The strength it takes to live with #SevereME for decades defies understanding
Let alone when it begins in childhood, preemptively deleting the opportunities and joys of a normal life
Left having to fight for yourself in the midst of debilitating illness with little to no help
Let alone when it begins in childhood, preemptively deleting the opportunities and joys of a normal life
Left having to fight for yourself in the midst of debilitating illness with little to no help
https://twitter.com/MECentraal/status/1424008804098879493
And then most healthy people dare to say #severeME is fake/malingering or too much complaining, then to deny it or give BS advice?
Please, feel free to get in the shoes of a #pwME for a few years. The #millionsmissing have left plenty of them on the roadside for you to try.
Please, feel free to get in the shoes of a #pwME for a few years. The #millionsmissing have left plenty of them on the roadside for you to try.
On the #SevereME menu: at a bare minimum, a dozen symptoms that leave you bedbound 24/7
Unable to tolerate light, sound, touch, smells, to think, speak and move
Requiring assistance to eat, shower, use the toilet
The smallest thing you do flares your symptoms for days or weeks
Unable to tolerate light, sound, touch, smells, to think, speak and move
Requiring assistance to eat, shower, use the toilet
The smallest thing you do flares your symptoms for days or weeks
The cherry on the cake, you ask? Well, go see a doctor.
They’ll say it’s all in your head, and if they don’t decide to section you in a psychiatric ward, you’ll get prescribed exercise and talk therapy. Where you’re taught to ignore your symptoms and to push through them.
They’ll say it’s all in your head, and if they don’t decide to section you in a psychiatric ward, you’ll get prescribed exercise and talk therapy. Where you’re taught to ignore your symptoms and to push through them.
Yes, that’s right.
You’re bedbound, debilitated, and the hallmark feature of your #severeME is that the smallest amount of physical or cognitive exertion makes you crash
But the doc says increasing your physical activity and not thinking about your symptoms will cure you!
You’re bedbound, debilitated, and the hallmark feature of your #severeME is that the smallest amount of physical or cognitive exertion makes you crash
But the doc says increasing your physical activity and not thinking about your symptoms will cure you!
If refuse, you can say goodbye to any medical care.
Oh also, if you get worse and have to go to the hospital, maybe with an urgent life threatening issue like not being able to eat and needing tube feeding, then expect to be sectioned for having a “psychiatric” condition.
Oh also, if you get worse and have to go to the hospital, maybe with an urgent life threatening issue like not being able to eat and needing tube feeding, then expect to be sectioned for having a “psychiatric” condition.
Don’t believe it can happen?
Talk to @HelpHolgerNow, @gigivsthegalaxy, @thane_black, @DafoeWhitney, who have endured it
Or read the #severeME accounts of Sophia Mirza (died after being sectioned) and Karina Hansen.
me-pedia.org/wiki/Sophia_Mi…
me-pedia.org/wiki/Karina_Ha…
Talk to @HelpHolgerNow, @gigivsthegalaxy, @thane_black, @DafoeWhitney, who have endured it
Or read the #severeME accounts of Sophia Mirza (died after being sectioned) and Karina Hansen.
me-pedia.org/wiki/Sophia_Mi…
me-pedia.org/wiki/Karina_Ha…
For all the #severeME cases that the community of patients #pwME knows about, there are probably hundreds we’ve never heard of
Wrongful sectioning isn’t just psychologically but also physically harmful. Hospital environment + careless treatment = permanent crash/worsening likely
Wrongful sectioning isn’t just psychologically but also physically harmful. Hospital environment + careless treatment = permanent crash/worsening likely
If you’re lucky, you could meet a helpful doctor who doesn’t say #severeME is all in your head.
Maybe they’ll prescribe meds and not talk therapy for pain, allergies/sensitivities, insomnia
Maybe they’ll refer you to specialists if you have signs of undiagnosed comorbidities
Maybe they’ll prescribe meds and not talk therapy for pain, allergies/sensitivities, insomnia
Maybe they’ll refer you to specialists if you have signs of undiagnosed comorbidities
Maybe, even, they’ll tell you to be very careful in how you spend your energy, planning basic things like a shower or eating with rest before and after
(But you already pace your activities, it’s not like #severeME gives you a choice)
Good luck finding that doctor, though.
(But you already pace your activities, it’s not like #severeME gives you a choice)
Good luck finding that doctor, though.
Because medical education on ME, let alone #severeME, is non-existent around the world. Med students are taught it’s a “functional somatic” / “medically unexplained” syndrome = psychosomatic.
As always, patient associations and doctors with ME have to do the job of fixing that
As always, patient associations and doctors with ME have to do the job of fixing that
To sum it up:
You’re chronically debilitated by #severeME, for which there’s no effective treatment and medical research is the least funded by disease burden
Docs think it’s in your head, prescribe harmful interventions but no symptomatic treatments, don’t check comorbidities
You’re chronically debilitated by #severeME, for which there’s no effective treatment and medical research is the least funded by disease burden
Docs think it’s in your head, prescribe harmful interventions but no symptomatic treatments, don’t check comorbidities
Finally, disability aids and benefits?
1. Hope you have the energy to apply (can take months w/ #SevereME)
2. Good luck being accepted when your condition is associated with psychosomatics and malingering 👇
3. If you get them, they won’t ever cover your needs, eg paid carers
1. Hope you have the energy to apply (can take months w/ #SevereME)
2. Good luck being accepted when your condition is associated with psychosomatics and malingering 👇
3. If you get them, they won’t ever cover your needs, eg paid carers
https://twitter.com/jimfaas/status/1422591368816472072
So, want to get on the #SevereME train?
If you don’t, think twice before saying that #pwME are lazy cunts going after your tax money.
Or shut up, recognize that they’re more resilient than you’ll ever be, and that they wouldn’t complain about any of your healthy life problems.
If you don’t, think twice before saying that #pwME are lazy cunts going after your tax money.
Or shut up, recognize that they’re more resilient than you’ll ever be, and that they wouldn’t complain about any of your healthy life problems.
Understand that #pwME would prefer your problems to being so physically ill, with no reasonable hope that an effective treatment will come soon, that some go through assisted suicide. lobel.nu/anne.html
And inform yourself better on #SevereME
dialogues-mecfs.co.uk/films/severeme/
And inform yourself better on #SevereME
dialogues-mecfs.co.uk/films/severeme/
If you really believe that anyone would want to fake this level of disability to get “secondary gains”…👇
Then look in the mirror, the problem is right in front of you.
#SevereME #millionsmissing #SevereMEday #SevereMEweek #pwME #MyalgicE #MEcfs
Then look in the mirror, the problem is right in front of you.
#SevereME #millionsmissing #SevereMEday #SevereMEweek #pwME #MyalgicE #MEcfs
https://twitter.com/irishmecfsassoc/status/1424159910879768579
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