Tag: MEmisconceptions

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.