@DafoeWhitney Incredible post @DafoeWhitney Thank you so much for using your precious energy to raise awareness and be a voice for all of us .π Hope that makes sense,couldn't find the words !π« Very severe M.E π§ .ππ«
@Naomi_D_Harvey Aww thank you π .I'm not able to come on here much as it uses so much cognitive energy. You are all in my thoughts. I will try & do an update soon .I'm very severe think I'm in a permanent crashed state most of the time .Hope you are as ok as you can be.xx
@hopefullizzy Hopefully, they will adjust the feed rate , volume & type of feed to what your stomach can tolorate if you appear to be not tolerating it . I have Nutrison multifibre soy feed as i couldnβt tolerate the standard feed. Hope that makes sense. Sending love xx
@hopefullizzy Oh, that's so good to hear.I hope you tolerate the NG feeding.I didn't realise until i got home with mine that you can pause or stop the machine if you feel sick & full as in hospital they wouldn't even pause it whilst i was vomiting .Their main aim was to complete the feed.π
@hopefullizzy I am able to eat & drink small amounts .I had to battle to come home with an NG .Hope that all makes sense .Its so hard to type. Stay strong and remember its your body .There's so much more i could tell you if only my brain would cooperate.take care thinking of you .π«π
@hopefullizzy I,ve had an NG for 15 mths ,I was told by the hospital that its not possible to have an NG at home.A nurse comes & replaces it every few months .I am rarely sick now my weight is stable. Consultant wants me to have a peg but I'd rather not until i absolutely have too
We have reached the goal of Β£3.5K for @MEResearchUK !!!! However, please still continue to share if you can!! @MEResearchUK deserves all the money we can raise to help us ME Patients!! ππ
Would any journalists be interested in investigating the allegation of a secret or semi-formal agreement between the Royal Colleges of Medicine and the General Medical Council to not accept complaints from patients with ME or about ME-related medical neglect? 1/2 #MECFS
The handling of ME/CFS is clearly one ofβif not theβbiggest systemic failures in modern medicine. Iβm convinced that nothing else even comes close, at least not in the Western world. In no other case is there not only such profound neglect, but also so much active harm inflicted.
I can't lay here. i can't sit still. I can't work on anything. They all just make me want to scream. But there's no way out. No door that I can walk through. No path through the wide world beyond that will carry me. Nothing to do but silently scream. #MECFS#LongCovid