Beth

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

@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.

I desperately want to end it all today

@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_OBrien_ Exactly. They don’t realize they’re the problem.

BFFR, Robert. You made an inflammatory post yesterday that served no other obvious purpose than to sow division in the IACC community, then when ppl rightfully pointed out the flaws in your logic- you blocked everyone and then cont’d making increasingly inflammatory remarks

@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_OBrien_ Bingo ✅

@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.

The only person who should be embarrassed is you. There were plenty of ppl in the comments practically pleading with you not to go down this route, that we’re all sick, that this doesn’t help anybody, yet you chose to continue to fling shit. Fuck all the way off

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.

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.

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

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

@Beth_OBrien_ @Dfrizz007 @Yrrepmot …says the narcissist who throws a few buzz words around and makes the tweet about herself. Again, same old same.

Your ME/CFS triggered by a SARS-CoV-2 infection, yea that’s Long COVID.

@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_OBrien_ @Dfrizz007 @Yrrepmot Confirmed again. Do any of you actually read anything? I said I don’t want to be associated with the words and actions of these people.

@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..

@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.

@Rob_DeRosa @MECFScomrade @StuckinEbed … logic?

@MECFScomrade @StuckinEbed And this is the problem with ME/CFS.

@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?

I’m not part of any crew or influence of anyone - seriously I’m 42 years old. Not in high school. I’m not doubting people are sick. I AM ONE OF THEM. I also do not tell people I am in between hospice & palliative care. Let’s be honest here. Just because I believe clustering and labeling symptoms arbitrarily and with random acronyms washes out the true cause of my illness and waters down any hope of solving it doesn’t mean I’m invalidating anyone else’s symptoms or experiences or that I do not relate to them. I’m not digging any holes but I am clearly seeing why ME/CFS has the stigma that it has today and will continue to have into the future thanks in part to the unhinged behaviours of histrionic keyboard warriors. It’s embarrassing and I am one of many who do not wish to be associated with it.

@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.

@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.

I’ve been making my way through the Welfare Reform Bill and this on the gov.uk website is genuinely disgusting. Receiving a decent disability benefits rate “encourages sickness”, does it? Funny, I thought it just enabled severely ill and disabled people to eat.

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

@Beth_OBrien_ Ah, I've now seen... The PHEIC is NOT the same as the virus. It's a strategic emergency response by its hosts!🙄 LC has increased re ONS, so really don't know why he'd say this.. ⏫️LC, ⏫️severe LC & latent sequelae. Logic, eh?!😜 You're always welcome, hope you're OK soon🤞❤️

@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. @beth_sara_obrien/post/DKix4ktoMLJ?xmt=AQF0a1oFrU-6h6Xs3Mikumm2_19BNG1WhJ3C2DSb-4rYvQ" target="_blank" rel="nofollow noopener">threads.com/@beth_sara_obr…

@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..

like why are you freaking out at a right winger posting ur dumb response, and then like bragging about millions of people seeing your tweets lol? even if that tweet was from a normal guy like, have a fucking sense of humor

everytime i forget why i dislike taylor lorenz i am reminded that she is incredibly annoying and somehow doesnt understand that for better or worse covid is over, and that she really has to drop this shit lol

@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.

@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