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

Sasha

Fine, thank you
Messages
17,863
Location
UK
Outstanding! They've produced a report with some strong recommendations for NICE.

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

ME Association said:
We conclude that CBT in its current delivered form should not be recommended as a primary intervention for people with ME/CFS.

CBT courses, based on the model that abnormal beliefs and behaviours are responsible for maintaining the illness, have no role to play in the management of ME/CFS and increase the risk of symptoms becoming worse.

[...]

We conclude that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.

[...]

We consider the current NICE guideline on ME/CFS with regard to illness management recommendations to be in need of considerable amendment and for NHS specialist services and private practitioners to be advised of more appropriate management methods.

We will therefore be preparing a paper on illness management that will better reflect the patient experience using evidence that has been obtained in this report, and in our previous Management Report. This work will also reflect those aspects of the NICE guideline that we feel are supported by patient evidence but have not found their way to delivered patient care.

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

Thank you, @charles shepherd!
 

Cheshire

Senior Member
Messages
1,129
I like their subtittle "No decisions about me without me".

It's just the opposite of the whole psychobabble crap, where we're not considered to be able to have any insight into our own health, where our own salvation can only be achieved by following the advices of the knowledgeable "therapist" who's the one that can save us from our deluded self. And they call the whole prosses "empowerement of the patient"... Blahhh

"No decisions about me without me", that's real empowerement!
 

A.B.

Senior Member
Messages
3,780
I like their subtittle "No decisions about me without me".

It's just the opposite of the whole psychobabble crap, where we're not considered to be able to have any insight into our own health, where our own salvation can only be achieved by following the advices of the knowledgeable "therapist" who's the one that can save us from our deluded self. And they call the whole prosses "empowerement of the patient"... Blahhh

"No decisions about me without me", that's real empowerement!

A like isn't enough. I love this post.
 

chipmunk1

Senior Member
Messages
765
I like their subtittle "No decisions about me without me".

It's just the opposite of the whole psychobabble crap, where we're not considered to be able to have any insight into our own health, where our own salvation can only be achieved by following the advices of the knowledgeable "therapist" who's the one that can save us from our deluded self. And they call the whole prosses "empowerement of the patient"... Blahhh

they dont believe this anyway. just a lot of talk to make patients feel understood so they can unload their freudian horse manure on them.
 
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eafw

Senior Member
Messages
936
Location
UK
"No decisions about me without me", that's real empowerement!

They've taken it directly from the NHS (*) who have been using this slogan for years, and yet not delivering on it at all. Window dressing basically, as they continue to ignore and denigrate us (and many others with chronic health problems and disabilities too). So I read it in the MEA report as giving a nod to the irony of that.


(*) ETA, more precisely from the coalition reforms for the NHS, so even worse really
 
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eafw

Senior Member
Messages
936
Location
UK
On page 6 (of 294)

"We recognise that it is impossible for all treatments for a disease to be free from side-effects, but
if GET was a licensed medication we believe the number of people reporting significant adverse
effects would lead to a review of its use by regulatory authorities"


Let's hope the MEA keep hammering at this, and that other pressure groups can join with them in ripping up the whole PACE/NICE/GET horror show that's been inflicted on us for so long
 

eafw

Senior Member
Messages
936
Location
UK
page 84

"The evidence of this report coupled with the evidence of previous patient surveys ... lead us to the conclusion that there must be a change in the position held by NICE where patient evidence is almost completely ignored and the evidence from RCTs is relied on seemingly without question"
 

eafw

Senior Member
Messages
936
Location
UK
and

page 90

"Our data indicates that a substantial percentage of health professionals do not understand the illness and we found it disturbing that the position was not much different when the therapists were believed to have an ME/CFS specialism"


It's a long report, lots of patient testimony (which I skimmed) and a few nice graphs, but above extracts by the authors hopefully give an idea of the general gist of it for people.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
PLEASE let this bring about change! I'm all for speaking one's mind, but - I literally feel like the ME sufferers of the UK need to take this group of psychobabblers to court and present their side. Why hasn't a patient group been formed to sue their a$$es off?

Maybe that's a more good ol' US of A idea, or maybe the people who have been most wronged are now bedbound and unable to strategize. I just don't know how anyone can get away with this kind of wrongheaded nonsense for so long. (How long did electroshock therapy last again?)

I'll be talking about study selection bias in my next vid for my students...

-J
 

duncan

Senior Member
Messages
2,240
Electroshock therapy continues, just under a different name - at least it does in the United States.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@duncan -

A friend of a friend got it for her severe bipolar disorder. It lost her several hours' worth of memory every time, but made her feel 'normal' for two weeks.

Still, she got that recommendation after she'd tried everything there was to try, giving a passel of medications a fair shake, including lithium. She didn't come in with bipolar and the doc went, "well, what do you think about electrocution?"

I had tiny jolts sent into my hip as part of a PT regimen. While it was agonizing for five or ten minutes, the effect on my long-term pain, range of movement, etc was a godsend. When I was at Mayo and they were attempting to test my nerve transmission, they gave me shocks I couldn't tolerate...

...but my neck pain/congested feeling/stiffness disappeared. For someone with ME it was amazing. I thought, "could I tolerate this once a week?" The answer was NO, but I felt wistful.

They even still use leeches on infected and rotting tissue sometimes.

Many old-fashioned therapies are still useful in certain applications... but it's all about how eagerly and indiscriminately they're used. Every generation of physicians and pharmacists thinks poorly of the generation before, but people weren't stupider in the past. They found something that worked in some situations and leapt about their practice, sprinkling a bit of it wherever they went, regardless of circumstance. They're still doing so now, just with different treatments. I'm not sure I know anyone who hasn't been offered an SSRI at some point in their lives, for example. I'm including everyone I know who's ever talked to me about their doctors' visits in that statement, not just ME patients.

[Edit - let's cap the electroshock therapy discussion here, guys, that's not what this thread is about.]

-J
 
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mango

Senior Member
Messages
905
Electroshock therapy continues, just under a different name - at least it does in the United States.

They still use it here in Sweden too... A friend of mine who has ME (moderate, at the time) was subjected to it when the anti-depressants didn't cure her... :( :depressed:
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
A friend of mine who has ME (moderate, at the time) was subjected to it when the anti-depressants didn't cure her...

What.

WHAT.

That's enough to make you crazy in and of itself. I'm not sure I could have handled being given electroshock against my will, never mind the reason being that no one would believe I was 'really' sick. That's like something out of a Twilight Zone episode!

MAYBE IF THE ANTI-DEPRESSANTS DON'T WORK, LOW SEROTONIN or DOPAMINE IS NOT THE PROBLEM. Y/Y? :bang-head: :bang-head:

Ugh. I wish people didn't long so desperately to be 'right' and feel useful that their thought patterns became crystallized and immovable. The reason any doctor would feel justified in doing this is the firmly held belief that ME is a belief system, despite no credible evidence to support the claim.

-J