- It’s all about fatigue.
- There are no distinctive symptoms
- There is no evidence of physical abnormalities
- It may not even exist
- Most people recover
- People with ME don’t want a psychiatric diagnosis because of the stigma
- Because we don’t have enough stigma already from having ME
- People with ME are scared of exercise
- You need more exercise
- You need more fresh air
- You’ll get better by fighting it
- You’ll get better if you think positive
- You’ll get better if you push on through the pain
- You’ll get better if you stop wearing shoes
- All your friends will understand
- If you can do something today, you can do it tomorrow
- You look as well the rest of the time as you do for the one hour a week when you see your friends
- I feel like that as well
- That’s how I feel on a Monday morning
- That’s how I feel on a Friday night
- You should have got better by this time
- You have to keep going
- You can’t let people down
- You’re probably just feeling stressed
- The doctor will know what to do
- Doctors are trained in ME
- You’ll be pleased to know that your bloods are normal
- We need to avoid extensive testing
- You wouldn’t get upset like that if you weren’t depressed
- Anti-depressants will make you better
- If you go to an ME clinic, you’ll see a doctor
- Oh yes, we all think it’s a physical illness here at the clinic
- Graded exercise therapy (GET) and cognitive behavioural therapy (CBT) will make you better
- GET is perfectly safe
- Proven physical intolerance to exercise can be overcome by doing more exercise
- You’ve recovered if you can walk as far as patients with congestive heart failure
- If you don’t finish the course of GET then of course you must be recovered
- If you don’t attend appointments and we never hear from you again then of course you must be recovered
- If GET doesn’t cure you and you’ve told us so then you must have ‘illness anxiety’ instead
- Or one of numerous other ‘psychogenic’ conditions we’ve invented – you can take your pick
- We don’t rediagnose people to massage our outcome figures – that’s just a by-product
- Dividing illnesses into ‘physical’ and ‘non-physical’ is a mistake that patients make, not doctors
- People get ME because they want to be perfect
- It’s the patient’s fault
- It’s the parents’ fault
- You are making your children ill
- We have to set goals for your children
- Your children are safe with us
- Calling trials on children cute names like ‘Smile’ and ‘Magenta’ makes them less inherently evil
- The PACE trial is excellent science
- Eminent Consultant Psychiatrists can always be trusted
- 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
- This is one of the most robust findings about ME
- We’ll release our data but not to patients because their illness is nothing to do with them
- We’ll release our data as soon as we take the names off the anonymised data sets
- We’ll release the data when we’ve finished studying it (which we never will)
- We researchers get itchy about releasing data due to research parasites
- We at the PACE trial take confidentiality very seriously which is why we kept the data in unlocked drawers.
- People with ME are too vociferous for their own good
- We can’t get people to study ME because of the death threats
- It’s safer for psychiatrists in Afghanistan
- Why are you attacking us? We’re the very people who are trying to help you
- Sir Simon Wessely has to live in an iron bunker at the bottom of Loch Ness
- Some ME militants have to be chained up or they’ll savage passers by.
- There’s just not enough psychologists studying the lifestyle of people with ME
- There must be some secret, sinister reason why people with ME tend to stay at home and use the internet a lot
- Probably the same reason they don’t buy many shoes
- As soon as we understand these things, we’ll know a lot more about the causes of this illness.
- This helped me so it must help you
- If you buy one of these you’ll get better
- You look so well, you must be getting better
- You must feel better – you’ve slept so much
- You never sleep so you can’t be tired
- You must have a low pain threshold
- You should try taking a paracetemol
- You caught it off the internet
- You don’t have to know the first thing about ME in order to write about it
- This latest development has finally proven it’s not just ‘yuppie flu’
- So that’s all right then
- If you read something often enough in the papers, it must be correct
- The Science Media Centre is an accurate source of information
- Science journalists always look critically at the studies they report
- Especially in the UK
- ME is partly physical and partly psychiatric because that’s what the book I’m writing is about
- If you want to understand a neurological condition, the best person to ask is a sports physiologist in Cape Town
- 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
- ‘Chronic fatigue’ is another name for ME
- All people with a diagnosis of chronic fatigue syndrome (CFS) have the same condition
- So it makes perfect sense to compare patients in different studies – even though they’ve used different diagnostic criteria
- 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
- 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?
- All of which is very straightforward and not confusing at all
- People with ME have no reason to get upset
- 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
- It could never happen to you
- ME is not serious
- ME does not devastate lives
- ME is never fatal
- ME never leaves you stuck in bed, unable to sit up, tolerate light, or communicate with the ones you love
- If you ridicule people with ME for making a fuss they’ll stop doing it
- 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.