15/
“Psychologists should provide belief, validation, & support, helping us endure the challenges of living with this illness. The focus should be on helping us navigate the emotional toll, such as self-blame, isolation, & grief, rather than attempting to fix or change the physical reality of ME/CFS”
14/
“ME is a neurological condition, it is a fluctuating life limiting condition that affects every part of the patient’s life.”
#MyalgicEncephalomyelitis #MyalgicE
13/
“Remember we are human beings. We are fighting every day to think of reasons why we should carry on. Please help give us reasons to. Help us find positives and look for little successes. We have lost who we were and what we were capable of. Most of us lose everything we based our identity from.”
Coagulation profile in hospitalized children with COVID-19: pediatric age dependency and its impact on long COVID development
Free full text
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1363410/full
#LongCovidKids nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver #CovidBrain nostr:npub1j92gv04tmkesqun87xgr4hnvzcwx0f49yyzl37pa7rew8uslugjs9j6nfj
1/
A popular article in the ME/CFS community that's in the Guardian today
#MEcfs #CFS #PwME nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
2/
Method of Participation: In order to claim credit, participants must complete the following:
1 Read the activity
2 Complete the online CME Test & Evaluation. Participants must achieve a score of 80% on the CME Test. One retake is allowed.
Visit www.mayoclinicproceedings.org, select CME,& then select CME articles to locate this article online to access the online process. On successful
completion of the online test & evaluation, you can instantly download & print your certificate of credit
CBS News: “Long COVID has affected nearly 7% of American adults, CDC survey data finds”
https://www.cbsnews.com/news/long-covid-americans-new-cdc-survey-data/
Includes a 6-minute video segment (presenter discusses topic with a doctor) plus separate text article
nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid nostr:npub1ua6wgn0vpjmh4ep4alvvj0z3hws4ap5yd3txyp6h04xn7atjh4qq25gx9n
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 nostr:npub1uw2zx53kpkrgjzav20gfrs02q83j4u45suw3gd590gmmczd6kj6skdpmne #novid #CovidIsNotOver
Recovery Position Statement
This 2-page document seems to me to be a fair overview of the topic, though will likely be disappointing for people unaware of some of the research.
https://www.emerge.org.au/recovery-position-statement/
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps
From: DecodeME the ME/CFS Study @DecodeMEstudy
DecodeME Recruitment is closing on November 15 at 5pm. Sign up and complete the questionnaire by this date to be a participant.
There will be time after this to provide your saliva sample
Sign up: https://shorturl.at/dklxS
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing
5/
"Spoon delegation isn’t always about the things you have to get done on your task list. Sometimes it’s about making the decision to put those spoons toward an activity you enjoy for your mental health — even if it means you’re going to be a little smelly — that’s what deodorant and body sprays are for!"
nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
6/
"But when those plans involve other people, the stress and guilt felt by having to tell them you don’t feel well enough to participate can be overwhelming."
nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #ChronicIllnesses
#Spoonies
#Spoonie
4/
"On the days that I decide I don’t have the recovery time or overall energy to take a shower, I give myself a baby wipe bath (which is just wiping myself down with a bunch of baby wipes), apply dry shampoo to my hair, and throw a little cold water on my face."
nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
5/
"Spoon delegation isn’t always about the things you have to get done on your task list. Sometimes it’s about making the decision to put those spoons toward an activity you enjoy for your mental health — even if it means you’re going to be a little smelly — that’s what deodorant and body sprays are for!"
nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
3/
"Now that I’m living with #chronicillness, I have to put serious consideration into much of what I choose to do throughout the day because it will have an immediate effect on Current Leslie, as well as risk having an impact on Future Leslie."
#chroniclife #Spoonielife #Spoonie nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
4/
"On the days that I decide I don’t have the recovery time or overall energy to take a shower, I give myself a baby wipe bath (which is just wiping myself down with a bunch of baby wipes), apply dry shampoo to my hair, and throw a little cold water on my face."
nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
3/
"Now that I’m living with #chronicillness, I have to put serious consideration into much of what I choose to do throughout the day because it will have an immediate effect on Current Leslie, as well as risk having an impact on Future Leslie."
#chroniclife #Spoonielife #Spoonie nostr:npub1x4n527e2rutv77w70tzjqkdw8quhvagcpjyqxump6nv2crfwhdwqx57h77 nostr:npub1qny4s7gyr3z7t9c8lzjk3qm69mk9nwanknwyznex4l344fp4lmmqkny0sg nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
New from Karl Morten group:
Developing a Blood Cell-Based Diagnostic Test for #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Using Peripheral Blood Mononuclear Cells
Free:
https://onlinelibrary.wiley.com/doi/10.1002/advs.202302146
"Raman profiles of blood cells can distinguish between healthy individuals, disease controls, & ME/ #CFS patients with high accuracy (91%), & can further differentiate between mild, moderate, & severe #MECFS patients (84%)"
Funding from ME Association; samples from @mecfsbiobank
#PwME nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
Shared with permission
Prolly is short for probably
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
“I've had ME for 16 years, & #severeME for 14 years after #GradedExerciseTherapy (GET), & being told the harmful advice to push myself left me much worse, severe, housebound & bed-bound half the day. In all the years since, I've never recovered from it” 😢😡
“the hardest symptoms to explain to people are how even mental stimuli can be exhausting & overwhelming - Light, sound, touch, motion, watching things or people move around”
https://meassociation.org.uk/rnpf
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #mecfs #pwme #cfs
Transcript: Q2 2023 AIM ImmunoTech Inc Earnings Call (Aug 16)
https://finance.yahoo.com/news/q2-2023-aim-immunotech-inc-040749819.html
This is the company that owns #Ampligen. There is quite a bit of discussion about the ongoing placebo-controlled trial for #postCOVID condition of fatigue #AMP518
#PwLC #PostCovidSyndrome #MEcfs #CFS #PwME nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #LongCovid nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22
3/
9 responses replying to White et al "Anomalies in the review process & interpretation of the evidence in the NICE..." have now been posted to
this including a new one today from @joan_crawford1 that
disappointingly hasn't been posted by JNNP
nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
24/
I like patients being described as experts:
"Partnership between patient & health care providers should be based on trust, & consideration of their interactions as encounters between 2 experts with different, but complementary backgrounds (the patient & healthcare provider)"
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd
Long Covid Physio: Pacing
"Pacing is the balance between rest and activities. This video describes pacing, provides tips on how to pace when living with an energy-limiting condition, and identifies some of the common barriers people may encounter when trying to successfully pace."
Duration: 8.10 minutes
nostr:npub18fz872n76uamwc0kkvft8efrxe0zj4xmxqqe6xc55pe9gm6p2s0q9rhy22 nostr:npub1gxp6qn9ehf92pmvy7cl2r5l04vdctls6sr7gn3csf60ap65qdapsr58dpd #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #postcovid #postcovid19 #pwlc #PhysioTalk #OTalk