mediumwhite.bsky.social
Europhile 🏳️🌈, lived in 🇬🇧🇮🇹🇨🇼🇧🇪 🇧🇩. Dedicated follower of science. Former textile engineer, now a Mgmt consultant. I believe in believing people.
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Frustratingly the Medical Research Council and National Institute of Health Research are barely spending anything on researching the condition.
Prof @daltmann.bsky.social has spoken publicly about the funding agency’s disinterest, but still things are not changing.
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Closure of Columbia's ME/CFS Research Center will slow understanding of this terrible disease & progress towards effective therapies. This decision disproportionately affects women & some of the most vulnerable in society. It would've been a privilege to work alongside Ian Lipkin.
#pwME #ME #CFS
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I have known Stephen for 4 years on SM. He is (was) an NHS radiologist but was disabled by ME/CFS due to LongCovid.
He is now mostly bed bound.
If he cannot access PIP, what will happen to him?
I think we know the answer, we just don’t want to write it down.
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Great - but perhaps there may be a better graphical style than that used on Severance?
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Presumably the @meassociation.bsky.social is organising a campaign around this hugely important issue?
Perhaps we can use the materials they have made on the topic?
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Glad you’ll still be writing.
Given the move to the FT, will you still be reviewing such a broad range of places (including price range)?
And if the place is decorated in “fuck you”, will they FT let you say so?
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Hi Professor - you previously raised concerns about UKRI:MRC / NIHR lack of interest in funding LC studies. Have you seen any change in that?
A bunch of us wrote to DHSC in the context of funding for the ME/CFS delivery plan, but they appear to be in denial about issues. Any changes?
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I do think we have to recognise that the inevitable will come, but we should be able to manage our ‘true’ allies in the meantime.
Those Allies should be big enough to accept that we will not just jump off a cliff out of solidarity with those who have been pushed off it.
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I suspect he will, but every month this is pushed back is 2% of Trump’s presidency overcome.
Push it back for a year and we avoid 25% of the damage.
Kicking the can down the road is not always a bad strategy.
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Sad situation, but I agree 100%.
This is why the EU is launching its own Galileo GPS system.
But it is shocking to have come to this.
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Facts are indeed facts - since the start of the covid pandemic, the prevalence of ME/CFS has increased to 2.66%...
The opinion shared on that website does not appear to be supported by evidence.
link.springer.com/article/10.1...
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In the end the proof is in the pudding, and we will be able to measure the success of the new brand through the organisation's future fundraising (KPIs: total income growth, income/fundraising cost (ROI), and in-year donations).
I hope they continue to grow. I fear they won't.
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Here's a report on the new branding, and the people which did it.
fundraising.co.uk/2025/01/15/p...
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I have no doubt that Parkinson's is a significant, important and deserpate condition with significant need for research...
But I suspect people with LongCovid and ME/CFS may challenge the idea that it is the fastest growing neurological condition in the world.
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Most organisation's logos are just a name in a font: Sainsbury's, Waitrose, Goldman Sachs, BHP, JP Morgan, Next, Virgin, Zara, Jeep, CocaCola...
The strapline was a part of the logo and, I thought, was a powerful commitment to what they were about.
I associate a flower with death... 😕
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To be fair to them, they are the largest funder of Parkinson's research in the UK.
That it hasn't resulted in any therapies is very frustrating, but medical research can be incredibly low.
I would say that compared to some other medical charities, Parkinson's UK appear a high performer.
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I thought Parkinson's UK was about driving change for people and families with the disease?
But flowers are associated with the dead - we give flowers at funerals, we put flowers on graves.
Are they now just 'accepting the inevitable'?
I really hope this isn't a step backwards.
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There is a story about the flower - apparently it was named after the person who identified Parkinson's disease.
But a logo should be instant! It should communicate fast! Who has time to think and interpret the artwork?
If you have to explain the logo, then it has failed.
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Again, my view does not matter, but repacing such an important mission statement with a flower just feels to me like you're giving up.
It has the visual impact of "thoughts and prayers".
"Sorry we can't help you. Have a flower to feel better".
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What I liked most about the old logo was it's energy. It was punchy!
That logo showed an organisation with a mission so important that it was stamped EVERYWHERE!
I wish. I WISH that there were an ME charity with such a clear mission. Perhaps "Solve ME" gets close?
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Also worth noting that around half the funding for ME (the bar in 2020) was for 1 study: DecodeME.
To get that funding, the team had to follow a special process - it didn’t come through usual MRC/NIHR funding route.
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Thanks for sharing this. Also quick shout-out to Anatol and Simon who helped with this analysis.
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Oh christ.
So she wants us to return to the dark ages now? Soviet Russia?
It’s all very well criticising the status-quo, but critics needs to present a viable alternative.
Destroying the status-quo, without a plan for anything better, is not going to help anybody.