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Phoebe @PhoebsBo
, 25 tweets, 5 min read Read on Twitter
Some of the daft & unsolicited advice I’ve received over the years, from people who know significantly less about my illness & how it affects me than I do, but still, they have the answers!

#MyalgicEncephalomyelitis #MyalgicE #PwME #UnsolicitedAdvice #ChronicIllness #Disability
I should move out of (damp and mouldy) Scotland to a drier country - I’d lose my entire support network. I would no longer be eligible for UK disability benefits, and I won’t be eligible for social security in whichever country I move to. What will I do for money and support?
Take up meditation - I’ve tried, it makes me anxious. I have other methods of relaxation.
Eat a plant-based diet - Umm, I have, for 2.5yrs, and I’m not better yet! 🤷‍♀️
Stop all your medications and supplements - Stop the few things I have that make me that bit more functional? Stop preventing daily migraines? Stop sleeping? Yeah, that sounds a great idea! 🙄
Have your fillings removed, really, it will help you, I promise - If you had bothered to ask me you’d find out I don’t have any fillings.
Get outside more and go for walks - Yeah, that would nice. I miss outside, and I miss walking. That’s one of the reasons I want to get better, so that I CAN get outside more, and that I CAN walk (the same distances that I could pre-ME) again.
Open the blinds and curtains in your house, stop living in the dark - And increase my symptoms due to my hypersensitivity to light? No thanks.
Just think positively! It’s your negative thoughts that made you get ME - But, I got ME during the happiest time of my life. I’d been offered my dream job/opportunity of a lifetime to live with 3000 penguins on a rock in Antarctica (yes really). I’d genuinely never been happier.
Have you tried praying? I’ll pray for you - No, I have not. I’m an atheist. Pray for me if you must, it won’t help me, but it will allow you to feel that you are doing something to help me, without actually doing anything that would help me. 😉
Do yoga - I did, when my ME was mild. Then my ME got worse. Now that I have severe ME, yoga is an impossibility. Telling me to do things I enjoy and miss but can’t do, isn’t very helpful, and kind of cruel.
Eat more protein and Brazil nuts. Stop eating bananas and onions - My protein, Brazil nut, banana and onion intake is fine, thank you.
Get treatment for Lyme Disease. Are you sure you don’t have Lyme Disease? - I don’t have Lyme Disease. How do I know that? I was tested.
Have you tried the Lightning Process? Gupta Programme? Mickel Therapy? Perrin Technique? - No, and I have no intention to. If you try and convince me otherwise, that will just make it even less likely, I’m stubborn like that.
Take CBD oil and/or LDN - I take them already. Helps a bit. Not a cure.

Drink water - I do, almost exclusively. I still have ME.
Move to a hot country - buuuut, the heat makes my ME symptoms worse... 🤷‍♀️
Get pregnant - go through the hormonal changes that will possibly make my ME symptoms worse, pop out a baby that I don’t want, that I will then have to look after, when I can’t even look after myself independently? A slightly permanent gamble, no? Bloody hell. 😳
Get a dog - I’d love to. However, I learned recently that I don’t even have the energy required to look after a cat, how exactly am I going to walk, live with and take care of this dog?
Start swimming every day - swimming is exertion. the defining symptom of ME is the abnormal response to exertion. I’ll let you figure it out. 🤦‍♀️
I know unsolicited advice generally comes from a place of kindness, people want to help. But when you’re on the receiving end, it’s usually more patronising and irritating than it is helpful. When it’s not strangers on the internet, it’s people in real life, who didn’t even know
what ME was before I got ill, some had never heard of it. Yet now they apparently know enough about the ins and outs of my illness, my individual symptoms, my comorbidities, my medications etc etc, that they think they have the knowledge to cure me?
With every piece of unsolicited medical advice I receive I also I hear “you’re too stupid to figure this out yourself”. Do these people really believe that for the last (almost) five years I’ve done nothing but sit on my bum doing nothing, just, accepting this? No, I’ve been
researching my arse off. I promise, I’ve heard it all before. So far I don’t think I’ve received one piece of unsolicited advice that I haven’t already come across myself - some of it I’ve tried, some I plan to try, and some of it I’ve discounted (while laughing quite a bit).
No one has the answer yet, but there are some very clever and dedicated scientists working on it. What would actually help me, and everyone else with ME is if you donated some money towards biomedical research.
This is who I support...

In the UK - donate to @Invest_in_ME

In the US - donate to @OpenMedF

For other countries, ask here, and hopefully someone can make a recommendation.
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