MxFraud

Edit: Thank you all for the help ❤️
I've got a lot of replies, and I passed on a subset (for now, I don't want to overload them either).
You are truly the best 💜

Fediverse: what are good resources to send to people that just got Long Covid / ME / CFS ?
They don't even know it is a thing that exists.

I would prefer something that does centers "ME/CFS" as opposed to "Long Covid", because in the context of the person that needs it, they might get less support mentionning covid.

I know I'm asking the people with no spoon to do some work, but I also know that you'll have the better things than google/ddg.

Ziness, books, websites, videos, any medium.

Boosts are very welcome  

Hashtag salad:
#LongCovid #MECFS #ME #CFS

Jun 25 at 9:48pmWeb
Show threadAhimsa3d ago

@mxfraud
Two fact sheets from the Science 4 ME forum (@s4me)

1) What is ME/CFS:
https://s4me.info/docs/WhatIsMECFS-S4ME-Factsheet.pdf

2) Post-exertional malaise (PEM):
https://www.s4me.info/docs/PEM_Factsheet.pdf

The CDC has this useful handout but I see in your profile you are from the UK so not sure if a USA source is helpful.

3) https://www.cdc.gov/me-cfs/pdfs/toolkit/What-are-MECFS-Symptoms_508.pdf

For more detailed info you can check out the MEAction website (they have a UK chapter)

https://www.meaction.net/what-is-me

#MEcfs #PwME

Show threadSarah dreams of beans3d ago

@ahimsa_pdx @mxfraud @s4me +1 to all these. S4ME and ME Action both helped me personally when I got long covid (or post-covid ME/CFS).

If the person's doctor doesn't have a clue, or they just want to jump into the fine tradition of ME/CFS patients reading journal articles, I also like the physician practice guide that ME Action put together with the Mayo Clinic:

https://www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext

Show threadWintermane ¦ Human in training3d ago

@mxfraud

https://meassociation.org.uk has some useful information and resources.

The ME Association - The ME Association

The ME Association provides support, research, expert information and a helpline for the community of people affected by ME/CFS

The ME Association
Show threadRobotistry3d ago

@mxfraud
Basics:

The MEAction Pacing and Management Guide is really good: https://www.meaction.net/_files/ugd/b5886a_c7de035227cb4dbc8049dbd28852971c.pdf

Advanced stuff:

I like the Hummingbird scale to assess severity and track changes over time (unfortunately the main page is down, but there is an online archive; note that this looks overwhelming, but it helps to call out the cognitive stuff separately from the physical stuff and to figure out where you are in terms of what kind of capacity you have and how bad your symptoms are): https://web.archive.org/web/20211206142951/https://www.hfme.org/themeabilityscale.htm

PLRC worked with rthm to assemble a treatment guide that might be helpful once they're ready for that (it has a bunch of citations so they or their dr can check the quality and applicability of the treatments): https://www.rthm.com/resources/blogs/long-covid-treatment-guide

Also pulling in the @longcovid group in case they have more ideas.

Show threadsecretsloth3d ago
@mxfraud this isn't an online resource, but I had an amazing physical therapist who was the only person in my area who knew anything about MECFS. He was able to help me build my grip strength and things after a fall from my wheelchair, while also monitoring me and showing me when it was time to stop (I actually learned I needed to stop sooner than I previously believed, so seeing him was VERY helpful!) I highly recommend PT to learn pacing if that's a thing covered by your friend's insurance.
Show threadNilaJones3d ago

@mxfraud

If they are a person who likes information, the forums.phoenixrising.me site is a treasure trove! Real people's real experience, going back decades, meticulously organized

Not suitable for someone who is going to be overwhelmed by too much, too soon 😊

Show threadHulk Smash COVID2d ago
@mxfraud my covid/long covid website has a lot of info and resources: https://www.the-maskers-comic.com/ one of the Nature articles on long covid I link to on it is https://www.nature.com/articles/s41579-022-00846-2
Home

The Maskers Comic marries covid awareness and advocacy work with comic art, fact-checking writings, and resources.

Show threadOoze 𓁟2d ago
@mxfraud The Gupta Program https://guptaprogram.com/
Gupta Program – Brain Retraining for Chronic Illness

Heal your body with the only science-backed brain retraining program for chronic conditions. Reverse symptoms and reclaim your life today.

The Gupta Program
Show threadMr Chimp2d ago
@mxfraud https://knowmecfs.org/
Know ME/CFS | What Is ME? Myalgic Encephalomyelitis Definition & Symptoms

What is ME? Myalgic encephalomyelitis definition, symptoms, pacing, crash management, long COVID, POTS, diagnosis & treatment. Free patient & caregiver guide.

Know ME/CFS
Show threadRyellity2d ago

@mxfraud

These may be helpful as well
https://www.lshtm.ac.uk/media/97546
https://www.lshtm.ac.uk/media/97541

Show threadKavana Ramaswamy2d ago

@mxfraud

Dunno if someone else has already posted this link, but

https://lcmedata.org/

Is useful for UK folks

Long COVID / ME Data

Patient-sourced data analyzed with AI to help the Long COVID and ME community make better decisions.

Show threadJennifer Moore 😷2d ago

@mxfraud

If standing up makes them feel worse and lying down makes them feel better, then postural tachycardia could be a factor, in which case:
https://www.potsuk.org/