1:08 pm

Re: Activity management

I just wanted to let you know we have had a similar experience. My daughter was referred to physio shortly after diagnosing CFS and the physio we saw pushed her really hard to the point where she was relapsing for 2/3 weeks after each session. I felt she had little knowledge of CFS and how it affects people. Her Rheumatologist stopped it after we complained how unwell it was making her. We have recently returned for an assessment and saw a new physio we was fab. Didn't have a lot of first hand experience with children but had read up before seeing my daughter. She said she would NOT benefit from a structured ridged exercise routine/visits and gave us exercises to do at home when she was able to and different ones i.e. if legs sore she could do arms etc and only 4 to 5 repetitions of each. Felt she had a much better understanding of how doing it slowly and building slowing would help rather than getting them to build on it every week. For my daughter this has been the right approach.

onlyme2013
Posts: 21
Joined: Sun Aug 11, 2013 3:58 pm

by onlyme2013 on Wed Aug 14, 2013 1:16 pm

Re: Activity management

Thank you so much for the reply. I'm really keen to get as much feedback on whether the relapses will stop or if it will just continue, also I'm concerned as he seems to take longer to recover with each relapse. Surely that can't be doing his health any good at all!
I've also asked my question on another thread so am hopeful I will get more information.

Bluebottle
Posts: 36
Joined: Fri Aug 02, 2013 2:36 pm

by Bluebottle on Wed Aug 14, 2013 3:09 pm

Re: Activity management

There is actually no evidence whatsoever that exercise improves the neurological illnessmyalgic encephalomyelitis. I suggest you contact the TYMES Trust for advice:

http://tymestrust.org/
ME – the truth about exercise and therapy

The Guardian, Thursday 24 February 2011

Reporting on the PACE trial of treatments for ME/CFS by Professor White and colleagues, Sarah Boseley (Report, 18 February) writes that patient groups "insist it is a physical disease, which probably has a viral cause".

Research co-funded by The Young ME Sufferers Trust and published by Dundee University last year revealed abnormalities in children's blood consistent with persistent viral infection. The trust deals with childhood cases so severe that sufferers cannot swallow and have to be tube-fed. Too weak to walk, they need to be carried and suffer unbearable neuropathic pain.

Professor Malcolm Hooper points out that the World Health Organisation classifies ME as a neurological disorder but that the PACE researchers selected patients on criteria that exclude neurological disorders. They claim that graded exercise therapy (GET) and cognitive behaviour therapy (CBT) promote recovery. However, in the latest study of GET and CBT for people with chronic fatigue syndrome, researchers concluded that the treatment resulted in worse physical function and bodily pain scores (Clinical Rheumatology, 15 January 2011). In the practical experience of the families we help, we found children's symptoms are exacerbated with GET, and a period of extended convalescence is needed to enable their strength to return.

In 2010, we were honoured to receive the Queen's Award for Voluntary Service (the MBE for volunteer groups) and we feel it important that we distance ourselves from comments in the article by the Association of Young People with ME, calling for the PACE trial to be replicated in children. Such misguided views have already caused too much distress to patients and families.

Jane Colby FRSA

Executive director, The Young ME Sufferers Trust
http://www.theguardian.com/society/2011 ... rapy/print

onlyme2013
Posts: 21
Joined: Sun Aug 11, 2013 3:58 pm

by onlyme2013 on Wed Aug 14, 2013 6:07 pm

Re: Activity management

Thanks Bluebottle that's really interesting. I will contact the tymes trust and ask for some advice. I'm a bit disappointed that no-one got back to me on here. I've asked the same question in two different threads as well!

goblinff
Posts: 30
Joined: Sun Aug 11, 2013 6:21 pm

by goblinff on Wed Aug 14, 2013 6:35 pm

Re: Activity management

The clinic's open all week OnlyMe. I think it takes time for them to read the questions and formulate replies.
I'd be worried if they were just throwing out replies every 30 seconds!

Catrina26
Posts: 8
Joined: Wed Aug 14, 2013 11:53 am

by Catrina26 on Wed Aug 14, 2013 9:21 pm

Re: Activity management

We found that the relapses continued in my daughter's case when physio was pushed on her. It was a horrible and stressful time at a time when she was at her worst. The worst I can remember is having an appointment with physio then seeing her Rheumatologist. She was (is still) using a wheelchair her Rheumatologist had allocated to her and the physio asked why she was using it, wasn't happy with my daughter's reply that she felt dreadful that day (and looked it), told her to get out and walk to Rheum appointment along a long corridor. We got half way along and she almost collapsed and was crying with the pain. My husband complained to Rheumatologist who was shocked at treatment and the fact my daughter looked so terribly ill and that was when all physio was cancelled as it was obviously making her worse. Every child is different so what works for one may not work for another but for my daughter we have found it causes relapses and if we take things slow there is a small improvement. I hope someone is able to reply to you soon. We are all just desparately looking for answers and some help for our children. x

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talkhealth
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Joined: Thu Nov 04, 2010 3:29 pm

by talkhealth on Wed Aug 14, 2013 9:33 pm

Re: Activity management

Hello Catrina26- thank you for your questions. Our experts are available throughout the week and will answer all the questions as best as they can during this week, but clearly there have been many questions and as someone quite correctly pointed out it does take a very long time to read all the posts. We have marked the clinic up into sections so that it is easier for the experts and viewers and participants to find topics of specific interest. However we do ask firstly that it is only the experts that answer the questions and secondly it makes it very hard for the experts to actually find the original questions in the first place.
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onlyme2013
Posts: 21
Joined: Sun Aug 11, 2013 3:58 pm

by onlyme2013 on Wed Aug 14, 2013 9:48 pm

Re: Activity management

Thanks for the replies.
I think it's helpful to get responses from other parents/sufferers - most who are experts themselves having lived with the illness for so long - I hope that remains the case for the duration of this clinic.

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Dr Caroline Grayson
Posts: 21
Joined: Wed Aug 14, 2013 10:20 am

by Dr Caroline Grayson on Wed Aug 14, 2013 11:07 pm

Re: Activity management

In terms of managing activity it is helpful to look at "baseline" activity levels and then set a base line level to achieve every day and once this is established then this can be increased by 10-15% after 2 weeks of managing consistently.
It sounds like aiming to increase activity at weekly intervals is too fast.
Have you looked at activity diaries which looks at sleep patterns and high and low energy activities? I find this a helpful approach as a starting point?
Caroline Grayson
Dr Caroline Grayson
Consultant Paediatrician

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