Thread by @TweetTipsforME

This video has had nearly 30K views 👍🏻
In it @JessicaOOTC describes her experience of being locked in a psych ward after being diagnosed with #MyalgicE by the Bristol centre


@MEActNetUK #MEAwarenessMonth #pwme #PACETrial #stopGET #MillionsMissing

Despite(/because) her ME diagnosis they interpreted her low weight as anorexia. The gut/digestive issues as a result of ME go ignored. She isn’t the only #pwme to have experienced this. It is particularly tricky as an advocacy issue if people are sectioned for ‘anorexia’ not ME

It is a high priority for Dr education and I wonder if for new #NICEguidelines we need gut issues included as core to ME, rather than the current wording of IBS as a comorbidity issue?
Locking people in psych wards for this has to stop!
@exceedhergrasp1 @jenbrea @keithgeraghty

There is good evidence for gut issues being part of #MyalgicEncephalomyelitis but I also read somewhere that #pwme tend to under report digestive symptoms to drs.
(Screenshot from @MEActNetUK 2017 response to @NICEcomms )

I know I under report this aspect. I’ve just had poor sleep for 3 nights due to abdo pain and the pharmacist doesn’t want to sell me IBS remedies because of anxiety over interaction with meds. Yet I’m reluctant to even raise with my (ME believing) GP for fear of psych codes 😨

Of course there is nothing shameful about having an appropriately coded mental health diagnosis. It’s just that inappropriate diagnosis prevents appropriate treatment generally, and specifically with psych misdiagnosis we are seen as unreliable witnesses of our own bodies

In Merryn’s recent inquest *gastrointestinal failure* was implicated in her cause of death. Why should she have had to put up with being dismissed as hysterical?! 😡😭
Merryn could take on just 100 calories a day because her gut was in so much pain
#pwme #NHS #juniordoctors