Guardian Article on NICE pause

If ME was a psychological or behavioural problem, it would be liberating for patients to receive the right treatment. They would feel understood and be supportive and grateful of the research and therapy.

Somehow this thought does not occur to many people. Belief in a Freudian view of psychosomatic illness (patient categorically in denial) is widespread.

 

Also given they are now admitting GET/CBT can cause harm and have as of yet presented not indication as to how to distinguish those that will be harmed from those that will not, they are asking the patient to play Russian roulette. But also Russian roulette where they can not give any meaningful probabilities for the different outcomes.

At times medicine involves risk, and it is acceptable to ask the patient to take risk, if they are informed of the consequence and can balance the likelihood of benefit versus harm, however given the GET advocates and current specialist service do not adequately record harm and up till now have refused to even acknowledge the possibility of harm, we are not seeing informed choice.

 

The crucial insight for people that often gets lost along the way: Treatments are given to pwME for a condition they do not suffer from. Full stop.

Their ME/CFS is not due to unhelpful beliefs preventing them from overcoming deconditioning, yet that is what they are being treated for! If you treat any patient for an illness they do not have, there will always be the potential for deterioration of their condition, either through lack of the correct treatment, or because the prescribed treatment directly impairs their real condition.

So as I see it we need to cut to the chase. Just highlight the blindingly obvious, but which people don't realise until someone cuts through all the cr@p for them, and spells it out succinctly and clearly: GET and CBT are intended to treat an illness that pwME do not sufferer from. So akin to being prescribed ibuprofen for a kidney condition that might be worsened by ibuprofen, without the clinical wisdom or evidence to know if it would be safe for the patient.

GET and CBT are intended to treat an illness that pwME do not sufferer from. pwME suffer from a physiological illness; CBT and GET are prescribed to overcome a psychological condition.

Misapplication of a treatment - THAT is the root of what pwME object to. Explanations more complex than that just provide breeding ground for conflation by the BPS crew to sow confusion and misinformation.

Also, when MS and Co "patiently explain" that they know there is a physical component to ME/CFS, it comes across to the uninitiated that pwME's assertion of a physical illness is being acknowledged by MS and Co. But of course that is absolutely not so, and is just part of the confusion MS and Co deliberately spread; they are talking about deconditoning as the physical component.

 

Fluge and Mella produced pharmacodynamic profiles for each patient showing progress over time. Although we now know that the responses were spurious (placebo or expectation bias of whatever sort) you can see very clearly that some patients spiralled up to reporting feeling normal and others did not change. For the phase II unblinded extension my memory is that the situation was fairly clearly bimodal, although messily so.

When I was doing rituximab studies I similarly plotted individual patient progress. For some nothing happened. For others there was remission.

Basically the PACE authors shod have presented their data the way F and M did and it would have been even clearer that the treatments were no unwinding some psychosocial perpetuating factor..

 

Since journalists often ask the two parties to contribute quotes in isolation, there's never really a chance for one side to interrogate the other. In a news article, where the journo won't want to (overtly) editorialise, they end up not challenging this themselves in case it seems biased.

It's the nature of the beast. Perhaps what we really need is media training for our charity reps, so that they can preempt the usual statements. It doesn't take precognition to know what they will say.

 

Except that in this case I had spent the best part of an hour on the phone with Grover going through the arguments and counter-arguments. She specifically rang me to ask me to explain why the two sides differed so much.

 

Well i dont see why not

couldnt agree more.

 

It seems the article has been updated, because your comment about believing patients when they worsen as well as when they recover is there, as well as your comments about the step counters.

However, the Forward ME press release for the 18th August had an unhelpful focus on the dualism argument, so that's what I was referring to more than your comments.

 

So disingenuous. As if huge numbers of patients dont say the treatment made them worse. "if you believe the patient you believe the patient" Indeed. But you have to believe them when they're not saying what you want them to say because they havent been asked leading questions/been manipulated into saying they feel better, as well, not only when they say what you want them to.
It's diabolical the way things are being spun. Very clever.

Edit Cross posted with adambeyoncelowe above, it seems the article has been updated to adress this now

 

The article has a number of issues (the title and the headline first and foremost) and errors from interviewees left uncorrected.

The "best available criteria" at the time the PACE trial was being designed were the Fukuda criteria, not Oxford, and dropping actigraphy measurement was the sole decision of the trial steering committee, not that of medical bodies.

However, it seems to me that, from an external (non-ME patient) point of view, the arguments from critics of the PACE trial and ME charities effectively rebuke those of Sharpe and Chalder. The latter give the impression of being weak justifications against well-founded criticism, and they become a confused muddle.

One such instance is believing patients about their self-reported symptoms:

While the article unhelpfully spirals down into the "psychological vs physiological" debate, the very reasonable position of ME charities on the matter offsets Chalder's comment on not getting embroiled in "dualistic thinking". Clare Ogden (Action for ME) and Peter White (Forward-ME) both recognize without question that any chronic illness can have a significant psychological impact; the argument is not about denying it, but that ME patients could have benefited from more biomedical research rather than funding being endlessly granted to psychological research.

ETA: a somewhat exquisite example of survivorship bias in Chalder's response:

 

Indeed, thank you @Jonathan Edwards

 

[my bold]

As always, obfuscating and playing down the grim fact hidden within those words "some patients do not benefit from these therapies". It is a sleight of words designed (yes I do mean 'designed') to give the impression that those who do not benefit, simply remain unchanged, and are no worse off. That is the generally accepted interpretation of such language.

But the use of such language here is intentionally different I'm sure. It is intended to convey exactly that impression, whilst it also embraces a more sinister, but equally valid interpretation: That within the group of patients who do not benefit, there will be a subgroup who deteriorate.

So when these folk very ambiguously state that not everyone benefits from GET/CBT for ME/CFS, they really should be challenged to be more specific regarding those who do not benefit - what about those whose mode of "not benefitting" is to in fact deteriorate?

Ambiguity is second nature to these people, knowing that people will assume the most obvious interpretation, and thereby completely miss the more incisive interpretation they want people to miss.