Discover and read the best of Twitter Threads about #HELPApheresis
Most recents (5)
Tomrrw I leave my family for a mo to try #helpapheresis for #LongCovid. I know it isn't a cure & results vary & understand my privilege for being able to try it. But I'm going to give an honest, real-time account of it here bc so many are curious. Watch this space #TeamClots
Day 1: up @ 5AM thinking of all the things I shld do today before I leave. Realizing last night was our last fam dinner at home for a mo was tough. Hubs & kids so hopeful this will bring back some of the person I used to be. We all miss her. #LongCovid #HelpApheresis #TeamClots
Two legs of the journey down, one to go. Exhausted but in good spirits. Traveling is hard with #LongCovid & #POTS (understatement of the year). My companion is good company and keeps me smiling. 
Spot the difference (1)
20 days after starting anticoagulants, 10 days after my 1st apheresis treatment.
Remarkable findings: less brainfog, less dizzy, less joint pain, less muscle burning, less headaches.
#ME #MEcfs #LongCovid #microclots #HELPApheresis #anticoagulants
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20 days after starting anticoagulants, 10 days after my 1st apheresis treatment.
Remarkable findings: less brainfog, less dizzy, less joint pain, less muscle burning, less headaches.
#ME #MEcfs #LongCovid #microclots #HELPApheresis #anticoagulants
1/4
Spot the difference (2)
Huge improvement in available energy, cleaning my deck was impossible since winter 2020. The ‘short of breath’ symptom is less but still present, had to pause frequently. No crash, no PEM. I feel alive again.
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Huge improvement in available energy, cleaning my deck was impossible since winter 2020. The ‘short of breath’ symptom is less but still present, had to pause frequently. No crash, no PEM. I feel alive again.
2/4
Thank you for your help, research and sharing information:
@BeateJaegerMD @doctorasadkhan @dbkell @resiapretorius @MarekSJF @loscharlos @tjalcovrv @smithsj and all my dear #pwME friends.
Great video on H.E.L.P. Apheresis:
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@BeateJaegerMD @doctorasadkhan @dbkell @resiapretorius @MarekSJF @loscharlos @tjalcovrv @smithsj and all my dear #pwME friends.
Great video on H.E.L.P. Apheresis:
3/4
#URGENT Twitter, I need your help-my health is critical I travel abroad to recieve trx in 4 weeks as a #pwME- An anonymous donor has covered the cost of my #HelpApheresis trx🙏🏽🦋 We are Rapidly trying to raise costs co-trx, accommodation, ✈ & care costs. gofundme.com/f/help-Trish-a…
I am severely disabled. I have been since the onset of my illness. I suffered rapid deterioration and I'm now suffering widespread structural degeneration after being gaslit heavily for the past 8yrs. This is a chance to Save My Life. My health has been critical all year.
I have been in and out of A&E all year referred there by my specialists doctors and the ambulance services for emergency plasmapheresis treatment and they keep sending me home because I'm immunocompromised I wouldn't be immunocompromised if they actually treated me.
Update: #HELPApheresis
Zoals de meesten van jullie weten ben ik al sinds begin maart op Cyprus om daar aferese te ondergaan om mijn #LongCovid klachten te verminderen. Hierbij een verslag.
Zoals de meesten van jullie weten ben ik al sinds begin maart op Cyprus om daar aferese te ondergaan om mijn #LongCovid klachten te verminderen. Hierbij een verslag.
De afgelopen tijd heb ik enorm veel berichten ontvangen van (on)bekenden met de vraag hoe het me vergaat en andere vragen over de kliniek. In alle eerlijkheid… ik kon het aantal berichten niet meer bijhouden, dus het leek me tijd voor een 🧵
Toen ik hier begin maart aankwam ben ik direct aan twee bloedverdunners gezet, waar ik goed op reageerde. Door deze medicatie namen veel symptomen af in heftigheid en voelde ik me al een klein beetje beter. Dit beschouw ik als een aanwijzing dat clotting voor mij een probleem is.
Trigger warning- Will try keep this short. Uncovering the scale of medical gaslighting and corporate corruption. Who teaches our doctors to dismiss medically unexplained symptoms as hysteria?
Lynn Turner- MUS management PowerPoint, Kings College London
Lynn Turner- MUS management PowerPoint, Kings College London
She also developed the GAS-light model as way of determining which treatments were worth trialling ie cost effectiveness - gauging effectiveness based on patient set goals for graded assessment. If we set the goals, its not on them if the treatments aren't effective, it's on us.
Michael Sharpe is a psychiatrist&an author of the fraudulent #PACETrial. He does consulting work for insurance companies & advises them that #ME is a mental health disorder. Here he consulting for Swiss Re, classifying #LC as 'health anxiety'-
