Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Report on 2016 BACME conference

Discussion in 'General ME/CFS Discussion' started by Esther12, Jan 22, 2017.

  1. Esther12

    Esther12 Senior Member

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    Written by an OT, Caroline Clifton.

    https://www.cot.co.uk/sites/default/files/regional-groups/public/BACME-conference-2016.docx.

    British Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) Conference 2016:

    I was lucky enough to be awarded a Lifelong Learning (LLE) grant to attend this Conference by the South West Region of the College of Occupational Therapy.

    The 2 day Conference is organised by British Association for CFS/ME (BACME) the organisation for health professionals working with people with CFS/ME in conjunction with The Association of Young People with ME (AYME) a charity for young people with CFS/ME. The Conference was very rich with information from a wide range of presenters, poster presentations, workshops and an opportunity to network with professionals working in CFS/ME services from all over the country. I will give an overview of the 2 days however due to the vast amount of information and topics covered I will focus on the most important areas for my own practice and the main highlights.

    The day began with a presentation from Professor Peter White, Professor of Psychological Medicine. He described a research trial called GETSET (Graded Exercise Therapy SELf help Treatment) which looked at the effectiveness and safety of a self-help graded exercise programme. The results showed that GETSET self-help was moderately effective at improving fatigue but less effective at improving physical functioning. It was concluded that self-help GETSET is as safe as doing nothing as long there is guidance from a therapist. Therapist support was very important as patients described GETSET as challenging, difficult to maintain motivation with and the manifestation of improvement was slow, particularly in the beginning. This presentation raised the question as to whether this could be an acceptable therapeutic approach to offer in the current climate of stretched resources and limited time, as GETSET guidelines from the pacing, graded activity, and Cognitive Behaviour Therapy (CBT): a randomised Evaluation (PACE) trial, offered 15 sessions with a therapist. The PACE trial was a large scale treatment trial which compared the effectiveness of four main treatments: adaptive pacing, CBT, graded exercise and standardised specialist medical care, following which graded exercise and CBT were found to be safe and effective treatments for CFS/ME in adults.

    Another interesting presentation was delivered by Dr Hans Koop, Clinical Psychologist from the Netherlands about recent developments in CBT. The concept of recovery was raised alongside definitions such as ‘doing what you want, but not as before’, ‘no longer severely affected,’ ‘able to work and study and reach personal goals.’ The subject of recovery and what we mean when using this term came up later in our informal discussions. How confident the therapist is with using this term was noted as an important contributory factor towards patients believing they can move forward. The research from the Netherlands concluded that CBT remains safe and is better than doing nothing at all. We heard about research comparing treatment protocols for CBT between the UK and the Netherlands with the Netherlands achieving more positive results. The differences that I noted were that the Dutch approach was more prescriptive and structured in relation to physical activity whereas graded activity was negotiated with the patient in the UK. Full recovery as opposed to improvement was the treatment goal and the Dutch approach was strict in limiting the focus on fatigue and promoting diversion of attention away from fatigue. The advantages of web based CBT were put forward as being time efficient, safe and effective.

    One of the most memorable presentations was by 2 people who had been severely affected by CFS/ME. Both talked about the importance of having hope and being able to hold on to this idea from the beginning of their illness. Important factors in recovery included setting an activity baseline and planning small, realistic goals, gradual increases in activity and exercise, creating distraction from illness and the use of other therapies such as counselling, hypnotherapy, meditation and yoga. Both talked about the importance of health professionals accepting the methods they chose to manage their illness and recognised that taking personal responsibility for their own health condition was a crucial factor in making positive change. The speed of change was very slow for both patients, however, both have re-prioritised their lives with some incredible results. The talks left me thinking about how to carefully engender optimism in the patients we see with severe CFS/ME. There is very little evidence for treatment for people with severe CFS/ME so the recently produced shared clinical practice document for severely affected will be very helpful.

    Professor Esther Crawley, Professor of Child Health, talked about her development of a patient reported outcome measure which had input from children with CFS/ME and their parents. She also spoke about the Magenta Trial which looked into graded exercise provision as a treatment for children. Although the National Institute for Health and Care Excellence (NICE) recommends this, there has been no evidence for GETSET up until now. After 1 year she reported very positive results from the trial with excellent recruitment, good retention and follow up with evidence of no harm and that, anecdotally, children and parents liked GET. She also explained a new Fatigue In Teenagers on the interNET (FITNET) trial for 11-17 years olds which she is recruiting into which will be a web based treatment comparing FITNET modules with activity management via Skype. This could produce some very exciting and encouraging results and there has already been media coverage about this.

    Day 2 was very relevant to me as I am planning to develop the vocational rehabilitation provision on a small scale within the Somerset CFS/ME service. Dr Andrew Frank, Visiting Professor – Brunel University (Vocational Rehabilitation Association), talked about the importance of work on health and wellbeing. He talked about work not as an end product of recovery but as part of the process. He underlined important principles of vocational rehabilitation for people with CFS/ME.

    I also attended a workshop on vocational rehabilitation which encouraged us to look at issues we commonly come across when talking about work with patients. A very useful exercise focused on the pros and cons of disclosure of CFS/ME at work. A refresher of the relevant components of the Equality Act and reasonable adjustments was welcome. The information informed the content of a work group I plan to run in my service and gave me fresh ideas about how to provide some of the information.

    The Conference was a very positive and inspiring experience and I shall be able to continue to practice with confidence so that the NICE guidelines and the results of the PACE trial remain valid references for my treatment approach.

    Author - Caroline Clifton - Senior Occupational Therapist/band 6 and qualification DipCot
     
    Last edited: Jan 23, 2017
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  2. daisybell

    daisybell Senior Member

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    Can't like this....
    Still peddling their religion in a bubble.... and still able to influence health practitioners :bang-head:
     
  3. lafarfelue

    lafarfelue Senior Member

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    Thanks for posting this run down from C Clifton, that's interesting to read.

    This is the stuff I'm most interested in at the moment (on a personal level). My workplace is outwardly supportive of diversity etc, but has been internally/personally a bit obstructive and definitely not holistic in its approach to dealing with me and my situation. I'm pushing my workplace to adopt a better approach, to hopefully help others that are and will be dealing with it in future. It's been hard work. I'm relying on non-CFS precedents and parts of Australian/state legislation which doesn't really give much context for CFS consideration and rehabilitation... and they refuse to take a GP's advice point blank, so I was at a bit of an impasse for around 2 months.

    Anyway, point of that babbling was that I hope that more health providers start to focus on the work rehabilitation aspect specific to those with CFS (irrespective of PACE trials outcome etc).
     
  4. Snow Leopard

    Snow Leopard Hibernating

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    They sound like true disciples of doublespeak.
     
  5. Kati

    Kati Patient in training

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    @Esther12 thanks for this report. AT first I thought you were the one reporting. You may want to make this clearer. Do you know what month in 2016 this conference happened?

    The report seemed one sided, pro CBT GET and vocational rehab. Unfortuately for most patients, rehab is not posssible and oftentime harmful. It affects so many body systems (cognitive, muscular, energetic, autonomic, to name a few) that any occupation is not possible. If your cognitive capability is challenged, how can you add and substract, concentrate enough to teach, give the right and not lethal drug dosage to a patient, or work a cash register? If your muscles can't carry you, and so on?

    The report does not focus on biological findings and research, and I am wondering if these voices were represented at the meeting?
     
    Last edited: Jan 23, 2017
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  6. Kati

    Kati Patient in training

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    These days we call it 'alternative facts' :mad:
     
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  7. Snow Leopard

    Snow Leopard Hibernating

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    Andrew Frank seems to believe that getting back into the workplace improves health outcomes "He talked about work not as an end product of recovery but as part of the process".

    This review article he wrote seems mostly reasonable, if not a bit optimistic. But perhaps less relevant for many PwME who have more severe disability.

    http://www.mdpi.com/2227-9032/4/3/46/pdf

    Also, as notable counterpoint...
    "Disabled people and professionals differ in their perceptions of rehabilitation needs." Kersten et al.
    https://www.ncbi.nlm.nih.gov/pubmed/11077915
     
    Last edited: Jan 23, 2017
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  8. Kati

    Kati Patient in training

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    I do not disagree that people 'need' to work, not only for financial reasons, but also for personal reasons such as achievement, belonging somewhere, perhaps being part of a team, and also being useful to others. I miss all of this.

    However without treatment which will improve cognition, PEM, and POTS, there is no way I can work and no rehabilitation program will make these better. I am hoping that appropriate treatments for our pathology will make it possible to return to a productive life, whatever that means for each one of us.

    Focusing on rehab is missing the boat completely.

    Anyways... preaching to the choir, I am sure.
     
    Last edited: Jan 23, 2017
  9. trishrhymes

    trishrhymes Senior Member

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    @Esther12 you might want to edit your long quote to make it clear from the start that this is a quote from someone else, not you speaking. I read it with increasing incredulity when I thought it was you! It's pure uncritical psychobabble from someone who has accepted at face value all the claims of PACE, Crawley etc.

    It is horrifying but not surprising that such an organisation can exist and run conferences that purely reinforce bad research, and don't provide any reference to contradictory biomedical evidence. Dangerous nonsense.

    Have none of them enough curiosity to look wider at ME research around the world?
     
  10. justy

    justy Senior Member

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    Brilliant!
    In our household we now call everything we believe, even if its not true, 'alternative facts'. Its going to catch on.
     
  11. sarah darwins

    sarah darwins I told you I was ill

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    "vocational rehabilitation" - ah, music to every politician's ears. Work as a cure for people too sick to work.

    Are we in Narnia yet, mummy?
     
  12. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    https://www.elft.nhs.uk/service/308/Chronic-Fatique-Service/

    "The Chronic Fatigue Service based at St Leonard’s Hospital in Hackney is one of the largest such services in the UK. Formerly based at St Bartholomew’s Hospital, the Chronic Fatigue Service is provided jointly by East London Foundation Trust and Barts Health NHS Trust...

    (...)

    "What outcomes can I expect from the Service?

    "We have found that approximately three-quarters of our patients with Chronic Fatigue significantly improve or recover with treatment in our clinic. Research has suggested that a quarter recover and half significantly improve. For some people, recovery may Not mean a return to previous lifestyles, if this contributed to them becoming ill in the first place."
     
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  13. user9876

    user9876 Senior Member

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    I think people who have a remission may go back to work but this then gets confused by therapists who see going back to work as a causal factor rather than a result of a remission.
     
  14. sarah darwins

    sarah darwins I told you I was ill

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    We're also in the realm here of "chronic fatigue" and people diagnosed with the Oxford criteria, not people with ME. Though I doubt the author understands the difference.
     
  15. user9876

    user9876 Senior Member

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    I think ME can fluctuate quite a lot for people and some people do report some sort of remission or perhaps more accurately going from severe/moderate to mild. So I think it does cover ME.
     
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  16. Esther12

    Esther12 Senior Member

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    Good point, edited.

    I don't know when the conference happens. Looks like they're still totally commited to the quackery though.

    I don't think I need to work... I reckon I could manage to spend my time just holidaying on a tropical island somewhere.
     
  17. sarah darwins

    sarah darwins I told you I was ill

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    If you can get funding for a trial on that one, I'm pretty sure I'm eligible and I'm prepared to make the sacrifice in the name of science.
     
  18. Jonathan Edwards

    Jonathan Edwards Senior Member

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    This is a most weird statement. It sounds like;
    'Yes, I am a true daughter of the cultural revolution and always carry the little red book in my hand, even though I heard Chairman Mao died a while ago and the cultural revolution was a disaster.'

    It almost sounds as if she had heard that someone had suggested that PACE was no longer a valid reference; can't think where.
     
  19. trishrhymes

    trishrhymes Senior Member

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    :rofl::rofl::rofl::bang-head:
     
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  20. alex3619

    alex3619 Senior Member

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    Are we next going to hear about "alternative evidence" and "alternative science" as well as "alternative reasoning"? The media should stop using this term, and call it what it is - spin etc.
     

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