"Tin Foil Hat Territory? The Gupta Program, the Lightning Process and the BPS [biopsychosocial] in #LongCovid and ME: How brain retraining therapies intersect with the biopsychosocial model"
"We need to be vigilant and educated to spot this charlatanry. We need therapeutic treatments that actually work and stop gaslighting those with post-acute viral disease."
Unsure how common this is in other #ChronicIllness affecting cognition, but when you have #MyalgicEncephalomyelitis the writing errors you’re almost guaranteed to make are:
Double the same word
or
Exclude it altogether
Or do both!
So frustrating & the sicker you are the worse it gets. You simply can’t see mistakes! Other problems too ofc but I’ve found this is the most common error made by #PwME
It takes forever to draft posts so when those of us on the more severe end of #ME make one it’s really hard. I wish I could explain how tough it is & people understood how much we’re sharing of limited energy supply.
And sometimes you get too sick to read and write at all. Or look at a screen because of sensory overload.
Now it’s worse because of my recent 3rd #Covid infection which both worsens existing symptoms and gives you new ones!
"Das Kranksein hat mich gelehrt, geduldiger zu sein. Ich muss mich mit meiner verinnerlichten Behindertenfeindlichkeit auseinandersetzen und bin dadurch anderen gegenüber mitfühlender. Aber im Allgemeinen ist es durchschlagend negativ: Viele Beziehungen haben darunter stark gelitten, ich habe einen großen Teil meines sozialen Lebens verloren. Als ich krank wurde, war ich erst seit eineinhalb Jahren in Berlin, sodass ich auf keine langfristigen Beziehungen zurückgreifen konnte.
Goed initiatief! PAIS op naar Den Haag
"met dertien organisaties op het gebied van PAIS samen naar politiek Den Haag. We nodigen bij elkaar 100 mensen met PAIS persoonlijk uit. Jij bent van harte welkom om de livestream te volgen. Die kun je ook op een later moment terugzien."
Inschrijven en details over 2 uur durende programma: https://www.lymefonds.nl/pais-op-naar-den-haag
Goed initiatief! PAIS op naar Den Haag
"met dertien organisaties op het gebied van PAIS samen naar politiek Den Haag. We nodigen bij elkaar 100 mensen met PAIS persoonlijk uit. Jij bent van harte welkom om de livestream te volgen. Die kun je ook op een later moment terugzien."
Inschrijven en details over 2 uur durende programma: https://www.lymefonds.nl/pais-op-naar-den-haag
I wouldn’t have the energy for the whole event so plan to come in just before the chat over free tea/coffee/water & biscuits. Do say hello if you see me. 👋
This photo has been on my grandma's living room cabinet for as long as I can remember. She passed away a couple of years ago, and to keep her memory alive, my wife suggested we keep it in our living room.
Abstract: Since 1969, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been classified as a neurological disease in the International Classification of Diseases by the World Health Organization. Although numerous studies over time have uncovered organic abnormalities in patients with ME/CFS, and the majority of...
WASHINGTON, April 9 – Sen. Bernie Sanders (I-Vt.), Chair of the Senate Health, Education, Labor, and Pensions (HELP) Committee, today released a draft legislative proposal to address the Long COVID crisis that is negatively impacting the health of some 22 million Americans....
I don’t know if this is the better place to post this, but this is something annoying me in the fediverse, especially using/following Lemmmy and Mastodon profiles/communities....
We often hear from people with ME seeking our support because they have to see a physiotherapist for a problem other than ME. This could be something like a shoulder injury, or following knee surgery, or neck pain etc....
People with Long COVID in Australia have poor health outcomes that are comparable with another emerging disease known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Journal article: Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients (www.mdpi.com)
Abstract: Since 1969, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been classified as a neurological disease in the International Classification of Diseases by the World Health Organization. Although numerous studies over time have uncovered organic abnormalities in patients with ME/CFS, and the majority of...
NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal | The U.S. Senate Committee on Health, Education, Labor & Pensions (www.help.senate.gov)
WASHINGTON, April 9 – Sen. Bernie Sanders (I-Vt.), Chair of the Senate Health, Education, Labor, and Pensions (HELP) Committee, today released a draft legislative proposal to address the Long COVID crisis that is negatively impacting the health of some 22 million Americans....
Better Mastodon/Lemmy Integration? (leminal.space)
I don’t know if this is the better place to post this, but this is something annoying me in the fediverse, especially using/following Lemmmy and Mastodon profiles/communities....
Physios For ME (physiotherapists/pt): One sheet printout: How To Work Safely With People With ME/CFS (www.physiosforme.com)
We often hear from people with ME seeking our support because they have to see a physiotherapist for a problem other than ME. This could be something like a shoulder injury, or following knee surgery, or neck pain etc....
Health outcomes for Long COVID are comparable with ME/CFS (news.griffith.edu.au)
People with Long COVID in Australia have poor health outcomes that are comparable with another emerging disease known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).