Beth

Comedy, mostly. Redhead, inevitably-sequinned, assistance dog team. she/her

[Beth @Beth_OBrien_]

@MECFScomrade Also I’m sorry today is such a tough one

[Beth @Beth_OBrien_]

@MECFScomrade Yasmin for me. I just got very bad anxiety but keeping my hormones more even works for me. But specifically Yasmin. That aside, double famotidine that week.

[Beth @Beth_OBrien_]

@MECFScomrade I mostly hang out on threads now and had genuinely entirely forgotten they existed. They can’t do much harm to any research or funding, cause no one who understands the issue would give credence, and those who don’t understand think they’re as deluded as they think MECFS pts are!

[Beth @Beth_OBrien_]

@MECFScomrade It’s wild to watch them victimise themselves, especially when plenty of society despises us all just the same. Such a waste of everyone’s precious energy. Gotta decolonize those minds, lads, if you want disability justice. You won’t get your “cure” without it.

[Beth @Beth_OBrien_]

@MECFScomrade Oh I have zero patience for the angry, bullying white men, it’s largely thinly disguised misogyny. And they are so used to having someone to punch down at that when they become disabled, and lose a bit of their white man privilege, they have to create a “sub class” to bully.

[Beth @Beth_OBrien_]

And a lot of it is misogyny- they use words like hysterical and histrionic. Basically they don’t want a women’s disease, but a big macho EMERGENCY. Every disability is a personal emergency. I responded saying my friend had died in hospice a week ago and his response was to abuse.

[Beth @Beth_OBrien_]

It’s just true. Long Covid is everything from myocarditis to PEM to diabetes. Both deserve vast amount of research because we don’t know what is behind the trigger. Utilising existing knowledge, (eg pacing, radical rest and LDN) is also wise, for those who have the PEM phenotype

[Beth @Beth_OBrien_]

@Rob_DeRosa @Dfrizz007 @Yrrepmot Yes, and they still won’t pick you. Whether you decide you don’t want the diagnosis given by a doc. By the way, there is as yet no evidence for why a Covid infection appears to trigger a constellation of sequelae. So it is also by definition a bucket label, deserving research.

[Beth @Beth_OBrien_]

It’s sad the angry white men insist on abusing a community which saw LC coming, warned against it, shared our resources/expertise, volunteered our time for trials and studies. Mass infxn means there is no studying any viral triggered illness without studying covid, or vice versa.

[Beth @Beth_OBrien_]

@Rob_DeRosa @Dfrizz007 @Yrrepmot I wish you some kind of healing

[Beth @Beth_OBrien_]

@Rob_DeRosa @Dfrizz007 @Yrrepmot Yes, and they still won’t pick you. Whether you decide you don’t want the diagnosis given by a doc. By the way, there is as yet no evidence for why a Covid infection appears to trigger a constellation of sequelae. So it is also by definition a bucket label, deserving research.

[Beth @Beth_OBrien_]

@Rob_DeRosa @Dfrizz007 @Yrrepmot Which, incidentally, is how I got diagnosed with COVID in April 2020, as I was in a serum antibody study to see if anosmia was a defining symptom..

[Beth @Beth_OBrien_]

@Rob_DeRosa @Dfrizz007 @Yrrepmot Baby it’s just gaslighting at this point, with some lovely misogyny thrown in. Enough with the DARVO, save your energy. Do something useful, like volunteering for research studies and trials, like I do.

[Beth @Beth_OBrien_]

@Rob_DeRosa @MECFScomrade @StuckinEbed … logic?

[Beth @Beth_OBrien_]

@Rob_DeRosa @Dfrizz007 @Yrrepmot Also many people with MECFS are in hospice or palliative care, a friend of mine died only last week. Are you denying they are that sick, or saying they shouldn’t be allowed to say so?

[Beth @Beth_OBrien_]

@davidtuller1 Have you seen the official language on govt sites surrounding the planned savage cuts to disability benefits in the U.K.? It’s all “the system encourages the sickness role by paying benefits” “secondary gains”. Etc. Their grubby little mitts are all over it.

[Beth @Beth_OBrien_]

@DrFrancesRyan This has got the pace trial authors’ language all over it. Scratch the surface and you’ll find Wessely et al all over it. Bet they consulted. Sickness role, secondary gains. All that bull.

[Beth @Beth_OBrien_]

@SGriffin_Lab Thank you, I was starting to feel like I was losing my grip on reality!

[Beth @Beth_OBrien_]

@SGriffin_Lab Are you on threads? An epidemiologist is telling me that serious long Covid is an uncommon event. I am suffering devastating symptoms following a new infection, I have no energy. And he won’t believe me anyway, I’m just a stupid patient. https://t.co/7RW4LvQARx

[Beth @Beth_OBrien_]

@mitai__ Just so you know, “dumb” is an ableist slur. You need to learn literally anything about disability justice. Especially as pretending Covid is not an ongoing risk only increases your personal risk of becoming disabled yourself..

[Beth @Beth_OBrien_]

@SGriffin_Lab I hope that managing to get Paxlovid this time might protect me from worse sequelae (last time took 2 years to get my baseline back). Thanks for the response, your explanations are always so well-researched and clear. Keep up the good work, you’re appreciated.

[Beth @Beth_OBrien_]

@SGriffin_Lab No he’s saying with his full chest that the pandemic is over because nobody in the U.K. gets long Covid any more! And if they did, it’s never severe. I’m so gutted to have it again, I never go indoors without an n95 or meet anyone even outside untested. It’s been brutal, but