Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME)

Discussion in 'Latest ME/CFS Research' started by Cheesus, Jun 4, 2017.

  1. Cheesus

    Cheesus Senior Member

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    Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England

    Jessica Broughton, Sarah Harris, Lucy Beasant, Esther Crawley and Simon M Collin

    Abstract
    Background

    Few studies have explored patients’ experiences of treatment for CFS/ME.

    This study aims to fill this gap by capturing the perspective of patients who have been treated by NHS specialist CFS/ME services in England.

    Methods
    Semi-structured interviews were conducted during the period June–September 2014 with 16 adults who were completing treatment at one of three outpatient NHS specialist CFS/ME services.

    Interviews were analysed thematically using constant comparison techniques, with particular attention paid to contrasting views.

    Results
    Three themes were identified: ‘Journey to specialist services’; ‘Things that help or hinder treatment’; and ‘Support systems’. Within these themes nine sub-themes were identified.

    A wide range of factors was evident in forming participants’ experiences, including personal characteristics such as perseverance and optimism, and service factors such as flexibility and positive, supportive relationships with clinicians.

    Participants described how specialist services played a unique role, which was related to the contested nature of the condition.

    Many participants had experienced a lack of validation and medical and social support before attending a specialist service.

    Patients’ experiences of life before referral, and the concerns that they expressed about being discharged, highlighted the hardship and obstacles which people living with CFS/ME continue to experience in our society.

    Conclusions
    The experiences of CFS/ME patients in our study showed that NHS specialist CFS/ME services played a vital role in patients’ journeys towards an improved quality of life.

    This improvement came about through a process which included validation of patients’ experiences, acceptance of change, practical advice and support, and therapeutic outcomes.

    https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2337-6
     
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  2. Large Donner

    Large Donner Senior Member

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    8 out of 10 owners said their cats preferred it!!

     
    Last edited: Jun 4, 2017
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  3. Barry53

    Barry53 Senior Member

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    Not read any further yet, but why do I get the feeling it is going to be full of conflations, misdirections, mislabelling, misleading by omission, emotive-language-over-good-science, etc, etc.
     
  4. trishrhymes

    trishrhymes Senior Member

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    I notice the interviews were done when patients were still in treatment. So highly biased by loyalty to kind therapists and hope that the treatment might work. I'd much rather they did them a year later. Then we might get some useful insights.

    I shall not read the full paper. Can't face it.
     
  5. A.B.

    A.B. Senior Member

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    Mistreated patients had good things to say about a person that said a few kind words to them.
     
  6. boombachi

    boombachi Senior Member

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    We did not seek to explore patients’ experiences of specific treatments or components of treatment programmes such as CBT and GET.

    It seemed mostly focussed on patients feeling validated and emotional support to accept being chronically ill rather than improving functionality.

    The other principal limitation of our study is that we recruited patients who had reached the end of treatment. This means that the positive experiences that we have reported could be considered to represent ‘success stories’. We do not have figures for drop-out rates, which might reflect dissatisfaction with services and/or competing health issues. We would propose interviews with patients who do not complete treatment as an important area for future qualitative research. Our findings are susceptible to selection bias if patients were motivated to participate by a sense of gratitude and an altruistic desire to ‘give back’ to the clinic after a positive experience.

    Good point!

    The study seems to pick out what patients value about specialist services. I.e. understanding of the condition, validation, empathy. It makes the point at the end that these are all things that should be reasonably expected in primary care but are lacking due to current attitudes.

    I only read the results and discussion. I think they were realistic about the limitations of the study. Best evidence I have seen yet for redirecting the resources for these clinics into GP training. If GPs could validate and be empathic and a practice nurse give information and advice like they do other chronic conditions that would serve the same purpose as far as I am concerned.

     
  7. Dolphin

    Dolphin Senior Member

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    https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2337-6/open-peer-review
    Previously with open peer review, you got to see the authors' responses. Now you have to request them. If anyone gets them, I would be interested in seeing a copy. If you are refused access, I would be interested in hearing about that also.
     
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  8. Esther12

    Esther12 Senior Member

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    What a weird and worthless study. And Action for ME funded it.

    Great work.

    I'm rather less than clear what this paragraph means, anyone else know?

    I don't think that's right. Sounds like they'd finished treatment. [edit: Just seen that @boombachi quoted the same section above].

     
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  9. Cheesus

    Cheesus Senior Member

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    I think the goal attainment approach is where you set small goals for yourself to work towards. So, when patients are working towards small goals (presumably worked out with the therapist) and services are paying attention to ensuring that patients can travel to appointments, etc, patients are more likely to report a more favourable experience of the service.

    I'm not 100% sure what the last sentence means or why they included it in that paragraph, though it is quite remarkable that accepting patients' accounts of their own illness as legitimate is considered an alternative approach to therapy. Surely that should be the default approach to therapy.

    The more I look at that last sentence the more certain I am that it doesn't make any sense.
     
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  10. Hutan

    Hutan Senior Member

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    So, yes, they asked if people would participate as they were finishing.

    16 patients who, as the study acknowledges, made it through to the end of the programme.

    Subtext - stop giving these people expensive tests that just frighten them. All they need is a kind therapist...


    Subtext - those people who dropped out have personality problems

    There seems to be quite a change in message now - treatment isn't going to cure you. It's all about acceptance.




    Yes, @Esther12 , I agree, this was an interesting paragraph (below). My impression is that participants liked having a therapist and each other to talk to but didn't think much of GET and CBT. I think the authors seem to be saying 'more GET and CBT'. The reference they give to support that idea isn't PACE it seems, it's this:

    Query M, Taylor RR. Linkages between goal attainment and quality of life for individuals with chronic fatigue syndrome. Occup Ther Health Care. 2006;19(4):3–22. (I haven't seen it).

     
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  11. Esther12

    Esther12 Senior Member

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    @Cheesus Thanks. I also wondered if by 'more challenging' they meant 'unpopular'. They never seem to detail any problems the patients had with these services... other than that there wasn't enough of them!
     
  12. Large Donner

    Large Donner Senior Member

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    Oh boy!!
     
  13. trishrhymes

    trishrhymes Senior Member

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    If you want to know what patients think of a treatment, don't just ask the ones who got as far as attending the final session. Ask everyone who started the treatment, and wait at least 6 months for reality to outweigh good feelings about the therapist.

    Worthless.
     
  14. Skippa

    Skippa Senior Member

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    This is really interesting, I was in attendance in 2015 not 2014 but we got asked these questions and filled in forms about our experiences about 1 or 2 sessions before the final.

    And what I wrote did NOT reflect my opinions after the final session when I realised there was no help or treatment coming whatsoever.

    I say this because one of those patient quotes quoted by @Hutan above looks EXACTLY like something I wrote.
     
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  15. ash0787

    ash0787 Senior Member

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    my doctor wasn't aware of any of those specialists, not specific to the disease at least,
    but I didn't pursue it anyway, thought it would be a waste of energy and hospital resources
     
  16. Luther Blissett

    Luther Blissett Senior Member

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    You can always find out by making a subject access request to see.

    https://ico.org.uk/for-organisation...on/principle-6-rights/subject-access-request/
     
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  17. RogerBlack

    RogerBlack Senior Member

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    Indeed - trial participants can get all of their data, as there is no identity concern.

    This would be rather interesting.
     
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  18. A.B.

    A.B. Senior Member

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    Haha no, you failed to control for bias and include no long term data. It's junk. Action for ME wasted scarce resources, demonstrating once again that it cannot be trusted to make decisions about research.
     
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  19. Cheesus

    Cheesus Senior Member

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    I assumed they meant difficult rather than unpopular, but you could be right.
     
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  20. Skippa

    Skippa Senior Member

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    Also, I feel this is very important:

    Above it says it doesn't account for those who dropped out.

    Regardless if my comment was or wasn't included in their write-up, I can tell you one thing:

    THE DROP OUT RATE WAS HUGE. THERE WAS ONLY A 50% ATTENDANCE at the final session. I am picturing their faces now, some cool people I met, noone was fooled, I wish I knew how they were getting on now.
     
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