Central sensitization: a matter of concern

This may be more ominous than a glance suggests.

We have had safeguarding protocols recently revisited for CFS , so maltreatment is an active area of redefinition which seems to be both reinforcing stereotypes and creating a narrative that links MUS, FII and central sensitisation . It is far from beningn . Tagging @Tilly

 

I have been trying to flag this up for a year or more. In the debate on the 24th January the minister said it was the Royal Colleges of GP who are giving training and setting exams for ME patients. If this is correct and it would seem to me they are trying to standardise things, that the Royal College of Paediatric and Child Health are doing the same they are training those in the field at £500 a shot in how to accuse parents (mostly mothers) of Fabricating and Inducing illness, and how to become a expert witness for court. A two day course seems nonsensical to me. Even more so when you see who is training them and they are involving the police. I have put a picture at the bottom.

It is going to become Law that you have to follow NICE guidelines and this will be no longer a guide to care.

The GMC states that it is the responsibility of all organisations responsibilities for integrating educational governance to keep patients safe.

In law and the corporate parent (this means the state as the child does not belong to the parent) are only looking at the health and wellbeing of the child and the parent become unimportant. What the parent knows or says is automatically treated with suspicion. Family courts are held in secret and it is widely known that evidence is tampered with from Social Workers and healthcare professionals.

In court the Doctors and all healthcare professionals along with Social Works are each given a barrister and a solicitor. The parents are given no financial or moral support. Most parents are told to represent themselves as it not financially or career wise best not to take on these cases. The judge is given full power and they seem to think they are infallible and most disrespect the mother. Mass hysteria and over protection is the belief system here.

To fund a case takes anything from £60,000 and even though Liberal Democrat Ed Davey stated that legal action could be taken towards the "Health Watch Dog" NICE, Who has funds, time and the energy to do this when you fight on all fronts.

Young people with ME in Merryn's condition are being taken into UCLH and GOSH and their treatment is barbaric. You cannot get them out as they have to ask for advocates and they are too sick. The support system is stretched to the point parents are left struggling on their own.

This morning and in a couple of weeks my son has medical appointments which he is too sick to attend. He needs help and there are things that could help but as a parent I have no choice but to shut up and put up as they are just waiting I feel to entrap me. I have to take my son to these appointments knowing the damage to his health or risk loosing him to the system. I cannot begin to explain how that feels, I am not alone and this has been going on for decades.

Why do we not keep the conversation around those that have died and PEM? This is where we start to change things

 

Sorry, late to this thread but it coincided with my bile duct fun and games last year.

You can self-publish on the MEAction website. Or at the very least I can highlight this thread on our social media feeds.

 

Thanks for the kind offer, but I think that's not necessary (the essay was written almost a year ago).

Think this thread is more useful as a reference for anyone looking for criticism of CS in ME/CFS, cause you don't find much of that in scientific articles.

 

It must cross the minds of UK parents of all children with ME (or EDS, etc) that by staying in the UK, they are risking having their child taken, locked up and subjected to medical abuse, and risk their own false imprisonment.

It must be absolutely terrifying @Tilly


Just thinking aloud:
I wonder how much publicity would be garnered if a bunch of those parents applied to another country as a medical refugee.

Awareness campaign:
Is your child sick with ME?
Is the medical system causing your child harm and threatening you because they do not understand ME?
Do you need to protect your child from medical error, harm and death?
Join us and apply for medical Refugee Status in (country x).

 

@Tilly

I have nothing useful to say on the situation but I am very sorry to hear this about your situation.

 

I wonder if there is a country that treat children or anyone with ME well?

 

Thank you that is always nice to hear. Mostly I speak up for all those mothers that can't and for my son who is my #MEhero

 

I wonder how things play out in Japan . They seem to have done relevant brain research, but i havn' t a clue how things are " in real life". It is a kind of unique society : i have not heard of mistreatment, but given the huge value s placed on respect and a highly stratified social order ( to an outsider- could be wrong) would we ever know ?

 

You don't get to know much about their healthcare. I think; when I have time will have a look and see. Even if I can put some Drs to shame from some good practice would be a good thing to tweet.

 

Interesting talk by Stuart Bevan at the 2019 Invest in ME conference.

https://www.youtube.com/watch?v=AyUTMGzQkCk

He thinks the central sensitization mechanism works as an amplifier and that it requires peripheral input. At minute 13.00 in the video he says:

 

FWIW, was looking for an overview of whatever actual biological evidence there is for central sensitization and came across this recent review by Harte et. al of the neurobiology of central sensitization. I haven't read the whole thing yet, but my sense is that there is a real problem with assuming correlation = causation in their analysis of the data. Would love to see what others who have a better grasp of the science in this think.

 

I agree, there is no tested model of central sensitisation, just an accumulation of (often equivocal) correlations.

 

Immune system abnormalities have also been demonstrated in individuals with central sensitization.

I think this gives the game away. In their enthusiasm for making central sensitisation sound important and trendy they have added this is. And of course if there really are immune system abnormalities they might be the primary cause of the pain rather than the sensitisation.

It is hard to see what it would mean for central sensitisation to be the primary cause. Almost by definition that would have to be what caused the sensitisation.

 

All I see here is an untested hypothesis. It's not wrong. It isn't right either. It's just untested.

I would very much be in favor of this hypothesis being put to rigorous objective testing and if it pans out for the underlying pathophysiology to make its way into medical literature and inform clinical care. This is a process that would take years, as it should.

However it is still just that, a hypothesis. A very similar one to functional disorders, which is mainly used as a deceitful proxy for hysteria and various beliefs around psychogenic illness, a vague and untestable concept by itself. Except it is promoted as fully validated and entire clinical paradigms are being built around a set of assumptions and correlations, which I would strongly take issue no matter the circumstances.

The main issue is entire steps being taken and people promoting, without evidence, things that are simply not validated. This is what defines pseudoscience and if there is anything real behind this idea then it is being sabotaged by people jumping several steps ahead into clinical implementation while still firmly at step 1.

 

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