United Kingdom: ME Association news

I remember reading about the proposed finger prick test for Alzheimer’s the other week and wondering if similar technologies could be applied to search for biomarkers in the blood of people with ME/CFS: https://www.bbc.co.uk/news/articles/cq5y85e8d2xo:
An international trial is examining whether a finger-prick blood test could be used to help diagnose Alzheimer's disease.

The study, involving 1,000 volunteers aged over 60 in the UK, US and Canada, will aim to detect biomarkers associated with the condition.
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From the BBC article (my bold):
The Bio-Hermes-002 study, external is led by the medical research charity LifeArc and the Global Alzheimer's Platform Foundation, with support from the UK Dementia Research Institute.
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The UK Dementia Research Institute is where the MEA funded ME/CFS study is based.

I appreciate that they are looking for three specific proteins (amyloid and tau) in Alzheimer's but I’m not clear how they identified those proteins as being associated with the disease. Would that have been using the ALAMAR NULISA technology that is being used for the ME/CFS study?
 
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Robert 1973 said:
I appreciate that they are looking for three specific proteins (amyloid and tau) in Alzheimer's but I’m not clear how they identified those proteins as being associated with the disease. Would that have been using the ALAMAR NULISA technology that is being used for the ME/CFS study?
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Very possibly. Zandi talked about there work being centred around a system for measuring lot of things from a tiny sample.
 
meassociation.org.uk

UK ME/CFS Biobank HHV-6 Study: Recruitment in its Final Phase - The ME Association

The HHV6 study, which is looking at the association between symptom exacerbation […]
meassociation.org.uk meassociation.org.uk

The HHV6 study, which is looking at the association between symptom exacerbation and HHV6 in people with ME/CFS, is fully underway. To date over 200 people living with ME/CFS and healthy controls have sent monthly saliva samples and completed weekly online questionnaires.

 
I think that the following post would also be useful on the implementation plan or discussion of development of services for severe ME thread - but haven't posted there yet as I'm hoping moderators can input on the best place

due specifically to the bit I will highlight in their text (but there are other points noted like medical education etc that also might be relevant to note on any relevant threads)

The following has been posted on MEA fb today:
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text coped for those who aren't on fb:
DHSC Delivery Plan:
Actions for NHS England and the Royal College of Physicians
On Monday Feb 23rd, along with some colleagues from Forward ME and clinical colleagues, I will be at a meeting with the DHSC and NHS England to discuss progress on the preparation of a clinical care pathway for people with mild and moderate ME/CFS
===============================================
From the DHSC DP
---NHS England will co-design resources for systems to improve services including the development of the template service specification for mild and moderate ME/CFS
---Work commenced, stakeholders to be engaged through a new health services sub-group of the Task and Finish Group, to seek feedback
---Engagement, drafting and testing by December 2025
---The template service specification will fully take into account
NICE guidelines on ME/CFS and be disseminated to all ICBs
to inform their commissioning decisions and support quality of local service provision to match local needs
===========================================
We will also be continuing to raise our deep concerns about the failure to include people with severe ME/CFS in this pathway and the lack of information regarding the ministerial action to create a national referral service for those with very severe ME/CFS
I will also be at a meeting later in the week at the Royal College of Physicians (RCP) to discuss another important action point from the Delivery Plan which instructed the RCP to deliver medical education material - in the form of the NHS e-learning modules-on ME/CFS to all RCP physicians
==============================================
From the DHSC DP:
--- RCP will, for now, rely on NHS England’s e-learning modules, which are considered suitable by RCP
---Aim for all RCP members to undertake the e-learning by the end of 2025
Dr Charles Shepherd
Hon Medical Adviser MEA
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The point that struck me was the wording of:
"We will also be continuing to raise our deep concerns about the failure to include people with severe ME/CFS in this pathway and the lack of information regarding the ministerial action to create a national referral service for those with very severe ME/CFS"

I might be misinterpreting this, but that 'in this pathway' for severe ME/CFS seems to be referring to "a clinical care pathway for people with mild and moderate ME/CFS"

which would mean 'including severe ME/CFS in the same pathway that isn't looking great for mild/moderate' but has even bigger concerns for severe even if was just the same, but the BACME severe document is really concerning, certainly in tone/attitude and content for certain areas
 
bobbler said:
The point that struck me was the wording of:
"We will also be continuing to raise our deep concerns about the failure to include people with severe ME/CFS in this pathway and the lack of information regarding the ministerial action to create a national referral service for those with very severe ME/CFS"
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I agree that this is of conern. AAt recent meetings I have tried to emphasise that the DHSC should focus on, and get a policy for, severe, before it even considers a mild/moderate pathway. The mild/moderate pathway looks to be based on the wrong model. I think Charles is at least to some extent in agreement on that but others appear to have accepted that we have to start with a mild/moderate plan and hope for more. One can only hope that somebody may soon see sense.
 
Is there are any reason why the midl/moderate provision shouldn't mirror other conditions where there's no treatment?

I've been through two of them (autism and lipoedema), and with mild/moderately affected people they investigate, diagnose, advise, and discharge to GP. There's an option to self-refer back to the specialist clinic if needed.

Severely affected people needing more support are likely to stay in contact with the specialist service in the longer term.

It's not ideal, but there'd be less risk of treatment harms. And physicians seeing people affected at all severities would at least start to learn about ME/CFS, especially if the starting point (made clear to patients before attending, as it is with lipoedema) is that we don't know very much about it yet so there's no treatment. I imagine that would be quite liberating for the staff involved, they could stop pretending and become curious instead.
 
Why not set up a small local-scale pilot; one that can't do nearly as much harm if things go badly wrong? Once you have a good idea of how a genuine service would actually work in practice - that's when you try to expand the model elsewhere & extend it to serve the needs of increasingly severe patients. At present no-one really has any idea how best to meet patients' needs as no genuinely supportive services appear to exist.

If the proposed mild-moderate "pathway" is BACMEesque then patient advocates & charities should reject it outright & lobby against it. Previous such bad compromises have been disastrous.
Charles Shepherd said:
I will also be at a meeting later in the week at the Royal College of Physicians (RCP) to discuss another important action point from the Delivery Plan which instructed the RCP to deliver medical education material - in the form of the NHS e-learning modules-on ME/CFS to all RCP physicians
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Is there any hope of actually improving these prior to anyone advocating for the RCP to promote them? Last time I looked at the severe module - while it had a generally very supportive mien it was nonetheless replete with unevidenced stuff (& even some potentially harmful advice in places, e.g. "prolonged anaesthesia effects and difficulty metabolising drugs. . . use lowest possible dose of anaesthetics and opioids" etc)
 
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Nightsong said:
Why not set up a small local-scale pilot; one that can't do nearly as much harm if things go badly wrong? Once you have a good idea of how a genuine service would actually work in practice - that's when you try to expand the model elsewhere & extend it to serve the needs of increasingly severe patients. At present no-one really has any idea how best to meet patients' needs as no genuinely supportive services appear to exist.

If the proposed mild-moderate "pathway" is BACMEesque then patient advocates & charities should reject it outright & lobby against it. Previous such bad compromises have been disastrous.

Is there any hope of actually improving these prior to anyone advocating for the RCP to promote them? Last time I looked at the severe module - while it had a generally very supportive mien it was nonetheless replete with unevidenced stuff (& even some potentially harmful advice in places, e.g. "prolonged anaesthesia effects and difficulty metabolising drugs. . . use lowest possible dose of anaesthetics and opioids" etc)
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I'm not sure, without a lot of detail on it, that that on its own solves anything (though there will often have to be 'a first') as I think that pilot or not it is something that can/will then be used to develop one that does harm on a larger scale and who sets it up becomes quite key as to whether it is the start of something intended to 'get buy in' by being a softened version of something bad or done by outsiders and designed to show 'results' etc.

need just as much offline gaming it through carefully before putting it on the table as a way forward as anything else?

And just provides for another delay and round of the same tactics (and more time to exhaust and lobby for the other side accepting less than before). Rather than the bigger conversation being had.

And pilots just get run by those who want said larger end, or manipulated by them because they've more energy and time to work out how to play that game, and we've seen the 'start with a compromise and then keep insisting the patients keep compromising by stomping your feet' approach since the guideline that has gone on. Now 'measures' are becoming an area of focus etc.

They can tend never to be run on a truly open-minded basis and remind me of when a designer is asked to give a number of versions of a cover or poster and you get 2 realistic and close colourways and then another 2 designed to make them look good. Method of future decisions has to be required to not be behind closed doors and really well-thought-through oversight.

I've been part of ones where there were even potentially 'innovative' or 'tailored/custom' options being tested but that year just gave time for it to run through and then no matter what the results 'involve more change than the other options (process, staff, work) and so we are going with..' even if the results show it might work better - because there are different things then being focused on at that next level (that those already doing it might sort of know - like something that doesn't work but is cheaper and faster will push the buttons of x). SO there is a lot to think about

If the default 'this is who the staff are' for anything bigger isn't also tackled then you just get to the end, discuss the pilot and then come up against the same 'but this is what we can actually roll out, and what they want to deliver' and the focus ends up being semantics in trying to make old wine look like it's what people wanted etc.

The important thing is that it has to be got right and sat in a position where it can just be contorted. And the risks and harms need to be understood and written down in order that even if miraculously something was even part way there it wasn't just used as a fop and replaced with 'new staff' a few years later and changed.

PLus any truly good new approach will absolutely start having to use a very honest wording on acknowledging that the old ideas are harmful and rude and very straightforward on what is helpful and not a convoluted hard to understand compromise that doesn't make sense and therefore knowingly leads to people on the ground either making it up and/or resorting to picking the old stuff off the web and tweaking it - apparently oblivious to how this is supposed to be getting rid of that because that is the old ideas etc (particularly tricky when in the non-ME/CFS the old wine of me/cfs is being sold as 'pyjama paralysis' and 'fnd' as if they are shiny new ideas that work for everyone) so there is a default to communicate with clarity isn't appropriate.

I'd like to brainstorm alternative offerings, what are the key bits needed to be sorted (as a list which might include needing to put notes against old material etc) but feel like a different thread would be better given MEA currently seem to have made up their mind and if a different idea is to be put forward on this thread then it would be good to do so after having played around with it and then encapsulated it as a full idea.
 
Jonathan Edwards said:
I agree that this is of conern. AAt recent meetings I have tried to emphasise that the DHSC should focus on, and get a policy for, severe, before it even considers a mild/moderate pathway. The mild/moderate pathway looks to be based on the wrong model. I think Charles is at least to some extent in agreement on that but others appear to have accepted that we have to start with a mild/moderate plan and hope for more. One can only hope that somebody may soon see sense.
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I know you know this but where is the sense of urgency? Lives are at risk.
 
bobbler said:
I think that the following post would also be useful on the implementation plan or discussion of development of services for severe ME thread - but haven't posted there yet as I'm hoping moderators can input on the best place

due specifically to the bit I will highlight in their text (but there are other points noted like medical education etc that also might be relevant to note on any relevant threads)

The following has been posted on MEA fb today:


text coped for those who aren't on fb:



The point that struck me was the wording of:
"We will also be continuing to raise our deep concerns about the failure to include people with severe ME/CFS in this pathway and the lack of information regarding the ministerial action to create a national referral service for those with very severe ME/CFS"

I might be misinterpreting this, but that 'in this pathway' for severe ME/CFS seems to be referring to "a clinical care pathway for people with mild and moderate ME/CFS"

which would mean 'including severe ME/CFS in the same pathway that isn't looking great for mild/moderate' but has even bigger concerns for severe even if was just the same, but the BACME severe document is really concerning, certainly in tone/attitude and content for certain areas
Click to expand...

OK I'm reading through the fb comments, and I thought it was worth posting this reply by CHarles to someone asking 'why were severe left out'?

"The simple answer is that we just don't know - despite having tried to find out and through our friendly MPs asking parliamentary questions. My assumption is that severe ME fell off the radar at NHS England when the DP actions were being prepared because they thought it was covered by the ministerial initiative on very severe ME/CFS.

Or because, as at present, the current referral services just cannot cope with adding severe ME/CFS to their workload as a result of problems with finding suitable staff and/or funding. Dr CS MEA."
 
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And another reply, this time to a comment about the conundrum of if it is going to be the same pathway as mild/mod with BACME then better severe isn't included:

"Yes, BACME are involved in the production process

But I believe it would be a great mistake to say that the ME/CFS referral services should not care for people with severe ME/CFS just because BACME have been involved

There are doctors like Dr Luis Nacul and the Suffolk and North East Essex Service who are caring for people with severe ME/CFS in accordance with recommendations in the NICE guideline

Dr Nacul organised a half day training session on ME/CFS last week for trainee GPs - where I gave a presentation. We had over 80 trainees present and the feedback was very positive!
It can be done!
Dr CS MEA"
 
A reply to a comment regarding why the education module on severe ME/CFS wasn't publicly accessible like the others:

"The reason I have been given is that it contains information about drug treatments that are not recommended in the NICE guideline and the powers that be feel that this could cause problems

We disagree and have argued that if this is the case the section on these drug treatments should be removed from the e-learning module
The MEA is continuing to try and get this decision reversed

Dr CS MEA"
 
MrMagoo said:
There just isn’t any other illness where the cut off for hospital bed, consultant oversight or any clinic review/management ends as you get very sick.
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Is there any other illness that doesn't have a single consultant in the entire country and the people running training are patients? That seems highly unusual but its not a surprise given how the NHS has behaved for the past 50 years. Its completely unacceptable for there not to be life saving support for the severe and to just leave them to their deaths where evidence abroad shows they can and do survive. This is negligence on a scale that needs exposing.
 
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