NHS England Launches New E-learning Module on ME/CFS, 2024

Looks like the NHS e-learning module will just alienate the ME population even more.

 

It sounds pretty much of a muddle as before. I am glad I no longer have to provide clinical care in a system that is as dumbed down as this.

It shows the value of producing some decent information from S4ME. Whatever disagreements there might be about style and range content I suspect almost everyone here would agree on what is valid and what not in this module.

 

This is a live learning programme which my GP can look at today?

From the Overview


4. What is the prognosis of ME/CFS?

What is the ‘right specialist intervention’?

Where's the evidence for this improvement, PROMS?

And it conflicts with this statement under 'how else can ME/CFS impact lives?'

Inadequate care

As others have, I also wholeheartedly agree with this.

'The right specialist intervention' as defined by BACME, and pacing-up?

It’s also not safe which should be the first priority.

 

From another thread

Improving GPs’ approaches to functional somatic syndromes: a pilot training program with a focus on compassion & communication, 2025, Ariane | Science for ME

From the Consultation outcome 19 December 2024

The basics of healthcare for pwME remain exactly the same in the second module, as was the case when I was 'treated' with activity management, with a few concessions which make little difference when this gp training is taken into account. They're just polishing up their act.

But it still doesn't explain why 6 years after specialist clinic activity management treatment I was diagnosed with secondary polycythaemia of 'unknown' origin. How the hell are they going to explain away that with their MUS, FND or FSS or whatever they're calling it in the final module while they move me on from the 'search for a cause'! This delivery plan element is simply a way of formally linking it to ME/CFS.

ETC; date and for those unfamiliar with standard blood tests
Inflammation Blood Tests: ESR, CRP and PV Values

 

I never knew why those sales spiel phrases about early diagnosis and intervention have always been the hard hitting one-liners used

unless you got to one of the few specialists or medics who chose to see you as a person and take you seriously and hear you at whatever stage then your/my life got destroyed by abuse through weaponising mental health inferences or accusations sbd using those threats to force you to continually do more work or impossible loads beyond what healthy people ever had to do to ‘prove it’ and stay out of being harmed.

You just get stuck under a regime of being treated as someone no one understands other than being pathetic and unorthodox and to be messed with and to shut up when it harms you and say sorry when it does gif being worse and try harder.

sorry but all this is terrifying because it tells me the the horror , which isn’t just healthcare but is about an entire regime under which we live and are daily hurt will never end.

if no one is moving us so we don’t have a world looking to target us so that just when we are trying to find a cave to hide and rest from the last abuse (that we each time have to forgive and say ‘they didn’t know they were harming us even though they could see how it hurt us’) there is always some new strong armed bullying newbie happy to sniff us out before we’ve even had a mental break and drag us out for more forcing out of bed ‘treatment’. Or if we are doing the impossible in a gentler job to try and stay under the radar to destroy that and force us into nudge where our only option is a more physical job we can’t do without getting very quickly ill and take any stability away from us

I don’t care if this reads like some gentle little but if treatment but it isn’t. It’s not changing an attitude they want to pervade to everyone surrounding us which is of hounding us in a way no other humans get so we never have a life of peace or choices.

it’s being under a continual spotlight so we never have the freedom to just survive or be or just take what scraps the illness leaves us as options and accept them and make the best of it but to encourage those around us to burn those opportunities in order to force us into the ‘more’ they think they can require of us by leaving no other option.again unlike lazy healthy people always have those choices.

we have been treated as pawns and toys and the more destroyed we are the less protected we are

I’ve had someone’s foot on my head stopping me from ever climbing back out of where I get thrown. Instead of support to give me a chance to breath and even find a path that exists on its own tgat I could exist with, nevermind someone helping me with adjustments like another illness would have got.

I’ve spent my entire adult life under coercion with my health being actively destroyed by others bullying one way or another

the only way that changes is if you are lucky enough to have a set up where those around you are enough of a kind personality type with empathy so they can see illness and pain and who are responsible enough to take responsibility and admit they see the consequences of their actions when they happen.

I now witness things are so bad that even when their own ‘treatment’ ideology leaves someone with a body near death in agony in hospital no one learns the lesson not to rinse and repeat, turning up the dial each time. So we don’t even get quiet end of life even after a life of that brutality lest we can use that break to tell people who we actually were and get to ‘have existed’

there’s nothing more you can take from humans than going back all the way to that

at the moment and it seems in the future there is going to be nothing coming in that will change that support set up enough that those who don’t have that aren’t left thrown to the wolves because they are a sitting duck

timing might be great if you get the right person and then a team who transformed and pulled up your workplace and family to stop undermining you but or you hiding support.

But the chances of you getting that right person instead of the wrong ones which all these BACME people are, who make things worse and leave that as a legacy which lasts decades on the pwme are what matters. And at the moment a pwme is lucky if they get at some point in their life finally a short respite from the terror and horror and find one good clinician who can keep you feeling safer and somewhat remove those imminent threats wielded over our heads to force us to destroy ourselves and give up anything any human might hold precious as a hope or opportunity or human right … for a bit.

because there are so few of them.

We just need more safe doctors who will stop these people. So we have more years not being bullied and more hope we might one day reach that safeguard when we are stuck being destroyed daily by those who aren’t

and we need to minimise and reduce the number of vocal people going round claiming falsely they are experts on us based on lies and old paradigms that are debunked so they have no right.

at the moment the most vital and important thing is getting more good clinicians who understand and are of the responsible type they take on the consequences of what the outcome of their suggestions are and are noting down if eg trying to change your sleep made you worse , so stop it. Which backs just don’t have as an attitude and sorry but putting their beliefs and dead-headed ness of close your eyes while that kills someone so you can keep believing and saying ‘I’m not hurting you’ isn’t ok

we are so so far behind in basics that anyone else gets and so thrown deep into the most depraved pit left by leaving human nature to it to go at the most vulnerable we just need to increase the chances people find some safety one day at the moment

the last thing people need is this fervent BACME type being allowed to go round falsely saying without checking that ‘they are doing it fir our good’ whilst their only focus fir the last few years has been to target undoing our voice that we had for a short while and managed to start talking to normal medics and get somewhere. Their focus hasn’t professionally been on making things better for us but using naughty school playground tacticss of spreading rumours to colleagues who might treat us as humans to ensure they stop doing so and start seeing us as aliens.

and yes they do it with tactics like priming - every word we need to keep ourselves safe they tell others to ‘watch out fir’ and rumour mill it’s a red flag fir some false meaning.

I’ve been at the brunt of watching this happen both professionally as they’ve used these snark tactics to try and strong arm patients into supporting them (claiming victim if we disagree) and being on the front line with my gp and watching overnight changes in staff who id built relationships with who hit all the good physio fir me info etc and then clearly got phone calls etc from the same people using the same manipulation. And lifelines that I hoped were worth hanging on for one day being switched out for the same rhetoric and my hope being dashed I’d have any sniff of a life that wasn’t brutality one day.

I shouldn’t forgive these people because they haven’t stopped and their focus isn’t the right thing. What normal sane human being who are capable of not hounding a vulnerable group could see what they’ve done and the destruction they’ve left on the lives of some who their beliefs have meant were just targeted over and over . And instead of letting them finally have a break and a chance to live just act like children where it’s all about what they want and go straight back into old habits.

 

Stumbled across this a little while ago, published during the consultation period for the Interim Delivery Plan Sept 2023

A revitalized biopsychosocial model: core theory, research paradigms, and clinical implications - PubMed Derek Bolton
Emeritus Professor of Philosophy and Psychopathology at the Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK.

Can only access the Abstract

But here's a paper he presented 'at a conference of the Royal College of Psychiatrists, Faculty of General Adult Psychiatry Annual Conference, online, 14–15 October 2021' and published on behalf of the Royal College of Psychiatrists in August 2022.

Looking forward to a decade of the biopsychosocial model | BJPsych Bulletin | Cambridge Core

The Trial and Error series began 10 years ago.

Then I came across this article in today's Telegraph looking at the last 10 years Britain’s soaring sickness bill is leaving experts baffled

In my opinion, we're in a perfect storm, and it's a case of 'ere we go again right in front of our eyes the DHSC, the DWP, and NHS England are creating PACE-gate 2.0 particularly with the reference to FND in the healthcare training module on ME/CFS.

 

Is it still in there? Does anyone have a downloadable copy of the course?

 

Yes, Chapter 2 Assessment and Diagnosis under section titled Aligned and Overlapping Diagnostic Conditions

 

Here's a screenshot

 

I don't think FND overlaps with ME/CFS to a degree that warrants the former's inclusion in this document, and I think it's a mistake to put it in there.

Aside from PEM, there's a distinct immunological component to ME/CFS — the source of 'malaise', sore throats, tender lymph nodes, etc. This doesn't seem to be present in FND. FND seems to often involve movement issues that are not common in ME/CFS — problems with gait, spasms, paralysis, etc.

I certainly wouldn't put FND in a list of three conditions with similar presentations to ME/CFS. Dysautonomia/OI/PoTS should have been included instead.

 

It's really impressive how this is 100% textbook pseudoscience, you could teach an entire philosophy program dedicated to misinformation, pseudoscience, fashionable gullibility and the spread of myths on this. The way they describe makes it all painfully obvious. They really are acting like the crowd marveling at the emperor's new clothes, watching for any clue they can grasp about what other people are claiming to see. Never looking anywhere near the emperor, nothing to see there, just what other people are saying about what they're not seeing.

It's especially telling how the way they describe it in full awareness exposes this as a total sham, that it's a completely alternative model with zero overlap to scientific medicine.

It's really a special type of insanity. Everyone seems to have some subconscious awareness that they are all pretending like any of this holds up. They can't even come up with any credible claim about what it is or does. It's all completely based on feels and vibes. It has that quality of people suffering from delusions they are perfectly aware of. Like someone describing how there's a giant rabbit right next to them, looking straight at them, but fully aware that the rabbit is an illusion. They can wave their hands through it and so on.

They know it isn't real, and are describing it in a neutral rational way, but then go on and talk and behave as if it were. They have both conflicting beliefs at the same time, but feel zero conflict, no cognitive dissonance there. Just mindless self-delusion shared socially through a hierarchical system that enforces compliance in the beliefs.

There's even a strong comparison to Marxism, going back to whatever the inventor meant when he used words, and how to interpret them. Because this is a static ideology. It doesn't adapt or change with time, so it functions more like a religion following the commands of some luminary.

But also there's that same type of madness coming from a military commander who has to sacrifice thousands of troops and can't get emotionally conflicted about it. They just have to. Except without an actual objective in mind. They sacrifice thousands of lives on the regular, all to basically do the equivalent of holding on to a bridge to nowhere with no conflict actually going on, just pure empty sacrifice. It's truly its own unique category of madness.

 

Merged thread

https://www.e-lfh.org.uk/new-elearn...omyelitis-or-chronic-fatigue-syndrome-me-cfs/

 

• "encourage the adoption of a multidisciplinary approach to patient care" This means no single person will be accountable for the patients wellbeing . just sick of seeing this meaningless buzzword as meaningless as patient centred approach .

 

What specialities are in that multidisciplinary team matters. Its become a euphuism for a Psychologist leading some Physiotherapists as things have always been. It means nothing without defining what the diagnostics and treatment are going to be and which specialities are involved. Lacking a speciality that takes responsibility for any infection association chronic condition and that has expertise for it means there isn't anyone to drive such a team and choose the right path for a patient. Its empty words that makes it sounds like there is something real behind it when there isn't.

 

Twitter today

https://twitter.com/user/status/1886453847100678371



'1) In 2nd NHS e-module Dr Strain dutifully excuses #mecfs neglect: "Unfortunately, in the absence of proven treatments, or evidence-based interventions there are significant differences in funding for, & thus the ability to provide adequate ME/CFS services around the country"


https://twitter.com/user/status/1886454182225363086


'2) However, If you have motor neurone. disease, which does not have much in the way of treatments, you don't just get nothing. Below is what google and the nhs say about what care & support MND gets which is vastly superior to UK severe ME care & ...'

.

 

Sorry, David, but this makes no sense at all. Surely we can do better than this.
What about the problem that nearly all the services that are provided are incompetent or worse.

 

Presumably part of the problem is that here there is the assumption that the current rehabilitation model for ME/CFS services is the only option.

We have previously argued for a different doctor/specialist nurse based approach that provides general support/information and only refers on to such as OT or CBT if or when such is needed. I agree that lack of evidence based interventions might be a good argument for not doing more of the current BACME approach, and for exploring different service models.

I would agree that MND (ALS) services are increasingly designed to respond to the patients’ reality but so far ME/CFS services have been based rather on what the clinicians mistakenly believe to be true.

 

Well put.