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

[BurnA]

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


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


and


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.

Thanks for taking the time to reply.

I have no problem refusing the treatment - he is not forcing me to have it. I am just frustrated that his approach is this is the "only evidence based therapy " and therefore his thinking is why would I not do it, instead of seeing the flaws in the studies which led to this treatment.
He is making me feel bad ( unintentionally or not ) by me refusing this treatment which in his eyes works. And of course how can I have any meaningful discussion with him if he genuinely believes Get/cbt is worthwhile. ? It's hard to respect anyone who believes that.

So my main intention is just to make him understand that this is a real Illness of which get/cbt has no part to play.

Thanks.

 

[Research 1st]

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.

The OP timely asks ''what to say to a doctor who recommends GET CBT''.

I would question 10 points to any doctor who recommends scientific fraud (CBT GET) for neurological ME.

1) Provide me with science based evidence of GET CBT (there is none) reducing symptoms.
2) Prove to me I have CFS/ME (there is no reliable evidence, as there is no test).
3) Prove to me I won't be harmed (no science based evidence of GET effects exists).
4) Provide urine/blood based oxidative stress assays. Prove I don't have high levels of oxidative stress at rest, and therefore GET still reduces symptoms as is the claim.
5) Provide me with the same tests after I perform GET, show me the oxidative stress levels
aren't even higher. (They will be).
6) Provide me with scientific evidence that chronic high levels of oxidative stress isn't harmful to the human body and isn't related to cancer, increase risk of endothelial damage/CVD mortality, premature ageing - which GET will only increase.
7) Provide me with multiple nutritional blood tests to rule out deficiencies known to increase levels of oxidative stress. Record my BMI to prove I am eating sufficiently, despite the results.
8) Provide me with a TILT test to rule out autonomic dysfunction (POTS) a neurological cause of chronic fatigue.
9) Provide me with cytokine IL-2,IL-4,IL-6,IL-8,IL-10,IL-12,IL-13,IL-17 and, chemokine assays including: MCP1, Mip-1, VEGF, TGF-B1, PGE2 and IFN-g.
10) Provide me with the same immune activation/inflammatory assays after I perform GET including during PEM crash and symptoms exacerbation.

Then I would get a letter from a doctor for them to sign that you have informed them you will give to your lawyer, before you engage with the CBT GET that says this.

Dear patient who can sue me as a licensed medical practitioner for medical negligence by making your disease process worse through recommending non science based treatments based on weak subjective fatigue analysis of psych F48.0 (OXFORD criteria) CFS patients, of which you exceed the diagnostic criteria for and therefore don't have.

I have followed the 10 points you the patient have requested and I hear-by state that GET via CBT, will not worsen the inflammatory oxidative state I know you don't have, because I didn't run any tests on you (when you sensibly asked) because you understand the biomedical background to your disease process by following medical research, unlike me.

I can therefore recommend CBT GET is safe to you on the basis there is no scientific evidence to support it's use, in a condition we don't know you the patient even has (CFS/ME) as there is no inclusion based diagnostic test to confirm it or not. When you the patients was diagnosed with CFS/ME you only had access to exclusion based basic screening tests for the condition you patient don't have, as the tests are negative.

Therefore with full confidence, I can recommend CBT GET to you on the basis that NICE in the UK and the CDC is the USA, created an 'evidence based' guideline with no actual scientific evidence for the recommendations.

Regards,

Dr Do-Little.

 

[Snow Leopard]

So my main intention is just to make him understand that this is a real Illness of which get/cbt has no part to play.

GET/CBT sometimes are prescribed as adjunct therapies for other illnesses, with reasoning such as: do this to avoid deconditioning and fatigue etc. The difference is that few believe it will improve the underlying illness itself.

 

[Esther12]

Rather than trying to prove anything to the doctor, I think it's better to ask them to show you evidence which supports their views, giving you a chance to point out how weak this evidence is. There are things about doctor/patient relationships, prejudices around CFS, etc, which mean that a more cautious and sceptical approach can work better imo.

 

[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.

Sorry to reply to my own post , but I want to add a point or two.

This is how US ME/CFS specialists have been treating patients for many years. I don't get OI meds for ME, I get OI meds for OI symptoms. I don't get antivirals for ME, I get antivirals for documented viral infections. I don't get IVIG for ME, I get it for hypogammaglobulemia... and so on. My insurance wouldn't pay for any of those meds if the doctor said it was for ME. The insurance pays because I have the condition, hypogammaglobulemia, for example, that the medication is intended to treat.

This should be a no-brainer, and yet so many doctors don't get it. They just keep spouting, "There's no established treatment for ME." Duh. We all understand that. That doesn't mean you can't treat symptoms and associated conditions for which there are treatments. What happened to simple logic?

 

[Large Donner]

Thanks for all the replies.

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"

How ironic that you have thoroughly investigated both CBT/GET and Fluge and Mellas papers and he has done neither whilst telling you to "at least consider......."!

Plonker!!

 

[TiredSam]

Sounds like he's got a false illness belief to me.

 

[Valentijn]

Hi, Just wondering if there is an easy or simple reply to a Doctor who recommends GET /CBT ?

No trial has ever shown that CBT or GET have any clinical impact on objective measurements indicative of disability. On the rare occasion that actometers were used, they directly contradicted the self-report of improved fatigue. This is to be expected when the CBT aspect is specifically aimed at changing how the patient interprets and reports their symptoms.

That lack of improvement is buried in http://www.ncbi.nlm.nih.gov/pubmed/20047707 , which reviews three CBT/GET studies where actometer data was collected. Reading the full study and thinking about it is necessary, because the results are quite spun in the abstract and elsewhere: the authors try to sell it as physical activity and capacity being unimportant. But if your doctor is able to read past the spin, it can be a very educational experience for him in showing how dishonest these BPS researchers really are.

And make sure your doctor understands that you are concerned about lessening your physical disability, rather than being taught to believe you are not fatigued while remaining just as disabled.

 

[ScottTriGuy]

The OP timely asks ''what to say to a doctor who recommends GET CBT''.

I would question 10 points to any doctor who recommends scientific fraud (CBT GET) for neurological ME.

1) Provide me with science based evidence of GET CBT (there is none) reducing symptoms.
2) Prove to me I have CFS/ME (there is no reliable evidence, as there is no test).
3) Prove to me I won't be harmed (no science based evidence of GET effects exists).
4) Provide urine/blood based oxidative stress assays. Prove I don't have high levels of oxidative stress at rest, and therefore GET still reduces symptoms as is the claim.
5) Provide me with the same tests after I perform GET, show me the oxidative stress levels
aren't even higher. (They will be).
6) Provide me with scientific evidence that chronic high levels of oxidative stress isn't harmful to the human body and isn't related to cancer, increase risk of endothelial damage/CVD mortality, premature ageing - which GET will only increase.
7) Provide me with multiple nutritional blood tests to rule out deficiencies known to increase levels of oxidative stress. Record my BMI to prove I am eating sufficiently, despite the results.
8) Provide me with a TILT test to rule out autonomic dysfunction (POTS) a neurological cause of chronic fatigue.
9) Provide me with cytokine IL-2,IL-4,IL-6,IL-8,IL-10,IL-12,IL-13,IL-17 and, chemokine assays including: MCP1, Mip-1, VEGF, TGF-B1, PGE2 and IFN-g.
10) Provide me with the same immune activation/inflammatory assays after I perform GET including during PEM crash and symptoms exacerbation.

Then I would get a letter from a doctor for them to sign that you have informed them you will give to your lawyer, before you engage with the CBT GET that says this.

Dear patient who can sue me as a licensed medical practitioner for medical negligence by making your disease process worse through recommending non science based treatments based on weak subjective fatigue analysis of psych F48.0 (OXFORD criteria) CFS patients, of which you exceed the diagnostic criteria for and therefore don't have.

I have followed the 10 points you the patient have requested and I hear-by state that GET via CBT, will not worsen the inflammatory oxidative state I know you don't have, because I didn't run any tests on you (when you sensibly asked) because you understand the biomedical background to your disease process by following medical research, unlike me.

I can therefore recommend CBT GET is safe to you on the basis there is no scientific evidence to support it's use, in a condition we don't know you the patient even has (CFS/ME) as there is no inclusion based diagnostic test to confirm it or not. When you the patients was diagnosed with CFS/ME you only had access to exclusion based basic screening tests for the condition you patient don't have, as the tests are negative.

Therefore with full confidence, I can recommend CBT GET to you on the basis that NICE in the UK and the CDC is the USA, created an 'evidence based' guideline with no actual scientific evidence for the recommendations.

Regards,

Dr Do-Little.

X1,000!!!!

This is perhaps the single most useful document I have encountered in my m.e. journey. Wish I had of had it sooner.

Thanks you @Research 1st

 

[redaxe]

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 !

If you end up seeing the cardiologist you can discuss pyridostigmine - that has been helpful for some people (myself included) with OI issues.
Regarding what to say to your doctor - well if Dr Jonathan Edwards has a contact email address you could possibly provide that to your doctor - from one immunologist to another...
I've also had GET suggested to me - normally I don't really bother arguing but I could say (and this is true from my experience) that I went downhill a lot more quickly when I continued my long-term standard exercise regime after I started to feel crappy with ME/CFS symptoms after the initial flu-like trigger/s. For me I would do a workout and feel really weak and run-down from it. I could emphasize that I wanted to do it and I used to become fitter and stronger from training but then it made me weaker so I listened to my body and cut down on the exercise...
At least that way I am answering the doctor and giving them a reason to consider that I'm not just deconditioned or afraid of exercise etc.... rather than trying to argue with them.

Other than that if you can't get any immunological treatments - well maybe look at modafinil & piracetam - these might be worth considering for cognititive function and possibly wellbutrin - which although is classed as an antidepressant actually has quite a unique mode of action and raises norepinephrine and dopamine levels which often means more energy and tends to have less side-effects than other classic "anti-depressants".

Possibly, although I'm not so sure about this you could consider a low dose of clenbuterol that might help maintain muscle strength and raise blood pressure - although I don't know if that would help with OI issues. That said I would go easy with all these drugs. For many they can be great but you need to ensure that you don't crash after using them.

 

[slysaint]

Dr Do-little, love it!

 

[Sean]

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

Quack!

In your best duck voice.

 

[Shabbylady121]

The neurologist I was under as I have a couple of brain lesions kept suggesting it. Clearly as he couldn't diagnose me with anything concrete. Because hey I must have just grown them lesions all by myself!
So after discussing it with supportive gp we said ok let's do it!
I am/was a counsellor so therapists always find it difficult or interesting to give therapy to another therapist.
Completed the assesment on second appointment was told it wasn't appropriate treatment for me ... No shit Sherlock!!
Had it been at the horrific onset of my illnesses then it may have helped. When I was worried about the future, eg career what was wrong with me, was I going to be stuck in bed forever how I was going to look after my two year old never mind myself then maybe.
But as I had come to an acceptance stage and had a package of care around me it wasn't appropriate, I didn't need to change my way of thinking.
Hearing the words you clearly have a physical illness not a psychological one was good to hear. But I knew that anyway!
I was more sane than him! Simples!tx

 

[jalle6673]

No trial has ever shown that CBT or GET have any clinical impact on objective measurements indicative of disability. On the rare occasion that actometers were used, they directly contradicted the self-report of improved fatigue. This is to be expected when the CBT aspect is specifically aimed at changing how the patient interprets and reports their symptoms.

That lack of improvement is buried in http://www.ncbi.nlm.nih.gov/pubmed/20047707 , which reviews three CBT/GET studies where actometer data was collected. Reading the full study and thinking about it is necessary, because the results are quite spun in the abstract and elsewhere: the authors try to sell it as physical activity and capacity being unimportant. But if your doctor is able to read past the spin, it can be a very educational experience for him in showing how dishonest these BPS researchers really are.

And make sure your doctor understands that you are concerned about lessening your physical disability, rather than being taught to believe you are not fatigued while remaining just as disabled.

I can see reference to CBT not helping activity levels, but I don't see anything about GET. However, when I click on that link that you provided, I cant open anything other than the "Abstract." How do I see the rest of the study results? (My doc here in the U.S. recommended CBT/GET & I know I will decline if I participate. I have severe ME/CFS & am mostly house/bed-bound.) Sorry, I must have brain fog to not be able to figure out how to see the entire study. thanks for your help.

 

[Esther12]

That study was just CBT. You cannot access to it without an account. If you really need it someone here could probably send you a copy.

I'm not sure that there have been any GET actometer ones for CFS. There's this one for CF: http://forums.phoenixrising.me/inde...program-the-4-steps-for-unexplained-cf.32694/

If you're dealing with your doctor about your health, you don't need to prove to him that GET is not useful. What you want to do is important, regardless of what he thinks. The poor evidence that GET is any more useful than a placebo just makes any pressure he may put on you all the more absurd.

You can do what you want, and what you think will be best for yourself. There are some doctors who have deeply misguided views about the efficacy of GET, and about patients who do not want GET. I think that it's best to try to be relaxed with them, be open to what they have to say, and then if you disagree with something you can explain why. If you want to take your time to think about what they've said before responding, then you can do that.

Also, if you do somehow end up doing GET, you don't need to do what the therapist advises.

 

[Valentijn]

I can see reference to CBT not helping activity levels, but I don't see anything about GET.

@Esther12 -
Dutch CBT for ME/CFS incorporates GET:

In some approaches of CBT for CFS (e.g. Bleijenberg et al. 2003), an increase in physical activity is stimulated systematically by asking patients to take short walks on a daily basis which are gradually extended in duration up to twice per h per day.

For the purpose of the present study we reanalysed three randomized controlled trials (RCT), previously conducted to test the efficacy of CBT on CFS (Prins et al. 2001; Stulemeijer et al. 2005; Knoop et al. 2008). Treatment was based on the manual of CBT for CFS described in detail by Bleijenberg et al. (2003) and effectively reduced fatigue severity in all trials.

An English translation of the Dutch CBT guide is at https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1009C&L=CO-CURE&P=R1774&I=-3 . There's a short intro from a 3rd party before the actual text starts. There's quite a bit of discussion about incorporating a "graded activity program".

 

[digital dog]

I would point out (in your calmest most reasonable voice) that there have been many serious conditions in the past that were deemed psychosomatic in nature (Crohns, MS, Parkinsons, Alopecia, Ulcers, asthma etc) but are now recognised autoimmune conditions.

Then, casually drop in information about Rituximab.

Finally, I would point out the most obvious flaws in the PACE trial and question why any logical, intelligent, well informed person would believe such nonsense.

If he/she continues to humiliate themselves then ask them why in the UK are people with ME banned from giving blood or donating organs.

If they still believe that ME is a psychosomatic illness, tell them that is it lazy medical practice for ill informed medics.

 

[slysaint]

Following on from a different thread,........suggest they watch the documentary 'Voices from the Shadows'

 

[Kyla]

Here's a review of exercise findings in ME that contradict the basis for GET/CBT:

http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf

 

[Hutan]

Here's a review of exercise findings in ME that contradict the basis for GET/CBT:

That's a great review Kyla. Very useful when making submissions against GET in CFS treatment guidelines.