Gary Robinson

New paper in Geoforum with @curiosfinance and @bdrudder: "Preserving the obligatory passage point: SWIFT and the partial platformisation of global payments" Full access until 30/05/2024, if you're into this sort of thing: authors.elsevier.com/c/1ivNO_OL2Ant4 1/8

Question 🙋‍♀️ Can ketotifen worsen symptoms at first and is it worth pushing through? My dose was super low. Also felt depressed & insomnia. Someone on Reddit has gone from bedbound to basically 0 PEM on it so I’m debating it again. Desperate times lol TIA #MECFS #LongCovid #MCAS

My old account is gone permanently due to inactivity for 30 days so I lost all my connections to the #LongCovid and #MECFS community. Need to get following everyone again…

@kirstler31 ugh, I should have known you'd have tried Mestinon and reacted to it 🫠😔. Really hope you get some migraine relief

@kirstler31 So it's a shitty catch-22 😔

@kirstler31 I don't know of any at-home tests for it. Really sorry you have to deal with that awful neuro 🤬. Maybe another way to rule in/out is to take Mestinon and see if it helps. Of course the problem is getting it prescribed 😩

Does anyone know if there’s any at home tests for myasthenia gravis in the UK? I can’t find any. Neurology said that even though I’m bedbound with muscle weakness one one side of my face and a droopy eye he has no idea why someone like me should be referred among other things lol

I wonder if anyone can offer advice (I’ll delete if I get help). I was on fluoxetine 10mg for 4 years, switched to escitalopram 9 weeks ago. I think it’s worsening some ADHD type symptoms & I’m covered in petechiae. I feel unbelievably ill, but don’t know if it’s the med. 👇

Can anyone tell me if clonidine or guanfacine is safer to try? And what are the risk factors to keep in mind?

My inflammation markers are very low based on my cytokine results. My vascular markers are high. Am I right in thinking this means microdosing GLP-1 could be the wrong route for me? I was considering it but then remembered my results…#MECFS #LongCovid #MCAS

An alle Betroffenen von ME und co: Hat jemand von euch schonmal Heparin Spritzen ausprobiert? Was sind eure Erfahrungen?

@Gmwetz Thanks for asking this. It seems hard to get it in Europe. I have some but haven't tried it properly yet. Might give it a go if it has helped others.

Because of the current discussion about Pregabalin and its ability - for some patients - to reduce or eliminate the flu feeling - has someone tried Agmatine Sulfate ?

Second chance with LDA? Hello friends, I have been between severe and very severe for a year now. Bedbound, 400 steps per day (bathroom, kitchen to get food, and bathroom again to brush my teeth), no TV or books… My phone and talking with my wife structure my days… I had taken LDA for a few months last year and it worked well. I had increased to 1500 steps, some TV, computer, manga… Better tolerance to light and noise. I stopped because it was working less. I never went above 0.60 mg. I didn’t feel many side effects, but there were too many emotional crashes during that period (my wife didn’t believe in the illness and it was terrible during my time on LDA…), and after a failed stellate ganglion block, it stopped working. I’ve been off it for two months now. Has anyone been able to restart after a break when the effect had decreased? I’m desperate — it’s the only thing that really worked… Thank you. P.S.: I’ve already asked around on Facebook.

Hey, I’d really appreciate some input. I’m currently trying Mestinon and honestly don’t know if it’s helping or harming me. If you’ve taken this medication and experienced a deterioration, what symptoms did you notice? Any advice would mean a lot. Pls share🫶#MECFS #LongCovid

@pausedME Thanks for sharing all this 🙏. Glad you have improved so much, well done on the investigatory work and then implementing it ✌️

#MECFS #pwME 1/13 Some of the responses here, conspiracy claims, personal attacks, insinuations, and insults, have been far below any reasonable standard of civil discourse. I am not posting this for that audience, but for people who are suffering.

Has anyone who has reacted badly to famotidine and/or mestinon tried Nizatidine and it’s worked well for them? TIA! #MCAS #LongCovid #MECFS #POTS

@SarahOC_MECFS @surf4children I wonder exactly why that is. The bigger the screen, the worse/quicker the energy drain for me. I wonder if it's sensitivity to flickering/dithering. ledstrain.org/d/3143-cause-o…

@lessorfewer @surf4children Exactly Screens take so much energy

‼️🚨hi #longcovid and #MECFS community. I’ve seen so many cases but I’m really fail in with 1, a 20yro boy. Tried anything but no improvements. Any tips? tried IVIG, rapamycine, LDN, antivirals, metformin. other ideas,

@SarahOC_MECFS @surf4children And probably hard to stay off phone/screens too. That ruins me.

@lessorfewer @surf4children Absolute worst! Impossible to sit still no matter how weak & exhausted you feel. Disaster

@SarahOC_MECFS @surf4children Ugh, not a great side effect when you need to pace! Glad to hear it subsided. I read that LDA can have other permanent side effects.

@lessorfewer @surf4children I only took it for a few days and it went back to my normal level of agitation..I'm on LDN and that makes me agitated too but positives outweigh the negatives. Since having covid actually..agitation/restlessness seems to be a really common side effects for me to lots of meds

@kirstler31 @SarahOC_MECFS @surf4children Makes it really hard to pace 🫠

@lessorfewer @SarahOC_MECFS @surf4children Same! Severe Restlessness is already a symptom for me. Scared of akathisia.

@SarahOC_MECFS @surf4children Did the agitation stop when you stopped LDA? Its side effect profile makes me wary of trying it.

@surf4children Low dose ability? LDA used alot in ME community for those who don't respond to LDN ..if deemed appropriate. I tried it. Made me agitated. But was hoping to give it another go at some point.