UK: MEA calls for GET & 'false illness beliefs' CBT to be ditched as primary treatments for ME

[Tom Kindlon]

https://twitter.com/i/web/status/846425974052966400

 

[Jan]

Outstanding! They've produced a report with some strong recommendations for NICE.

http://www.meassociation.org.uk/2015/05/23959/



Well done, MEA - can't happen fast enough.

Thank you, @charles shepherd!

Yet two years later they still continue to harm patients. Nothing has changed. They have been told, but they are ignoring this evidence. Again, do they have no legal responsibility for the patients they are harming?

 

[Invisible Woman]

Regarding @Tom Kindlon's last post, no. 441, and this person's experience of GET:

When are these people going to be able to stop hiding behind NICE's skirts and be seen for what they really are: at best incompetent fools who should never be allowed to work with the public and at worst outright sadists.

I do hope I live to see the day when so called professionals who inflict this kind of harm, blindly following guidelines that are clearly harmful, are struck off.

 

[JaimeS]

There is a sort of willful blindness. The description above is, I have no doubt, an accurate representation. So.

This person never saw a physician. Probably the nurse and physio had no idea what the blood tests meant -- I've encountered full physicians who ignored a result on a blood test, not even knowing it was out of range, for months, because it was not a measurement from a CBC. They don't recognize it? They don't talk about it.

These weren't clinicians, they were technicians following their cookbook. And their cookbook explicitly tells them to ignore the patient's suffering, because it's imaginary; and to ignore unusual blood work because it might support the patient's "false illness beliefs".

How do people not see that this is a recipe for disaster from the get-go? Even presuming that ME is a totally fictional illness made up by totally insane people such as ourselves (!), suppose it's a misdiagnosed case of cancer. Should the clinician continue to force exercise and ignore any outliers in the bloodwork?

"But that's what NICE says..."

Geez.

 

[JaimeS]

In addition, @Jan, that survey was incredibly damning to anyone with sense. At the same time, the zeitgeist is that you cannot trust information that comes from patients. Their whole hypothesis of the illness is that we are not reliable narrators in our own experience: therefore, any subjective information from patients will be considered unreliable, by definition.

Psychology shows that we pay attention to what we already believe; and even when we are presented with dissenting information, it can actually reinforce our pre-existing beliefs as invent counter-arguments on the spot to support how we feel, which further solidifies our certainty. People who believe in CBT and GET as treatments may have seen this survey as a sign of patients' "illness beliefs" in action, i.e. "look how far someone can go to support their belief they are really ill, SMH."

To move NICE, we need it to come from objective data of harm, not subjective, and the data must be collected by scientists.

I can't guarantee that would provoke change, but I can guarantee that anything we say will be taken not with a grain of salt, but not at all.

Despite all this, the survey has served a very important two purposes, IMO:

1. Patients looking at it now know to be very wary of NICE's recommendations for GET and CBT.
2. People not already invested in the "unreliable narrators" picture of patients find it very convincing, including lawmakers and (some) physicians.

-J

 

[charles shepherd]

The key results and conclusions from this massive 'patient evidence' MEA report containing both quantitative and qualitative evidence on the acceptability, efficacy and safety of CBT, GET and Pacing has now been turned into an academic paper

The paper is currently going through the per review process with a leading medical journal.

As with the PACE trial data re-analyis, this sort of 'patient evidence' research has to appear in a reputable medical journal if it is going to be taken seriously by doctors and the medical establishment

Link to the Executive Summary of the MEA report and a free download of the full report: http://www.meassociation.org.uk/2015/05/23959/

 

[Invisible Woman]

This willful blindness would not be acceptable elsewhere.

I did not work with in the medical field, or with vulnerable people. There were times in my working career when I had to stand up and make a fuss because I believed the decisions being taken were likely to harm either my client's or my employer's reputation and to have serious financial consequences.e Sometimes this meant swimming against the tide of popular opinion, but as the one in the "hot seat" I felt I had a moral duty all round.

Those who work in the "caring professions" need to take responsibility for their own actions. This idea of something being acceptable just because someone else says so facilitates neglect and abuse. The recent scandal at Stafford Hospital in the UK is a prime example of no one speaking out.

Each nurse, physio, psychologist and doctor is morally responsible for their actions with each patient. It's way past time for them to accept that and be held accountable.

Edited to correct spelling of hospital trust name.

 

[daisybell]

The key results and conclusions from this massive 'patient evidence' MEA report containing both quantitative and qualitative evidence on the acceptability, efficacy and safety of CBT, GET and Pacing has now been turned into an academic paper

The paper is currently going through the per review process with a leading medical journal.

As with the PACE trial data re-analyis, this sort of 'patient evidence' research has to appear in a reputable medical journal if it is going to be taken seriously by doctors and the medical establishment

Link to the Executive Summary of the MEA report and a free download of the full report: http://www.meassociation.org.uk/2015/05/23959/

That's excellent news!

 

[SilverbladeTE]

This willful blindness would not be acceptable elsewhere.

I did not work with in the medical field, or with vulnerable people. There were times in my working career when I had to stand up and make a fuss because I believed the decisions being taken were likely to harm either my client's or my employer's reputation and to have serious financial consequences.e Sometimes this meant swimming against the tide of popular opinion, but as the one in the "hot seat" I felt I had a moral duty all round.

Those who work in the "caring professions" need to take responsibility for their own actions. This idea of something being acceptable just because someone else says so facilitates neglect and abuse. The recent scandal at Stafford Hospital in the UK is a prime example of no one speaking out.

Each nurse, physio, psychologist and doctor is morally responsible for their actions with each patient. It's way past time for them to accept that and be held accountable.

Edited to correct spelling of hospital trust name.

actually they are not just morally responsible, they are LEGALLY responsible for their actions.
the crimes against patients with M.E. are heinous and the resulting harm suffered by innocent people must therefor include murder, false imprisonment, torture, deliberate poisoning (*) , actual and/or grievous bodily harm, manslaughter, child abduction
all quite enough to get some ratbags jailed for the rest of their miserable lives.

(*) which can be a crime itself in some parts of the world and giving/forcing folk to take drugs inimical to their health needs damn well is poisoning, as are the results of same which can thus involve bodily harm even death from adverse reactions

 

[Deepwater]

This willful blindness would not be acceptable elsewhere.

I did not work with in the medical field, or with vulnerable people. There were times in my working career when I had to stand up and make a fuss because I believed the decisions being taken were likely to harm either my client's or my employer's reputation and to have serious financial consequences.e Sometimes this meant swimming against the tide of popular opinion, but as the one in the "hot seat" I felt I had a moral duty all round.

Those who work in the "caring professions" need to take responsibility for their own actions. This idea of something being acceptable just because someone else says so facilitates neglect and abuse. The recent scandal at Stafford Hospital in the UK is a prime example of no one speaking out.

Each nurse, physio, psychologist and doctor is morally responsible for their actions with each patient. It's way past time for them to accept that and be held accountable.

Edited to correct spelling of hospital trust name.

Interesting observation - are practitioners also legally responsible for the results of all their actions or do the guidelines protect them?
The analogy I'm thinking of is design of buildings, where a lot of developers apparently that if they can get Building Control approval for dodgy design or materials then they are in the clear if anything goes wrong, but in fact they are still legally responsible for the harms.

 

[Tom Kindlon]

https://twitter.com/i/web/status/896134801077420032

 

[Solstice]

Hard to like that, disgusting people on this earth...