I don't know if I can move past it. I have a supportive partner, parents and a few good friends who've stuck by me. A lot of people bailed or...
Bit of a sidebar but I just want to point out that this in combination with my doctor's gaslighting was a big factor in me doing couch to 5k and...
And herein lies so much of the problem. Ranty person (whoever they may have been...) used their influence in order to sway NICE to disregard the...
Im really sorry this happened to you. I think the only way to change patient experiences is for there to be mandatory training for all physicians...
Absolutely insane that anyone can look at the facts of this case and come to the conclusion that nothing could have been done. What a fucking joke.
Thanks for clarifying about NICE. To be clear I meant that it would not be necessary to wait for the results of the LIFT trial to do a UK LDN and...
I think LDN/Mestinon are already so widely used/prescribed that I don't think waiting for the trial results would be necessary in that case. I...
I understand your perspective, however I was talking about UK trials of drugs that are in trial elsewhere in the world on the basis of a...
I am currently weighing up whether going into the surgery to get an issue checked out is worth the crash and covid risk, or whether I should wait...
Well that's a load of dangeous bullshit. The Millers and Wallitts of this world have a lot to answer for. Let's hope at an inquest someday.
Some drugs being trialled elsewhere for ME and LC that UK trials would be worth considering if the current trials bear fruit Rapamycin IVIG/SCIG...
There were leaked memos going round the covid groups a while back where it was literally NHS policy not to test for covid if you were sick. Like...
Yes on some level they know they are charlatans, and they are terrified of a biomarker that exposes them as such, or a treatment that returns pwME...
Yes, if I had been told that my doctor was telling me the mind and body are connected because he believes that ME is a conversation disorder, and...
If it is brain damage, are we cooked? Or is there still treatment possibilites that can be trialed?
I also just want to flag up that I haven't seen any outlets report on Sean O Neill's calling out of SW by name. This is not surprising, as I...
The There for ME letter is very good. Very impressed by them generally. Shepherd's isn't bad either. Both more measured, better argued and less...
Good God, how well put. That is literally what happened to me. Politely asking for help until their neglect and gaslighting made me so sick I...
But it isn't impossible to retrain doctors not to gaslight and abuse ME patients. Nor is it impossible to fund ME research properly. These are...
False hope did far more damage to me than my natural inclination to pessimism.
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