Miss Swirley

Life on pause. ME/CFS sufferer. Live life while you can, treasure what you have, fight for those who can't. ❤️

[Miss Swirley @MissSwirley]

@SquashedSiren @GrandeBettina @JohannaBorde Great question, I donated to this myself. Where is that money?!? I have ME/CFS and was desperate for that arm of the trial to happen.

[Miss Swirley @MissSwirley]

@aimee_hirayama @MEFoggyDog @katkatski I haven't been able to describe it. People think headache but it's not - my brain feels wrong. They suggest painkillers, but it's not pain & they won't help, it's just very wrong. The depth varies - it gets worse after cognitive exertion. It does feel exactly like a brain injury.

[Miss Swirley @MissSwirley]

@aimee_hirayama @MEFoggyDog @katkatski Also your description of a brain injury is so fitting. A family member has a brain injury and our symptoms and experience is very similar now in some ways, though he has more function and capacity than me. But that's how my brain feels most days...1/2

[Miss Swirley @MissSwirley]

@aimee_hirayama @MEFoggyDog @katkatski I'm exactly the same and my M.E. is on the severe border. I'm often not that tired. But I can do almost nothing without PEM. I'm so sick of this narrative, it's making me question if it's the same illness! I'm reassured that you describe something similar.

[Miss Swirley @MissSwirley]

@aidan1walsh @PutrinoLab I'm glad you're finding answers. I just did a black Friday deal with https://t.co/awH3nvgwdu for whole genome sequencing as the genetics stuff is becoming more and more relevant with new research.

[Miss Swirley @MissSwirley]

@aidan1walsh @PutrinoLab Sorry I've just seen these, not been checking X. No, it costs about 1k to get the whole genome done, ancestry etc are not whole genome, just a good selection. I think the paper may have said all the SNPs but I don't have the capacity to look into that. Maybe AI can help you?

[Miss Swirley @MissSwirley]

@AndrewG76201347 @FvRhijn I'm too ill to read the paper, but is it true to say that this is actually a critical & positive finding? If it wasn't replicated in other samples, it shows how past research is so unreliable due to loose ME/CFS criteria? Ie that's how the bps model was able to gather ground...

[Miss Swirley @MissSwirley]

@aidan1walsh @PutrinoLab Let us know if you find any. I did 23andme and selfdecode and can only find one of the SNPs. But I only have a list of 8 from X, not all 29. I'm considering whole genome sequencing now to try to discover the others.

[Miss Swirley @MissSwirley]

@C_Scheibenbogen @DecodeMEstudy It's a great finding. Do you think this will advance research? Can we dare to hope to get our lives back yet?

[Miss Swirley @MissSwirley]

@JackHadfield14 I'm really interested but it looks like it costs over £1k? Will it actually help my health in any way? I'm so brain fogged, trying to process all this today so I'm struggling to make sense of your project! I do have extensive private testing history & even track my lactate etc.

[Miss Swirley @MissSwirley]

@stevo5june @JackHadfield14 £700 for what?! My brain fog is bad....is there something we can do already with these results? Agree though, chronic illness is the biggest money drain with so little support!

[Miss Swirley @MissSwirley]

@erikmoldwarrior @JackHadfield14 @James6939710330 I've just checked back some blood results. ESR of 5 and then 11. I have ME/CFS.

[Miss Swirley @MissSwirley]

@cfs_jo @MoleyMECaroline @decodeme This is my hope too. It would be quite thoughtless to put out a pre announcement & prep us all to pace for it without considering if it's bad news how that might crush us. I have hope for the same reason & if it was a null result they wouldn't make such a fuss over announcement🤞

[Miss Swirley @MissSwirley]

@PolitlcsUK I have a FOI request I want to make to the DWP regarding this, but you can't be anonymous and I'm literally terrified to be labelled as a troublemaker and potentially have it affect my pip. 😫 Is there anyone braver or not on benefits willing to do this as an ally? Please DM me!

[Miss Swirley @MissSwirley]

@AltFemKG @PolitlcsUK It's only reasonable if they were assessing fairly but they don't. To anyone who has applied for pip, they know they are deliberately underscored and they don't apply their own laws for scoring fairly. It's terrifying for the disabled and will even exclude many who are severe.

[Miss Swirley @MissSwirley]

@PolitlcsUK This is horrific & even people on enhanced will lose everything. Not because you don't qualify but because they break their own laws. If you can't do it repeatedly, safely & more than 50% of the time you should get the points but they give 2 or 3 points & say you can use an aid.

[Miss Swirley @MissSwirley]

@EurekaHealthApp (this was Eireka for long covid and me/cfs. I'm not sure if I'm in the right place?!)

[Miss Swirley @MissSwirley]

@EurekaHealthApp I was a member of the beta team. I'm logged out of slack my links to the eureka website don't work, I can't find how to access it anymore. I'm not sure which email I had associated with it but I can send you a list. X won't let me DM you as you don't follow me. Can you help?

[Miss Swirley @MissSwirley]

@dianeducret @longcovidmausi @chrisle96 @akaStefie Thanks for the heads up. I think I fixed it and opened it up.