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#meawarenesshour
It's Weds 8pm. The weekly echo chamber of preaching to the converted.
@NICEComms please would someone read all the historical tweets #pwme have sent. We need to be heard. So many problems can be solved by first listening, so many people are desperate for help.
It's Weds 8pm. The weekly echo chamber of preaching to the converted.
@NICEComms please would someone read all the historical tweets #pwme have sent. We need to be heard. So many problems can be solved by first listening, so many people are desperate for help.
@NICEComms
One of the first things you may notice is that so many people are telling the same story and most of us don't know each other. Don't you find that strange? That would tell me first that something isn't right and something isn't working. Why would people do that?
One of the first things you may notice is that so many people are telling the same story and most of us don't know each other. Don't you find that strange? That would tell me first that something isn't right and something isn't working. Why would people do that?
@NICEComms Do you think #pwme are all crazy activists? Not right in the head and need some CBT? I am a Mother with a child diagnosed with CFS because no doctor has wanted to call it M.E. I am a Mother who just needs help for her child living a half-life
I watch as people use what precious energy they have to beg for help, it's like witnessing drowning souls scream from the depths of hell but no sounds come out as people who could help walk on by, ignoring the "lazy" people. Is that what you still think of people with ME/CFS?
@NICEComms Do you ever read your tweets?
I would really like to know why #pwme are ignored, why their voices are not listened to. Something is desperately wrong when thousands of people are trying to let you know the "treatment" is not working and people are being harmed.
I would really like to know why #pwme are ignored, why their voices are not listened to. Something is desperately wrong when thousands of people are trying to let you know the "treatment" is not working and people are being harmed.
@DHSCgovuk People with ME/CFS need more medical research NOW. As you well know many people can develop ME/CFS after getting a virus. Why are so many still being treated as if it's in their head? Why hasn't @NICEComms added any warning while waiting for the review to complete?
@NICEComms What concerns me is if a warning has not been added to your guidelines it shows just how NOT seriously you take the word of patients who are desperately trying to tell you something is wrong. If the treatment worked you would either hear nothing or praise.
@NICEComms The well being of patients should be your first concern. It is your responsibility to help guide doctors to treat their patients. They are only human and can't possibly know every in and out of every ailment, they need your guidelines. Are you knowingly harming people?
@NICEComms If you continue to ignore the complaints of thousands of patients you are complicit in medical negligence. The cycle of hell will continue for current and future patients, doctors will continue to advise the wrong treatment based on your guidelines.
#meawarenesshour
#meawarenesshour
@NICEComms How many years and lives will it take for you to listen and take heed of what we are all saying? How many more to actually take action?
You'll be hearing from me again, I don't have ME/CFS I am the very pissed off Mother of a child who has and you're hurting my child.
You'll be hearing from me again, I don't have ME/CFS I am the very pissed off Mother of a child who has and you're hurting my child.
