Midline Glioma – research fundraiser

UPDATE: December 2021 – Exceeded 100k! Research has already been funded from your donations, so thank you!

UPDATE: Emily was hoping to reach her target by Xmas Day, she went storming past that number on the 23rd December – £50615 raised from just over 1700 donors, which is fantastic. She originally set 10k as a target, then moved it up to 25k, passed that and moved it to 50k, which is when I first mentioned the cause here, on Twitter, and on Facebook. She was at the half way to the 50k at that point just over a week ago. Hopefully, we can draw in more donations from a few of my followers. Thank you! Keep those donations coming in.

Diffuse Midline Glioma, H3 K27M Mutation is not a phrase you want to hear from a doctor. It’s a type of tumour that most commonly affects people under about the age of 25 years but over 3 years. It’s very rare – 100 people in the UK annually – but always lethal, sadly. The tumour grows rapidly within the Central Nervous System and has a devastating effect on the spinal cord or the brain depending on precisely where it grows.

I must admit I’d heard of spinal tumours, but don’t think I’d heard this full phrase until a friend posted about it on social media as their daughter had started a fundraiser to raise funds for research. Emily passed her initial fundraising target quite quickly and has upped the ante, now aiming for £50000. She’s more than halfway there with well over 1000 donations so far. Sciencebase is happy to give this worthy cause a mention in the hope that a few readers take her plea to heart.

I’ve written generally about rare diseases several times over the years and how they are often neglected by mainstream medical research and the pharma industry because by definition they each only affect a small number of people. Of course, there are many, many rare diseases and the total numbers of people that are affected are large. At the other end of the scale though, is often a terrible tale of someone afflicted by something rare and untreatable, which is precisely why we need to raise funds for the individual cases. So, here’s the link to Emily’s JustGiving page. Please dig deep, as they say.

Vaccination NOW

TL:DR – At the time of writing, vaccination of COVID-19 was getting underway. It is still highly recommended despite the disinformation, fake news, and conspiracy theories.


In a few month’s time, the first 10 million people will have been vaccinated against covid. Within two months, 4000 of those people will have a heart attack, 4000 will have a stroke, 10000 will be diagnosed with cancer, 14000 will die.

How many of those illnesses and deaths will be due to the vaccination? None of them.

But, the antivaxxers will start to claim some of those 4000 strokes, those 10000 cancers, those 14000 deaths as being caused by the vaccine. They will be wrong to do so. Why, because if we were to start counting 10 million people from today, none of them yet vaccinated against covid, within two months, 4000 of those people will have a heart attack, 4000 will have a stroke, 10000 will be diagnosed with cancer, 14000 will die.

If you know 100 people of all different ages and demographics, then one of them will have a heart attack within the next four years, one of them will have a stroke in that time, a couple of them will be diagnosed with cancer, and in those same four years, 2-3 will actually die. That’s the statistics. If you’re one of somebody else’s 100 friends, then you could be in any of those groups. This is the normal of life, disease, and death.

In the new-normal of the covid world, we need as many people as possible to be vaccinated to quash the spread of this new virus, otherwise there will be much bigger numbers to record in all of the above.

Drug discovery scientist Derek Lowe has much more to say on this topic having built on a twitter thread from Bob Wachter (Chair, University of California San Francisco Department of Medicine).

Of course, once we’re vaccinating millions of people, there will be some side effects and there will be some effects that arise that might be caused by the vaccine or just other random effects of the human condition. The fact is though, that the morbidity and mortality rates for covid will far outstrip any side effects of adverse reactions seen in the people who get the vaccine, this much is true from the trials of thousands of people who have been tested with the vaccine already.

The antivax movement will jump on every disease, every death gleefully proclaiming that the vaccine is to blame. But, 14000 in every ten million people would die in any random two month period before we’d even heard of covid. Now, that we have covid with us that is an extra cause of death to add to our terminal list. Vaccination will minimise those extra deaths, so that hopefully none of us will lose too many of our 100 friends to this dreadful disease.

Beyond Covid – the next pandemic

I’ve been talking about this for years…since I first wrote about pandemics in New Scientist in 1997 and then in more depth for the Royal Society of London in the wake of SARS, in January 2004, in fact. It’s worrying…we are always on the verge of a new pandemic. Until Covid-19, we’d managed to get on top of them largely. But, the next emergent pathogen could be far more virulent and far more deadly than SARS-CoV2, the virus that causes Covid-19.

Map of ‘red-alert’ zones. Bigger circles, greater risk. (Credit: Michael Walsh, University of Sydney)

Now, an international team of researchers has shown for the first time where people consistently interact with wildlife and where this overlaps with poor human health outcomes and highly globalised cities. 40% of the world’s most connected cities are close to areas of impactful spillover, say the researchers. The presence of such hotspots will almost inevitably give rise to a major pandemic unless preventative measures are taken urgently.

Details are published in the journal One Health.

Word confusle

Many years ago, the ceiling lights failed in our kitchen. They were relatively new devices, installed when we had the kitchen updated from the tatty 1970s awfulness we moved to in the late 1990s. Anyway, I phoned the kitchen company and mistakenly said the word “bathroom” when I meant to say “kitchen” in referring to the lights and requesting that they remedy the problem. It took a bit of explaining and I still don’t know why my brain did that.

It still happens occasionally in conversation, I’ll interchange kitchen and bathroom. I’ve noticed I’ve done it with the words shed and garage too…and this morning…just now…panier and hamper.

Is this a brain glitch that comes with middle age? The pairs of words I inadvertently switch are in the same clades. Kitchens and bathrooms are functional/utility rooms, after all. Sheds and garages are external storage buildings. Paniers and hampers are portable basket-type containers. I’m sure there have been other examples over the last ten years or so.

Anyone else? Just me?

 

Free Covid-19, SARS-CoV-2 course

I mentioned elsewhere that MIT is offering a free online course for anyone interested in learning more about Covid-19 and SARS-CoV-2. You can watch them live or grab the Youtube clips each week. The first lecture offers and excellent summary of our knowledge regarding this emergent pandemic disease as well as looking back briefly at previous viruses, such as previous coronavirus threats SARS and MERS, as well as the retrovirus HIV.

The lecture also cautions that we must remain vigilant about future viruses, which are a significant existential threat for the human race (as I wrote in New Scientist in 1997). A virus with the high mortality rate of MERS and the high transmissibility of Covid-19 would lead to a far more devastating pandemic.

You can watch the first lecture below from Bruce Walker of the Ragon Institute of MGH, MIT and Harvard, but please do sign up for the course on the MIT website linked from the video page

Here’s my basic summary of Walker’s points:

  • The virus emerged at the end of 2019 in Wuhan, China, it most likely was a virus from bats that passed to pangolins and back to bats and then became infectious to humans.
  • Unlike previous coronavirus threats, the Covid-19 virus is highly infectious several days before symptoms appear
  • Wearing a mask should be obligatory in most indoor and some outdoor settings, along with social distancing and regular handwashing. Adhering to these measures even if they “infringe” on one’s personal liberties can slow the spread of the disease
  • Research is advancing faster than with any earlier disease, but we have a lot to learn
  • Spot test kits could soon be with us
  • People can be reinfected as their antibodies following infection dwindle in numbers as the weeks go by
  • Vaccines will give stronger protection than natural immunity
  • The most promising of the dozens of vaccines being tested may need three doses over six months to be effective
  • Scientists are working on new drugs and repurposing old drugs as treatments for the disease, some have been successful in severe cases
  • Getting the world’s billions of people vaccinated is going to be difficult to say the least

Timing social distancing to protect people and hospitals

COVID-19 lockdown and hospital surges

A new study suggests that for major cities it would help avoid catastrophoic overloading of hospitals, if local lockdown measures are reinstated when the seven-day average of hospital admissions goes above a certain number. The lockdown would be eased when the admission rate falls of when the hospitals are below 60% of capacity.

This would minimize economic and social disruption but at the same time protect health services.

One proviso is that high-risk populations must be shielded adequately during the times when the city is not in lockdown.

“Timing social distancing to avert unmanageable COVID-19 hospital surges” – Proc Natl Acad Sci

The recency illusion

I was caught out by the recency illusion today. A friend posted a video of a spider weaving its web. I added a comment about research I’d read about when I was writing for the New Scientist in the early 1990s where the scientists showed that plying a spider with different stimulants, such as caffeine and cocaine, or other drugs such as cannabis, led them to produce weird and wonderful alternative web patterns. I revised my comment because I then remembered reading about that research when I was at university in the 1980s.

I commented that in my 30+ years as a science writer I reckon I’d seen a lot of research reinvented, not for the sake of reproducibility tests, but simply where the researchers hadn’t realised that the work had been done before. It’s happened several times over the last couple of years and makes me seriously think it’s time I retired, hah!

Anyway, I looked on PubMed to find that distorted spider’s web research and found a paper from 2004, yes, well that proved my point. But, then I found a paper from 1969 and a review of the area from 1971…so it had already been done before I even started school let alone reached university. I went to the 1971 review’s reference section and it cites papers from the 1950s long before I was born and my parents hadn’t even met!

The term “recency illusion” was coined by Stanford linguist Arnold Zwicky, to refer to one’s perception that words, meanings, phrases, and grammatical constructions are new at the time you first hear them. They generally aren’t. There are many examples of what lots of people think of as modern phrases that can be found in Shakespeare, for instance. Zwicky later defined the illusion as “the belief that things you have noticed only recently are in fact recent.” As in wondrous webs made by spiders on crack…

Coming out of Covid lockdown, I don’t think so…

Fundamentally, we are still riding (just) the first wave of the global Covid-19 pandemic. If there are sudden spikes now, that’s still part of the first wave. Nothing has changed for the virus except that some people have been avoiding contact with other people, so the rates of infection in some places have slowed giving health services a bit of space to mop up and treated those seriously ill with the virus. But, at the time of writing half a million people, at least, have died from Covid-19.

I don’t really know how I feel about this coming out of lockdown, to be honest. I suspect that having asthma and being in my 50s might make me more susceptible to being badly symptomatic with the coronavirus. Colds lay me out sometimes for weeks. But, there are far worse off people.

The infection rate is very low in our neighbourhood, and indeed in our county as a whole, 51 in a million people infected as opposed to well over 140 in a million in Leicester, where a local lockdown has been implemented to try and reduce this number before it ravages the population there.

I run a website and social media for a local pub. They’ve announced that rather than open on the 4th July when they have permission to start serving again, they will open on Monday the 6th to allow them to ease into the week. It will be incredibly busy, people will feel unleashed and gasping for a pint. But, to my mind, it only takes one infected person to cough in your face to almost guarantee that you’ll inhale virus…and so I’ll be giving the pub I love a miss, at least for the foreseeable future.

I’ve hated lockdown, hated the lack of social life, hated the fact that it’s effectively dragging us down into a serious recession. I’ve tried to jolly along with lots of silly creative ideas such as my PondWatch series, spoof/satirical phonecall videos, Rock-around-the-Wok cooking with music, writing and recording some of my own songs, and creating a VE Day 75 video with various local singers and performers (all done remotely). Getting back together with C5 The Band for a socially distanced rehearsal last week and a trip to the coast with Mrs Sciencebase were much needed tonics as were sitting at a distance drinking at and chatting with some friends in their garden. My mood is nowhere near as swing low as it was two weeks ago, thankfully. I also got hold of a Canon 7D mk ii, which has made bird photography a joy once again with a much faster focusing capacity and the virtual upgrade in zoom lens from 600mm to 900mm by virtue of moving from the 6D full-frame to 2/3 of the 7D.

There was talk this morning of a secondary type vaccine that won’t stop you becoming infected but may well keep you asymptomatic. A normal vaccine would aim to block infection, but this might not be possible for coronaviruses. If that’s developed sooner than later we could all get back to something like a new-normal situation far quicker than we otherwise might, but it’s possible it won’t be ready until next year. We’ve got the coming flu season to get through before then too! There are a couple of drugs that seem to be working for seriously ill patients, which is a good thing, but I’d rather not have to be in such a state that I’d need either, thank you very much.

So…the long and short of it: Will I be going to the pub next Monday? No!

All masked up and nowhere to go

With my blessing, the marvellous Mrs Sciencebase took one of my gig shirts and cut it into pieces, found a PPE mask template online folded and stitched, embedded a layer of silk and created a pocket for an additional filter. I can’t feel my breath through this when breathing hard so I assume it would work to reduce outflow of any viral-laden particles should I ever go out in public again.

Incidentally, it’s a good idea to make your mask with two different types of fabric, a tightly-woven cotton layer will catch most wannabe aerosol droplets from nose or mouth and they will be soaked up into the fabric. A synthetic, chiffon, or silk layer will act as an electrostatic and additional physical barrier to any smaller particles or droplets that might otherwise sneak through. Of course, any mask is only as useful as you are hygienic in your use of it, you must put it in place and leave it there for the duration of your time in relative close proximity to other people. You must also remember to wash your hands frequently and certainly before and after mask use.

Despite the claims from governments about it being safe to reduce social distancing, ending lockdown for the sake of the economy, re-opening non-essential shops, and getting people back to school and back to work, the virus has not changed, it has not suddenly gone away. The whole pandemic started with one infected person. It could cascade again and while we may have a better insight into how to control it with track and trace, social distancing, and homemade PPE, there are still huge risks to it taking many more lives in the months and years to come. Don’t risk it. Stay safe, stay well.

Was Covid-19 lockdown the right thing to do?

What do Sciencebase readers make of the view that there will far more long-term excess deaths and misery caused by the global lockdowns than there would have been had we let this coronavirus run free? This question is about estimating the serious long-term effects rather than giving those covidiots who fancy a trip to the beach or Barnard Castle an excuse to run wild and party. It is being discussed widely by many lockdown skeptics, including very well-respected scientists such as Mark Changizi.

Obviously allowing the virus to run free would have meant overwhelming our healthcare services and there’d have been many more acute tragedies around the world. But, in the long-term the economic and social damage will ultimately lead to greater levels of suffering on a much wider scale. Ultimately, there will be many more excess deaths some argue*. This will be partly due to delayed diagnosis and treatments that will be available to everyone “after” Covid-19. It will also be partly due to mental health problems that emerge leading to an increased suicide rate caused by the loss of employment, companies collapsing, and the general negative effects of the “new normal”.

*News in today suggests that the death rate in France is the lowest it’s been for several years even when compared to a bad flu year.

Personally, I believe lockdown is the right thing to do for the sake of the more vulnerable and to avoid that overwhelming of the healthcare systems. We can try to face the issues that emerge post-Covid as they arise.