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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