101 Misconceptions About M.E.

  1. It’s all about fatigue.
  2. There are no distinctive symptoms
  3. There is no evidence of physical abnormalities
  4. It may not even exist
  5. Most people recover
  6. People with ME don’t want a psychiatric diagnosis because of the stigma
  7. Because we don’t have enough stigma already from having ME
  8. People with ME are scared of exercise
  9. You need more exercise
  10. You need more fresh air
  11. You’ll get better by fighting it
  12. You’ll get better if you think positive
  13. You’ll get better if you push on through the pain
  14. You’ll get better if you stop wearing shoes
  15. All your friends will understand
  16. If you can do something today, you can do it tomorrow
  17. You look as well the rest of the time as you do for the one hour a week when you see your friends
  18. I feel like that as well
  19. That’s how I feel on a Monday morning
  20. That’s how I feel on a Friday night
  21. You should have got better by this time
  22. You have to keep going
  23. You can’t let people down
  24. You’re probably just feeling stressed
  25. The doctor will know what to do
  26. Doctors are trained in ME
  27. You’ll be pleased to know that your bloods are normal
  28. We need to avoid extensive testing
  29. You wouldn’t get upset like that if you weren’t depressed
  30. Anti-depressants will make you better
  31. If you go to an ME clinic, you’ll see a doctor
  32. Oh yes, we all think it’s a physical illness here at the clinic
  33. Graded exercise therapy (GET) and cognitive behavioural therapy (CBT) will make you better
  34. GET is perfectly safe
  35. Proven physical intolerance to exercise can be overcome by doing more exercise
  36. You’ve recovered if you can walk as far as patients with congestive heart failure
  37. If you don’t finish the course of GET then of course you must be recovered
  38. If you don’t attend appointments and we never hear from you again then of course you must be recovered
  39. If GET doesn’t cure you and you’ve told us so then you must have ‘illness anxiety’ instead
  40. Or one of numerous other ‘psychogenic’ conditions we’ve invented – you can take your pick
  41. We don’t rediagnose people to massage our outcome figures – that’s just a by-product
  42. Dividing illnesses into ‘physical’ and ‘non-physical’ is a mistake that patients make, not doctors
  43. People get ME because they want to be perfect
  44. It’s the patient’s fault
  45. It’s the parents’ fault
  46. You are making your children ill
  47. We have to set goals for your children
  48. Your children are safe with us
  49. Calling trials on children cute names like ‘Smile’ and ‘Magenta’ makes them less inherently evil
  50. The PACE trial is excellent science
  51. Eminent Consultant Psychiatrists can always be trusted
  52. If you use CBT to convince someone they’re not ill and they say they’re not ill, that’s classed as recovery even though they’re just as ill as they’ve always been
  53. This is one of the most robust findings about ME
  54. We’ll release our data but not to patients because their illness is nothing to do with them
  55. We’ll release our data as soon as we take the names off the anonymised data sets
  56. We’ll release the data when we’ve finished studying it (which we never will)
  57. We researchers get itchy about releasing data due to research parasites
  58. We at the PACE trial take confidentiality very seriously which is why we kept the data in unlocked drawers.
  59. People with ME are too vociferous for their own good
  60. We can’t get people to study ME because of the death threats
  61. It’s safer for psychiatrists in Afghanistan
  62. Why are you attacking us? We’re the very people who are trying to help you
  63. Sir Simon Wessely has to live in an iron bunker at the bottom of Loch Ness
  64. Some ME militants have to be chained up or they’ll savage passers by.
  65. There’s just not enough psychologists studying the lifestyle of people with ME
  66. There must be some secret, sinister reason why people with ME tend to stay at home and use the internet a lot
  67. Probably the same reason they don’t buy many shoes
  68. As soon as we understand these things, we’ll know a lot more about the causes of this illness.
  69. This helped me so it must help you
  70. If you buy one of these you’ll get better
  71. You look so well, you must be getting better
  72. You must feel better – you’ve slept so much
  73. You never sleep so you can’t be tired
  74. You must have a low pain threshold
  75. You should try taking a paracetemol
  76. You caught it off the internet
  77. You don’t have to know the first thing about ME in order to write about it
  78. This latest development has finally proven it’s not just ‘yuppie flu’
  79. So that’s all right then
  80. If you read something often enough in the papers, it must be correct
  81. The Science Media Centre is an accurate source of information
  82. Science journalists always look critically at the studies they report
  83. Especially in the UK
  84. ME is partly physical and partly psychiatric because that’s what the book I’m writing is about
  85. If you want to understand a neurological condition, the best person to ask is a sports physiologist in Cape Town
  86. If I write an article about how people with ME are too lazy to get out of bed and spend all their time out in the streets shooting psychiatrists, I’ll look really clever and no one will complain
  87. ‘Chronic fatigue’ is another name for ME
  88. All people with a diagnosis of chronic fatigue syndrome (CFS) have the same condition
  89. So it makes perfect sense to compare patients in different studies – even though they’ve used different diagnostic criteria
  90. And to apply the findings to all people with a diagnosis of CFS even though some of them have ME and some of them don’t
  91. And with so many different diagnostic criteria already in use, it can’t do any harm to invent another one from time to time for no apparent reason, can’t it?
  92. All of which is very straightforward and not confusing at all
  93. People with ME have no reason to get upset
  94. You can’t just get an infection one day and never get better, so you spend the whole of the rest of your life being ill
  95. It could never happen to you
  96. ME is not serious
  97. ME does not devastate lives
  98. ME is never fatal
  99. ME never leaves you stuck in bed, unable to sit up, tolerate light, or communicate with the ones you love
  100. If you ridicule people with ME for making a fuss they’ll stop doing it
  101. It’s OK for things to go on the way they are.

Footnote: All the above statements are WRONG (unless I missed some, in which case please tell me!) I’ve mixed deadly serious stuff with stuff that I think is funny, which is always a bit precarious, so if I’ve offended anyone I didn’t intend to offend, I apologise.

I was prompted to write this by the recent extract from Jo Marchant’s book ‘Cure’ in The Observer, in which she repeated many of the misconceptions about ME I’ve already dealt with in previous posts. It seemed a bit dull just to say it all over again, so I thought I’d do it a different way this time.

If there’s any similar misconceptions about ME you’d like to share, please feel free to do so, either in the comments to this post, in tweets to me at @spoonseeker using the hashtag #MEmisconceptions or anywhere you like.

17 thoughts on “101 Misconceptions About M.E.”

  1. I didn’t know about not wearing shoes being a cure, intriguing. I suspect it relates to us not buying many shoes. Someone who had ME didn’t wear shoes so much (because they rested up at home) and then they got better?!

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    1. Nice guess, Jenny, but no – it doesn’t relate to the other shoe remark. It’s to do with the idea that we can help our health by earthing our bodies. Inside you need to use an earthing mat (which you can purchase at some expense) but outside you just need to take off your shoes. This post wrote itself pretty quickly and I’m not sure which part of my limited memory this particular piece of advice sprang from. I almost cut it out and really I should have done because if I’m honest I’ve never spoken to anyone who’s tried it so I’ve no feedback to go on either way. I’m pretty confident, however, that it isn’t evidence based!

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      1. Ah I have come across earthing but not paid too much attention.
        I have sometimes found grounding meditations helpful in a tired but wired state, but that is a different thing, reminding yourself of being connected to the ground as relaxation from a busy mind (or all the frustrating misconceptions about ME!).

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    1. Thanks, Findlow! I had to look up which was No.63 but wasn’t surprised I’d guessed correctly which one it would be. Sir Simon truly has a special place in our hearts. I wish to make clear that I do not wish him harmed in any way. I just wish him retired. As for Jo Marchant’s book, I have to admit I’ve been so annoyed at the ME references that I haven’t really got round to thinking about her central theme of placebo. It is a very interesting phenomenon and I’ll have a look at that link. I just wish she hadn’t spread nonsense about ME to try to back up her arguments. You can see why she did it though. It’s not surprising that it was her chapter on ME that got run in the Observer. We’re good box office.

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  3. “The Lightning Process works. If it doesn’t, you’re not doing it right so obviously it’s your fault you’re not getting better.’ ‘Not trusting the experts just proves you don’t want to get better.’ ‘Of course we’re not discriminating against you on the grounds of a medical condition by refusing to do a rudimentary tests for you. For us to do that you’d have to prove you actually have a medical condition, which might be difficult in the absence of test results.’
    If this wasn’t so serious, this would be a fun game. Congratulations on another great blog, mrspoonseeker. I particularly liked the part where you apologised if you’d offended anyone you didn’t intend to offend – that had me laughing out loud 🙂

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    1. Thanks, Polly! I suppose we could sum those up by saying ‘There’s always a Catch 22’. But one of the (more obscure) definitions of ‘catch’ is ‘a device for securing something such as a door, window, or box’. So maybe all we have to do is to unpick the lock….

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  5. Great stuff. :)’evidence-based medicine’ works best if you tell people there isn’t any, and ban them from showing you evidence;What you won’t look at doesn’t exist;All Trials wants the data from all medical treatment trials to be shared;What a psychologist or psychiatrist believes to be true is true by definition, and needs no proof, but what a scientist actually discovers and, openly, proves, is to be distrusted;Questionnaires are scientific and unbiased;Words mean the same thing to everyone;Consultants listen to what people say, rather than hearing what they want to hear;Medical professionals are interested in assessing signs and symptom, in order to get an accurate diagnosis;There is a diagnostic capability anywhere in the NHS;There is somewhere in the NHS a coordinating body;Someone in the NHS knows about more than one small bit of your body;A body can be scanned all in one go, instead of in jigsaw fashion over many years;Early detection is possible under the NHS system;The physiology of an elephant is best discovered by a sequence of blindfolded men, who each feel a different part but don’t talk to each other, and wouldn’t understand each other if they did;When a psychiatrist or doctor reads a book and acts upon it, he’s an expert: When a patient reads the same book and asks for appropriate action, he’s a hypochondriac;Doctors are the only people who can read, but they don’t need to, because they learned everything at college and have forgotten nothing;Psychologists are the only people who can think;Young people just out of college know more about how a person thinks, than that experienced person who’s been thinking and reading at least three times as long;The internet has no useful information, but 30y old text books are great;Doctors know the first thing about fault finding algorithms and how to follow a logical diagnostic sequence to its conclusion;A doctor who becomes a patient is no longer to be trusted or respected;Your ‘care coordinator’ works for you;Your doctor works for you;A ‘care plan’ is not really a confession statement;Being ill is a crime;Disabled people and chronically ill people are the same;Psychiatry is based on science;A psychiatrist’s word trumps all;Psychiatrists are not judge and jury in their own courts;Disagreement with a psychiatrist is a mental illness;There is an end to this list…Keep it up,:)

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  6. Thanks, Steve. Some great ones there. My favourites:
    Someone in the NHS knows about more than one small bit of your body
    When a psychiatrist or doctor reads a book and acts upon it, he’s an expert
    When a patient reads the same book and asks for appropriate action, he’s a hypochondriac

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  8. Doing yoga will make you better. Tai Chi will make you better. Eating Paleo will make you better. People with M.E don’t need to use wheelchairs. Everyone who uses a wheelchair can’t walk. People that can walk don’t have a disability. Test results from Drs in other countries don’t mean anything. Those abnormalities in your blood are not the kind we worry about. We’re not worried by that type of swollen lymph nodes. M.E is not progressive.

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    1. Thanks, Justine. All good. My favourite is ‘Those abnormalities in your blood are not the kind we worry about.’ I can’t decide whether having ME is more like being in a Kafka novel or ‘Alice in Wonderland’!

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  11. I love this list and your irreverent humour! It would be even more funny if it wasn’t so painfully true. I wanted to know if it would be ok to use this article in a video. I make videos about living with a chronic illness, and I would of course give full credit and link back to your blog and also be happy to give any other information to my viewers about you and your blog. I couldn’t find another way to contact you, so I apologise for just leaving a comment. Please let me know either by e-mail or via social media links/blog, links to which are on my youtube channel. Even if you decide not to, I thank you for writing this.

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