How to Read a Newspaper

Scenario: we read a newspaper article about someone who’s found an instant cure from (insert Spoonie condition of your affliction) after a relatively short amount of time. Our initial reaction probably includes some combination of these thoughts:

  • They were never ill in the first place.

  • They were ill but it’s not true that they are now well.

  • They can’t have had what I have.

  • It’s true that they recovered but for a different reason.

  • It’s great that they found a way to get well.

  • If I try that will it work for me?

  • I’ve been ill much longer, I’d know if that works.

  • Why have I been ill so long? It’s not fair.

  • The newspaper has got it wrong.

I think these reactions could do with some unpacking.

They were never ill in the first place.

After we’ve got over our initial reaction this thought is probably the easiest to kill off. Generally in life people are more likely to cover up illness than claim it when they’re perfectly well. Having the label of a ME diagnosis does not improve your status in our culture. It’s unlikely to even get you ‘tea and sympathy’. Also, why should people believe we are ill if we’re not prepared to listen to other people’s experience of illness?

They were ill but it’s not true that they are now well.

This is much trickier to reach a conclusion about. How do they define words like ‘cure’ and ‘recovery’? Some therapies are likely to lead to denial or blocking out symptoms, or a reluctance to identify as an ill person. With a fluctuating condition it could be possible to coincidentally be in a good phase. Is their recovery actually a period of remission? Do they still manage their activity levels (feeling well within a certain envelope of activity)?

Tied up within this reaction can be a belief that no one gets well from ME (or Spoonie condition of your affliction). I was given this impression when diagnosed and it influenced my behaviour. More recently I’ve read that ME prognosis  is split into thirds of recovery/some improvement/don’t improve (evidence based protocol on ME pdf). I don’t know how complete this recovery is but it does seem to be that some people resume hectic lives. For example, Yvette Cooper had ME for 3 years and is now standing to be leader of the Labour Party. There is reason to hope, but it is too uncertain to know which of us will make a full and lasting recovery.

They can’t have had what I have.

This is also tricky to know. If you get a diagnosis of CFS or CFS/ME this is an umbrella category. It serves some purpose because we have similar experiences and may benefit from similar treatments. However, at a physiological level it doesn’t really pin down what is going on. My ME may be mainly caused by exhaustion from POTS and theirs could be from their immune system going into overdrive. We could even have the same glandular fever trigger but it wouldn’t really be fair to say that we have the same thing. We need much more subgroup/phenotype research to work that out.

It’s true that they recovered but for a different reason.

This is one of my favourite responses to weird Cures. It allows me to validate their experience of recovery without having to uncritically accept every wacky idea. Perhaps a bizarre diet worked because additives and sugars were cut out at the same time. Perhaps numerology helped because they had less anxiety about the future and the reduction in stress allowed their body more resources to heal etc.

It’s great that they found a way to get well.

This seems like a healthy, warm-hearted response to a good news story. Whatever type of illness they had, whatever really made them feel better, the essence of the message is someone felt crap and now they don’t. This is good.

If I try that will it work for me?

Oh dear it starts to get complicated again. This is tied up in the other issues of whether or not we have the same thing, if they are fully well and if it was what they think it was that made them well. Probably the best thing to do is an informal cost-benefit analysis. If something is free and unlikely to make me worse (eg meditation) then I give it a go. On the other hand, going for a swim in the North Sea is too risky and spending a fortune on retreats may leave me unable to pay the bills. Also, the greater the financial or health risk then the more evidence I want to see (such as randomised controlled trials rather than a one off story).

I’ve been ill much longer, I’d know if that works.

This seems to be a common reaction on forums, Facebook and Twitter. We seem to have a subtle hierarchy going on with length of illness. Someone can pull rank on me if they’ve been ill for 31 years to my 17.

If you think about this logically it makes no sense in the context of recovery (unless I’d already tried that treatment). If someone you know had ME and got well after a year, listen to their tips over mine (and pass their tips on to me!). I’ve been trying things for ages and I’m still virtually housebound. The people who get well quickly may be doing something differently from the rest of us. It may be worth being open minded about what they have to say.

Why have I been ill so long? It’s not fair.

It’s not fair and it’s not my fault. It’s some random combination of genetic predisposition, trigger stressors, lack of research and lack of reliable treatment.

The newspaper has got it wrong obviously.

Unfortunately this is probably the most appropriate response. It is definitely worth remembering before getting mad at any individual quoted in a story. When I realise how inaccurate articles are about chronic illness (something I know about) it makes me question everything I read.

The story is unlikely to be entirely imaginary though so it can be helpful to hear the firsthand account before forming firm opinions.

A couple of case studies are:

You may have guessed that this post was prompted by the story that our Prime Minister’s sister-in-law was Cured of ME by swimming in the cold, North Sea (the language in the article was offensive so I won’t link to it here). On Twitter people went through most of the above responses. I wasted a bit of time wondering about the biological basis if it was true. I have heard a theory that if your autonomic nervous system has been put off kilter by a shock to the system, such as a virus, then another shock can reset it. Had the extreme cold caused this?

To end speculation I decided to contact her myself. She is a real person who tweets after all. I also felt a bit uncomfortable speaking about her health slightly behind her back but in ear shot (which is effectively what you’re doing tweeting about other people).

This was the conversation:

emily

It seems to be that the real story is that someone got better after seeing an expert and using cognitive therapy. This probably wouldn’t sell copies of the Daily Mail. It is still controversial within the #pwme community though and isn’t likely to be the answer for many of us. There’s part of me that’s a little disappointed. Today is the hottest day of the year. I wouldn’t mind jumping into a cold sea and emerging a new woman…

My second example is that when the papers write about Ella Woodward they like to claim she Cured PoTS through her diet. Some people with POTS are angry because these newspaper stories have created pressure from friends and family to also get better just through food. To be accurate, in her enthusiasm for cooking, Ella does infer that food healed her, but in describing PoTS she says

“Whilst medications are amazingly helpful in controlling symptoms there is no cure. This isn’t helped by the fact that most doctors have never heard of the syndrome since the condition gets so little attention in the medical community. As a result of this lack of understanding, even the experts do not fully understand why it occurs and what the prognosis is. All they can estimate is that in about 50% of patients the syndrome disappears at some point, although they really cannot predict when, whilst for the remaining 50% it is something they will have to manage for life.”

She also describes symptoms returning if she deviates from her diet and getting bad hangovers if she attempts to drink. I notice she seems to be particularly enthusiastic in her style of writing and talking. Since she doesn’t believe there is a cure, she may be naturally overly positive, and her symptoms haven’t permanently gone, it seems safer to conclude that she has found something useful to control symptoms. Using this more understated conclusion, I have incorporated her tasty recipes into my diet but I haven’t bought into the vegan lifestyle aspect of it.


Can you think of similar examples? Would you like to get to the truth behind any annoying newspaper case studies?

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5 thoughts on “How to Read a Newspaper

  1. I really enjoyed this post! Recovery stories can be as frustrating as they are inspiring. I think some of the ways people (including me) react to recovery stories are understandable, but when it comes down to it, they often just dismiss people’s experience. It’s just as bad as people who have improved dismissing my experience of not having improved. So I try to steer myself away from that. Although the sea swim story did prompt an eyeroll. Good to know it was “cognitive techniques”, which I understand from the Maudsley Hospital website would be CBT/similar.
    Frankly I just get jealous when I hear that people improved or recovered by doing the various things that I’ve done e.g. diet changes, pacing, meditating, CBT, GET. I’m so pleased for them – I think the more of us that get out of this situation the better – I just want the same for myself.
    I’m a fan of Ella Woodward and am delighted her health has improved so dramatically. I couldn’t help noticing that her diet sounded pretty awful before she changed it. There’s another similar cookbook “The Extra-Virgin Kitchen” by Susan Jane White and her story is similar – terrible diet, autoimmune condition, super-healthy diet, better.
    It makes sense that if one aspect of your health is REALLY out of balance, be that diet or psychology or activity or whatever else, then changing that will potentially have a big impact. My diet is amazing now. But it was way above average before I got sick too. My activity levels are well-paced now. But I had a great activity-rest balance before I got sick too. I’ve grown emotionally and spiritually, with tools coming out my ears, like my favourite, meditation. But I was stable and well-adjusted and happy before I got sick too.
    So I’ll keep scouring the stories for things that might be useful. But I’ll also keep a close eye on the medical research (am loving this rituximab news)…

    Liked by 1 person

    • Yes when I got the Deliciously Ella book my partner commented that I’d be unlikely to make dramatic improvement with diet because mine was already pretty good. Sometimes you can miss key things though. Eg when I had my relapse (in retrospect this seems like a massive POTS flare) we followed OHC guidelines like more protein and mostly organic. After a while I had a nutritionist appointment and the first thing she flagged up was I’d inadvertently cut out all salt. That’s not good for Spoonies generally but for POTS there’s no way I’d get better without salt. I added other expensive supplements and things. In a couple of weeks I went from Bedbound level to housebound level. I think now it might have been more the salt than the supplements! Also did you see my last post about the Mendus Diet study? This shows that when I have food with more b12, b2 and iron I have less pain, and selenium and zinc more mental clarity. My diet still looks healthy on the days I’m not high on these, but my symptoms are worse.
      The rituximab news cheered me up 🙌 too. It indicates there could be an end in sight even if all these other tools do nothing for us.The magic pill at the end of the rainbow can be made in a lab🌈 Wish they could speed up research!

      Like

  2. Hi Jenny,

    Yes, good research is painfully slow. I like thinking of them beavering away!

    I can totally see how you inadvertently cut out salt and agree adding it back in could have made a big difference if not the difference, given your POTS. I probably would have done the same, except luckily I was put on a high-salt diet before I made big changes to my diet.

    I did see your Mendus post – it’s great that you’re getting helpful information from this! I think these kinds of online tools are such a great idea for under-researched areas like ME & co. Sounds like you can save some money from what you’ve found out – always helpful.

    I have a lot of methodological quibbles because of my background, but putting those aside, my reason for not doing it is that my symptoms barely vary at all, my activity level varies minimally, and pain and sleep are just not issues for me. I’ve seen no changes at all in my energy, orthostatic intolerance or mental clarity with any diet changes or supplements. I think the chances of me seeing useful correlations would be low, and I just don’t have the energy at the moment to enter all the data etc. I still live in hope. A few months ago I finally got rid of the last vestige of gluten in my diet and braced myself for dizzying levels of improvement – still waiting!

    To chime in on magnesium – pain isn’t generally an issue for me, but it sometimes is for a patch. I was taking two multivitamins with magnesium for a long time and have now stopped for a long time – no difference at all. I do think there are many different kinds of pain and magnesium may be helpful for some types of pain and not others because of its particular mechanism of action. For my intermittent joint pain it does nothing. I just came across this http://www.webmd.com/vitamins-and-supplements/lifestyle-guide-11/chronic-pain-relief?page=2 that I thought was a pretty handy summary of which supplements might be helpful for which types of pain. They say the evidence is mixed for magnesium, but there are others that sound worth checking out. I’ll keep them in mind next time my joints flare!

    Like you, I think it’s well worth keeping an eye on things and making sure key things haven’t been missed or noticing that something that was helping before might be hindering now. I just think I’m in the land of diminishing returns when it comes to diet, you know? I’m so close to being optimally optimised that for now, it’s probably as good as it gets.

    Hope you keep finding out helpful info from Mendus – very empowering.

    Talk soon,

    K

    Liked by 1 person

    • You’re right that Mendus wouldn’t be any use to you if you don’t see fluctuations. Hope something helps you soon.
      I’m having a week of feeling worse (likely PEM possibly infection). With it I’m feeling frustrated 😤 with both the illness and the way some people react to it (all the infighting). Expect I’d be calm again if I could get a decent amount of sleep but my symptoms are defying melatonin, valerian, essential oils, yoga nidra and painkillers combined!

      Like

  3. Reblogged this on aBodyofHope and commented:
    How do you feel when you hear that someone with your same condition has gotten well?
    This blogger explores the honest thoughts and feelings she and so many of us experience when a fellow Spoonie recovers.
    I hope you enjoy reading this post as much as I did:

    Liked by 1 person

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