Harmful Misinformation

Two threads - one from a retired doctor on deducing misinformation and one from a current doctor frustrated with other doctors who ignore the information presented by patients. We have so many quality studies that vaccines help, that masks are effective, and that Covid can affect many systems long term, but we're loathe to acknowledge our current state of affairs.

Dr. Jon Meddings wrote: 

Thinking about that poor family with a child dead from measles. The penultimate cause of death was of course misinformation, fuelled by an appalling industry that profits from our public inability to separate truth from baloney. 

I've long been a fan of Carl Sagan - a wonderful scientist who died in the 1990's. He was the quintessential science communicator and I loved and read, all his books. One book in particular captivated me. The Demon-Haunted World: Science as a Candle in the Dark. Well worth a read if you have time. Even today his ideas ring true. In particular he addressed the vaccine problem we have today with what he called his "Baloney Detection Kit". Let me paraphrase it here. 10 questions, and I'll use Anti Vax as the test case.

1.What is the credibility of the source? Is the claim being made to you coming from someone you would expect to know the truth about this? If I have an electrical issue I trust the advice of an electrician over that of my neighbour. 

2. Does the source make other similar claims? So in the vax case - do these claims form part of a larger picture? For instance 'the vax does not work and climate change isn't happening' forms a bigger picture that should make you doubt the initial claim. 

3. Have the claims been verified by somebody else? This is important. Science by its very nature requires corroboration. If all the data about a claim comes from a single experiment or person it is suspect. 

4. Does the claim fit with the way the world works? We already have a ton of knowledge. Any new claim needs to fit within that existing framework. If the claim is that 'mRNA is dangerous' then questions should be raised as to why it is not dangerous in nature. 

5. Has anyone tried to falsify the claim? What are the counter arguments? All reasonable claims make predictions. Those can be tested. If death is a common side effect of the vax - Well, we have given billions of injections.Countries with higher vaccination rates should have higher death rates - do we see that? 

6. Where does the preponderance of evidence point? Is it towards this or towards some other explanation? It is always easy to find one study that disagrees with consensus. The question is where does the totality of evidence point? I expect outliers. I don't let them guide my thinking. 

7. Are the people making the claim playing fair? Do they test their theories, do they try to falsify them? It is easy to be critical. It is much harder to be constructive. Has the person who makes this claim worked hard to find evidence that would falsify their theory. 

8. Is the claimant providing positive evidence for their theory or just raising questions about standard theory. Again, it is always easy to poke holes or just ask questions. New data or experiments are key. Rather than simply saying I think that data is wrong, have they provided new data? Done a new experiment? Found data that would contradict the previous findings? Without this it is hard to believe a spurious claim. 

9. Does the new theory explain/account for as many things as the old one? Any new claim should not be about one specific issue - i.e. 'the vax causes cancer' If that were true, what is the mechanism and what would that mean about our understanding of cell biology? 

10. Do the personal beliefs of the claimant tend to drive the person? Is it ideologically driven 'research'?In the case of the vax - if there is a financial motive behind saying that the vax doesn't work/causes cancer etc. You are also selling alternatives or treatments for this... and so I'd be very suspicious. This is true of many of the prominent Anti-vaxxers. 

I wish Carl Sagan were around now. He would be rightly appalled at where we've gotten to. But his baloney detection kit is just as applicable now as it was then.

Dr. Claire Taylor wrote about doctors straight up ignoring symptoms, leading to patients needing to find and verify research online. 

Patient to cardiologist: ‘I’d like to discuss PoTS’
Cardiologist:  ‘No, there is FAR TOO MUCH PoTS around right now. DO NOT google it. There is no treatment anyway’
Patient: 🤨 

Oh my word There is a lot of PoTS around due to COVID wrecking autonomic systems. There IS treatment. This is my absolute pet hate. PoTS has went from rare to common due to Covid. It is extremely disabling. It makes people exercise intolerant. It gives people cognitive symptoms due to reduced blood flow to the BRAIN. This person has to work lying down. Why can’t they ask? It’s 2024. It’s time we realised patients often know what’s wrong with them. There is google. But also this platform. Facebook. Patient support groups. Access to journal articles. 

We should not tell people off for researching their own symptoms. If they are right about the diagnosis empower them. That’s fantastic they have taken control of their own health. If the diagnosis isn’t correct explain why (nicely). But when it comes to PoTS most patients know more than doctors actually. 

How ironic in this case the doctor is clearly frustrated at how many people have PoTS. Join the dots.  And there are very few services. None in Scotland. If someone has long Covid and their heart races when they stand up or do anything, there is a very good chance it’s PoTS. There is treatment, and although it may mean trying a few different meds to get the right one, it’s worth it. 

PoTS is essentially blood in the wrong place. On standing up the body has to move blood from the chest cavity to the brain. Instead it’s in the lower half of the body. Feet often go purple which can be alarming, but is just a sign of the abnormal physiology. As the blood is not getting to the brain as normal, the brain is smart and tells the heart to beat faster to get the blood moving. There is release of adrenaline and cortisol. These are not always nice and can make people feel shaky and anxious. The body will keep doing this as long as the blood flow to the brain is lower then it should be. People can feel dizzy, but not always. More often it’s feeling sick, fatigue, fuzzy head, sweaty, leg weakness and heart racing. In extreme circumstances, the brain will make people faint to restore the blood flow to the brain. It’s smart. It’s like a cut out switch. Everything that happens in PoTS is from the body trying to protect the brain.

Around 40% of Long Covid patient have PoTS. Many ME/CFS patients have PoTS. EDS patients can have PoTS. Some people just have PoTS. 40% of 2 million with LC is 800,000 people. Plus all of the above. At least 1 million people have PoTS in the UK. 1.5% of the population. How does that compare to other diseases? COPD- 1.2 million. Multiple sclerosis- 150,000. Asthma 5.4 million. High blood pressure 14 million.  Stroke survivors 1.3 million. So, it’s pretty prevalent. Yet- no one wants to speak about it.  

In Scotland there is no PoTS pathway on the NHS. Now people are being told by doctors not to even mention their disabling potential PoTS because too many people have it?? If the number of people with Long Covid doubles to 4 million (I’m sure it will), best estimate of PoTS will be 1.6 million. If prevalence was even slightly higher at 50% that would be 2 million. Plus all the patients who have PoTS separate to Long Covid. Millions. And we have no services. No training in how to diagnose or treat it. Patients can’t even get doctors to test for it as they seemingly don’t want to talk about it. It’s a real condition--why would the autonomic system dysfunctioning not be of interest? It’s pretty important! We have a disease that many doctors don’t believe is real, that is affecting over 1 million people. As the doctor says- there’s a lot of PoTS around. Can we at least try to help people? 

For more info visit PoTS UK website. They have info for patients and medics. For anyone wondering what PoTS is- it’s not something you cook with. It’s postural orthostatic tachycardia syndrome. Heart rate increases on standing is a very basic description. It’s a multi system illness, and sometimes people need to use a wheelchair for mobility. Covid can infect or inflame the vagus nerve. It can damage the nerve fibres that respond to signals. It can damage the blood vessels so they no longer constrict on standing. It can cause the immune system to attack the body. The notion that a virus that can wreck an autonomic system is mild is a major mistake. It would be like turning your car on and all the warning lights flashing that the electrics are broken. You wouldn’t be able to drive it. Can you imagine your career being an athlete and getting PoTS? You would struggle to exercise. It’s already happened (here, here, here, and here). A reminder that children can also get PoTS. 

We are in another surge of a mutated Covid - each mutated version seems to be more immune evasive than the last (meaning it’s harder for your immune system to recognise it as Covid). I urge anyone who relies on being able to stand up for work or sports - please try to avoid Covid. You don’t always have to follow the crowd - the crowd is often wrong. As the old saying goes - if everyone was jumping off a cliff and told you to do it, would you? Protect yourself. No one else will. No one will pick up the pieces of your broken life. You may be told not to talk about your PoTS symptoms because either the doctor has heard too much about it recently, or they don’t believe in it. The cavalry isn’t coming if you get sick. Anyone can get long Covid and PoTS.