We won't be pressured into sharing info that could potentially damage patients or encourage them to self medicate. Taking some pills will not cure you, you need lots of info, support, a buddy system to take it properly for it to work. Please be patient. We are working for it!
@exceedhergrasp1 Had wonderful advice about how we would be treated by ME experts and they were bang on. Allowed us to be aware of the dangers of GET and the psycho-somaticisation of our illness before they have even researched it properly.
@NICEComms Is this what will happen to long haulers too? A few stakeholders dont like something so it gets paused? When so many are so desperately ill? Appalling. Listen to the science and evidence.
@andrew_croxford we catalogued it...182 symptoms by june2020 and its still growing now. stars 4-8 weeks and anywhere after 8-12 weeks youve pretty much got it....
'Long Covid' Will Be Covered by Federal Disability Law, Biden Says - The New York Times. This should immediately be applied to ME/CFS patients without having to send enormous amounts of documentation and medical letters of support. @JoanMcParland https://t.co/5jHY8Xgrov
'Long Covid' Will Be Covered by Federal Disability Law, Biden Says - The New York Times. This should immediately be applied to ME/CFS patients without having to send enormous amounts of documentation and medical letters of support. @JoanMcParland https://t.co/5jHY8Xgrov