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.
Discuss the article on the Forums.

What to say to a Dr. who recommends GET /CBT ?

Discussion in 'ME/CFS Doctors' started by BurnA, Oct 18, 2015.

  1. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,861
    Hi, Just wondering if there is an easy or simple reply to a Doctor who recommends GET /CBT ? Obviously I want to convice them that it is pointless but I would like to know what the best evidence is for this or the best evidence that this is a physical illness. I know there are plenty of papers out there but is there one or two bullet proof papers that my Dr. cant challenge ? His usual reply is, its not replicated or two few patients etc.He acknowledges that some people dont accept the outcome of the PACE trial but these are the NICE guidelines.
    Please Help! Thanks.
     
    panckage likes this.
  2. msf

    msf Senior Member

    Messages:
    3,189
    Likes:
    4,463
    Well, the first word begins with an f, the second with a y.
     
  3. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,647
    Left Coast
    Bye doc. I don't have the energy to convince someone. If they believe it to start I'm not interested.

    Edited. @msf Exactly.
     
    TigerLilea, CantThink, justy and 3 others like this.
  4. msf

    msf Senior Member

    Messages:
    3,189
    Likes:
    4,463
    That´s right: free yourself...free yourself from this antiquated idea of psychosomatic illness.
     
  5. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,861
    I know ...obviously this is what i am thinking but i need a doctor on my side so I would like to try to convince them even though all they have to do is open their eyes.
    I wont achieve anything sitting at home so I can at least try to convince one doctor. If it doesnt work nothing lost. If it doesnt work maybe in two years I can go back and laugh at them :lol:
     
    Hutan likes this.
  6. WoolPippi

    WoolPippi Senior Member

    Messages:
    506
    Likes:
    1,369
    Netherlands
    you cannot convince him, his mind is made up and it's very convenient for him to park PWME in this pigeon hole. Changing his mind would inconvenience him so would be an extra uphill battle for you. You're better off looking for a new doctor.

    if you want to show him something show him your blood reports which are bound to be off. (hormones, B12, homocysteine). But these won't convince him your illness is something broader then these reports.

    Don't fight a windmill. Find a different mill that will work for you.
     
    leela, CantThink, justy and 5 others like this.
  7. adreno

    adreno PR activist

    Messages:
    4,843
    Likes:
    11,020
    Dr. Who recommends GET/CBT??
     
    leela, Valentijn, Hutan and 7 others like this.
  8. WoolPippi

    WoolPippi Senior Member

    Messages:
    506
    Likes:
    1,369
    Netherlands
    You can self-study, get to know your personal case through and through and device a protocol of your own, tailormade for you. You can experiment, trial and error, to find out the particulars of your case.
    case = body
     
  9. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    I'd just ask if they're aware of any evidence that it's more effective than placebo. If they say 'yes', then ask to be able to look in to it.
     
    leela, Valentijn, BurnA and 3 others like this.
  10. panckage

    panckage Senior Member

    Messages:
    630
    Likes:
    744
    Vancouver, BC
    He can challenge anything but I think phase 1 and 2 of the rituximab trials would be the best evidence we have so far. I mean why would a cancer drug help a psychiatric illness?
     
    justy, sillysocks84 and alex3619 like this.
  11. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,437
    South Australia
    Is this a hypothetical, or has a Doctor actually suggested this for you?
     
  12. user9876

    user9876 Senior Member

    Messages:
    2,583
    Likes:
    18,182
  13. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,467
    Likes:
    10,480
    Cornwall, UK
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,228
    Likes:
    31,906
    I think you are taking the right approach of trying to come to some shared position on this with the doctor.

    There are no bullet proof papers. Your doctor can indeed challenge all the stuff out there on the grounds that it is not replicated or too few patients etc.. However wide he opens his eyes there is nothing unequivocal to see. The Norwegian phase 2 rituximab trial is strongly suggestive of an immune mechanism for some cases but it needs confirmation. So I would suggest agreeing with him so far.

    And at least he acknowledges that PACE has its critics. You might be able to persuade him that dissent is a bit stronger than that. The Norfolk and Suffolk health area has recently proposed setting up an ME/CFS service expressly not endorsing the psychological approach and NICE. The arguments against PACE showing a positive outcome can be summarised as:

    1. It was unblinded and the primary outcome was subjective and this means that the trial fails on the most basic requirement for sound methodology.

    2. CBT is designed to alter beliefs towards greater optimism so it is not surprising that patients receiving CBT said they were more optimistic at the end, if only to be kind to their therapists. So this primary endpoint of reporting sense of wellbeing is useless.

    3. In contrast, the objective measures in the trial showed fairly conclusively that CBT and GET produced no clinically useful benefit.

    4. Nobody actually knows what it would be about a CBT session that helped, even if it did, so there is no way to extrapolate from PACE to routine service. Perhaps the most ironic aspect of CBT is that one of the most eminent proponents of this approach voices concern that there are hardly any trained CBT therapists in the NHS - so patients are unlikely to get 'real CBT' if referred for it (maybe even in the PACE trial?). And since we do not know if CBT works we don't actually know what 'real CBT' should be like anyway!!

    The problem is that if you do not want to see a talking therapist then the GP does not have anything else of proven worth to offer so it is hard to blame him for not offering anything else. What I think is a pity is that referral to someone with extensive experience of talking to PWME and trying to help them manage their illness has to be called 'CBT'. A number of people on PR say that they have been grateful for the help of such people - even if they were helpful as people rather than as 'therapists'. If I were a GP in this situation I would feel the best thing to do was probably to find someone who has been talking to PWME for years who seems sensible and ask them to help. I have a suspicion that that is more likely to be a physician with a special interest than a 'trained therapist' but I simply do not know.
     
  15. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,861
    My bloods are normal, seems like I have pure simple basic ME.I do have POTs though which I showed him a video that I made at home. My pulse clearly rises from about 65 to >110 from lying to standing. He wants me to see a cardio... i dont see the point.

    Yes I know. An immunologist.

    Nice one - i'll try this.

    I have shown him these but he said the studies were too small for any conclusion to be made. I pointed out that its impossible to fool a double blind placebo controlled trial and he said it is !! He said with small numbers you can get skewed results or something like that. He then started talking about XMRV.... why i dont know but as if to prove a point.

    He is an immunologist and yes he has recommended GET. He said " its the only proven treatment"
     
  16. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,437
    South Australia
    Ask him, does he think unblinded clinical trials are reliable, and why/why not?

    Tell him, you know of a treatment that has demonstrated 'positive results' in an unblinded randomised trial, only the objective measures of activity (actigraphy, exercise capacity) did not change. Ask him, does he think this is high quality evidence?
     
    Last edited: Oct 18, 2015
    Sasha and BurnA like this.
  17. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,189
    UK
    I agree that GPs are provided with nothing much else to offer according to NICE but if you think you may have symptoms of orthostatic intolerance (very common in ME/CFS) then it's worth asking for referral to a syncope unit to get a tilt-table test. Orthostatic intolerance is treatable, to a degree (and OI treatment has been transformative for some people on this forum, even if it doesn't fix all their ME symptoms).
     
    ahimsa and sillysocks84 like this.
  18. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,189
    UK
    Oops... crossed.

    I asked for a suitable referral from my GP in relation to OI and was referred to a cardio, who ignored all the criteria in the literature ("It's not that simple") and told me to stop looking at the internet. After seeing four consultants, I've finally got my diagnosis, from the second person I saw at the syncope unit (same results, different interpretations).

    This area is clinical chaos, but if you can get a diagnosis you have chance of treatment. Cardios (those who don't specialise in this area) seem poorly thought of by many patients in terms of diagnosing orthostatic intolerance. If you can, get to a syncope unit.

    This list may help you find a syncope unit. My GP didn't have a clue that my local one existed and I hadn't found it despite a direct search.

    Total crapshoot. o_O
     
  19. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,189
    UK
    I completely misunderstood this. I thought you were making some sort of TV sci-fi joke that I was just too stupid to get, because as far as I was aware, Dr Who has never expressed an opinion on the matter. :oops:
     
  20. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,861
    Thanks Sasha - yes i could try to treat the OI which should be my next step. I am not sure how treatable it is in general but I'll try anything as long as its based on some form of science !
     
    Sasha likes this.

See more popular forum discussions.

Share This Page