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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Evidence that patients are not necessarily happy with CBT & GET/CBT- and GET- based services

Discussion in 'General ME/CFS Discussion' started by Tom Kindlon, Dec 22, 2016.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    I'm working on something for possible to publication.

    I'm looking for some evidence that patients are not necessarily happy with CBT & GET/CBT- and GET- based services. I could quote more than one thing.

    I might need to have it in the next few days though feel free to write later if you don't reply quickly.
     
  2. Tom Kindlon

    Tom Kindlon Senior Member

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    I'm wondering is there anything from Netherlands and/or Belgium where I know there has been some dissent about services that are available.
     
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  3. BurnA

    BurnA Senior Member

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  4. Tom Kindlon

    Tom Kindlon Senior Member

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  5. lansbergen

    lansbergen Senior Member

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    It does and that does not differ from otther countries.
     
  6. Tom Kindlon

    Tom Kindlon Senior Member

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    Can you highlight which bits. Ideally I'd be looking for percentages and sample sizes.
     
  7. Effi

    Effi Senior Member

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    @Tom Kindlon It does literally say that they don't want CBT or GET.

    Under the heading CBT (p.36) it says:
    translation:
    83 (x = 14.87%) of the respondents explicitly mention the desire to abolish CBT as a treatment for ME. Additionally up to 108 (x = 19.35%) of respondents said they want to see things moving away from the psychological approach towards ME.

    Then there's a bunch of quotes (to support these figures) that also mention GET alongside CBT. So I think when they say CBT they actually mean CBT/GET.
     
  8. lansbergen

    lansbergen Senior Member

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    Copy and past does not work.

    It is from page 30 up
     
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  9. lansbergen

    lansbergen Senior Member

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    There is a table what are your wishes?

    b. Wat zijn uw wensen?
     
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  10. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    The best evidence that patients with CFS/ME aren't ''necessarily happy'' isn't hard to find.

    They are deceased.

    If people are dying on an approved therapy that has null effect (PACE) dead people are usually the best piece of evidence that this therapy needs to be stopped immediately on the grounds of safety.
     
  11. Tom Kindlon

    Tom Kindlon Senior Member

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    What evidence do you have about people dying? I'm not sure there is much particularly something that could be quotable in a published article.
     
  12. Esther12

    Esther12 Senior Member

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    I can't think of anything great for this from academic papers. I'm sure you've thought of that ME Association report on CBT/GET from last year: http://www.meassociation.org.uk/2015/05/23959/

    Loads of the academic papers in this 'psychosocial' area are written by those providing CBT/GET, so they often put their own spin on things, even if there are hints that their approach is the problem (talk of illegitimacy, distrust, disbelief). In medical paper there tends to be more general talk of dissatisfaction with medical care.

    There's stuff from patient groups/charities? Again, reporting in medical journal about patient cncern about CBT/GET tends to be written in an 'aren't they foolish' tone.
     
  13. Sean

    Sean Senior Member

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    Not quite what you are looking for, but the fact that the BPS school think that the main problem is just a public relations and marketing issue, and all they need to do is figure out how to package and sell their 'explanations and treatments' to patients, is good evidence that patients are not happy with either.
     
  14. lnester7

    lnester7 Seven

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    Here is my question, we have been doing athletes for a while. So sport medicine is not like it is new or a huge revelation, why is GET done with none of the safe guards made w big athletes, monitor latic acid, monitor Oxigen vs Dioxide Carbon (however the word) ratio, Muscle breaking protein in the blood (to make sure there is no muscle hurt), metabolites.....

    I mean if anybody wanted to do exercise the right way, it is not like we don't have the tests and technology (if we hook up the patient and monitor afterwards).

    I was with a cfs exercise expert, she took me off the bike before I even tired and said you need to stop because you are already over and no oxygen is getting into you (I forgot the technical words but you get my drift).
     
  15. Kati

    Kati Patient in training

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    Hi @Tom Kindlon, it's an interesting question, because the 'evidence' that has been published is pro CBT, CBT/GET and GET, so my best bet would be you would find the evidence from ME Association polls perhaps, and from patient reports.

    It reminds me of the local program here which is CBT based, and their website only posted positive testimonies about their programs.

    Best of luck. I wish I could help.
     
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  16. Sasha

    Sasha Fine, thank you

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    Pressure from patients has succeeded in moving the Suffolk & Norfolk NHS ME/CFS Unit to a biomed model, away from a BPS one:

    http://forums.phoenixrising.me/inde...folk-nhs-me-cfs-center-goes-biomedical.40268/

    The mover and shaker there is @elliepeabody. I wonder if she has data of the kind you're looking for?

    I agree with Kati that an MEA poll might be a good bet, if they've run one. They've done a wide range of polls over the years.

    You might also consider petitions as a form of evidence that patients aren't happy with CBT and GET (or, specifically, as the quality of the work underlying them).

    There was the 12,000-signature #MEAction petition against misleading analyses in PACE, and the successful attempt by US patients to get the Oxford studies removed from the AHRQ Evidence Review - there are probably some harsh words about CBT/GET in their submission.

    Hope this is useful, @Tom Kindlon. :)
     
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  17. Sasha

    Sasha Fine, thank you

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    There's also the 24 (?) patients' organisations who wrote open letters to QMUL to ask them to release the PACE data rather than go to tribunal. If they were all so thrilled with CBT and GET, it's hard to understand why they would do that.
     
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  18. Sasha

    Sasha Fine, thank you

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    @Tom Kindlon, here's the ME Association's poll archive:

    http://www.meassociation.org.uk/archive-of-mea-surveys/

    The top one there is helpful ("Following the re-analysis of the PACE trial data, should NICE remove its recommendations on CBT and GET?").

    I got as far as page 7 and the only relevant one that far seemed to be a 2011 one: "How will the PACE trial results affect the NHS management of people with ME/CFS?" (The most popular reply was "Make it much worse".)
     
  19. MEMum

    MEMum Senior Member

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    What about @Valentijn . She lives in the Netherlands, and i believe her partner is Dutch.
     
  20. Valentijn

    Valentijn Senior Member

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    Dutch and busy. And I've got a bastard of a flu, so mostly in a daze currently.

    My general recollection is that there was a Belgian study which found their CBT/GET clinics to be utterly useless. No idea if that included patient perceptions.
     
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