UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Oh and PS I think this is why calling it an 'illness of exclusion' rather than moving towards (certainly with better research) it being an illness focused on the concept of PEM and deterioration if consistently over threshold for exertion/stimuli etc is really important

It is one thing underlining the importance not just of differential diagnoses, but also comorbidities as these make a huge impact whether they 'cure' all the symptoms or are just reducing the added debility. But they also shouldn’t just be limited to a tiny triage list vs having a team of specialists checking open-mindedly on ALL possibilities that make sense for the patients symptoms not only taking respiratory or specific cardiac things as a pathway

given it has historically not been one that has meant people were investigated properly so I suspect has a lot of people with missed diagnoses of something that perhaps also might be more treatable at an earlier stage, and would certainly interact with ME to create an unnecessary lower threshold or downward trajectory.

But instead This cursory 'check it isn't something we do want to treat' to triage them out, rather than proper medicine of 'anything that could be noted and treated' ... well that isn't anything.

And I think the 'illness of exclusion' label is somehow allowing those commissioning and running clinics to decide 'what those exclusions are'.

And them thinking that is the only medical part of treating/managing/doing anything for the condition - because the 'concept' isn't about the condition, it's about what it isn't. Apparently (but you can still get anemia if you have ME/CFS so that list isn't accurate)

And given the end-point is a bit fat nothing then it is making everything back-to-front. A literal wastepaper basket diagnosis. Just picking out the bits/people that might be useful for recycling first.

 

Unfortunately it is so.


For this one I had concern only for the people who had their privacy taken.

Overall though this project has taken a toll on pwME, including many here most especially Trish, just the trial. Not finished yet.

But I mostly fear the consequences if this kit goes ahead and is launched. If it is used in NHS services it continues the harm of burden upon patients instead of on the professional where it belongs.

I would not consent to complete this.

To refuse is to risk a label of non compliance. I do not wish to be compliant.

But such a stand may be impossible in many cases because medical and therapy teams do not appreciate non compliance.

A new patient dependent on the system may have to fill this out and lose privacy and precious energy in order to get a good write up from the clinic, so as to get help supportive letters or medication care in the near future.

 

This already happens on our specialist clinic location in 'Waveney', Suffolk, (Norfolk & Waveney ICB).

We are Suffolk and NE Essex ICB, without Waveney Suffolk....!

*Crazy as Social Care is Strictly all Suffolk and all Norfolk administratively...

If you don't agree and comply to their programme you are discharged I have been told.

 

Yeah. Awful. This is why I am so worried about it, it’s a continuation of the exact harmful thing that we’ve been crushed by for decades.

 

I’m praying that Decode ME comes up with something which will stymie these PROMS. I really do think there should be a campaign against using them.
PROMS HARMS

 

Yeah it’s not good is it?

 

The continued attitude from Tyson to not just dismissing that feedback on long surveys and the accessibility/exclusion/harm individually to severe but also that it’s limiting validity is beyond inappropriate

this is teaching those who will use it that severe people are just whingers attitude- as long as it isn’t being tackled even by the MEA - instead of a fair safety assessment issue

I find Tyson unsafe and unable to care enough about safety/harm on this, acknowledge it, or take responsibility or even feedback that relates to injury she might cause and how it limits and skews what she is claiming to be doing to something else (because you've a filtered population who can reply).

This is very serious stuff I’m talking about. She won’t get it. Why won’t MEA? It doesn’t matter if you are harming people by GET by conversion course CFst-CBT or this combo (if it 1. gets forced on people, 2. is misinformation in itself impacting culture by saying 'severe people can fill all this in and any claims to the contrary are to be dismissed) , sadly this neglect of safety concerns being taken seriously has happened so consistently I'm concluding that she can’t be doing this. We just end up with another way to harm us that has been carefully hidden.

I find it astounding safety concerns aren’t the number one thing that get your fired and censured in some way from being near vulnerable patients. As a lay person these protections seem basic assumptions you would have a from a service using words like 'health'.

when that person just bombastically as if it's their choice whether it matters, rather than saying 'it's an issue we are taking seriously' at those flagging it they should be ashamed and in many areas I'm used to it even if they rectified it someone doing it might be worried it would be the last thing they did in their career, because of the impact on their reputation and trust etc - the moment they boo booed and everyone thought what the heck we can’t have them near those patients, look at that. So I'm as astounded as it keeps going on just being fobbed off.

I’m just astounded by the reply instead. And it’s meant she’s carried on and is even more deluded to whether it is serious or not, and emboldened because no one has required she reins her attitude in and stops choosing to be uneducated


ie she refuses to care or acknowledge, because those who hold the reins over her aren't taking it seriously, so she must be under the impression they agree? or that it's OK?

That attitude can’t be anywhere near healthcare even at the bottom when it’s someone with close oversight by a manager. Not choosing who is or isn’t represented and harmed in all the stats.


it’s exactly the mind issues we need to be removing from the sector. You don’t cherry pick and tie arms beyond back and censor unless people are saying what you want then shout and use manipulative tricks to limit who can input then claim ‘it speaks for them’ and impose it on them.

Her response must feel beyond unkind when this is gently flagged and I’m shocked her regulator doesn’t tell her off. She reckons it’s fine to potentially lumber the severe with filling out all this and puts her fingers in her ears to the impossible ness of that and how much harm it is? And there’s no point to it either

it’s like having someone being allowed to ignore a yellow card flag as long as you can find some who are milder can say it's fine.

But more to the point you can't have someone who is publicly replying this way to feedback. It's a form of silencing in itself.

 

Not sure if this is of any use,

https://pubmed.ncbi.nlm.nih.gov/24661148/ PROM re Children's Services

 

I will slowly slowly read this. Thank you!

 

I could be very wrong, but is this not part of the " shifting recovery" paradigm ( also subjective outcomes and emotional aspects take priority in a lot of this research) I think we have a thread on the paper?

 

My MEA membership is up for renewal.

To whom it may concern,

I refrain from renewing my membership. I cannot support an organisation that endorses hostile and derogatory behaviour towards patients.

The behaviour in question is that or Professor Tyson, who said, in response to assertive, solicited, constructive and critical feedback from patients:

"I am not engaging with this thread any further now. I had joined it in anticipation of a constructive, critical discussion which could help progress the project and use of measurement tools in ME. Instead, I have been met with diatribes of, frankly, hysterical projection, catastrophising, conspiracy theories, overt hostility and insults. This is the sort of nonsense that given people with ME such a bad reputation, and I have no interest in being further involved".
​

I conclude that the MEA endorses this hostile, derogatory behaviour towards patients because I have not seen a response to the letter sent by Science for ME (S4ME) in April of 2024* that demonstrates otherwise.

Full details can be found by following the link*.

With regards,

*https://www.s4me.info/threads/open-...ct-developing-proms-led-by-sarah-tyson.37937/

 

It needed saying .......thank you.

 

Thanks to Trish and Maree for the S4ME letters!

 

Not surprised.

MEA have an AGM coming in December. As a member we can vote on suggestions tabled and raise issues.

The way I see it is if they don't want to respond to us then we need to do something about that by attending the AGM and airing our grievances.

 

I agree, for strategic matters, unfortunately in this instance I feel too strongly about the lack of response to continue paying and wait for an AGM. They have been made aware of the issue, S4ME aren't a member and didn't raise it at an AGM but patients are still patients.

this post and the preceding one have been copied to the News from ME Association thread all posts about the AGM should be made there. Thanks
https://www.s4me.info/threads/united-kingdom-me-association-news.19070/page-16