Update from the Windsor Castle Research Event (Action For ME)

[hotblack]

From AfME’s website:

On 3-4 March, Action for ME hosted a research event at Windsor Castle that bought together 27 international experts from different sectors. The event was made possible by a private donor and held in partnership with St George’s House, Windsor. Action for ME’s CEO, Sonya, is a fellow of the House.

You can read the full summary of the Windsor event here, which includes next steps and a list of attendees.

Opportunities for collaboration in ME research remain very limited and this event created a rare space for open discussion at a key moment: DecodeME is nearing completion and long Covid research is growing. Yet people with ME are still waiting for real progress. Urgent action is needed to respond to the growing number of people affected.

Discussions focussed on genetics, diagnosis and developing treatments, reflecting our work in the Genetics Centre of Excellence and new findings from the DecodeME and LOCOME studies.

The event enabled new connections and partnerships to be formed, and built a shared commitment to improving the quality and impact of research for ME and long Covid.

The full summary is worth a read to understand the purpose and who was there. Looks like a useful bit of bringing people together and networking.

 

[hotblack]

I looked for the Action for ME thread before posting this but couldn’t find it, and have now just seen it. Sorry, total brain fade! Please feel free to move his post as I can’t seem to delete it.

 

[Utsikt]

We are currently in discussion with several philanthropic organisations who have expressed a clear interest in collaborating and funding part of the SequenceME project.

This is nice to see! Hope it bears fruits.

 

[josepdelafuente]

Thanks for sharing! Looks promising

 

[V.R.T.]

Oh to be a fly on that wall

'While biological understanding of ME is still limited, planning for the future is essential. This includes
preparing for the delivery of potential treatments, as identified by the ME Priority Setting
Partnership.'

So many questions that can't currently be answered. Do they mean it is limited with the new genetic data or now while it is unpublished? It's interesting that they are already talking about delivery of treatments, I wonder if that's just general talk or whether there are ideas on what could work from DecodeME and other unpublished studies.

Interesting to see Alain Moreau there. I watched an interesting interview with him yesterday about his work. He seems to think he has identified an MiRNA biomarker that explains female predominance and is a drug target for around 50% of pwME iirc. I should start a thread if I have the spoons. Glad to see Danny Altmann there too as he seems to shy away from talking about MECFS when he presents on Long Covid.

Very glad this event happened, as it is precisely the sort of thing we need to push the field forward.

 

[Eleanor]

Glad to see Danny Altmann there too as he seems to shy away from talking about MECFS when he presents on Long Covid.

Maybe not any more. From the minutes of the APPG on ME and Long Covid last month:

DA discussed the ongoing impact of Long Covid and ME/CFS on millions of people in the
UK, with associated annual economic drag running into billions. He emphasised the need to
understand the pathophysiology of these conditions, which he believes can be addressed
with proper research.

Minutes for APPG meeting: 14 May - All-Party Parliamentary Group on ME

The APPG held its most recent meeting of the Parliament on Wednesday 14 March. This was the first joint-meeting with the APPG on Long Covid, also Chaired by Jo Platt MP. The Rt Hon Stephen Timms was in attendance for item 1, to outline and discuss the government’s plans to address employment and...

appgme.co.uk

 

[hotblack]

It's interesting that they are already talking about delivery of treatments, I wonder if that's just general talk or whether there are ideas on what could work from DecodeME and other unpublished studies.

I wondered about that too. PrecisionLife seem particularly focused on that aspect already, but beyond that?

Even if they don’t already have ideas about treatments it seems sensible to start talking about the pipelines. Given I’m struggling at the moment after a good spell I’m keener than ever for treatments. But who would I trust to deliver them, especially for a trial? The NHS has a long way to go to build trust. Some scientists have my/our trust but can’t care for us if there were side effects. I don’t understand enough about say PrecisionLife’s approach to have trust in what they’re offering.

It’s a topic well worth discussing ahead of time IMHO. For them and maybe us. I’d be interested in what other’s thoughts are.

 

[V.R.T.]

I wondered about that too. PrecisionLife seem particularly focused on that aspect already, but beyond that?

Even if they don’t already have ideas about treatments it seems sensible to start talking about the pipelines. Given I’m struggling at the moment after a good spell I’m keener than ever for treatments. But who would I trust to deliver them, especially for a trial? The NHS has a long way to go to build trust. Some scientists have my/our trust but can’t care for us if there were side effects. I don’t understand enough about say PrecisionLife’s approach to have trust in what they’re offering.

It’s a topic well worth discussing ahead of time IMHO. For them and maybe us. I’d be interested in what other’s thoughts are.

I think I remember JE saying a while back there were already ideas on drug targets, and some potential ones may well appear when the dust has settled on DecodeME etc. But I may be misremembering.

I have thought about this with regards to clinical trials. Because the risk of being worsened with no way to reverse is quite frightening. And in any case the anxiety over whether you have got the drug or placebo, no matter how you respond, would be quite intense for someone of my disposition. I feel best when I have a good degree of certainty. My health is bad enough I would not be able to commute for a trial. So it would have to do home visits.

And yes, who do we trust to choose the right drug, run the trial right, select the right outcome critiera not the effing CFQ. Obviously the first answer that comes to mind is Chris Ponting and his team but are drug trials in their wheelhouse, or would they pass the baton to someone else at that point?

PrecisionLife need to work on transparency to gain patient trust in terms of trials I think.

 

[Kitty]

But who would I trust to deliver them, especially for a trial?

I don't know anything about trials, but when it comes to treatment I'd want to be treated by clinicians who have experience of using the drug in question. They know what monitoring is needed, how often they need to see people, what is and isn't likely to be a side effect, etc.

It wouldn't matter if they knew little about ME/CFS at the outset. That knowledge is easier to acquire than clinical experience of prescribing particular classes of drugs and looking after the people who're taking them.