Letter from the 25% ME group to NICE re: CBT and GET, Feb 2019

Download link, https://25megroup.org/download/2302/?v=2840

 

I think that numbers is an issue here, 700 members is very low to hold sway compared with the 600,000 that supposedly might fit NICE criteria or Crawleys CFS. Even the MEA 5,000 members views is very low in that context (a problem with broad umbrella approach and nhs not giving patients group membership information). Those in the severe group harmed, it might be interpreted that that was just GET administered incorrectly rather than reason to scrap GET itself.

 

Not so sure. I think it should be well understood that only a minority of an illness population will actually be members of its own support organisation. It only suits certain people. And especially when at the severe and of the illness.

 

But I would argue, either way, that it means that GET is unsafe as a treatment. Do NICE really want to leave a treatment in place that is potentially being delivered incorrectly in such a way that it harms patients? And how would NICE know who is delivering it correctly or not?

 

The argument about safe delivery seems a non-starter to me.

If there are problems standardising the delivery of the treatment, then that is a problem with the treatment.

I can see no drug being accepted for NHS recommendation that could not meet quality standards.
This is no different. The quality of delivery out there is not safe.

No point in saying, “Oh but is was safe when we delivered it under trial conditions”, if that safety is not replicable in the real world.

Of course if you didn’t look for harms when doing your trial testing (or looked in a cursory and insufficient manner) then of course your trials will find no harms! Doesn’t mean it’s “safe” though!

 

Removing a recommendation for being harmful after it was strongly objected to at the time for the harm it would promote would be an acknowledgement that the process by which it was approved would need to be evaluated, possibly massively reformed. That would be a massive wrench in the deployment of IAPT.

Advocates and experts told psychosomatic proponents their misunderstanding of the disease was harmful and not based on credible evidence. Many other countries are facing the same dilemma, highlighting that it's a general problem, not one of specific implementation or choices. There is a long public record of those objections, which have turned out to be accurate (as the truth usually is). NICE and the entire NHS rejected those objections as unfounded and meritless. They didn't listen, didn't care to listen. Proponents of this model assured everyone those objections were mere whininess.

Cheerleaders of the psychosomatic guidelines have been warned plenty. They still went ahead with it, confident that their biased and prejudiced perception of reality was better than our own lived experience and the entire body of evidence supporting it. To remove the recommendation would be an admission of a major, disastrous fuck-up of international significance.

Psychosocial ideologues burned the boat when they came onshore. There is no turning back from this without rightfully destroying the careers of those who promoted nonsensical garbage despite the desperate pleas of those who would be harmed by it. One specific deflection was always "no evidence of harm", oftentimes in direct reply to testimony of harm.

That's just too big of a man-made disaster. Especially as there was no urgency to it, no forced decisions pressed by time or circumstances. This was the product of thousands of entirely wrong choices, made against consistent pleas to not go down a road that would end up harming millions. Entirely willful and deliberate. It can't be walked back, not without major consequences that would involve legal, financial, potentially criminal, consequences.

Dr Frankenstein's monster is out there, trashing the countryside. He's not coming back to the lab any time soon until it is forced to.

 

More to the point, there is no good evidence that there is any correct way to administer GET in such a way that no pwME will be at risk of harm. The system would have a fighting chance if there was a clear way to distinguish those pwME at risk of harm, and those not.

Suppose for instance that science discovered a reliable way to identify pwME: a) Who are likely to be harmed by GET; b) Who are very unlikely to be harmed by GET; c) Who they still could not tell either way. It would then be clear that administering GET to those in 'a' or 'c' would be tantamount to criminal. I suspect that those pwME in 'b' would then jump at the chance to give it a shot, with nothing much to lose anyway. Unfortunately everyone is in 'c' at the moment, so it's tantamount to criminal.

 

Absolutely. Pharmaceuticals manufacturing is subject to immensely rigorous regulations; products delivered to patients have to be manufactured to within very close tolerances. Not only that, they have to be able to prove they did so, even a decade after, to protect themselves from possible litigation. There is a whole industry built around this notion of "no proof no product" (I used to work in part of it). And yet we have therapist-delivered treatments with potentially the same degree of health impacts, where the point-of-delivery tolerances are not even specified it seems, let alone not being followed.

 

This is the nub. (Whatever a nub is.)

 

Origin

late 17th century: apparently a variant of dialect knub ‘protuberance’, from Middle Low German knubbe, knobbe ‘knob’.

 

haha how apt..... but which knob are we referring to?

 

Peter Gladwell et al. claimed to find what were the elements of rehabilitative strategies that were associated with good and bad outcomes based on an Action for ME survey.

I wasn't convinced they proved their point as I pointed out in my published letter:

 

Same way the BPS crew do - if it works, it was delivered correctly. If it doesn't, it wasn't. At the moment everyone is delivering it incorrectly (Can't remember which BPS activist claimed that). The only alternative explanation as to why it causes so much harm to genuine ME sufferers is that the PACE trial is a pile of crap, which is an option the BPS crew refuse to consider, so it must be either the patients' or the therapists' fault.

 

My point was more that, as far as I know, there is no follow-up with patients post "treatment". I'd imagine that the closest NICE could get to finding out if patients did or didn't improve following CBT and/or GET is to find out how many patients 'therapists' inflicted those 'treatments' on each year and what those patients might have said in an end of course questionnaire (and we know how accurate those might be).

I guess what I'm trying to suggest is that NICE should take on board that significant numbers of patients, in this letter and in other sources, are saying that GET and CBT can be harmful, yet the NHS has no way of tracking that in place and being able to reasonably disprove the accusation - apart from the normal hand waving dismissal they typically use.

 

Given trial drop outs don' t seem to be investigated, does anyone have any confidence anything will be done re this ?

 

The MS society has 29 000 out of a supposed 100 000 sufferers. There might be many reasons , including the £5 fee, but it does give them more Claim to represention.

 

Nobody knows what the figures for M.E are! How could we know when many doctors can't diagnose it or diagnose depression or fibromyalgia instead. In fact some doctors think fibro and M.E are the same disease. I personally don't think M.E is that common. Chronic fatigue is conflated with M.E..so it's in essence a dog's dinner. Not to even mention the number of doctors that don't believe in M.E at all. An endocrinologist said straight to my face there's no such thing as M.E.

 

“An endocrinologist said straight to my face there's no such thing as M.E.”
@Sunshine3

Me too. An endocrinologist used exactly the same words to my face.

 

Similar here: An endocrinology consultant who was actually recommended to me as a 'CFS expert' told me that my horrifically disabling, bring-you-to-your-knees symptoms could be just me mistaking everyday bodily functions for symptoms.

When he said that, I was so shocked and lost for words that all I could do was put my elbow on his desk - I was sitting across from him - and literally facepalm, muttering 'Oh, Christ...' in my most exasperated tone. The appointment came to a quick end and I refused to see him again!

 

I trust that you were well enough to tell him that you would always remember him as a complete everyday bodily function.