UK: “Stronger Together” – ME/CFS Alliance 20th Anniversary event, The Pavillion, Winchester Cathedral, 4th March 2026: 10.30-4.00

Andy

Andy

Senior Member (Voting rights)
The Winchester-based ME/CFS Alliance, in collaboration with Professor Sir Stephen Holgate, is spearheading a symposium of UK and international scientists, clinicians, stakeholders, ME charities, ME/CFS patients, their families and supporters, to discuss the next strategic steps of ME research.

Last August, DeCodeME published ground-breaking results identifying eight genetic markers in ME sufferers that are a roadmap to the next level of research that could finally uncover the biomedical causes of the disease.

This event aims to bring together those at the forefront of ME research and build a network that can accelerate making ME and Long Covid a strategic priority in the UK.

Through presentations, discussion and workshops, we will look at the vital work being done right now, and the next steps needed to urge the UK government to fund further research into this debilitating condition.

We are delighted to have presentations from:-

Prof. Sir Stephen Holgate, Professor of Immunopharmacology, University of Southampton
Prof. Chris Ponting, Chair of Medical Bioinformatics, University of Edinburgh
Prof. Danny Altmann, Professor of Immunology, Imperial College London Prof. Nisreen Alwen
Professor of Public Health, University of Southampton Dr. Stephen Gardener, CEO of Precision Life

Dr. Karl Morten – Oxford University
Dr Carmen Scheibenbogen, Immunologist at the University of Berlin
Dr Rob Wust, from the Netherlands, presenting his research on mitochondria
Dr Nancy Klimas, Director of Neuro Immune Medicine and Clinical Research Miami

Ticket price (including lunch & prize draw) £25 Concessions £20 (disabled & low income)

For tickets & further information please email info@mecfsalliance.org.uk

Kindest regards

Opal Webster-Philp (Chair)

ME/CFS Alliance website
 
Existing thread for the ME/CFS Alliance,
Dolphin

Thread 'ME/CFS Alliance (UK)'

I wasn’t sure where to post this.

“Will, who plays off a handicap of five, is set to play 100 holes at the Bridport and West Dorset Golf Course on Wednesday, 31st May for two great causes – the ME Association’s Ramsay Research Fund and Opal Webster-Philp’s South Coast-based ME/CFS Alliance.”
https://meassociation.org.uk/2023/0...-eat-his-greens-for-m-e-research-on-31st-may/

Website:
https://mecfsalliance.org.uk/
  • Like
 
“spearhead

/ˈspɪəhɛd/

verb
gerund or present participle: spearheading
lead (an attack or movement)”

Professor Sir Stephen Holgate, is spearheading a symposium of UK and international scientists, clinicians, stakeholders, ME charities, ME/CFS patients, their families and supporters, to discuss the next strategic steps of ME research.
Click to expand...

Professor Stephen Holgate and his supporters might see him as a mover and shaker, but from my perspective, "his era" ,a period of conferences /collaboration with the MRC, was also big tent inclusion of the BPS crew & a fatigue focus, with wider patient input delayed until 2018-20. The ambition, seeming to stretch over decades, did not reflect the urgent need of those more severe, and there was an acceptance of “poor terms” offered, with the emphasis on collaboration vs confrontation. I’d thought age perhaps explained this, but saw 2020 SH was an innovator in the LC/ asthma Field.

Progress in genetics aside, the continuing unacceptable gvt stance & UK research funding position arguably reflects problems stretching back to 2003 that weren't well challenged. The ME/cfs alliance commemorates an anniversary of 20 years of “activity” but SOME severe have lost 20 years in bed, with progress that everyone agrees has been too little, IMO this calls into question the "agreed upon" UK underlying approach/strategy.


UK: “Stronger Together”
Click to expand...
The 2 UK LC researchers previously little acknowledged the m.e overlap with LC. Presumably, realisation of general indifference towards IACC/ PVSF, has prompted reluctant collaboration. Maybe they hope they can win over the gvt with the still novel angle of m.e and LC researchers coming together, as LC resources wane. However, both of the recently refused significant research proposals - the Hub & sequenceME - were for LC/m.e

"This event aims to bring together those at the forefront of ME research and build a network that can accelerate making ME and Long Covid a strategic priority in the UK."
Click to expand...
They might see this as building blocks but it looks like drawing a new starting line to “build up” from. Will including LC be enough to radically change things?
This is in a context of m.e is still being largely untaught properly & no requirement for senior drs to partake in the care of the more seriously ill to motivate activity. We also literally have just had 3 years of too unfruitful talks, including LC voices, with funders & gvt that yielded a continuing flat rejection to respond more urgently & robustly to meet m.e needs .
Unlike LC, people with m.e can be at the end of years of battle, not in the position to see things as “starts” and if this is working according to an MRC timeframe of 2025-29, infrastructure building, ‘29 possible “launch” - I find the MRC “vision” & timeframe unacceptable.

If they aspire, again, to generate more UK research applications, as the MRC demands, will it be much more successful than other conferences going back to 2006, with the same aim, without incentivising funding to overcome the known barriers?

Gathering researchers, even if including people innovating abroad &even if its creates discussions /collaborations, surely faces the same resistance to the upgrade of funding, as the similar recent showcase and previous CMRC conferences. I have concerns of playing the same hand and hoping the cards deliver a better result,,,

"and the next steps needed to urge the UK government to fund further research into this debilitating condition."
Click to expand...

It is good they are wanting to urge “more” - it will be interesting to see what is proposed as "next steps" to end the considered low prioritisation of m.e,. In my view, it will require a radically different approach & level of campaigning from our charities than the past twenty years, *in addition to* winning funds via innovative scientific collaborations - both Holland and Germany have far exceeded UK in organised activism & it could be seen as the missing link.

Summary: I can't see SH as a spearheader in this field. Obviously meetings/collaborations of researchers is good if they think it will be helpful to share ideas, build networks and from there…..
I would question whether this can meet an objective of securing fitting prioritisation, funding and a strategy with urgency for m.e without charities stepping up the pressure that orgs usually apply to drive change.

Edited to order paragraphs better & added in about aligning with MRC plans & “known barrier” & adjusted a couple of wordings.
 
Last edited:
Andy said:
BBC article: 'Support demanded to accelerate chronic fatigue research'
Click to expand...
I know, because I have sent the BBC (and will again today) letters on prior events. They know that chronic fatigue is a symptom and not the name of the disease and can not be used in titles like this. I have repeatedly complained about this after the past few years as I know have many others. But given I know they know this because I have sent them many letters I also know the dismissing title is wholy intentional on the part of the BBC.
 
BrightCandle said:
I know, because I have sent the BBC (and will again today) letters on prior events. They know that chronic fatigue is a symptom and not the name of the disease and can not be used in titles like this. I have repeatedly complained about this after the past few years as I know have many others. But given I know they know this because I have sent them many letters I also know the dismissing title is wholy intentional on the part of the BBC.
Click to expand...
It's so unbelieveably frustrating. I have sent many emails over the years. I have sent another one. I imagine the more they get the more likely a change to the title.
 
Andy said:
BBC article: 'Support demanded to accelerate chronic fatigue research'
Click to expand...
This article states: “Previous BBC reports show more than two million people in the UK have Long Covid and about 390,000 are affected by ME/CFS”

hotblack said:
The BBS South Today video for this was posted by @Adam pwme too
Click to expand...

This begins “more than a million people in the UK are living with ME/CFS”

Tessa Munt’s #ThereForME blog begins:
I want to start by thanking all in the ME community who have encouraged me in my fight for proper provision for the estimated 1.35 million people living with ME nationwide.
Click to expand...

The blog links to an AfME page which states:
Latest research from Professor Chris Ponting and Gemma Samms at the University of Edinburgh estimates that 404,000 people in the UK have ME/CFS (0.6% of children and adults in the UK).

Further research estimates around 50% of the 1.9 million people in the UK with long Covid are also thought to have symptoms that are very similar to ME, including post-exertional malaise, the hallmark symptom of ME.

Therefore, we estimate there are up to 1.35 million people in the UK with ME or ME-like symptoms.
Click to expand...

I’ve not managed to keep up with all developments and discussions. Is there any consensus about which is the most reliable estimate?

It would be helpful if most organisations and advocates were using the same estimates – or highlighting the uncertainty and the reasons for that uncertainty. As well as the need for consistency, I’m concerned that overestimating the prevalence may be counterproductive.
 
Titles on YouTube videos often change during the first day or three, particularly on the high traffic, more commercially oriented channels.

The channel owners typically try a few different titles to see which one gets the most views and go with that.

Not all channels do this.
 
hotblack said:
The BBC South Today video for this was posted by @Adam pwme too
Click to expand...

I was disappointed that Chris Ponting said that we were "At the cusp now..."

This is the term used by so many researchers to argue for so many studies into so many illnesses when trying to get more funding. In this case I think that it is more justified than usual, but it is used too much, and often for really bad research. It rarely translates into genuine findings and treatment.
 
MeSci said:
I was disappointed that Chris Ponting said that we were "At the cusp now..."

This is the term used by so many researchers to argue for so many studies into so many illnesses when trying to get more funding. In this case I think that it is more justified than usual, but it is used too much, and often for really bad research. It rarely translates into genuine findings and treatment.
Click to expand...
I understand your reservations but to me it felt reassuring that Ponting feels that way, as he is generally very measured in what he says, I think in deliberate contrast to other researchers who have promised far too much.
 
Hopefully some good will come out of this, although I confess to being a little troubled by some of the materials put out by the "ME/CFS Alliance". For example, in their declared aims (link):
To develop awareness and understanding of ME/CFS and associated conditions, e.g. Fibromyalgia, Gulf War Syndrome, Post Traumatic Stress Disorder and possibly now Long-Covid.
Click to expand...
I see no robust evidence that these conditions are associated, & especially not with PTSD. And amongst their physician advisers (link) is a rheumatologist who apparently:
has a biomechanical interest in physical lifestyle as a major and critical component in the prolongation of active life and strongly endorses the current trend for engineering good lifestyles in an ergonomic way which formed part of his approach to Fibromyalgia , managing chronic pain and sleep disturbance
Click to expand...
That is precisely the kind of approach that we do not need.

Back in 2025 the charities apparently agreed amongst themselves to alter the long-standing prevalence estimates for ME/CFS solely based on the Samms/Ponting review of ICD-10 G93.3 diagnoses in secondary care from NHS HES statistics (if I recall correctly they extrapolated from Cornwall/Isles of Scilly ICB data which showed the highest point prevalence). Why the charities did this I have no idea; while it was an genuinely interesting and useful study I do not think that it alone constitutes sufficient evidence to upend the previous long-standing prevalence estimate given the scope of diagnostic uncertainty, the lack of information as to how the G93.3 code is used in practice in secondary care and the potential for regional or geographic variation due to factors other than differing diagnostic practices.

There is also no evidence that ME/CFS is associated with episodes of paralysis, as a patient apparently associated with this conference claimed in the BBC news segment. This kind of confusion with other distinct conditions remains as counterproductive as ever.
 
Even the video here is an odd mix, in that it talks of some quite severe symptoms and yet also the people are up to interviews, out in the world, walking around, in the garden in a wheelchair. Many would love to do those things!

There seems to be a lack of representation of severe (and certainly very severe) in the media, research and medical literature. I think it gives people of all backgrounds and roles a distorted idea of what the condition is or can be for so many. I’m not sure how we can change that.
 
You must log in or register to reply here.
Back
Top Bottom