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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Request for NOD-DERS: Could your data be part of the NOD (National Outcomes Database of UK ME/CFS

Discussion in 'General ME/CFS News' started by lilpink, Aug 31, 2017.

  1. lilpink

    lilpink Senior Member

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    Request for NOD-DERS: Could your data be part of the NOD (National Outcomes Database of UK ME/CFS patients set up by Esther Crawley)? How would you know?


    If you know you contributed to the NOD database when you attended a UK ME/CFS service, or if you think you may have done, any information about what you were asked to do and/or what you were told about the NOD, either by the service staff in person at the clinics or in letters to you at the time, would be most useful to a current line of enquiry. (Either post here or contact me via back channel message.)

    NB Any memories of this, no matter how apparently trivial or incomplete, may be useful.


    How would you know if you were part of the NOD?

    NB You may not have been told that your data was being used in this way


    · You would have been asked to fill in numerous questionnaires either sent in the post before your first appointment to take with you to that appointment, or given to you to complete at the first appointment. You may have also been asked to fill in these questionnaires (plus possibly additional ones) again a year later. These may have been sent out in the post to you or given out at the clinic.


    · The questionnaires would probably have included a Hospital Anxiety and Depression Score (HADS), a ‘Self-Efficacy Scale’, a ‘Visual Analogue Pain Rating Scale’, a ‘Chalder Fatigue Questionnaire’ and a ‘MOS(SF-36)’. Forms at the year 1 mark would likely have included those already listed, but also may have included an ‘Occupation’ questionnaire about paid or voluntary employment, and a ‘Clinical Global Impressions Scale’ about how much better or worse you felt after treatment. The forms would have been A4 size on white paper with a patient ID number/code at the top which included your initials and part of your postcode (although this may not have been filled in on every form).


    · You may have been attending one of these services:


    see list here - supplementary material [​IMG]
    or here: http://bmjopen.bmj.com/content/bmjo...n-2015-008830.DC1/bmjopen-2015-008830supp.pdf (Apols, I can't embed this link)

    (taken from http://bmjopen.bmj.com/content/5/10/e008830.info )


    although this list may not be comprehensive


    • Children's questionnaires would have varied somewhat from those listed above, but data collections would have been made at or before assessment and at one year and possibly also at other intervals.
     
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  2. Mrs Sowester

    Mrs Sowester Senior Member

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    I did in 2013-14, Cornwall. Filled in reams of those things.
    How can I help?
    ETA - I was not told how they'd be used other than to 'see how well I was doing'. I guessed they'd be used in some sort of National data collection thing though.
     
  3. RogerBlack

    RogerBlack Senior Member

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    In principle, individuals involved can get the complete data held about them.
     
  4. lilpink

    lilpink Senior Member

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    Thanks .. I'll PM you :)
     
  5. Mrs Sowester

    Mrs Sowester Senior Member

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    I found a NOD discharge form in my files!
    I can't be the only UK person to have been to a ME clinic here since 2011. I think many of us will have filled out NOD forms. If it would be helpful to add anything you remember or message @lilpink
    If you did but can't remember maybe this will help jog your memory:

    nod1.jpg
     
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  6. lilpink

    lilpink Senior Member

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    That's very useful @Mrs Sowester . I also find it very odd that we seem to know so few (out of 10,000) people who have been part of the NOD. It does make you wonder if they ever knew they were part of it at all doesn't it?
     
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  7. elliepeabody

    elliepeabody

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    Yes I was asked to complete these forms back in 2015 although I had no idea they were part of NOD or that the data would be shared further. Funnily enough I only found out they were part of NOD a week or so ago....it came up as a response to queries sent to the service about something else. What further info did you want @lilpink ? Feel free to contact me back-channel.
     
  8. lilpink

    lilpink Senior Member

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    I'll do that. Thanks.
     
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  9. Mrs Sowester

    Mrs Sowester Senior Member

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    This is a good morning thread bump - BUMP!
    Any more NOD-ders remember this pain scale rating?
    NOD2.jpg
     
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  10. lilpink

    lilpink Senior Member

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    Still fascinated by the lack of people who have been part of the NOD (or PACE come to that). Given many of us have been active advocates for years and therefore have an extremely wide and overlapping pool of friends and acquaintances who have ME, that I am now only aware of about 3 people who took part in the NOD (out of 10,000 adults) and have heard (don't personally know them) of only one person who was part of PACE it does continue to beg those questions of: where are these people?; did they know they were part of a trial or service evaluation?; perhaps none of them had authentic ME in the first place so haven't gravitated to the usual haunts of people trying to grapple with a severe neuro-immune disease which is being resolutely ignored by the UK Establishment?

    Very odd isn't it?
     
  11. Mrs Sowester

    Mrs Sowester Senior Member

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    Definitely odd, @lilpink.
    Are people worried about coming forward I wonder? If anyone's worried or feels disloyal there's no need to be, this isn't about the regional clinics, more the advice given to them by the Crawley team.

    Maybe you are right lilpink and many people with 'classic' ME just didn't make it to the clinics?
    There were a lot of barriers to get seen at the clinic; there was a waiting list of almost a year, then the OT came to my home and I needed her to refer me to the hospital service.
    Now I think about it I was only just able to get into the clinic when I was more middle range moderate. They were run in the mornings (my worst time) and many of them were over an hours drive away. If Mr S wasn't self employed and available to take me I couldn't have got there without patient transport. I often crashed in the waiting room and by the time I got into my consultation I was a wreck. I had a lot of payback after appointments.
    I remember having read up a little before asking for a referral and thinking the clinic would probably be a waste of time but I did need a definite diagnosis for peace of mind, so I pushed to get seen. They were helpful though, I'm glad I saw them. If I wasn't so stubborn maybe I'd have given up after the OT visits to my home and wouldn't remember filling in the NODs...
     
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  12. Stukindawski

    Stukindawski

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    Pretty sure I was pre 2011 by some margin, but if I can help, I know at least filled out a HADS (aka, the "take your physical symptoms and turns them into a mental health problem" form)
     
  13. JohnM

    JohnM

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    @lilpink
    I can recall my GP was required to undertake basic blood tests, and a questionnaire (or two?) as part of the referral process to my local ME/CFS clinic, but do not know if results and questionnaire(s) were also included as part of my referral.

    Unfortunately, the vast majority of my medical records pre-2011 were lost due to a clerical error on the part of my previous surgery .. scanned paper-based records 4 to a page, such that the records were illegible, grrrrrr! I only mention, as to question whether GP records could also be included/transposed onto relevant questionnaires as part of input to NOD? Likely, I'm wrong, but wouldn't put anything past these folks of late.

    I only attended the clinic 3 times, before I informed them of my wish to withdraw from their service, so also think it unlikely that I would be on NOD, but am likely to put in a SAR (Subject Access Request) to the clinic regardless, as something been on my TODO list for a few months now. :)

    Wishing everyone improved health and every happiness. John
     
  14. lilpink

    lilpink Senior Member

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    It would be helpful to know if you were told the questionnaires were for the NOD and which ME/CFS clinic you attended. Also approximately when, if you don't mind saying, and if the questionnaires were posted to you to complete at home. You can contact me back-channel if you don't want to give details here.
     
  15. lilpink

    lilpink Senior Member

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    Most people who took part in the NOD would have filled in several questionnaires, either sent out to them before their first appointment, or possibly filled in when they went to the clinic. This initial batch would have included a HADs questionnaire and likely others, such as the Chalder Fatigue Questionnaire and Visual Analogue Pain Rating Scale (as Mrs Sowester showed above) , Self-Efficacy scale, and a MOS (SF-36) form.

    I see that you are from West Yorkshire. If you went to a clinic in that area we know from this study http://bmjopen.bmj.com/content/5/10/e008830.info - see Data Supplement - Data supplement 1 that the Leeds & West Yorkshire CFS/ME Service (run by the Leeds & York Partnership NHS Foundation Trust) was contributing to the NOD.

    I don't think that GP records would have been transposed onto the NOD, but the clinic should have a copy of the referral letter from your GP, together with test results and information that were sent by your GP, and they should also have information relating to the NOD, if you took part in it.

    I hope you get some clarity from your SAR; any information it yields about the NOD that you're happy to share here or back-channel would be gratefully received!
     
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  16. JohnM

    JohnM

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    Will do via back-channel most likely .. :)
     
  17. Mrs Sowester

    Mrs Sowester Senior Member

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    Here's the list from my NOD discharge form:

    1 of 10 - Chalder Fatigue Scale questionnaire

    2 of 10 - Visual Analogue Pain Rating Scale

    3 of 10 - HADS

    4 of 10 - Self Efficacy Scale

    5 of 10 - SF-36

    6 of 10 -EQ-5D tm

    7 of 10 - Epworth Sleepiness Scale

    8 of 10 - Occupation

    9 of 10 - Statutory Sick Pay or Benefits

    10 of 10 - Clinical Global Impressions Scale

    I believe the earlier NODs had only the first 7, but I may be wrong

    Edit at 11.14am 13.09.17 A few of these are under copyright so I wont be able to post pages 3, 5, 6 or 7
     
    Last edited: Sep 13, 2017
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  18. lilpink

    lilpink Senior Member

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    Thank you Mrs Sowester. It's a useful memory nudge for people to see facsimiles of the questionnaires they would have filled in as part of the NOD.
     
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  19. lilpink

    lilpink Senior Member

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    It appears that there were lots of NOD forms - quite a burden on patients filling them in, especially at home. You wouldn't have thought that could count as service evaluation, would you?

    see -

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC549663/ - Wade D. Ethics, audit, and research: all shades of grey. BMJ. 2005 Feb 26;330(7489):468–471. doi: 10.1136/bmj.330.7489.468.


    - under - "What factors influence need for ethical review?" - for what constitutes a burden on patients

    You'd have thought the NOD questionnaires would have required ethical review since it must have taken ME/CFS patients a considerable time to fill in all these questionnaires at home as well as getting to the nearest post box on probably two occasions (and even buying a stamp in some cases!) to post them back to their clinics.
     
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  20. lilpink

    lilpink Senior Member

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    Look forward to the info you might be able to add to this. Thankyou. :thumbsup:
     
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