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

[Sasha]

@BurnA, this post of @Jonathan Edwards is excellent and if I were you, I'd print it off and take it to show your GP. Doctors probably won't take a patient's word for what's wrong with PACE seriously but coming from someone of JE's stature, they will.

 

[BurnA]

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.

LOL - just noticed this now - I can see how misleading it might have been ! You made me laugh

 

[Sasha]

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 !

It's supposed to be highly treatable in the young, less so as you get older (bugger!).

 

[maryb]

I think the chances of getting a talking therapist with vast experience of working with PWME is virtually nil. Several years ago the NHS were offering free courses in CBT training for anyone remotely qualified in the NHS,, so convinced were they that they could shove chronic illness like ME in that direction. Without a doubt these practitioners will be toeing the CBT/GET line. Sorry my advice is change GPs, don't waste your time and precious effort.

 

[BurnA]

@BurnA, this post of @Jonathan Edwards is excellent and if I were you, I'd print it off and take it to show your GP. Doctors probably won't take a patient's word for what's wrong with PACE seriously but coming from someone of JE's stature, they will.

I think the chances of getting a talking therapist with vast experience of working with PWME is virtually nil. Several years ago the NHS were offering free courses in CBT training for anyone remotely qualified in the NHS,, so convinced were they that they could shove chronic illness like ME in that direction. Without a doubt these practitioners will be toeing the CBT/GET line. Sorry my advice is change GPs, don't waste your time and precious effort.

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.

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.

Thanks for all the replies.
I realise there is nothing he can do but the fact is he is an immunologist not a GP, I would have at least expected him NOT to recommend GET/CBT. Sometimes it would be nice if a doctor just said it like it was " there is no treatment and CBT/GET is useless if not harmful but if you want to talk to someone about your illness and coping then it might be worthwhile talking to someone with experience of ME." That would be fine, i would have respect for him and indeed makes sense.
The fact is he actually believes the CBT/GET is a form of treatment " the only evidence based therapy" which is the bit I am struggling with. This was after I gave him all of Fluge and Mellas papers. ( which he wasnt aware of ) I get the impression he thinks I am being awkward by not agreeing with him. He wants me to " at least consider it"

My goal is not to find a treatment ( I know what the situation is ) I really just want him to open his eyes and see the evidence for himself. If i can change his mind then who knows he might be able to change the minds of other doctors. These doctors may then speak up the next time the media report that we are all lazy and afraid of exercise. Who knows. This for me would be a genuine success and I am happy to spend time on this endeavour if i think it might yield results. I am taking a long term view here, i hope in two years this might be unnecessary but at least for now it might be worthwhile.
Thanks again.

 

[user9876]

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.

I think there is some basic stuff that a GP can do such as look at any necessary pain medication or other medication to help with symptoms (I think some people take stuff to help with sleep). Occupational therapists can look at equipment and advice that could make performing tasks around the house or look at mobility aids.

 

[Jonathan Edwards]

@user9876 Indeed, there are practical things to provide.

@BurnA
Tell him from me that CBT is not " the only evidence based therapy" or even "evidence based therapy". From one immunologist to another I would say please do not accept evidence of a sort no immunologist would take seriously in their own field.

 

[SilverbladeTE]

Hey Dr Who doesn't work for Davros!!

 

[Jonathan Edwards]

Dr Who has never expressed an opinion on the matter.

Maybe but after the next episode it may be found that he is going to have expressed an opinion on the matter, when he travels back to the 2013 International Psychology Society Annual Conference and expressed it. Except ...?

 

[TiredSam]

If you want to have a go at trying to convince him then fine, go ahead. If he remains unresponsive to rational debate on the matter then think about changing your doctor, even though you don't need one now, you might in the future, and you won't want to have to start looking for one who's on your side when you need one.

I wasn't prepared to have a doctor who didn't take my symptoms seriously so I left my first one (he diagnosed psychosomatic / burnout within 5 minutes) and got lucky with my second one. If the second one hadn't been any good I would have left him and either tried again with a 3rd one or given up on the health service and managed it myself as best I could. My second Dr came in very handy months later when I needed his referral to an immunological clinic, so I'm glad I changed.

 

[alex3619]

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.

Point out that a similar argument applies to PACE. Gold standard? No. Not placebo controlled, not double blinded. No useful objective outcomes. Small effect sizes well within the expected bias range.

In fact it uses a generally recognized and highly deceptive methodology. Instead of a placebo it has a comparison arm. This particular comparison arm was specifically chosen to appear typical, but is unlike any treatment used in the real world. I refer to adaptive pacing, a treatment specifically invented for the PACE trial and used nowhere else. This is the equivalent of big pharma using a comparison drug where its the wrong drug, or the wrong protocol, and is a known way to create a deceptive comparison. If this was a paper for a drug it is likely it would be discredited. Somehow such research is acceptable in psychiatry?

As the doctor/s if they practice evidence based medicine, or evidence based practice. No, they are not the same. Ask them why RCTs are evidence rank one in most EBM schemes. Point out its about reducing bias. Point out that EBM has secondary provisions for adjusting for bias. Point out that a failure in controlling bias reduces the evidence rank. Point out that CBT/GET has a poor outcome, with low effect sizes. Its not double blinded. Its not placebo controlled. It uses an invalid comparison arm. It has irrational mathematical and statistical methods (see the PACE thread). Its entirely a subjective outcome for a psychotherapy intervention. Three independent government reports (Holland and Belgium) show it is not effective in the real world and can actually degrade patient health, shown using real world outcomes.

 

[Sea]

Another angle to cover as well is the broad criteria used for PACE. Even if a doctor believes the PACE trial showed effective treatment, you have to ask - effective for what? Show him how they were not even studying what you have.

 

[SOC]

I doubt you're having a logical discussion about science here, so trying to convince him with scientific arguments is futile. Giving the guy the benefit of the doubt, he has been trained to think he's supposed to help you and he wants to However, the system has tied his hands. He can fight the system, cause himself a lot of trouble, and still not give you any substantial help, or he can live in the safe fantasy world that the system works, he can advise a good treatment and send you on your way and it's your fault if you won't do the best treatment available. We can see which he has chosen to do.

I'd say move on. You're not going to get anywhere with this one.

 

[Snowdrop]

If you're going ahead with an appointment you might want to have a look at Tom Kinlon's critiques or James C Coyne psychologist at an american university (Ohio I think) he has some scathing things to say on the subject of PACE trial data not being 'the gold standard of excellence' that is the propaganda.

 

[SOC]

Just a thought ---

What if you tell him you don't want treatment for ME. You want treatment for OI, sleep problems, pain, cognitive dysfunction, gut problems, etc. Surely he's got something better than CBT for those.

 

[alex3619]

Just a thought ---

What if you tell him you don't want treatment for ME. You want treatment for OI, sleep problems, pain, cognitive dysfunction, gut problems, etc. Surely he's got something better than CBT for those.

Sidestepping the issue might indeed be a better way with most doctors. Be sure to mention pain that is NOT muscle pain, or you might get referred back to CBT/GET. Much of the CBT/GET agenda for CFS/ME is due to the insistence they treat fatigue, even if there are no objective outcome measures. So instead focus on the non-fatigue issues.

 

[JAH]

GET lost...

 

[Kati]

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.

Interestingly in Vancouver there is discussion of 'good' CBT and 'bad' CBT. So patients who do not want CBT actually get convinced that what is being offered is better than the UK CBT. (Sorry, no offense). Moreover, there is discussions about ME, FM and Lyme all being about 'central sensitization syndrome' which actually nears a psychiatric diagnosis.

@Jonathan Edwards have you heard much about central sensitization theory during your career?

 

[elliepeabody]

Just a thought ---

What if you tell him you don't want treatment for ME. You want treatment for OI, sleep problems, pain, cognitive dysfunction, gut problems, etc. Surely he's got something better than CBT for those.

I think this is a good approach.
Also the shared decision making guidance produced by the NHS
http://sdm.rightcare.nhs.uk/about/shared-decision-making/
Especially

Shared decision making (SDM) is the conversation that happens between a patient and their health professional to reach a healthcare choice together. This conversation needs patients and professionals to understand what is important to the other person when choosing a treatment.

This is a big change in approach and culture for some clinicians.

And from NICE
https://www.nice.org.uk/guidance/cg53/chapter/key-priorities-for-implementation
Especially

Healthcare professionals should be aware that – like all people receiving care in the NHS – people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care.

and

Cognitive behavioural therapy and/or graded exercise therapy should be offered to people with mild or moderate CFS/ME and provided to those who choose these approaches, because currently these are the interventions for which there is the clearest research evidence of benefit.

My bold, - I think it is clear, even in NICE that you have a choice and that choice should be respected.

What is the level of severity of your ME? CBT/GET is only recommended by NICE for mild / moderate

ETA - if you look at the Decision Aid on the NHS England website you will see that there is a structure which encourages the patient to weigh up the risks and benefits of each option, and also to consider what is important to them in their own personal circumstances. If you have the energy you could perhaps present a more structured approach to your doctor maybe along these lines
https://decisionaid.ohri.ca/docs/das/OPDG.pdf

I think there are two issues here - the evidence and the doctor respecting your decision.

 

[Jonathan Edwards]

Interestingly in Vancouver there is discussion of 'good' CBT and 'bad' CBT. So patients who do not want CBT actually get convinced that what is being offered is better than the UK CBT. (Sorry, no offense). Moreover, there is discussions about ME, FM and Lyme all being about 'central sensitization syndrome' which actually nears a psychiatric diagnosis.

@Jonathan Edwards have you heard much about central sensitization theory during your career?

Central sensitisation is widely discussed in terms of chronic pain syndromes - it is the standard model more or less. I am not so familiar with it in the context of ME or Lyme.