Functional Neurological Disorders: Challenging the Mainstream Agnostic Causative Position 2024 Scamvougeras and Castle

[richie]

ME. post viral incl long covid, in some respects sarcoidosis - immune derailments.
1 Garner - strong chassis, derailed, short sharp reset on rails - fine.
2 Sb else, delicate chassis. maybe Gupta
3 Sb else maybe fairly simple drerailment in context of alexithymia - Mickel or reverse
4 Sb else, broken chassis - LP - no way. MP not necessarily relevant. Repair the chassis.
5 SB else smashed wheel....
6 Sb else bent axle.....

Key is when the medics stop trying. If they stop at 3 , anyone in 4-6 is lost and "the fault is your misattribution" is the door to that perdition.

 

[Trish]

ME. post viral incl long covid, in some respects sarcoidosis - immune derailments.
1 Garner - strong chassis, derailed, short sharp reset on rails - fine.
2 Sb else, delicate chassis. maybe Gupta
3 Sb else maybe fairly simple drerailment in context of alexithymia - Mickel or reverse
4 Sb else, broken chassis - LP - no way. MP not necessarily relevant. Repair the chassis.
5 SB else smashed wheel....
6 Sb else bent axle.....

Key is when the medics stop trying. If they stop at 3 , anyone in 4-6 is lost and "the fault is your misattribution" is the door to that perdition.

You've lost me. Can you explain?
What is Sb? Are you suggesting these quack therapies are useful or what?

 

[richie]

You've lost me. Can you explain?
What is Sb? Are you suggesting these quack therapies are useful or what?

Sb - somebody. Sorry.
Some people have found them useful or say they have.
I believe people who say they got better using LP. I do not assume that they were getting better anyway (though they may have been) I do assume that their system was shocked off the rails and that LP shocked it back on metaphorically . I assume that they had a robust chassis, axle etc, that while off the rails they did not smash a wheel an axle or anything else i.e. that they did not pick up opportunistic infections, end up with severe deficiencies, suffer any other changes leading to issues that LP cannot touch.. I presume they did not get eg. dorsal root ganglionitis. They were just "derailed" and put back on. Immune hit and run knocked them over and LP helped them up. Natural recovery occurs and no one calls it quackery, so maybe LP helped them to expedite or initiate or complete a natural recovery but maybe it was in fact essential for them. I don't know.
We do know that others do not respond so well to put it mildly. But LP has no interest in those with broken parts and basically like CBT/GET sees them as misattributing and this dogmatism leads to the closing of debate discussion patient investigation and research with which we are all familiar. The problem is that the dogmatism is perhaps for some part of the hard core parcel that bounces them back on the rails so they will always persist and the battle will not end because for them it is about efficacy not truth. They are just not talking science
All these therapies effective or not bend the truth for efficacy in given cohorts while damaging the chances of those who do not fit in .
I've said this before but I think in regard to these therapies science is a bit off the point. It is fair to challenge them re objective truth but we won't get far as for them it is secondary. We just have to remind everyone of that when they make noting buttery statements.

Some people report that they have worked for them. I think it is a matter of what's wrong , where you have landed after an immune hit and what happend thereafter. Where thay pose a danger is if the participant is not suitable in terms of physical or mental health and when they blame everything on misattribution shutting down debate, research , investigation by assuming they know it all, we are all the same and they stand in a position of objectivity to judge when it is time to diagnose an FND rather than research/investigate further. Whether they want to sat FND is psycho or not they have to say what the cause is. The fact that one FND explanation may contradict another while claiming to be the explanation just suggest that the proposed aetiologies are at best partial and may be reliant for any power on their ability to convince rather than their truth.
Sorry for any repetivity. Posting got messed up.

 

[FMMM1]

The MEA and Charles Shepherd deserve some defence. They have been active in service of people with ME for quite some time and have played an important role in for example getting an objective review of the evidence as part of the current NICE guidelines. Certainly one can not question Charles Shepherd’s hard work and personal commitment.

Not everyone will agree with everything they do, and they have been much less confrontational at times than many people would like. However they would argue that working with the establishment achieves more than working against it. Overall I don’t know that we can say this wasn’t a good policy. I don’t know their rational for funding this current project, whether they see working with BACME members as a way of influencing what is the current UK clinical establishment or if they see this as a way of supporting implementing the NICE guidelines, though I do share the reservations of others here about the direction of this project.

The MEA trustees along with Charles Shepherd have been in position for a long time, and perhaps many of us here in the UK could be more involved in the organisation. I include myself in that, as my membership lapsed some twenty years ago during a prolonged relapse, and I have not got round to renewing it since.

Actually I'd wondered if I should have worded that statement differently. E.g. I recall a brief spat I had with the charity which acted as secretariat to the then APPG [possibly close to 10 years ago (5-10 years)] - the charity told me that "there was evidence that some people benefited from GET & CBT"; they then told me that the matter was closed - discussion over! NICE has now put that matter beyond (reasonable) doubt i.e. describing the "evidence" as "low" and/or "very low quality" - many on this site contributed to that review (thanks).
The recent defence re funding the evaluation of clinical interventions using those same flawed techniques (subjectively - questionnaires) --- what can you say -- deeply frustrating!
Those two points above are just that - 2 points which do not adequacy describe the overall work of charities, or indeed those specific charities, and I'll amend my post to try to capture that - thanks for bringing this up! I'd also add that much of this is complex (a further defence) - I rely on this site to try to understand it!