@StevePhillipsMD Is it not a double-edged sword though? The world can be cruel to those who admit weakness or failure

@KittyGF03 Everyone has weakness. I think it shows strength to face that.

@StevePhillipsMD I feel rage that the m.e/cfs community has been stigmatised and ignored for decades and now that people are suffering with longcovid which completely overlaps the symptoms of m.e drs seem baffled by this new disease,there wlll be no answers for millions of new sufferers

@irishbren17 Me too actually. I think it's a disgrace.

@StevePhillipsMD We indeed tell our stories. We bring our SPECT scans and NK cell tests. No one cares. Here is my story

@PeonyLeaves905 Some people care. Finding a good doctor is very much a numbers game.

@StevePhillipsMD I’m not sure stories make a difference if no one is listening and there is stigma. It’s not the telling that’s the problem, it’s are the right people listening? The plight of #pwME has largely been ignored over 3 decades. This is not a quiet community and little has changed. :/

@DressFor_ME Agreed. It's the same for all the related chronic illness communities. Things change glacially with lots of publicity and noise, but not at all in silence.

@StevePhillipsMD Stories and anecdotes often increase awareness and empathy. Speak out loud and we will support you.

@jkw4444 I was so glad to read your profile. I tweeted about care inequity for adults with sickle cell.

@StevePhillipsMD I have several chronic conditions, I don't feel shame for having them. I do sometimes feel frustrated, overwhelmed, depressed etc but I have very supportive family & friends & that is what matters.

@StevePhillipsMD Sometimes talking about it just makes things worse; some people have just made up their minds that you are swinging the lead and there is no shifting them.☹️

@StevePhillipsMD Tell your story, and find a better doctor.

@StevePhillipsMD Only certain people will be able to tell their story, others will not be able to without negative, dismissive energy....and worse, people will just ignore them and not say a word.

@StevePhillipsMD That story must then be heard and received with compassion and understanding. We #ME people have been telling our stories for decades but we’ve been met with turned backs, boredom and intentional ignorance.

@StevePhillipsMD You have received a number of replies to your assertion, Dr Phillips. I would have thought that some further input to the conversation was appropriate.

@StevePhillipsMD The antidote for shame is to unpack the medical bias against chronically ill patients that pathologizes the patient rather than looking for answers. Place the blame squarely on the medical community, where it belongs.

@StevePhillipsMD 2/2 DMSO) + azithromycin + Plaquenil + a cephalosporin abx.. I got better after administering this stuff just 6 times! I have not relapsed in 8 years! The MSM may help the abxs to penetrate better into Bb. You may be able to get 95% well on this treatment too! WILL YOU LISTEN?

@StevePhillipsMD Sophia Mirza’s story was told by a tv news programme after her death in 2005. Her story is one of medical ignorance, mistreatment, neglect & the 1st avoidable death from ME in the UK. Yet the same harmful treatments are pushed on #pwME 15 years later.