Peter W 🇺🇦

@MartaCamici @andreaantinori Congratulations and thank you for raising this major issue in parliament.

Today at the Italian Senate for a Long COVID event I had the privilege of scientifically directing together with @andreaantinori. Structured care pathways, multidisciplinary expertise, stronger institutional support, and dedicated resources are needed. #INMI #longCOVID

One of the most exciting aspects of the new SequenceME & Long Covid study is its use of long-read genomic sequencing. This technology from @nanopore gives researchers the ability to examine the genome with far greater depth and resolution, capturing structural variation, repeat expansions, and other complex genomic features across the full genome. The UK's landmark ￡4.75M investment has enabled long-read sequencing of 6,000 samples which adds to statistical scale and depth. For #MECFS and #LongCOVID, this creates an meaningful opportunity to uncover entirely new layers of biology, identify meaningful biologic subgroups, and accelerate the path toward targeted therapeutics. @CODA_research is proud to have provided early support of this work and its vision for deeper biologic discovery, alongside SILC, @PlzSolveCFS & @weandmecfs. With @actionforme @SonyaChowdhury @DecodeMEstudy and Professor Chris Ponting continuing to push out in front on behalf of patients, this is a highly important collaborative initiative. mecfsresearchreview.me/2026/05/12/dna…

@Squashedhedgi @actionforme @DecodeMEstudy This is on a single-year basis. Obviously the question is whether that can be maintained. But this year a milestone which would have seemed unlikely a few years ago has been achieved, and that is something to be celebrated in my view.

@mediumwhite @actionforme @DecodeMEstudy Parkinson’s received £70m 2019-24, £15m / year (gvt stats) from UK state + £Ms charity funding. How is there parity? more money than usual, but the lump sums are to cover multi year projects?

A few years ago we collected some data showing the difference in funding across diseases. We argued that ME should target "Parity with Parkinson's". That seemed wildly ambitious, but with today's SequenceME news, @actionforme and @DecodeMEstudy have achieved it for 2026.

The politicisation of responses to the Zack Polanski tax findings are very unimpressive. Attacking Dan Neidle for pointing out the issue is daft and undermines the credibility of his supporters. Zack Polanski's response was the right one: accept the reality and pay the dues.

This is only one year, so there is much to do to maintain momentum - that will require lots of work by the charities and research groups to engage others scientists. But I do think we should recognise the step forward.

As well as hope for better understanding of the disease, it also means there are more people funded to talk about it, who have credibility with the media and can present the physiological reality of ME. That is a major advance, and worth celebrating this #MEAwarenessDay

@lonnibesancon @MicrobiomDigest @SciGuardians Oh, in that case - wonderful news that is is crashing and burning.

@mediumwhite @MicrobiomDigest @SciGuardians It’s really not. They want a version of pubpeer that defends fraudsters

The @SciGuardians website appears to be struggling to build a community. After an initial burst of activity, the number of commented papers dropped sharply and has remained relatively low for the last months. Analysis based on ~870 commented papers listed on the site.

Today we must celebrate the wonderful news that a major phase of SequenceME has been funded. But in a few days' time, lets chat about the ill-considered contribution by one 'N Riley', and remind ourselves of the importance of charity trustee time-limits.

@cstroeckw I saw from the Action for ME communication that WE&ME supported this. Huge thanks. This is massive.

Incredibly good news for ME/CFS! Extremely sensible funding for the follow-up project to DecodeME. Congratulations to everyone involved, and thank you to all the patients, researchers, advocates, and supporters who helped make this possible. 🙏

The SequenceME funding news is massive! 🙌🙌🥂🥂🥳🥳 Congratulations to @DecodeMEstudy and @actionforme for achieving this enormous achievement! And huge thanks to the donors, which include @PlzSolveCFS and WE&ME. actionforme.org.uk/major-funding-…

@Yucomi1 @JohnJoOnHumber @archer_rs At Town and Parish level they don’t even get that. The Borough level used to be £4k / year.

@JohnJoOnHumber @archer_rs An allowance. It’s not a salary.

Apparently a newly elected Reform councillor just discovered, live on air, that the position is unpaid. I'm told he said, "Well bugger that for a game of soldiers" and promptly walked out of the interview.

@Petecoley @JohnJoOnHumber @archer_rs Town and parish councillors never get an allowance. When I was councillor I never saw anyone claim much in the way of expenses apart from training costs.

@JohnJoOnHumber @archer_rs Whilst I agree that councillors do generally get an allowance, I think that some parish councils only reimburse expenses and the role of parish councillor, in those cases is purely voluntary

@JohnJoOnHumber @archer_rs Town and parish councillors *do not* get paid an allowance. At borough level the allowance in my area was ~£330 / month which had to cover many expenses. Some people drove an hour each way to get to meetings.

@archer_rs Councillors in the UK do get paid an allowance, so, sadly, this is duff info.

@cfs_jo After their journey they went to a swinger’s party and licked everyone.

@mediumwhite Bet it’s not far off

Great 😬 How did they get home?

@MEAssociation I think this is very poorly judged @MEAssociation, I don’t know where the idea came from, but there needs to be a review of what whoever came up with this thinks are the organisation’s objectives, and they need to be corrected. The MEA is not a dementia care centre.