wee update:
had a couple of pretty good weeks which has surprised me. everything in life is tolerable. still worse than before my last relapse, but if life stays like this, i can work around it. tho i usually feel "good" pre-relapse, so hoping it's not the calm before the storm
had TWO dr apps this week: 1. at the nutrition clinic: anaemia has resolved so i can stop iron supps, just got some follow up apps to check my haemoglobin, B12 etc stay stable
2. GP: spoke to advanced nurse practitioner. i was sorta ready to put up a bit of a fight as it was...
to discuss tests & meds recommended by a private dr. she was absolutely lovely tho, & shocked how much ive been suffering
- agreed to D-dimer: if elevated 1 month after anticoagulation ends I may be indicated for longer term anticoagulation as i have a high risk of further clots
- agreed to fludrocortisone (YAY!)
- agreed to increasing famotidine (from 20 to 40 mg/d)
- didn't agree to steroids, but said i can call back if i relapse
- didn't agree to melatonin but not at all shocked by that, esp as we asked for 9 mg!
- agreed to tests for antiphospholipid tests but after discussing with a GP, they werent keen on doing things piecemeal so referred to haematology, should be in 2-3 weeks
bit concerned as ive heard haematology arent up to speed on the type of clotting seen post-vaccine #TeamClots
but hopefully (if i need them) the solution will be something standard (like APS or DASH score)
So overall, very happy with that outcome and glad they were happy to help like this
i'll add also that the nurse COMPLIMENTED me on being a well read & "clearly very intelligent" patient & she REALLY listened to my concerns & explained things well
i cant stress enough how much of a difference medical professionals appreciating patient expertise makes #MedTwitter
simply by listening and explaining her POV compassionately i came away content despite not getting everything i was hoping for. if the practitioner was dismissive, we could have had the VERY SAME OUTCOME but i would feel belittled, angry, and gaslit
but no idea why it's happening (PCR yesterday was negative too)
will see if they calm down, and will discuss with haematology but ideas welcome about wtf my immune system is doing (beyond the possibility that there is some low level infection). in terms of potential immune modulators, im on loratidine, famotidine, ketotifen, statins, aspirin
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#MECFS is more prevalent than MS, HIV, Parkinsons, etc. It would utterly absurd if medical professionals knew nothing of these diseases, yet this is the situation with ME
Can we also take a minute to appreciate that this was written by a ME patient. Whilst disease isnt a competition, QoL & functional capacity is lower in ME than every other disease its been compared to. It honestly feels like the closest to death you can be without dying
I dont think #POTS experts realise how all-consuming the first line treatments can be:
🚰Drink loads of water...that you can't retain because part of POTS is water-retaining endocrine dysfunction (and going to toilet every 30 minutes with orthostatic intolerance is a breeze 🙄)
🧦Wear compression garments...which are ridiculously hard to put on (especially in those with energy limiting comorbidities like ME), and are incredibly uncomfortable, especially in the heat when you need them most
🪑Be upright as much as possible...even though your literal issue is being upright. And sleeping propped upright is of course super comfortable 🫠
COVID-19 vaccines and adverse events of special interest: A multinational Global Vaccine Data Network (GVDN) cohort study of 99 million vaccinated individuals
Summary of key findings:
- Patients often had a high symptom burden
- Most tests came back normal, especially for mRNA recipients
- #MCAS and #POTS targeted therapies generally seemed most effective with few side effects
- Experience of healthcare was poor
We also ran some cluster analyses to see if we could identify patients with similar symptoms and link these to other things like test results. Unfortunately we did not find any notable clusters; possibly because the sample is too small, and/or because the disease is heterogeneous
When i was employed by @NHSGrampian i wrote a generic letter to your doctor about key things to look for in #longcovid/#postvac:
The aim was to give drs some direction based on emerging evidence as the NHS has offered nothing helpful in terms of guidance dontbelievehype.co.uk/covid-%26-vacc…
I was told to remove any reference that i worked in the NHS which i had initially written in the letter.
The NHS didnt want any association with *checks notes* evidence. It was deemed "too risky".
Its almost like they had an expert employed and deliberately chose not to listen and act accordingly... And now theyre being sued for negligence. I feel like this might have been avoidable, especially so in Grampian's case...
If we look a bit closer at the results, it does look like a subgroup of IVIG patients get distinctively better (> 20 % improvement), and other get a bit or significantly worse.
From this, I surmise that we could maybe predict most will experience light improvement with albumin, but the outcome is less predictable with IVIG, though favouring improvement to some extent.