IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

I think this is the strongest argument - it's basic logic, and there's no traps to fall into from using it. It's not "anti-psych," it doesn't risk undermining any other arguments, and literally anyone can understand it. Frankly it's shocking that NICE would define any disease in one manner, and then apply evidence based on research using a very different criteria to it.

We're sort of used to it being the norm, or the illogic of the situation being ignored, but it is still the best argument. I suspect the only reason it happened was because NICE was defining the disease and gathering evidence for it at the same time. There were no existing NICE criteria when they made them in 2007, so no clear indication of which research criteria they should be paying attention to. If they were being honest about it, they would have based their criteria on the research which was supporting the treatment recommendations, but that would have left them with a CF guideline and little or nothing for ME.

It's also an extremely important issue - the creep into vague criteria is exactly what allows the MUS bullshit to flourish. If disease descriptions or the research basis of treatments recommended for them are allowed to focus on "fatigue", there's no guarantee that the real symptoms will be targeted or measured by interventions. That makes it easier to establish CBT as a cure for diseases, when the diseases are replaced by a vague symptom and outcomes become focused on that vague symptom.

I think this is a poor argument to make. It implies that biomedical research done by BPS quacks using Oxford can be applied to ME when it shows a negative result. The more relevant and persuasive point is that we don't know what stringent criteria show if the criteria are never used.

And that's the other reason to blacklist Oxford studies - to force researchers to use meaningful criteria instead, and to form a better evidence base in the future. Otherwise we'll be doing this again in 10 years with a bunch of fatigue studies being used as a basis to try to guess what the best treatment is for completely different symptoms.

 

I fully agree with this, having just had another skim through CG53 and MEpedia's Oxford info. Even if the current NICE criteria are not ideal, they are much nearer the mark than Oxford; like a window versus a barn door in terms of who gets past. And second time around NICE will surely score a serious own goal if they base CG869 on evidence from trials using entry criteria much weaker than current NICE guidelines.

I agree PEM is a must have, though I know there are some people even here who do not think they get it, but I wonder if that may partly be due to the current CG53 definition of PEM being flawed, as I'm sure it is. My wife fits pretty much every criteria I read for ME, very much including her PEM. But it hits her in much less than 24 hours typically, though it gets tricky to pin down, because her pacing means she can be doing low level activity, on and off, for quite some time. But when it hits her she is completely floored for a good while, like a nasty bout of flu, limp rag mode - but onset can be within hours.

Development of this new guideline must absolutely not be driven to inadvertently favour only those with moderate/severe ME, but also fully support those with mild/moderate ME. I worry where the existing CG53 says ...

"characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)"​

... because that would exclude my wife, and very wrongly and disastrously so for a great many people. My wife's will kick in much sooner, and may or may not take several days to sort - depends how much she has gone outside her pacing regime.

The Canadian Concensus (as I read on MEpedia) is much better ...

"Post-exertional malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. There is a pathologically slow recovery period - usually 24 hours or longer."​

... by not stating any minimum period before onset, and that the recovery period is very slow, usually >= 24 hours. My wife hits the spot with that completely, and for an awful lot of PwME I imagine.

I fear the existing CG53, if adhered to pedantically, could exclude genuine PwME.

So Yes to inclusion of PEM, but for heavens sake let's be sure the definition of PEM in CG53 is not used, because I am certain the 24hr minimum before onset is completely wrong as a blanket statement for all PwME, though it may well be true for many - don't know.

 

I agree that your first paragraph should render the second not applicable.

And if the second paragraph does for some freaky reason become applicable, then your comment "not take their conclusions at face value" is highly pertinent. No matter who was doing the trial, no matter what interventions were being trialled, there should be no getting away from an absurdly simple truth: real physical functioning should have been at the heart of any trial results. Just because psychiatrists ran the trial, and just because they trialled psychological interventions, that cannot justify reliance on asking people how they thought their physical function was doing, when real physical function is the only sane parameter being primarily assessed.

 

With the problem of objective outcomes showing no improvment, I would also talk about the long term follow up PACE study that shows a null result. Despite the fact that they tried to spin that in the abstract, the findings, according to the PACE trial leaders themselves, is that "There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up." It's eloquent that this treatment is useless, even for those who do not understand the flaws of the trial.

 

Yes.

Why do NICE cling to it? It can't be the doctors who feel awkward if they have nothing to offer. It weren't the doctors in the first place. It isn't for the patients. It were DWP issues and goals, and still are.

Maybe this should be considered. It's politics.

Hopefully it will become too clear to the broader public that NICE offers bad advices, which will probably make NICE adjust their guidelines due to increasing pressure. The pressure up til now, I daresay, was from a scientific point, plus some media stories. Probably more media stories are needed and more "debunking" CBT/GET "research" so that a cumulative effect occurrs?

 

I think everyone has known that NICE offers bad advice, right from its invention. Pressure on specific issues does tend to have an effect though. Supporting a useless treatment does seem upside down though, but I think there is a belief that it saves money in the long run.

It really all depends on who is picked to chair the committee and pick its members. The job description excludes anyone but a faceless bureaucrat wanting to lengthen their CV. But it might still be someone with some sense.

 

There's no problem for NICE to use Oxford criteria instead and keep CBT/GET.

 

Which is why we, along with others, must help NICE see very clearly that it surely will be a problem.

 

Sorry Inara, but I disagree. If they accept Oxford, then they have to accept that the studies using it are unable to show any objective improvements.

Mind you, I am assuming the new committee can think logically. I know it's pushing our luck.

 

I fear NICE could side-step concerns about Oxford by just having a little 'for patients whose primary symptom is fatigue' proviso before they go on to promote CBT and GET.

I'm not convinced any of the available criteria are that great, so I'm not sure how powerful a tool concerns about Oxford are, and if they would really lead to NICE just dismissing all those trials where patients were selected by the Oxford criteria.

 

I think a key objective has to be to get NICE to truly understand that real physical function is the only sane primary measure of recovery or improvement. Even if they still seem hooked on mental issues, that does not change the fact that real physical function is what has to be measured. i.e. Objectively, what is actually achieved. Not what people say on the day they think they are capable of.

If NICE do not take on board the importance of real physical function being what underpins the issues with PwME, then any other arguments will fall on stony ground I think, because they will still be founded on this premise I imagine.

 

The correspondence between Mark Baker and Kathleen McCall has concluded with a final letter of 9th February, and towards the bottom of the page,

"Finally, look at a communication below, from a patient, that has come to Invest in ME Research in the last month - a letter which neatly describes the appalling consequences of recommending CBT and GET - something for which Professor Baker and NICE cannot pass on responsibility to others." http://www.investinme.org/IIMER-Newslet-1801-01.shtml#IiMER-reply18-2

 

Well done IiME and Kathleen McCall.

Calling a spade a spade!

 

Mark Baker to Kathleen McCall

If they truly empathized with patients then they'd stop inflicting treatments that not only don't work, but that actively harm.

So they want to continue inflicting harm on patients to justify keeping open services that offer no effective treatment and are of limited value (and that's being generous about CFS clinics).

All these guidelines legitimize is the contemptible treatment of patients.

 

Bullshit!!!

Its clearly the responsibility of NICE to state the facts about the inadequacy and potential harms of such treatments and make it clear to all other agencies that such treatments are extremely controversial and that the evidence is extremely dubious.

They cant just claim its about informed consent and then expect other agencies to take a patients side when that patient is under attack from social services, education or the DWP etc. It's not just about informed consent and the right to decline a treatment its about the utter fucking incompetence of recommending treatments that have zero evidence base and obvious potential for harm.

That would be like them recommending cigarettes to improve lung capacity then just saying its down to informed consent.

I think this man needs to understand that once PACE goes down he is going down with it for his utter incompetence even if we have to take hundreds of civil cases out against his name directly, either that or pull his finger out of his arse.

Eventually everyone who acted incompetently in the Hillsborough issue got charged, passing the buck is no excuse.

 

You might be interested to read this article in The Conversation about CBT being ineffective for schizophrenia (link).