Misinformation, Stigma and WDDTY – How not to write about TB

How not to write about TB
For WDDTY, the issue is simple: their freedom to state their beliefs is being suppressed by a small group of skeptics just because we hate natural cures and love big pharma.

In this article @NurtureMyBaby explains, more eloquently than I could, why for her it is not about freedom to state an opinion, but about the pernicious effects of agenda-driven falsehoods and misrepresentations, the false hope of unwarranted extrapolation, and the ridiculous notion that adjunct to antibiotics means better than antibiotics, which don’t work anyway.

This is the third article to expose WDDTY’s worrying denialist approach to antibiotics, one of the most successful health interventions we have. Further research is underway to determine if the editors, by all accounts fervent homeopathy believers, are straying into the territory of germ theory denialism so common among that particular band of charlatans.

Now read on…

Misinformation, Stigma and WDDTY

How not to write about TB

Reblogged from NurtureMyBaby with permission

Yes, I’m talking about “What Doctors Don’t Tell You” again.

For background on this disgraceful publication, I think this is quite a good intro to the issues, and a compendium of blog posts can be found here.

Today, I want to concentrate on a specific piece of dangerous misinformation that  WDDTY have put in their December ’13 issue, about Tuberculosis (TB).

Anyone who knows me, knows I have a bit of a thing about TB.

For a good few years, It was my job.

Not in a doing stuff in a lab kind of way, but in a working with patients and communities and healthcare/social care professionals sort of way.

Some people, when they get a diagnosis of TB find it extremely difficult to get through the treatment for various reasons, and it was my job to help them. I also raised awareness of the disease with the general public and other professionals.

I’m quite passionate about information on this subject being correct and helpful, so I apologise in advance if I get a bit over excited at any point during this post. I will try my best. I don’t consider myself to be an expert, and I am not medically trained, but I do have a useful perspective on some of the issues, I think. If I have made any mistakes or if you see anything that is not very clear please let me know.

The reason I am writing this post is because TB is a disease that has a lot of stigma attached to it,and I feel that WDDTY’s usual bullshit becomes even more problematic in light of this stigma. (That’s not to say this is the only disease with stigma attached to it – but given my experiences I couldn’t help but blog on it – I think a lot of what I say applies to the way WDDTY talks about other things for example HIV and mental health). I believe WDDTY causes harm.

If you’re somehow under the impression that the campaign against WDDTY is down to a load of keyboard warrioring alt-med bashers trying to ‘ban’ something (no-one is trying to ban anything) that they simply disagree with, I hope you might read this post and come away with a different opinion. This is not about curtailing anybody’s freedom of speech for having a different opinion, as WDDTY would have you believe. WDDTY makes stuff up (as seen in the section called“Wild exaggerations, inconsistencies and general confusion”). This is about minimising the harm done by spreading this incorrect information, by asking supermarkets to consider the content of this magazine.

The information that WDDTY presents us with on this occasion, has two major problems. Firstly, as it cultivates an attitude of fear towards the disease, it is exactly the type of thing that encourages discrimination towards those affected by TB. Secondly, it over states the potential of Vitamin C as a cure. Encouraging fear and promoting cures that don’t work can ultimately lead to fewer people getting diagnosed and fewer people making it through treatment. Ultimately, this hinders efforts to bring TB rates down.

If you’ve previously got behind campaigns to ban stigmatising mental health patient costumes from Asda and are supporting the campaign to get the dangerous book “To train up a child” removed from Amazon and other places, then I presume you too are passionate about reducing harm and the spread of dangerous misinformation and I ask you to consider doing what you can to support the campaign to get this magazine removed from shops. (Only in a very gentle, if you have the time and energy, sort of way)

If you’re already aware of TB and the stigma surrounding it, and want to skip straight to looking at the specifics of what WDDTY have said, then you could start here. If not, I have included quite a bit of background to try and get across a bit more information about this.

I’m sure a better writer than me than could have achieved this with fewer words and could have been a bit more snazzy and engaging about the whole thing, but you’ve ended up here and I hope you stay with me even though this post is quite long. I am a bit sorry for the length, but I’d rather risk having a few readers drop off than having readers be misled. Me and WDDTY seem to be polar opposites in this respect. Although I doubt that’s got anything to do with snazz.

A funny lady, in pajamas, being snazzy.
A funny lady, in pajamas, being snazzy.

What is Tuberculosis?

TB is disease caused by a bacteria (Mycobacterium tuberculosis). In most cases it affects the lungs (pulmonary TB) but it can affect any part of the body. Pulmonary TB is contagious but TB in other parts of the body is not. TB is spread through the air, but close, prolonged contact is required for it to spread. You’re not going to catch it on a bus.

It is thought that about one third of the world’s population is infected with Mycobacterium tuberculosis, but just because you are infected with the bacteria it does not mean you have the disease. The body can sort of wall it off and it can stay in the body not reproducing and not causing any problems – this is known as latent TB. Latent TB could develop into an active TB infection at a later date, particularly if your immune system becomes weakened.

If you look at worldwide deaths that result from a single infectious agent, then TB is second only to HIV/AIDS.

In 2012, 8.6 million people fell ill with TB and 1.3 million died from TB.

However TB is curable with antibiotics.

By the way,  my job existed because TB is quite prevalent in some parts of the UK, London in particular, which is where I used to work. (In 2012, 39% of the UK’s 8,751 cases were in London, that’s 41.8 cases per 100,000, which is considered to be a high rate according to WHO) I’m telling you this in case you have that confused look on your face that people always used to have when I used to try to explain my job.

If you are interested in finding out things about symptoms, treatment, diagnosis and who is more at risk the NHS website is a good place to start.

Hopefully, we’ll learn what else we need to as we go along, so please forgive my brief description.

Myths

Stigma thrives on incorrect information. Much stigma if not all is based on myths.

What sort of myths are we talking about? Here are some things that some people believe about TB, and that are not true:

  • TB is a curse from God
  • TB is incurable
  • TB is a death sentence
  • TB is highly contagious
  • If you have TB you have AIDS (and vice versa)
  • TB drugs kill you
  • Only poor people/drug addicts/alcoholics get TB
  • Only immigrants (to the UK) get TB
  • TB was eradicated in the UK until immigrants brought it back
  • TB infection and TB disease are the same thing
  • You can catch TB on the bus/public transport
  • You can catch TB by sharing cutlery/crockery.

To reiterate, nothing I have written above is true, but these are all things that some people believe and such myths create the perfect breeding ground for stigma and discrimination.

Any publication that gives two shits about public health ought to consider the issues around stigma and myths when reporting on this disease.

It’s not possible to thoroughly explain and counter every one of these myths in this blog post. For a better understanding of the disease, like a said, I’d recommend starting with the NHS

I will repeat though that TB is curable. Because, unlike WDDTY, I think that the myth that says otherwise is quite a biggie, in terms of preventing people seeking help.

Stigma

Stigma can be defined as follows:

An ‘attribute that is deeply discrediting’ and that reduces the bearer from ‘a whole and usual person to a tainted, discounted one’. (Goffman E: Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice Hall; 1963)

In Goffman’s view, stigma commonly results from a transformation of the body, blemish of the individual character, or membership of a despised group. He emphasizes the relationship between an attribute and a stereotype.

Building upon this definition, Link and Phelan say ‘stigma exists when a person is identified by a label that sets the person apart and links the person to undesirable stereotypes that result in unfair treatment and discrimination’.

The consequences of stigma for TB patients – barriers to diagnosis and treatment

Stigma acts as a barrier to people coming forward for TB treatment. as It leads people to fear the consequences of people knowing that they have the disease ie. the discrimination that might (and does) result.

If you know that your family are going to reject you because of their attitude towards a disease you think you might have, you might not want to find out if you have that disease. You might not want to make that trip to the GP and tell him you’ve had a cough that you can’t shift for weeks, night sweats and you generally feel exhausted. Perhaps you have already seen a friend or relative with this curse (this is how it can be viewed) and seen how they ended up being treated. Once your GP has referred you to the hospital TB clinic you might feel unsure about going through with the tests that could confirm your worst fear.

Stigma also acts as a barrier to preventing people completing treatment , once they are diagnosed. If you are so embarrassed about the disease you are suffering from, so afraid to bring shame on your family, you might not find it easy to take your tablets every day (standard treatment is 4 antibiotics for the first 2 months, followed by 2 antibiotics for 4 months). These drugs can cause quite unpleasant side effects in some people and so if you are keeping your treatment a secret this can make the side effects harder to deal with. Keeping to the necessary appointments throughout your treatment might also be difficult if you have not told your family.

Side effects, keeping to appointments and the illness itself, also mean that you might need time off from work. Employers tend to ask questions when their staff need to be absent. So it’s not just the reaction of family that needs considering, workplace discrimination can also be an issue.

Obviously I can’t start talking about the details of the patients I have worked with, but people do lose their jobs because their employers decide they don’t want to employ someone with TB, and people do find themselves suddenly less welcome in their place of residence.

When you have nowhere to live, or you have lost your source of income, or you have faced rejection by those close to you, keeping appointments, filling prescriptions and taking tablets is not always a top priority.

I’m not saying that every person who has this disease keeps it a secret and/or faces discrimination from their families, friends, colleagues and employers, but it does happen, and it does affect people’s likelihood of seeking out a diagnosis and/or completing treatment.

Encouraging patients to get diagnosed as soon as possible and ensuring they successfully complete treatment is key to bringing down rates of this disease.

Why? Because the quicker someone is diagnosed, the lower the chance that they will pass the disease onto someone else. And because starting, but not finishing a course of antibiotics leads to drug resistance, which makes TB more difficult to treat, for example treatment becomes longer, (6 months vs up to 2 years)

I don’t want to overplay the role of stigma on TB rates, there are many other things at play, especially when you look at TB globally and consider that a lot of TB occurs in countries where there are other issues surrounding access to healthcare. But as much as I’m not able to quantify the importance of stigma, it is important, to global TB control and to individuals who have experience of the disease.

The above is based on my own experiences, but some research on TB and stigma has been done. If you are interested, you might want to check out the following:

Causes of stigma and discrimination associated with tuberculosis in Nepal: a qualitative study

An exploration of the social stigma of tuberculosis in five ‘municipios’ of Nicaragua to reflect on local interventions.

Fear and social isolation as consequences of tuberculosis in Vietnam: a gender analysis

A gender-focused qualitative study of barriers to accessing tuberculosis treatment in the Gambia, West Africa.

“What Doctors Don’t Tell You” Tell You about TB

vitc-tb

I’m going to be straight up here and say I have not looked in too much detail at the research paper that is cited. Much of my complaint is not with the way WDDTY has reported the details of the research. Given their track record I would expect there to be some (probably major) problems with this but my main issue is with he general background information they try to provide on TB, the utter crap they spout about drug resistant TB, and their failure to acknowledge the relevance of this being an in vitro experiment.

Ok, so the piece is titled:

Vitamin C kills TB superbugs

And I want to concentrate mainly on the first three atrocious paragraphs:

Medicine is slowly waking up to the incredible healing powers of vitamin C. According to new research, it can kill even the ‘superbug’ varieties of the tuberculosis (TB) bacteria that have become immune to every available drug, giving hope to the millions of people who are infected every single year.

The vitamin kills multidrug-resistant Mycobacterium tuberculosis, which infects 650,000 people worldwide every year and is responsible for most of the annual 1.4 million deaths related to the disease.

The bacteria are resistant to every drug, including the first-line treatment isoniazid— which means that medicine has no answer to a superbug that is spreading throughout the developing world.

In regards to the headline – Same as last time really. The headline generalises and is sensationalist. It’s just meaningless and stupid. And it begs the question…

Just where is all this killing of bacteria happening?

(Sorry, I cannot bear to repeat their use of the word ‘superbugs’ in this heading)

Answer: in a test tube. In Vitro. In an artificial environment outside the human body.

Perhaps many media outlets don’t put in their headline whether or not the study was done in a petri dish in a lab or in actual humans or monkeys or mice or whatever. (Although having said that, the BBC manage it in their report on the same paper – the use of the word lab is quite helpful to the reader.)

But, even later in the article I don’t think they are terribly clear that the study was not carried out in humans; the closest we get to them revealing this is them saying TB bacteria was “mixed with cysteine, an amino acid that is also an active agent in vitamin C” and that “the entire bacterial culture was wiped out”

Fair enough, this does infer an in vitro study but I’m all for saying things explicitly myself, so I prefer the BBC’s approach of quoting the lead investigator:

We have only been able to demonstrate this in a test tube, and we don’t know if it will work in humans and in animals.

And of quoting Dr Ibrahim Abubakar, Head of TB at Public Health England:

While the findings of this study appear promising, further research to confirm the observations would be essential before Vitamin C can be used to supplement TB treatment”

It’s just all together more clear.

It strikes me that WDDTY have an aversion to writing in this manner.

Let me remind you what they say with regards to the possibility of using the therapy in humans:

According to new research, it [Vitamin C] can kill even the ‘superbug’ varieties of the tuberculosis (TB) bacteria that have become immune to every available drug, giving hope to the millions of people who are infected every single year.

Putting aside (temporarily) the idiocy of using the word ‘superbug’ and the sheer outrageousness of saying millions of people are being infected with it, I think more caution is in order than we see here, with this message of hope.

But that wouldn’t suit the magazine’s agenda.

False hope?

I mentioned the desperation of a parent with a child that had cancer in my letter to supermarkets and how I felt WDDTY prey on this sort of emotion. But my experience is that TB patients can also feel quite desperate and can be vulnerable too.

The feeling I get from the whole article (in combination with the picture of that bloody orange, if I’m honest) brings me to question to what extent this piece of writing offers false hope to those vulnerable people suffering from TB that may be having difficulties with diagnosis and treatment due to stigma and discrimination.

A hope that maybe they can get away with not seeking out treatment after all. A hope that maybe they can stop taking the antibiotics that are giving them side effects and have led to them being treat like an outcast.

It is extremely feasible that for some people it will be easier and less shameful to be seen eating oranges or taking some vitamin C tablets versus 6 months of antibiotics that are specific to TB.

I think that any magazine that cares about public health and that chooses to report on this, ought to take the time and make the effort to be super clear that this research has in no way has led to any alteration to the treatment regimens recommended for TB, drug resistant or not. (Even if it was used, it would be used in addition to other drugs)

It does happen that patients stop their antibiotic treatment in favour of alternative therapies, for example homoeopathy, and I do feel this is linked to shame, embarrassment and also to a distrust of Western medicine. All things actively encouraged by WDDTY in this article.

I’m not going to be daft and say that there is evidence that patients would read this and immediately go out and buy some Vit. C in favour of antibiotics (although if they did think this was a good idea there is a lovely full-page advert on page 3), but I certainly think it is plausible, perhaps likely. I certainly don’t think WDDTY takes the appropriate care to ensure that the information they provide is not misconstrued in this way.

‘Superbugs’

This section is going to make mad. I seriously need to be doing some of that yoga stuff that yoga lady is doing above the not-able-to-cure-TB orange.

I plain and simple dislike the use of this word.

We already know it is nonsense that this magazine calls itself a “journal” but why would anyone who wants to report on science seriously and responsibly use this word? (Don’t take that literally. I know WDDTY aim to do neither of these things)

I’d be interested to know what goes through a reader’s mind when they encounter this word.

Here’s what I think WDDTY want you to be thinking/feeling:

Panic.

Fear.

MRSA skin eating Daily Mail headlines with suitable accompanying pictures.

Deadly, rampant epidemics

The Apocalypse.

OK, OK. I’ve taken it too far. Sorry. Can we agree that this word is sensationalist and alarmist though? Especially In light of all the fear and stigma surrounding this disease, why, just why, would they use this word?

Well, it’s a perfect choice for WDDTY really. It can be used to encourage the type of atmosphere that means more people are likely to turn to the type of lacking-in-evidence therapies that their finances depend on (don’t forget about the advert I mentioned – I doubt that it was a free gift) As it has no actual meaning, you can use it to mean whatever you want it to mean! And Jesus Christ Fuck Bucket do WDDTY make sure they take full advantage of that. With bells on.

For example, it is perfect for using to illustrate the failings of modern medicine, a theme that Lynne McTaggart, (co-editor) is wildly fond of. Read this bit again:

The bacteria are resistant to every drug, including the first-line treatment isoniazid— which means that medicine has no answer to a superbug that is spreading throughout the developing world.

Do you see what I’m getting at?

(incidentally, a brief look at information from WHO shows me there’s a new drug being used (with caution) to treat drug resistant TB that I’d never heard of. Obviously WDDTY don’t tell you that though.)

This last sentence makes me rage.

Can we just take a bit of a time out and look at.

Some useful definitions

Here’s some terms that, unlike ‘superbug’ are useful. You know, ones that have meanings that are universally agreed upon:

Multi-drug resistant TB (MDR-TB) is caused by organisms that are resistant to at least the two most effective anti-TB drugs, isoniazid and rifampicin.

Extensively drug-resistant TB (XDR-TB) is a form of TB caused by organisms that are resistant to isoniazid and rifampicin (i.e. MDR-TB) as well as any fluoroquinolone and any of the second–line anti-TB injectable drugs (amikacin, kanamycin or capreomycin).

Rifampicin-resistant TB (RR-TB) is caused by organisms that are resistant to rifampicin, with or without resistance to other drugs.

Both MDR-TB and XDR-TB are forms of RR-TB. These forms of TB do not respond to the standard six month treatment with first-line anti-TB drugs and can take two years or more to treat with drugs that are less effective, more toxic and more expensive.

These definitions are taken from here

Now, drug resistant TB is definitely not a good thing, it presents a major challenge to lowering TB rates and can’t be much fun for the individual having to take more toxic drugs for longer periods of time. But the extent to which whoever wrote this piece gets the facts so completely wrong is mind-boggling.

The writing contradicts itself. How sloppy can you get? If you’re going to make shit up at least do it consistently.

The definitions are wrong.

The numbers are wrong.

It’s so wrong it almost nonsensical (I personally think this is a deliberate tactic), which probably makes me a fool for trying to go through it and scrutinise it, step by step, but I can’t help myself….

Wild exaggerations, inconsistencies and general confusion

Let’s start with this (I repeat):

…..it [Vitamin C] can kill even the ‘superbug’ varieties of the tuberculosis (TB) bacteria that have become immune to every available drug, giving hope to the millions of people who are infected every single year.

Ok first off. What in the name of all things good are you talking about with this ‘superbug’ lark?

Seeing as I’ve lovingly copied and pasted all the actual definitions of the different types of drug resistant TB above, perhaps someone can enlighten me, I’ve certainly got not clue.

Immune to every available drug?

The closest resemblance I can find to WDDTY’s ‘superbug’ is XDR-TB. This is not resistant to all drugs. It is resistant to the best drugs. It is very difficult to treat and treatment is not always successful. The CDC say 30 – 50% of cases can be cured. (In countries other than the USA, you would expect this to be lower) Obviously, XDR-TB is of concern, but it is much, much rarer that WDDTY would have you believe: Globally about 3.6% of newly detected cases are multi-drug resistant and about 20% of existing cases are drug resistant – about 10% of MDR-TB cases are classified as XDR-TB.

Not only have they invented a new strain of TB, immune to every available drug, but then they really do go on to say that MILLIONS OF PEOPLE ARE INFECTED EVERY YEAR.*

Given that MDR-TB was estimated to infect 450,000 people globally in 2012 and XDR-TB was be estimated to make up 10% of these cases, I don’t know where they get millions from. Tens of thousands, is too many, but it is not millions.

I’m so glad I don’t work in this field any more, because this is probably very unprofessional: YOU FUCKING MUPPETS, WDDTY.

You irresponsible, scaremongering .pieces of.people.

I’m just astounded.

I really am.

There is so much fear around this disease as it is. Too many people already think it is not curable. Thanks for your contribution to public health with this one. Really. What is going on in your head, Lynne McTaggart that you think doing this is OK?

(For those, who are unfamiliar with WDDTY, wondering why I don’t just make them aware of this “mistake” – their track record of responding to criticism reveals a certain theme: Ignore, delete, block and depending on what mood they are in, accuse of libel)

TB IS CURABLE.

Moving on:

The vitamin kills multidrug-resistant Mycobacterium tuberculosis, which infects 650,000 people worldwide every year and is responsible for most of the annual 1.4 million deaths related to the disease.

And the fuckmuppetry continues. They now introduce the term Multidrug-resistant TB, but they don’t do anything to distinguish it from the previously invented ‘superbug’ (To reiterate: it is utterly incorrect for MDR-TB to be described in the same way that this ‘superbug’ is described)

Only now we are told that it infects 650,00 people worldwide annually. Which is it? Millions or 650,000? How confused are you feeling, reader? Or are you just too angry to even be confused?

As I’ve said, WHO estimates that there were about 450,000 new (incident) MDR-TB cases in the world in 2012, so neither figure is correct anyway.

The figure of 650,000 cannot be found in the only paper that is referenced, so I can’t be sure where they get it from. But I’m going to go out on a limb and say that based on the BBC’s reporting of the same, that this is the total number of people in the world that are estimated to be suffering from MDR-TB.

This is different to new infections. Why would you report this number as though it represented the number of new infections? To exaggerate. All exaggeration is good when you are trying to paint a picture of modern medicine being a failure. You know, because oranges.

Anyway, lets take the sentence as a whole. WDDTY tell us that annually there are 650,000 new MDR-TB infections (incorrect) but then somehow it manages to account for “most of the annual 1.4 million deaths”. That’s probably not completely impossible. With your invented 650,000 new infection figure, I guess you could invent a much, much higher number for total number of people infected. And then if “most” is 50%..and then if a very high proportion of the infected die….Anyway seems me and my imagination are getting a bit carried away, it requires quite a work of fiction to get that sentence to make sense. Even if the numbers were correct (which they’re not) this situation that WDDTY tell’s us exists with this sentence seems……unlikely.

Incidentally, in case you were wondering how many people actually die annually from MDR-TB it is estimated to be 170,000.
(And only some of these will be due to XDR-TB, which comes vaguely close to being something similar to WDDTY’s ‘superbug’)

I’d say it doesn’t really matter how you interpret “most” – this figure of 170,000 is nowhere near “most of the 1.4 million deaths”.

The 2012 figure for people who die of TB world-wide is 1.3 million by the way so they haven’t even got that right.

And so to the final sentence that I’m going to put my energy into scrutinising (even though I’ve mentioned it before, sorry):

The bacteria are resistant to every drug, including the first-line treatment isoniazid— which means that medicine has no answer to a superbug that is spreading throughout the developing world.

This is worth mentioning again only because it shows that WDDTY really do believe their ‘superbug’ and MDR-TB are one and the same thing. Yep. According to WDDTY MDR-TB is TOTALLY RESISTANT TO ALL DRUGS and infects millions/650,000 depending on which sentence you choose, and causes “most of the annual 1.4 million deaths related to the disease. (To reiterate: MDR – TB is not resistant to all drugs, and in 2012 it infected 450,000 people, and 170,000 people died. None of this is good. But none of it bears any resemblance to what WDDTY tell us, either)

So WDDTY paint quite a dramatic picture of TB globally, a picture that unless I’ve lost the plot, is a work of fiction. Alongside all the other things I’ve said, it is worth noting that, according to WHO, the estimated number of people falling ill with tuberculosis each year is declining, although very slowly,

I think the end result of this appalling writing is that the reader is left thinking that most TB is drug resistant and…. I’m massively pissed off that I’m actually typing this….. I think the reader could easily come away thinking TB is incurable, or at least that the majority of cases are incurable.

(I’m sorry if I’m being repetitive but;)

People lose their homes and jobs because of these sorts of myths.

*If I’m going to play the game of what might poor, misunderstood WDDTY have to say about my writings, if I’m going to be really, really fucking generous, beyond what this magazine deserves, then maybe, just maybe you could interpret “giving hope to the millions of people who are infected every single year.” in the first sentence I look at here, as meaning infected with any TB. But given the rest of the crap they spout in this article and the crap they spout in general, I don’t know why I’m bothering to in any way give them any sort of benefit of any sort of doubt. They should not take any sort of risk of being misconstrued in this manner.

What pisses me off the most…

..is that drug resistance would be much less of a problem if more people finished the course of antibiotics required to effectively treat the disease.

Stigma enhancing misinformation, is a big factor in causing difficulties for patients, which in turn makes it harder for them to complete treatment. (You know, in a losing your job, having no roof over your head kind of way.)

Misinformation that is RAMPANT in this article. Certainly more rampant than an entirely fictional strain of Mycobacterium tuberculosis.

Thanks for reading. Do let me know your thoughts.

One thought on “Misinformation, Stigma and WDDTY – How not to write about TB”

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